Thursday, August 16, 2007 6:33 PM CDT

HOT, HOT, HOT! Well, I'm late in keeping up as usual. But that can be a good thing if there's nothing to report. We closed on our new house today and our old house went on the market this past Monday. It took longer than we thought and lingering but moinor health problems did not help. We have already had our first showing with another appointment scheduled for tomorrow. We take possession of the new house on Saturday. We will be moving in gradually which is nice. Of course all we hear in the news is the mortgage crisis in the US with its global consequences as well as making it more difficult for potential buyers for our house. Hopefully we'll get an offer soon.
Health has not been too bad. My counts are low but steady. I have had a couple of viral infections: cough, severe fatigue and muscle ache, and frequent temperatures of 101 - 102 degrees though i did register 103.6 one afternoon. Since antibiotics are not effective and I'm already on an antiviral, all I can do is shake chills) in my chair abd watch for worsening symptoms.
Sophie continues to be a joy though she is entering her terrible 2's stage/ She certainly has a mind of her own. my brother-in-law, Mike, bought my motorcyle. We are contemplating selling the powerboat For the 3rd summer in a row I have not really been able to take care of or use it. (In cae anyhone ouit there is interested - a 1988 Four Winns 21 ft cuddy cabin with a 5.7 engine - around $6000).
Just heard from someone on this site wh read my journal because her father is newly diagnosed with T-PLL/ All for now.

Saturday, July 7, 2007 8:55 AM CDT

WEDDING/HOUSE NEWS - just a week ago things were pretty hectic around here. but the wedding turned out beautifully. a simple 5 minute ceremony in a meadow at eagle creek park. nathan and coppelia surrounded by a semi-circle of friends and family, exchanged very personal vows then were pronounced husband and wife by evereyone. afterwards a vegan dinner and wedding cake under the stars and a tent, music, etc. they left for Vacouver on a 2 week vacation. a group of out-of-towners gathered the evening before at our house for a garden party. I made way too much food - 19 dishes and too much of each,mostly on the grill, for the folks from Bejing, Buenos Aires, DC, san diego, and Boston. probably our last get=together at the 'old house'.
we have a bid accepted on our new house, a ranch with basement on a 100' x 300' lot close to glendale mall. it will be a lot easier to care for, being just on one level. I went out last saturday and bought a summer suit for the wedding and a john deere garden tractor for the new house. needless to say we have spent most of the week working on our house again, now focusing on cleaning out the basement. we have rented a 10 x 10 storage space and are slowing filling it up. we hope to have it on the market with 10 days. of course the recent 60% increase in property taxes will not help but it presents well with all the improvements we have made and has great curb appeal due to the help of landscaping friends jan, lisa, marcia, lou and david several summers ago.
i sold aaron my beloved '97 maxima since his car died and i wasn't driving but once or twice a week. kept the truck though.
my health continues to be up and down. uo until almost the wedding i was spiking fevers of 102 - 103 every few days, plus a lot of fatigue. i have been doing more work with fixing the house,etc. and consequently seen an increase in the number of scrapes, bruises and scabs on my arms and legs. one thing i can laugh about now thought still bugs me. i have been complaining about my visual acuity even with the new lenses. these took almost 6 weeks to get from Ossip due to miscommunication on their part. it turns out that they put the corrective lense in my left frame, the eye that i am completely blind in ! no wonder i couldn't see any better looking through plain glass! i get my new lens this week. it will be good to be able to read without eyestrain again.
all for now. i need to take a load to the storage unit before it gets too hot. tish is busy in the basement. i have to take numerous breaks when i tire out so the burden of this clean-up usually rests with her. we close on the new house august 15th and have a house inspection this monday. will keep in touch. dennis

Saturday, June 16, 2007 2:08 PM CDT

MAY/JUNE I am way overdue this time which can be good news if it's because there's nothing much to report. ealthwise things have been generally good, settling into an acceptable chronic pattern. My counts remain on the low end but stable. wbcs just under 2 thousand, hemoglobin in the low tens, and platelets in the 50s. My arms and legs are a mess, covered with bruises, eccymosis, sores, blood blisters, and scabs. I was working at Ben's and started bleeding a half dozen times. he asked me if I wanted a bandage. I told him if I put one on every injury I would be covered. I am having more now since I am still on prednisone and with the spring I am working on the house and vehicles more.
I was well enough to travel this past week, this time to New jersey since my drug company had been bought out by Bayer Pharmaceuticals - not as exciting as Seattle. I was to leave on Tuesday. But after waiting 7 hours at the airport, 4 of those trapped on the plane, they cancelled my flight due to weather out east. Everything went fine but I started to feel increasingly bad, like the flu, on the way back. By the time I reached home I felt very weak and achey and had a temp of 101.9. I called my physician but we decided to see how things looked the next morning. he offered to admit right then but we were babysitting Sophie and I really didn't want to go anyway. I slept most of the following day but no fever. Today I am just a little weak.
Two major events approaching - Nathan and Coppelia's wedding on the 30th with a big garden party the night before (with me catering, of course) and putting our house on the market. e have been continually working on the house in preparation for both events. Tish has done a lot more than me due to my energy/strength issues. we have been slowly filling Ben and aaron's garages with boxes
we are really looking forward to having all the family back together again, especially since this will be the last of a long and memorable collection of gatherings at our home of 20 years.
My eyes are generally better, very few floaters, though it's hard to get used to wearing glasses, especially progressive bifocals, again. we haven't found the perfect house yet but we have some possible candidates. there's a lot of stuff we have to get rid of. we had a successful garage sale with leftover items going to the local library or goodwill. My brother-in-law, Mike, is buying my motorcycle since my vision is impaired.
all for now. Sorry for the delay. will write again sometime after the wedding.

Saturday, April 28, 2007 11:24 AM CDT

SPRING! Another long time between postings which could be a good sign. My health has been better. My steroids are now below 20 mg per day which means that the more I exercise or keep busy, my muscles will start to come back. I can still get short of breath easily and I have to stop physical activity to take a break. But usually less of a need for daily nap, no fevers, and a little less fatigue.
My eye has healed nicely though I am having problems with 'floaters'. These are getting better but the second week after surgery it felt like I was looking thru a screen door. I was back last week and got a new prescription. I did buy some reading glasses at the drug store. I am always losing them.
A few weeks ago Tish and I went to Chicago for a conference for bone marrow transplant survivors and caregivers. It was sponsored by BMY Infonet and was very interesting. Met people who had their transplants as long as 18-20 years ago,
Nathan and Coppelia are coming in Thursday for a wedding shower on the weekend. We haven't seen them since Christmas. They will be surprised that Sophie has changed into a little energizer-bunny toddler.
Being sick over this winter has convinced me of Tish's argument that our house is really too big. Two stories and four plus bedrooms is a lot to take care of, especially when one of us is ill. Besdies the house needs a family. So we have decided to downsize. We have been getting the house ready to put on the market. We always stop to pick up informations sheets on other houses for sale.

Thursday, March 22, 2007 8:23 PM CDT

Well, I'm out of the hospital and back at my old job as keeper of this journal. Although I just read the past few entries and thought that Tish did a darn good job of capturing the last couple of weeks. It was good to have her there every day, reading me books, helping me to shower without feeling like a complete cripple, reading to me since my cataract had become so thick, teling me what was happening on TV when there wasn't any dialogue, and generally trying to keep me out of a funk. I am lucky to have her.
The surgery was a success. I wore the patch for 4 hours. When he took it off, the light was a little bright but I could read the clock on the wall. There was some splotchiness but it improved by today. Actually I have not been able to see this well without glasses since high school. Reading is still difficult. I have an eye exam scheduled in 3 weeks but today we bought a pair of reading glasses from the drug store and they seem to do fine enough. My eye will appear a little bloody for a few weeks. We went over the the opthalmologist's office today and everything looked okay.
Today I had some dizzy/heavy spells and my blood pressure still dropped when I stood up. So I am not sure we hit on the right answer with the cortisol/prednisone combination. This whole event is multi-factorial. So a lot is really up to me now - keeping myself hydrated and well-nourished, trying to be more active every day, and trying to keep out of a funk. Spring will help as long as I can find energy to actually accomplish something.
Tish is off all week for spring break so we don't have to worry so much about my falling. Sophie will be with us the next 2 days - that is always a pick-me-up. We go back to clinic on Friday.
Thanks to everyone for their support and emails to Tish the last week.

Tuesday, March 20, 2007 6:33 AM EDT

Just a quick update - things are about the same. MRI came back normal (great news!), thyroid seems to be operating fine, he still has a blood pressure drop and intermittant (sp?) sense of heaviness and weakness after standing for
a few minutes. PT is coming up - yesterday he could only walk back and forth in his room a few times before his legs started shaking and he had to sit down. They have switched his prednisone from 25mg one day and 5 the next to 20 every day to see if his body was having to hard a time adjusting to the lower dose every other day. Yesterday they did a bone marrow biopsy - Dennis has never taken meds with his BMB's (except local) because he didn't like how they make him feel for the rest of the day. Since
he wasn't going to be doing much the rest of the day :) he had decided to go ahead and be drugged for this one. A little bit before the biopsy he realized he no longer had an IV, as it was dc'd after the IV came out accidentally on Sunday and he wasn't particularly dehydrated anyway. He has been stuck so many times and his skin is so fragile from the prednisone he decided he would do without the pain meds rather than go through having an IV put in again. I had to work in the morning and when I called him was surprised when he said he'd already had the BMB because he didn't sound particularly loopy. Results from the biopsy will not be back for a few days.
We don't know what, if anything, is scheduled for today. Dr. Dugan is on this week and was very busy yesterday with several procedures as well as his regular rounds, so they didn't have much time to talk.
Tomorrow is his eye surgery - feels like Christmas eve! It is a very routine surgery with an extremely high success rate, but we could still use some prayers.

Tish

Saturday, March 17, 2007 4:59 AM EDT

Not much new to report. CT scan and chest x-ray normal. Yesterday was a busy day - MRI of the head in the A.M. as well as physical therapy consult. Test for cortisol levels done Weds. came back showing levels low, so they did a cortisol uptake test. Drew blood then gave a cortisol injection through his IV and drew blood again after 30 minutes and one hour. Low cortisol levels could affect thyroid so thyroid hormones are what they are looking for.
They will do a bone marrow biopsy next week to rule out relapse. Blood work does not indicate relapse, spleen is enlarged, but actually smaller than the last time they scanned it, there are no palpable nodes, flow cytometry looked okay, although his T-cells show both C-4 and C-8 (I can't explain it all, just that that is unusual in adult cells). The cells also looked like that in August, however, when his last bone marrow biopsy was normal, so they are not overly worried, just want to be thorough.

He is eating! He has gained a pound or so (I guess even the hospital food is better than what I can give him!):)
He still gets shaky after a few minutes upright, but did walk back and forth in the room until that occurred. I read him the last chapter of the "Mom's Marijuana" book by Dan Shapiro, PhD., a survivor of twice relapsed Hodgkin's Disease, auto BMT and salvage chemotherapy. I highly recommend it to anyone interested in the cancer experience from a patient's point of view - besides providing great insights it is well written, sometimes laugh out loud funny and generally a good read. Oops, for a moment I thought I was preparing for book club...
We also watched one of the unit's videocassettes of Ransom,
an action packed Mel Gibson movie - great escapist fare. The room was dark near the end of the movie, Dennis and I were both sitting on his bed, when the night nurse came in to introduce herself. I actually had almost forgotten where we were...

I am bringing Sophie along to the hospital with me today. She will brighten the room and Dennis' spirits as well as charm the staff. Ben will come by to visit and pick her up after work.

I'll update when there is news ... Tish

Wednesday, March 14, 2007 7:43 PM CDT

Well, its been a rough few weeks. Dennis (yep, its Tish writing) has gotten progressively weaker and has lost a lot of weight. He finally ended up back on the inpatient unit today after three clinic visits last week and an unscheduled stop there Monday after his pre-cataract surgery appt. at the eye doctor.
Chest x-rays have been clear and pulmonary function test, though not as good as his previous one, was still within normal limits. The good news is its not BOOP (a form of GVHD of the lung). But what is going on? Counts are down as they always are when Dennis gets a bug and he has had a series of them this winter. Creatinine/kidney funtion levels were high, so the cyclosporine was stopped. Blood pressure medication was added back as his blood pressure was up. There is no evidence in the flow cytometry and other lab tests of relapse. His spleen is normal and there are no enlarged lymph nodes. His blood oxygen is very good - so why the shortness of breath? The latest concern is a weakness and dizziness when standing. He was found to have low orthostatic blood pressure (when standing)when we stopped in on Monday. At home Monday afternoon he fell after getting up to answer the phone. I stayed home on Tuesday (it was a beautiful day and Dennis did enjoy sitting on the patio and resting outside on the hammock) because I was nervous about him being alone. Today I went to my school for a few hours and Dennis was given strict instructions not to try to shower or go downstairs until I got home. I got him breakfast, his meds and encouraged him to drink fluids when I did get home, but when he got in the shower he became very shaky after only a few minutes and almost fell when I tried to help him out. I thought that this was too much and warranted a call to clinic. The docs conferred and decided he really needed to come inpatient so they could get this figured out.
He has lost about six pounds since last week and is down to about 139 pounds. That is even less than I want to weigh! This is a bit confusing also since though his appetite is poor he is eating two meals a day and doing some snacking - jello is a must on the menu - between.
They had a hard time starting his IV today because he is somewhat dehydrated and his muscle tone is poor. He went for another chest x-ray and a CT scan of his abdomen this evening. I will update the results of those and any other news as I get it.
Spring is coming and I am praying for a rebirth in Dennis' health also. I have asked him to envision himself healthy and on our trawler (still a dream) on Lake Michigan. Let's all keep that vision in mind! Thanks for caring - Tish

Friday, February 23, 2007 4:32 PM CST

SOPHIA WALKS! That;s th e headline. she walks more than she crawls now. she also spent the first night away from her parents onThursday and did fine with her grandparents.
As always I have both distressing news and good news. My eyesight is getting worse day-b-day. I have stopped driving, have invreased the font size on my computer to the max, and have amgnifying lenses in several rooms in the house. We called the eye doctor at home last night because we were afraid that it could be my retina not just the cataract. So he had me cime in today. The cataract is the only ptoblem but it has worsened dramatically. Surgery is svheduled for March 21. I am concerned how bad my vidion will be by then, Tekevision is blurred and I can hardly read.
Tiday was clinic day as well. My counts were basically the same. My exam was okay except for some wheezes in my upper left chest. The doctor wants me to watch for fever or other signs of pneumonia. Sophie went with us to both appointments and was well behaved as always.
Thw trip to Seattle was a success but tedious. I spent 12 hours atthe airport on Tuesday watching 4 successive flights get cancelled. Tish had to come pick me up in blizzard-like conditions. Then we were out of the house by 5;5. tISH HAD TO SHOVEL THE DRIVE AND NEARLY HALF OF THE 200' OF OUR STREET BEFORE WE GOT TOcENTRAL WHICH HAD BEEN PLOWED. i SAT BEHIND THE WHEEL AND NUDGED the car fprward. This took 40 minutes, making it almost too late for the flight. They kept putting me on different flights. I finally boarded the third and got to Seattle a little late for my presentation. So we rescheduled for Thursday and I stayed on until Friday. The trip was f good for me psychologically. The next class is the first week in May. Tish is planning to come with me.
I;ll close now as my back is hurting from being hunched just 6-7 inches over the keyboard. I may have Tishmake the next entry. Think of me on the 21st - it's the only eye I have left.

Friday, February 9, 2007 5:13 PM CST

COLTS WIN SUPERBOWL! That's the headline to call attention to this being a new entry. It's also most of the good news. Since the bout of illness started over a month ago, I have felt the most debilitated since the weeks after transplant. No energy, shortness of breath on exertion, sleeping a lot, taking naps, stomach upset, and periodic diarrhea. I have felt a little better the last two days. This is good because I am supposed to travel to Seattle next week to speak for Berlex Pharmaceuticls. It's really good for me psychologically, I make a little money and it gets me going something.
We are back to every two week clinic visits. We usually take Sophia with us - the staff loves her, of course - but didn't today because of the extre,e cold weather here. Also I got my second infusion of gammaglobulin which takes 2 hours. It boosts my immune system. We will do it monthly during the cold season. We found out that my level was low while I was in the hospital.
Otherwise my counts have improved. My platelets are in the 60's. The doctor thinks that my continuing digestive problems are due to the virus still. Hopefully this dose of gaamaglobulin will help me fight that too. The doctor says that the good side of havinf a little GVHD and small infections is a sign that my leukemia is also be held in check by the same mechanism.
The steroid is has caused a cataract to develop in my good eye. I got a new lens with a stronger prescription but I still can't see well. It's become increasingly difficult to drive. Even watching TV the screen is fuzzy when it's really not. I spoke with my eye doctor today. I think I will plan on having the ctaract surgery in the next month or two. This vision loss is too big an intrusion on my quality of life.
Sophie comes over tomorrow. That's always something we look forward to`. Aaron was over for dinner tonight. He was in Methodist hospital overnight for flu-related dehydration when I was in St Francis. He took care of Raleigh for us. We had a big SuperBowl party at my mother's. All for now. Hope hope the news next time will be more positive.

Thursday, January 25, 2007 9:26 PM CST

Just a short update. Dennis came home from the hospital Sunday, with a prescription for Zofran for nausea and a mild BP med he needs due to effects of the IV antibiotic. Went to fill the prescriptions and, since we have not yet met our deductible, the generic Zofran was $725! I thought that was a bit much for an as needed med, so we got the script changed to Reglan - much more affordable at $5.00!

I had hoped Dennis would update, but he is still feeling pretty lousy and fatigued. We go to clinic tomorrow for a check up and more tests. While in the hospital he had to have another Neupogen injection and blood transfusion due to low Hemoglobin. Bilirubin was a bit up, so they will be looking at his gall bladder and liver also.

Things are a bit discouraging right now - sometimes its hard to keep the big picture in mind when the day to day is so difficult. Maybe we'll have better news tomorrow.

TIsh

Thursday, January 18, 2007 9:18 PM CST

This is Tish updating Dennis' page - a sure sign that there has been a bump (albeit a minor one) in the road. Dennis was admitted to St. Francis Hospital via the ER early Tuesday morning. He had been plagued by recurring viral infections since late October, the latest being an upper respiratory/sinus bug he got before Christmas and couldn't seem to shake. We were at Clinic Thursday for six hours getting IV fluids (well, Dennis was getting the IV, not me)and chest/sinus x-rays - both clear. He was sent home with a prescription for an antibiotic, an appt. for next month and instructions to call if things got worse. Things got worse for me that night which I spent suffering the effects of an intestinal virus. This is an apparently especially nasty, highly infectious bug which Dennis began having symptoms of on Monday. We were in contact with the doctor trying to manage things from home, but by Monday evening it was mutally decided a trip to ER was in order. Since he was so puny and dehydrated, his white count was very low (.68) and he was neutropenic, they gave him a shot of Neupogen, started him on IV antibiotics and fluids and shipped him upstairs to the BM unit. We had hoped he would be home by yesterday or today, but he continues to feel poorly, has occasional bouts of the intestinal yuks and off and on fever. Since his gamma globulin was on the lowish side, he recieved an infusion of gamma globulin today and will get one once a month for the next three months. Hopefully that will give his immune system the boost it needs to get him healthy again.

On the bright, big picture side, his blood continues to be all donor and there is no sign of leukemia. Gotta hang on to that...

Keep us in your thoughts and prayers.

Tish

Thursday, December 21, 2006 7:50 AM CST

This is my pre-holiday entry. I did post 3 new photos but they came out larger than I intended so you'll have to scroll up and down, right and left.
I am sad to report than my friend and fellow T-PLL patient, Penny Garrett=Toma, died of her disease 2 weeks ago, only 3 weeks after they started treatment. From my viewpoint they might have started diagnosis and treatment of her relapse sooner. But that may just be Monday-morning quarterbacking. Penny was from the Arlington/DC area.
This whole episode caused Tish and I some increased anxiety. It was good that we were able to talk to our doctor last Friday to help put things in perspective. We feel better but Penny's death is a reminder of how quickly things can change.
My counts were lower, particularly my whites (1.5) and hemoglobin (9.6) with my platelets staying in the 50's. I have had issues with sore throats and cold symptoms for the past few weeks, So I have to be careful of symptoms progressing with such low white counts (only 700-800 neutrophils).
More disturbing subjectively has been a gradual worsening of vision in my good eye. I have hadincreasing difficulty driving, especially at night, and especially being able to read street nsmes and other signs. The television is even unfocused from just 8 feet away. I made a quick apointment with my opthalmalogist. He wrote me a new perspcription for my eyeglass lense even though these are only 8 months old. He says my vision is due to worsening cataracts. The development of cataracts is related to my steroid use and is irreversable even after I stop taking the drugs. I read that 80% of patients on long-term steroids of 15 mg per day are likely to develop cataracts. I started at 80mg on March and am just now down to 20mg. So it looks like a cataract surgery will be in my future. While I understand that such surgery is now routine and quite successful, since I only have the one good eye left, I look forward to this with some trepedidation.
On the domestic side our gutters, the final phase of our house restoration were finished yesterday. Now I can put up some Christmas lights on the lower part of the house. Dorothy and I went out a number of weeks ago, looking at used cars. After a full day ofg searching, we found a nice '03 Hundyai GX350L with 43K miles and a factory warranty. This is a full-size 4-door car with leather, moonroof, bells and whistles. Ben was amazed at the room in the backseat the first time he put Sophie's carseat in. We found it at our credit union so thay also got 2% of the financing rate. The car was repossed and was priced under blue book value.
I have been trying to sell her sports car though this is not the best time of year for that. Anyone interested in a low miles '03 Eclipse in great shape, please get in touch with me.
I'll close now and catch up on the holidays later. A blessed and joyful Christmas to everyone.

Tuesday, November 28, 2006 9:17 AM CST

Well, I have been putting this off long enough but I want to get something down before the holidays. Things have been busy with the house with workman here almost every day for the past month, partially a race against the weather. The new chimney looks nice. Then the roof went on, a slate blue. The house has always had a brownish roof. So we spent a lot of time considering the color scheme - siding, trim, window wrap, shutters. We went with pale blue siding, medium blue trim and gutters, white window wrap, and finally red shutters to offset the coolness of the blues. This week they are working on the metal work, windows and flashings.
Last week I got an email from a friend whom I have never met - Penny has T-PLL and has had Campath and a stem cell transplant (3 years ago, I think). She had developed a rash and thought she was relapsing. A node biopsy and CT scan confirmed that the leukemia had indeed returned. I spent a morning researching on the internet, locating a new protocol for T-PLL that combines Campath with another drug, Nipent or pentostatin. Dr. Dearden in London confirmed that they have had success with the combo. I emailed the abstracts and protocol to Penny for her oncologist.
I have not heard from her so I don't know what therapy they are trying. But she does sound despondent and has spent the last week sorting out her affairs, apparently per her physician's advice. Penny is 64 and cares for her aging mother who seems to have Alzheimers. She sounded like her leukemia was progressing rapidly. She used the term 'aggresive' which is always used to describe t-pll.
This has made more of an impact on me than at first. The remnder that the disease can return and progress quickly. My research uncovered a 2006 abstract by Claire Dearden that characterized relapse as "inevitable". I guess since I have been dealing with the chronic effects of my transplant and constantly adjusting to that, I have not thought so much about the possibility of an acute return of my leukemia.
But life goes on and that's the only way I can appraoch it. Nathan and Coppelia have selected June 30 as their wedding date with ceremonies to be at a quaint reception hall tucked away in Eagle Creek Park. Sophie is getting bigger, crawling like a bug, talking like a duck, and developing more of a personality. She particularly likes Raleigh and wants to feed him from her high chair at meals. Today Ben and Dorothy and I are going out to look at used cars, possibly a Camry or Accord. Her Eclipse sports car is getting too small and inconvinient for child hauling.
Last month Tish and I went to Metamora, Indiana for her birthday. It's an old canal and railroad town and offers rides on each. We arrived the afternoon of their Halloween celebration. The small town, without even a single stoplight, was filled with hundreds of famiiies in costume going from store to store geeting treats. It was the topic of local conversation in the dining room of our B&B at breakfast Sunday. Unfortunately I developed a fever during the night - 101.2. So we headed back to Indy. We couldn't use our cellphones until halfway home to call the doctor. He started me on 2 antibiotics and made an appointment for a chest xray the next morning.
Fortunately the fever resolved itself and the xray was clear. Several weeks before I had an abdominal ultrasound and a HIDA scan since my alkaline phosphate level was high and I had been experiencing some diarrhea. We needed to rule out GVHD. The scans were clear but my blood levels remain high. So I am still on steroids and cyclosporin which continue to sap my strength. My counts have generally been lower. My wbc's hovering either side of 2.0 and platelets back in the 40's and 50's. My skin is still thin so my hands and arms are constantly marked with bruises and bleeding sores from mild trauma - bumping into things, playing with Raleigh, working in the yard.
In Metamore we stopped at an antique and toy train store. I talked with the proprietor about Lionel trains. I got nostalgic since I grew up with Lionel trains, a special tradition around Thanksgiving and Christmas. I got our old "O27" gauge trains up from the basement. I have been reading about model trains and have visited a few hobby shops. I found out that my brother-in-law, Mike, is into HO scale trains. So I plan to lay some track under the Christmas tree, then later to begin planning a more permanent display. This will give me the excuse not only to clean out the basement but also to use up some of the lumber I have been saving over the years. A good winter hobby when it's too cold to think about boats. It's also a good way to connect with my past. It's also the sort of thing for a grandfather to do for his grandchild.
My other brother-in-law, Dick, remains in the hospital althought out of intensive care and in more or a rehab setting. For those of you out-of-town, our Indianapolis Colts football team has the best record in the NFL 10-1. After seeing a quarterback get sacked last Sunday, Iconfessed to Tish that my dremas of becoming a quarterback were dashed last year when I lost sight in my left eye - ha-ha.
Hopefully I won't have any pressing news to report before the holidays. Next week will mark my 60th month since diagnosis. And I will be celebrating my 5th Christmas - something I am both proud of and extremely grateful for. For all of you who continue to support me I wish the warmest of Christmas's.
PS I will try to post some new photos next week so check back.

Monday, October 9, 2006 9:02 AM CDT

Another long delay in writing, another mix of successes and drawbacks. I have been going to the clinic once a month for the last several months - the first time since transplant that I have been able to stay away from my doctors for that long. My counts had been trending upward but last Friday they had fallen again. WBCs were only 2.1 though with an accompanying fall in neutrophils which gives me an effective count of less than 900. That's enough to make me be more cautious around sources of infection. My red blood cells stayed in the 10's. But my platelets fell to 43K. No strong explanation for this. It could be the steroids. We did not further reduce my dose of steroids since I reported that I was having occasional diarrhea. This could signal GVHD of the gut (graft vs host). We just have to wait and see. I have instructions to call the clinic for any changes in symptoms.
Otherwise I have been fairly active but still have unpredictable bouts with extreme fatique. I spent one Saturday getting the powerboat ready to take to Lake Monroe and have a family outing, only the second this summer. But on Sunday I was too exhausted to even go outside so I just laid around all day even though weatherwise it promised to be one of the last great days of summer.
On the accomplishment side Tish and I traveled to Tucson for a retreat at Sunstone ranch for cancer survivors and their caregivers. There were seven couples. We had group sessions, survivor sessions, sessions by gender, a complimentary massage, and exposure to some complimentary therapies - meditation, music, Native American spirituality. The cost was partially subsidized by a grant.
Last week I traveled again, this time to Seattle to give a presentation to a class of new sales reps for Berlex, the company that markets Campath, my T=PLL drug. They paid me an honorarium, flew me out, picked me up in a Town Car limo, and put me up in a five star hotel, the Alexus. I arrived the day before and left the day after so I did a little sightseeing including taking the ferry to Bainbridge Island and going out for a ninety minute sail on a 70 ft racing sailboat. The talk went well. There were tears in the audience and they asked a lot of questions to that I spoke for 90 munites instead of the scheduled 45. They said that they wanted me back for the next class. I like to travel and it feels good to be able to make money for the household.
That household is getting expensive too. We have signed contracts for new siding, roofing, and gutters damaged by this spring's hailstorm. They don't make 8* woodgrained, gray aluminum siding anymore. So we are going with fiber-cement siding, a better product. But insurance will only pay for 2 1/2 sides since that is all that were damaged. We are also having the chimney rebuilt as it is in really bad condition. Work begins this week.
Also this week Nathan and Coppelia are coming to town to check out possible sights for their wedding and reception. We will also be having a big first birthday party for Sophie. We still watch her on Fridays and Saturdays, the high point of our week.
My brother-in-law is still in critical care in a Dayton hospital. Tish has gone out there several times to help out with the girls and to deliver frozen dinners.
I will close now but will try to add new photos but I don't always set my camera for the smaller size photos for use on this site.

Thursday, August 17, 2006 9:17 AM CDT

NEW PHOTOS! My mother just called to remind me that today is my birthday - that is transplant-wise, my second birthday. Friday we did a scheduled two-year bone marrow biopsy. I found out yesterday that it was clear with no signs of leukemia. My counts are generally good and my platelets have actually increased to 83K. I am now taking the steroid only every other day. I still have problems with fatigue although some days I almost feel energetic. Though I told Tish that I sometimes mistake enthusiasm for energy. As I try to do more physically the number of red bruises on my arms increases (due to the steroid effect on my skin). Last weekend I was up on an extension ladder in the garage, with the door closed, when the ladder shifted and slid from under me. I was dangling for a short time until I was able to get the ladder upright with my feet. So I have dark bruises on the left side of my chest. It is pretty sore, especially when I take a deep breath. Someone asked me what I was doing on a ladder. I replied, "Just trying to be normal>"
We had a great vacation on Cape Ann. The innkeeper at our B&B in Rockport is a former nurse. Breakfast was good and we always had lively discussions with the other guests. We went for a sail on a 63 foot schooner and also went whalewatching on the day the temperature topped 100 in town. We saw dozens of whales, some close-up, and got good photos. We visited several museums, some of them maritime. We ate a lot of seafood. We also met Coppelia's parents and treated evrybody to lunch on an outdoor deck overlooking the harbor.
The high temperatures were over by the time we drove to Boston. Over the next three days we loaded and unloaded 6 small vans of boxes and furniture. I did pretty well though I had to avoid carrying things up stairs as my legs were too weak. I moved things from house to porch, or van to steps. We had a nice visit.
Before vacation I took the powerboat in for work - the one in the photos. We will try to go out this weekend, and maybe even to a boatshow in Michigan City next weekend.
I have been trying to accomplish a few tangible things each day since our return. This makes me feel good when I succeed. Unaccountably my blind eye has begun to hurt periodically, not bad but distracting. So overall I feel lucky. Especially when I consider the situation of my brother-in-law, Dick, a retired professor at Earlham. A tractor overturned on him six weeks ago. He had crushed ribs, a collpsed lung and compound fracture of the clavicle. He has been in intensive care most of that time due to continuing complications. He is on a ventilator and they are planning a tracheostomy when he is more stable. So even as a leukemia and transplant survivor, it is not hard to count my own blessings.

Saturday, July 15, 2006 12:30 AM CDT

Overdue for an update. Two clinic appointments since the last entry. I complained to the doctor that even though my blood counts looked okay and his exam turned up nothing, I still felt terrible - extreme fatigue and listlessness, muscle weakness and trembling, difficulty concentrating. He thought this was all due to prolonged use of steroids. So he put me on a reduction schedule, taking 50mg prednisone every other day, then gradually reducing the other day over the next month until I got to 0. He also gave me a shot of erythropoetin which boosts my red blood cells. I am always with a hemoglobin in the 10 range when normal is 13-14.
I was especially concerned with my exhaustion since I was scheduled to attend the World Cancer Congress in Washington, DC. I was also assigned to moderate 4 sessions over the three days, introducing speakers, seeing that they stay on time, and stimulating discussion. I started to feel a little stronger though not until 2-3 days before departure. Fortunately my hotel was just one block from the convention center. I arrived at Reagen National, closest to downtown DC and offering Metro service (subway). Just a 16 minute ride to the convention center.
I tried to pace myself and things went well though 2 of the 5 days I felt awfully weak. I met a lot of old friends from around the globe and made some new contacts, setting up possible projects fopr the future. It is good for my mental health to be able to get out and do normal, productive things. You tend to get too isolated sitting at home, particularly with these increasing and persistent fatigue problems. So it was a successful trip.
At the clinic yesteday my counts were still about the same with my white cell count being a littlelower. Also my potassium was low, probably due to the cyclosporin, so now I take a supplement. We are also going to try to go a month before the next clinic visit, something I have succeeded at only twice over the last 2 years. I am scheluded for my 2 year bone marrow biopsy next visit.
The big news at home is that Nathan and Coppelia announced they are engaged to be married next summer with celebrations both here in Indy and in Bejing where her parents are living. We have a vacation scheduled in 2 weeks to stay in Rockport, Ma, just up from Glouchecter. Her parents are visiting Boston that week. We are hoping they all might come up to visit for a day at our seaside bed and breakfast inn. Later in the week we will go to Boston and help Nathan and Coppelia move in to their new house.
Aaron closed on his little house earlier this week. He has had my truck all week and is gradually moving his stuff in. Sophia is here every Friday and Saturday. She is uaually a lot of fun as long as we pay attention to her. But she doesn't like to take naps. I'll close now and will report again after our return from the East coast.

Tuesday, June 20, 2006 3:07 PM CDT

Another slow two weeks plus have gone by. I still don't seem recovered from my bout of pneumonia, still having a lot of fatigue and miscle weakness, and occasional coughing. Went to the clinic on Friday and my counts were fairly good: wbc 3. hemoglobin in the 10's and my platelets at an alltime year's high of 67K. The nurse mentioned that my chart was getting fat and that they have to get me better. Meanwhile Tish and I reflected that nearly two years after transplant we are still going to the clinic almost every 2 weeks - not the initial plan. Things had seemed to be a on a generally upward climb until my shingles infection at the beginning of last summer. Then the summer in isolation, my growing blindness, and thru the fall and winter a series of respirtory infections, all setting me back in energy and strength. But to balance that, I am still alive.
Tish and I went out to eat at our favorite chinese restaurant after clinic. We had initially planned to stay at a bed and breakfast in Rockport, In for this weekend of our 35th anniversary. But when we saw the forecast for temps in the 90's with high humdidity and my tendancy to get tired and short of breath, we decided to stay in town. We went to see the movie "Praire Home Companion" Saturday afternoon and then to dinner. Sunday I felt deathly tired and slept most of the day, getting up mainly because the kids had come for father's day dinner which Tish made. Monday I awoke late with a temperature, cough and feeling week and achy all over. My temp eventually went to 101 with some chilling. I was ready to call the clinic but my temp broke. when Tish found out she had me call anyway so today I went in for a chect x-ray. It turned out okay. My lungs even sounded fair. So we reckened it was just the larger lung passages, called it bronchitis, and gave me some antibiotics. It's a long,long road back to health.

Monday, June 5, 2006 7:20 AM CDT

Well,. here I am, ten days out of the hospital, doing better but not nearly up to par. My counts last Frdiday all shown improvement as did my chest xray. I was sure that my red blood cells would be down and I would need another transfusion. I have been exceedingly fatigued and get out of breath with the smallest exertion. I feel ready for bed at 7PM. I still have a cough and head cold symptoms so I guess I have a degree of pneumonis still and am deconditioned from being in the hospital.
I am anxious that time is creeping up. June is here already and I still haven't gotten the yard projects done yet even though Tish and I worked together thru the weekend and I at least started biulding the base for the new garden shed. I have to take many breaks and eeven set up a chair and CD player at the shed site. Once it is up and assembled I would like to start back working on the boats. It is June and I haven't even taken the cover off the powerboat. Boating seems like an annual Spring dream that comes and goes, giving way to hot weather, housre projects or illness. Hopefully this year will be different.
It looks like we will have a major house project though - new roof, gutters and siding due to hail damage. We are still negotiating with the insurance company. Construction companies are all backed up weeks and months.
Our living room is full of Aaron's stuff. His lease was up and he did not have the third roommate needed to afford rent. He is starting to entertain the idea of using his inheritance money to buy a home and pay a mortgage oinstead of rent. He, Ben, and Sophie were over for a cook-out on Sunday. It was nice to look out on the lawn at everyone sitting on the grass, watching Sophie in her new swing. The backyard is becoming, as it was during my long convalescence last summer, my favorite room. We bought new old wicker furniture from a friend of my mother's who was m,oving to a smaller place. We bought a lot of annuals, roses and periennials this year, bringing the yard to life, especially the new flower garden off the porch. It is also nice to have a project Tish and I can work on together. Perhaps I knew at some level that no matter how wonderful and exciting my boat dreams, that due to my persistent health issues I would be spending a lot of hours here at my own home.
I'll close here and will try to post some new photos later today. dennis

Saturday, May 27, 2006 6:39 PM CDT

Sorry for not updating - I thought Dennis had done it, but guess he didn't feel up to it yet. He was released on an oral antibiotic yesterday and has been taking it easy. He feels much better than earlier in the week, but still worn out. He has a clinic appt. Thursday and they will do a chest x-ray then to make sure his lungs are improving. I'm sure you'll hear from him soon. Tish

Thursday, May 25, 2006 9:51 PM CDT

A quick update - Dennis continues to improve and we hope that he will be released tomorrow. The only not so good news today is that the infection is affecting his counts - for the first time in almost a year Dennis had to have a transfusion because his hemoglobin dropped below 8. His white count and platelets are also down from the day before but are not too low. Once this infection is cleared up, his counts should build again. We are both looking forward to a homecoming tomorrow, so keep your fingers crossed with us!

Tish

Wednesday, May 24, 2006 6:49 PM CDT

This is Tish entering - for the second time as my last entry seems to have dissappeared. Dennis is in the hospital being treated for pnuemonia and asked me to update the page. He has had a cold, but not a particularly bad one. Tuesday morning he awoke with significant pain in his upper left chest and called out for me. Dr. Akard advised us to go to St. Francis ER. The docs determined his heart was fine, but the chest x-ray indicated something, so they followed up with a CAT scan. The ER doc came in and said they were admitting Dennis as the CT scan showed a MASS in his left lung. MASS is a scary work when it relates to medical issues! After he went up to the Bone Marrow Unit, however, his doctor came in and told us they did not think it was a mass, but more likely pnuemonia, for which they began giving him antibiotics. Of course if it is pnuemonia, it was an atypical presentation as he had the chest pain, but not the significant coughing and fever that normally accompany it. I say of course, because atypical is typical for Dennis! Dr. Akard reminded me that I had once said that just once I would like the doctors to tell us that Dennis had a "classic case" of anything! Fortunately, later in the afternoon his temperature did go over 102. I never thought I would say "fortunately" about a high temp, but in this case it increases the likelihood that it is indeed pnuemonia and not a "mass". Dennis' fever broke last evening and has not been back. The pain is less constant and less intense. The infectious disease doc aid both are good signs that the antibiotics are taking care of an infection. He did order more blood drawn to test for a number of more "exotic" diseases, though, just in case. Dennis is still pretty tired, but his appetite is good and except for the IV in this hand and the hospital gown, he looks great! Hopefully he will be coming home within the next couple of days. I will keep you posted.

Monday, May 1, 2006 6:39 PM CDT

I thought now is a good time to update. I'm getting ready to go to Boston to see Nathan and Coppelia while I attend our national oncology nursing conference, about 5000 in attendance so it's apretty big deal. Nathan and I have been working on a graphic design for my new business cards, stationary, etc. He came up with a real attractive design, really professional looking. We emailed back and forth making small changes. I want to get back itno some public speaking. All the major drug companies and cancer organizations will be represented at the big 'trade show.' Speaking will once again allow me to share my personal experiences, get a little extra income, hopefully a chance to travel, and I can work when I can, usually just for an evening, or at a series of presentations at some day-long program. So this will be a great chance to network. I have been reading up on comsulting and public speaking. I am putting together a 'press kit' with Nathan's desogn worl sp that I will appear very professional. We went with "DP Healthcare Consulting" as a business name.
I am still on steroids and recently I agreed to restart taking cyclosporin, a powerful immune suppresant. This should allow me to start to taper off more quickly on the steroid though it will be another 4-6 months. I am already experiencing increased muscle weakness. Tish says that my face is filling out and, at this point, I look healthier and not so drawn. I just hope it doesn't continue too much so that I develop the classic steroid "moon-shaped face". I am still having problems with insomnia and almost never sleep past 6:30 which is okay. It's when I wake at 4-5 snf csn't get back to sleep thqat I know I will have a slow day. The steriods keep my mind going but not always my body too. The cyclosporin causes a bothersome hand tremor which should fade in a couple of weeks. I am still in a good mood most of the time due to the steroids and the fact that it is spring. But I told Tish that feeling euphoric all the time can be tiring in itself. All in all though I am not complaining. To me this seems to be the most enjoyable spring in my memory.
I went to a dinner last week with members of the Team in Training that I am an honoree for. They are training to run in a marathon in Alaska this summer. I think they have to raise at least $3500 each to race. My jhob is to be the connection to a real patient and to inspire them, especially those last few miles. Tish and I receioved in the mail a wonderful girft from some people we didn't even know who have been reading this journal because they were connected with Team in Training. More on that in a leter entry.
Tish and I went downtown Friday to order me some safety polarized sun glasses with precription lenses. The owners of this small optical shop had donated a $100 certificate which I won at the Leukemia Society's dinner for a $45 bid. We took Raleigh as the owners also kept their dog in the shop. Across the street was the "3 Dog Bakery" so we stopped and bought Raleigh some treats,then we allwent to have luch at this outdoor bar/cafe. Everyone was real nice and the first thing they did was to ask if Raleigh would like a bowlof water. The weather was perfect that day and I know it wasn't just the steroids.
Well I am rambling on. I'll just close with saying that we took my mother out for an early birthday celebration at her favorite restaurant Hollyhock Hill. Raleigh didn't come to this one but Ben, Dorothy and our little Sophie did. She was a doll the whole dinner.
Thanks for listening. Dennis

Monday, April 17, 2006 7:13 PM CDT

It has been a long time since I wrote and a lot has transpired. I gave posted NEW PHOTOS so check those out. On the medical side I continue to do fairly well though I am on steroids. They are great for short-term use - weight gain, increased attention and mood. But also cause insomnia. I began taking Ambien because I woke up at 4:30 and could never get back to sleep. I switched to the continuous release form and now manage to sleep til 6:30 or 7:00 most days. This is a real role reversal, getting up before Tish. I have learned to load and start her coffee machine for her before she awakens. This system works well for me. I get more done each day, not only from starting early but also having the greater energy. Every few days I run into a sleep deficit situation and lag about.
Long term steroid use is not such a good situation - causes "moon'face" and your muscle mass to decrease despite any kind of exercise program. I was hoping to start reducing my dose two weeks ago since my rash and itching had abated, but my doctor says it was too early and to count on being on steroids for 6 months or so. If we backed off too soon and my GVHD returned it would just be that much harder to get under control.
In the meantime everyone around me seems to be enjoying my new outgoing personality, steroids also inducing a sense of euphoria. I talk more to everybody - Tish, family, neighbors, people in stores, etc.
One unexplained medical event. A week ago I noticed that I was feeling chilly but it was cool outside that morning. I started to actually shiver and chill about a half-hour later. My temp was just 98.4 so I thought it would pass. Then I started chilling more violently and called Tish at work just to talk. She said she was on her way. I was covered with sweaters and blankets when she got home and my temp had gone to 101.7. She called the clinic and we were on our way. They got me right in, took blood samples and started an IV with a liter of fluids and IV antibiotic. I became very weak and drowsy and slept for a good part of the next 5 hours. The doctor came in to discuss what we might do. Keep me in the hospital was one option which I negotiated against. I was feeling better, temp down, and I could always return to additional outpatient IV antibiotics. He gave me scripts for two antibacterials and restared me on my anti-fungal drug. Also the week before we had added the anti-anxiety agent, Xanax, to counteract the racing thoughts that woke me in the morning. So now I am on three mood-altering drugs. No wonder I have a new personality. But I do regret having been able to reduce to just two meds per day. Now I am back up to nine - it just reminds you that you have a chronic illness and are still not a "well" person.
Strangely I have had no chills, fever or other signs of infection since then. My blood cultures returned negative. This Friday is my next scheduled clinic appointment.
The weather has mostly been sunny and warm with occasional needed showers or deluges. But several weeks ago we had tornado force winds during the NCAA finals. One shyscraper lost hundreds of windows on three sides and they closed four of our main streets sururounding it for over a week. Last Friday we got hit by high winds, golf-ball size hail and rain. All three of our vehicles suffered obvious damage as did the front and west side of the house. We just reached the agent today. The two cars have $500 deductibles a piece but my '92 truck does not have comprehensive insurance. And my '97 Maxima may be considered totalled. The TV said that hail damage auto repair can run $2000 to $6000. We haven't heard about the house yet. Two hours after the hail, the sirens went off again as there was another tornado warning. So we spent an hour in the basement. We had lost power with the hail but it came back on at 5 AM.
Sophie spen6 the day with us Saturday as Dorothy finally regained her position as resturant manager. Sunday eveing we had a family dinner. I planned out new and untried menu and everything turned out great thogu I ran out of energy near the end and called Tish's sister Sharon to ask if she could bring some store-bought rolls as I knew I just couldn't do those made-from-scratch buttermilk biscuits. Ben also arrived in time to serve as my sous chef and assmbled the strawberry trifle and mashed potatoes with horseradish and scallions. Everyone was delighted and mystified as I filled the dinner and period afterwards with lively conversation and tales.
Raleigh, whose photo I posted also, got into Easter candy in the bedroom on Saturday and Easter baskets today. Chocolate is not good for him and can be dangerous for dogs so we worry in addition to being angry with him I had to laugh today though. I was picking up sticks in the backyard when I looked across and saw what looked like pastel Easter eggs spread out under the privet hedge. As I got closer I noticed that they were indeed the split halves of plastic Easter eggs that contained candy. Raleigh had carried each out of the house then happily sat and ate them with relish. All for now. As you can read, the prednisone causes me to be talkative on paper too.

Friday, March 24, 2006 12:45 AM CST

First of all I want to share that I have finally been able to post photos on this site - one of Sophia and one of she and me. I just set my camera at a lower resolution and the photos uploaded without problem.
Went to the clinic today, only making it for 2 weeks again instead of four. Actually I got a call last week with the results of my skin biopsy - probable graft versus host disease. I got started on high-dose prednisone, a steroid and the rash and itching have improved dramatically as expected. The side effects are good in the short term - increase energy, appetite, some euphoria, but also some difficulty sleeping. So I have started to be more productive during the day, getting more things done. I get up earlier and snack throughout the day _ I am still a tad underweight. It may have affected my counts too which today are better than in almost a year. My platelets are 68K - 36K is the previous high since my shingles infection last summer. My hemoglobin is in the 12's, almost normal, so I have more energy and think more clearly. My white cell count is even a little high, a direct results of the steroids on my immune system. Long term steroid use, however, has deleterious effects such as muscle wasting and 'moonface'. So I will start to taper most likely in a couple of weeks.
I have tried to harness this eneregy,keeping up with the house more, spending more time cooking, and starting to work on some of the boat parts in the basement that need to be varnished. I also converted my CV to a more dynamic resume and made up some business cards for being a "hea;thcare consultant" a vague term which would suggest that I cna give presentations as a nurse/patient/survivor to lay and professional groups. It was a good exercise for I remebered how much I had been able to accompish in my profession. My self-image was suffering from 2 years of being out of the world and dealing with multiple physical and emotional issues. So I feel more optimistic now though I am aware that at least some of that feeling is drug-induced.
On short notice and after discussion with Tish, I decided to go the the Oncology Nursing Society's annual Congress. Several reasons that I can afford this. It is in Boston so I can stay with my son, Nathan, and take the subway to the convention center. Second, since I am on disability I was able to register for half-price. Also, there is a very large healthcare exhibit there so I will be able to meet key people and handout my resume. Then if I get paid for speaking in the future, I can deduct what expenses I do have from my taxable income. First week in May.
I am enjoying read novels in large-print. I have started selling some things on ebay that we/ve had lying around with some success though not enough to balance some recent ebay purchases for the boat. Auctions can be a little addictive. You can see that this is a longer entry than usual - steroids! Tish says that I talk more now too. She and I attended the Leukemia & Lymphoma Society's Diamond Ball last Saturday. We were given tickets. We had a nice evening with an open bar, silent auction, and a little dancing.
I think I'll close now though I could probably go on and on. I trust that it is nice for you to be albe to read more unhesitatingly good news in this journal for a change. Thanks as always for all of your support. dennis

Saturday, March 11, 2006 9:14 AM CST

Well, I seem to be writing in this journal whenever I go to the bone marrow clinic which is now only monthly. Actually this has been an irritating month. I got another upper respiratory infection, the third in four months. It really lays me low for 2-3 weeks with increased fatigue, fever, and persistant cough. I am over most of the symptoms now. My blood counts were slightly higher than last time though all are still sub-normal. My platelets were 35k. The other thing that has been a problem is increasing itching all over my body. I scratch so much that I have sores all over. At the clinic my doctor did a small skin biopsy, called a "punch" biopsy. A likely explanation is a resurgence of my skin graft-versus-host disease. I started back on steroids which is a small hassle. Actually a minor case of GVHD is a good sign that the graft versus leukemia effect is still working. We will get the biopsy report back next Tuesday or so.
Otherwise I have been doing well. My insurance company is reviewing my case for disability again. My eye still bothers me or more precisely, I am still adjusting to the "acquired monocular vision". Reading is fatiguing unless it is large type. I bump into doorways on my left side sometimes. Driving at night in the rain is hardest. And it is difficult to find things in drawers and closets or in any low light situation. This will be a problem with many nursing jobs. I am exploring different employment possibilities considering all my experiences including the international ones. In any case I am not particularly anxious to return to work right now. There is also the issue of not having any sick time and being exposed to frequent minor illnesses. Also if I get a job with someplace other than Community, my disability carrier and claim will change.
Tish just got back from a week in Florida. She went with her sister, Sharon, and stayed with her parents near Fort Myers. I am starting to varnish teak trim that I took off my sailboat several years ago. I am dreaming of a possible cruise in the Gulf or Lake Michigan this summer. We went to Ben and Dorothy's last night, msinly to see little Sophie. She is awake more now, smiling and making cooing sounds. Well, that's all the news that is news. Thanks.

Saturday, January 21, 2006 4:38 PM CST

Well,I guess this is my monthly update, the first of '06. I had a clinic appointment last week. No real changes. My counts up slightly - hemoglobin in the 10's, platelets 26k. We decide that I don't need to come back for a month instead of 2 weeks. Progress - though the last time I went a mnonth I ended up in the hospital with the shingles. There is still talk of a splenectomy, especially if my counts do not improve. The longer my circulating counts remain suppressed, the less likely that this is due to the viral infection and the more likely it is due to my spleen malfunctioning.
I also went to a new retinal specialist for a second opinion. This doctor is a professor at IU medical school. After interviews and various exams with the nurse and the resident, we meet with the new doctor. Not much that we did not expect. That my retina is too far gone. There are two tears gradually approaching each other. The bottom portion is crumpled up like a piece of tissue paper. A surgery would have less than 1% change of success. Even then success would be defined as being able to see light or shapes only, not real vision. He also told us that my left eye will likely atrophy or shrink over time - months or a year - and would turn white. I could then choose cosmetic procedures like a colored contact lense or even an entire prosthetic eyeball.
We went out to eat Mexican afterwards. I told Tish I like Mexican and Indian food as most food seems to be more and more bland tasting. I still itch around the left side of my head and sometimes scratch until I bleed a little bit. This is still the virus affecting my trigeminal cranial nerve.
With the new year I decided to make some resolutions, to put some order, control, and connectedness back into my life. My illness has tended to overshadow everything. And it shouldn't. I need to focus on the fect that I am alive when I didn't expect to be. I will try to become more engaged with life. I am going to be an team honoree again for the Leukemia & Lymphoma Society's Team in Training. Basically I serve as a 'mascot' or inspiration for a group of people training for a marathon to raise money for the Society. I am also involved with judging abstracts submitted for presentation at next summer's UICC World Cancer Congress in DC.
Life goes on. Tonight we are going to a movie with Tish's sister, Terrence Malleck's version of John Smith and Pocohantos - the New World. Tomorrow we are having the family over for dinner. I am looking forward to a happy and productive new year - 2006.

Saturday, December 24, 2005 9:51 AM CST

First of all, on the holiest of days, I would like to acknowledge my gratitude to be spending my fifth Christmas since my diagnosis with leukemia. Four years ago I thought that it might well be my last. I wasn't even imagining that I would he here four years later. And I certainly didn't imagine that I would be spending Christmas 2005 with my enlarged family which now includes my lovely daughter-in-law, Dorothy, and our precious new grandchild, Sophia. Thanks also to all who have helped and supported me on my journey.
Well, my body is not letting me forget its dilemma. For the second time this month I feel victim to another viral infection, my body having little reserve immune capacity. I had severe muscle aches, a productive cough, chills, sweats, a sore throat and a fever of 101.7. We went in to the clinic on Thursday to have blood tests and a chest x-ray. I felt like death. I seemed to have bronchitis though not pneumonia. The doctor offered me the option to being admitted. But we decided that I would get hydration and an IV antibiotic in the office that day and come back on Friday (Dec 23) for more antibiotics. So I was in the clinic for 6 hours the first day but only 90 minutes yesterday. I actually felt well enought to finish making cookies and start pre-preparations for our traditional Christmas Eve Feast. The other distressing news is that my counts are back down again. Only 2.7 white cells with only 800 neutraphils, hemoglobin 8.7, and platelets back down in the teens. We are not in hurry to talk about removing my spleen as there is the possibility that the viral infections have suppressed my blood counts,
Because I was sick I had to miss my second opinion appointment with another retinal specialist. On Manday I saw my regular retinal doctor. This time he was able to visualize the top half of my retina and saw that it had tears and rips, probably caused by the h. zoster virus. So I seem to be totally and irrevokably blind in my left eye. I need to get new lenses and safety frames as I need to protect my remaining good eye. I have badly needed a new prescription for well over a year but had to wait as I have been on and off steroids which can affect vision. This has been especially frustrating. With only one eye to see out of, you want to be able to see well.
That's it for health issues. Nathan arrived safely from Boston just after midnight. The family is gathering here around 4:00 for festivities and the Colts game. I spent the last three weeks making ice lumineria with plastic molds. The freezer is full to the brim. But today, on Christmas Eve, the temperature will be in the mid to high 40's and rain is expected. Temps have been below freezing here all December. What luck!
But as I said in the beginning that by the time this evening comes, all I will be thinking of is how lucky and blessed we are to be sharing this Christmas together. Happy Holidays to all!

Sunday, December 4, 2005 3:31 PM CST

I have been struggling the past 2 weeks with flu-like symptoms - muscle aches and pains, increased lethargy, cough, nausea and anorexia. I spent a couple of entire days in bed. I am on my second round of anitbiotics. It appears to be viral so I just have to wait it out. The biggest bother besides not getting anything done is that I lost 8 pounds over those 2 weeks. I went to the clinic on Friday. My bone marrow biopsy report was good, a normal cell profile. My platelet count continues to climb into the 30's. I am still a bit anemic but my white cell count and differential are low but healthy and in the right proportions. My spleen is still enlarged but seems to be no larger, although I experience feeling "full" after not much food. The vote among the transplant doctors is 3-1 in favor of removing the spleen. However, I need to get over the flu so that I can start my 'childhood' and adult immunizations. After the slenectomy I would be vulnerable to 'encapsulated' bacteria, some of which would be 'covered' by the immunizations. Once the immunizations take hold, we could do the surgery sometime in Jan-Feb.
Tish had to go to another family function alone, or at aleast with my mother, because of my flu. It was a niece's wedding up in northern Indiana. Tomorrow we get to babysit again so Ben and Dorothy can go see the new Harry Potter movie. I am beginning to plan a new, more informal Christmas Eve dinner. The reason: a Colts football game at 4:15. In case you aren't keeping track, as of today we are 12-0 for the season, only the fifteh team in NFL history to go so far. So each game is a bigger and bigger deal. All for now. Thanks for keeping up.

Tuesday, November 22, 2005 4:10 PM CST

Well, I have been putting off this entry until I found out the results of my lastest bone marrow biopsy. The doctor just called to say that there was NO sign of leukemia. Both of us have been worried despite the doctor's prediction that it would be negative. I continue to have symptoms of an enlarged spleen - upper left abdominal discomfort, a feeling of fullness. And the last 48 hours symptoms of the flu - temps in the 100s, muscle ache and pain, extreme lethary - all signs of leukemnia also. But the proof is in the pudding (or biopsy).
We will still have to monitor the spleen situation with removal still an option unless my counts continue to rise ( small rise in platelets last weel, to 29k) and my spleen begins to shrink on its own.
The news on my eye is less good, though still indefinite. We did another ultrasound last week and discovered that my retina has become detached from the back on my eye. This can be repaired surgically but the doctor is not sure it will restore my signt. I did a goggle search and determined that my condition can be called "herpes zoster ophthalmicus". I may seek a second opinion as we feel that we don't communicate well with my retinal doctor.
Tish and I went to the opera last Friday to see "The Merry Widow" a light operetta with plenty of melodic tunes. A friend from the cancer center, Eric the physicist, gave us the tickets. Nathan and Coppelia had the house inspected. The report said that a new roof was needed. The owner's refused so they withdrew their offer. Planning a small low stress Thanksgiving dinner at home with just Tish and I, Aaron and my mother. Ben and Dorothy will stop by but are having dinner with her parents this year. I got some books from the library and am still trying to figure out how to post photos on this web site.
The news of my bone marrow is a great relief. It will be 48 months since my diagnosis. Back then I was hoping for 60 months - the longest survival in one Campath study. The anniversary of my diagnosis is always a bit anxious for me.

Wednesday, November 9, 2005 10:36 AM CST

Well, I admit that it has been a long time since I updated this page. It must be a month since I am to go in for my respiratory pentamidine treatment again. I was putting this entryu off for a week since I wanted to post some photos. Since the birth of Sophia Katherine, I have bought a digital camera. I am still learning to use it and print photos with it. I have been trying to post photos on this site for the past hour but I need to resize them (in kb, computer storage space) but have not been able to figure how.
Tish and I went on a holiday in the Smokies in a cabin outside Gatlinburg. We had a great time. The first day we went for a hike which Tish selected - "very popular, right off the main road, only 2 miles, easy". It turned out to be rated as 'strenuous", almost 1400 foot change in elevation to the top of Chimmney Tops mountain. I was huffing and puffing all the way up and down, slowed down even more by my lack of depth perception in trying to step over the rock-strewn trail. Also went horse back riding, to a small Mexican restaurant with bluegrass music, hot tubbing, exploring frontier settlements, seeing elk and deer, learning to drive curvy, one-lane mountain roadfs with one eye. We got a call from Aaron Saturday night. He was sick, vomiting, and panicky. Tish called her sister Sharon's house. Colin, our nephew answered, being the only one at home. We sent him to take Aaron to the hospital. He was admitted, staying for 3 days until his diabetes was back under control. Sharon and Tom, who works at the hospital, kept an eye on him, so we were able to stay on holiday. Last night we had all the participants over for a "Thank you" dinner. Ben, Dorothy, and Sophie too - her first time at Grammie and Grandpa's house.
On the health front not much has changed. My blood counts remain suppressed. This has perplexed the doctors all summer - no good explanation. I mentioned some recent pain in my left upper abdomen. So we stared to consider something called hypersplenism. This is where the spleen, whose normal job is to sequester used up cells, goes into overdrive and starts taking good cells out of circulation too. So when we returned from our trip, I went for a CT scan. Got the results last Friday and it did show an enlarged spleen. The cause of this is still unknown. My spleen was enlarged when I first presented with my leukemia and when I relapsed. The doctors discuss cases on Wednesday, today. They are going to compare this CT with 2 others taken when my spleen was enlarged. The chances are high that they will recommend taking my spleen out - a splenectomy. They will probably do a bone marrow biopsy (ouch!) again to see if my leukemia is doing anything.
My eye has not changed, absolutely no vision at all in my left eye. I see the retinal specialist again next week. He has been talking about surgery. But that is not a good idea with my platelets down (20K) and the risk for bleeding high. We would have to wait for the splenectomy and return of my platelet count to a safer level. With my spleen gone there would be the danger of infection from a variety of 'encapsulated' bacteria. So I would be on daily penicillin indefinitely.
In late breaking news, Nathan and his girlfriend are buying a house in Boston, in an area called Jamaica Plains. A five bedroom, older home. So with their relationship obviously serious, the arrival of our first grandchild, a restful holiday, and our new dog, Raleigh, turning out to be a good companion, the good balances out the troublesome health issues. Keep checking the site as I hope to post photos soon.

Tuesday, October 11, 2005 6:17 PM CDT

Another milestone that I thought I might never see has come to pass. Tish and I are proud grandparents of ababy girl, delivered 6 weeks early by Caesarian section, weighing in at 6 lbs 4 oz and 20 inches. She is doing well in the non-critical NCU. She reportedly cried loudly at the early birthing. No name yet though parents had narrowed down to a short list. Baby may be able to go home in a short while as her weight and breathing seem to be good. Dorothy is tired and thirsty, still on a magnesium IV because of the dangers of seizure. Tish went to the hospital early in order to talk with the doctor. Dorothy's liver functions were higher this morning. Thirty-four week deliveries are difficult to induce so that decided on a controlled C-section rather than an emergency procedure down the road. Ben looks tired but happy, stroking his new daughters dark fuzzy head whenever he visited the nursery. A nurse at the hospital can sign - in fact she was present at Dorothy's birth 24 years ago as a signing-interpreter/deliver nurse!
My own health continues to improve. I went to the retinal specialist yesterday. He said he was able to visualize a section of my retina more clearly this time though I cannot see out of it at all, only blackness. On the other hand this allows me to go without an eye-patch which I needed when I had poartial fuzzy vision from my bad eye. We are hoping that if my platelets are on an upward trend, the eye will clear on its own and I will avoid a surgery that would have additional risks for me because of my post-transplant, post-leukemic condition. Tomorrow I go to St. Francis for my monthly 20 minute respiratory treatment with pentamidine which helps me to stave off potentially serious CMV infections. Three hospitalizations in as many months is enought for me.
All for now. We will let people know if we need to move up any of the gift-giving in advance of the baby shower on the 22nd. Grandpa Dennis

Sunday, October 9, 2005 9:44 AM CDT

The clinic appt on Friday brought good news - all Dennis' counts were up - we're betting that trend will continue and believe he is finally getting over the effects of the virus and infections that have plagued him for the past three months. His eye remains a problem, but he has been able to go out and about without the eye patch. Baby steps there, but at least they are forward steps.

Although the next news is not directly about Dennis', we ask all of you to also send prayers and other positive thoughts to Ben and Dorothy. Dorothy was hospitalized Friday with protein in her urine and elevated liver enzymes. ALthough she does not have high blood pressure, she is suffering from preeclampsia. Apparently the only available treatment for this potentially dangerous condition is to deliver the baby. Dorothy was given steroids last night to help prepare the baby's lungs to breathe on their own. They will wait about 48 hours to give the steroids a chance to perform that function, then induce labor. Although the baby will be six weeks premature, the NICU docs feel the baby should be fine, with few, if any, long term effects, barring other complications. They are monitoring the baby 24/7 and he/she is doing great so far. Dorothy is doing okay too, although this is very stressful for mom and day (and grandparents, too!). Tish

Tuesday, September 27, 2005 4:52 PM CDT

He's home again on ORAL meds, no IV, he is able to see a bit out of his left eye today and platelets are in the 20's for the first time in a long time! Good news all around! Thanks for your positive thoughts and prayers and continuing to care. Tish

Tuesday, September 27, 2005 5:50 AM CDT

The gram negative bacteria was a "wimpy" (docs very technical term) one, but the cultures grew two additional bacteria. We are waiting on the results on one "sensitivity" test (what antiobiotics is this bacteria sensitive to) to find out if Dennis can come home today and finish his course of IV antiobiotics here, or will have to be incarcerated for a few more days. Obviously we are hoping for the first outcome. Will keep you posted. Tish

Saturday, September 24, 2005 6:11 PM CDT

A quick note to let everyone know Dennis had to be admitted again today. Yesterday at a routine clinic visit, and about 10 minutes after changing his PIC dressing and flushing the lines, he started chilling which rapidly progressed to whole body shaking and vomitting. Luckily we had not yet left the clinic area and were ushered back into a room where cultures were drawn, Demoral and Ativan administered as well as IV antibiotic and fluids. We were to come back today for another infusion of antiobiotics, but got a call from Dr. Akard who said the cultures were growing gram negative bacteria, some of which can be very nasty. So instead of a clinic visit we prepared to visit "the other side". Dennis is not really feeling too bad, except for the cold he has had all week. Hopefully by Monday the cultures will show the infection is not a "nasty" one and he can come home to finish the course of treatment. In the meantime he is in room 604 at St. Francis. I was going to post his phone number, but of course I forgot to write it down before I left. I am heading back there in a few minutes to watch one of the movies we checked out of the library on the way to the hospital. I'll add the phone # later. Tish

Monday, September 12, 2005 9:44 PM CDT

Dennis asked me to update his Caringbridge page today - quite a bit has been going on, so here goes...

Last Wednesday his left eye had been feeling pretty good and he was glad to be able to go most of the day without wearing the eye patch. However, late in the day he decided to cover his right eye to check the vision in his left. When he had been able to tolerate the light, his vision was okay. On Wednesday he found that he could not see out of his left eye at all. We got in to see the opthalmolgist on Thursday who saw a lot of inflamation in the back of his eye, but couldn't really tell what was going on, so he referred him to a retinal specialist. From there we went on to the BMT clinic and found his hemaglobin down to 8.8 - we were expecting it to be up as he had been feeling so well - and his platelets about the same, still very low (13K). The BMT docs were interested in finding out more about the eye also, wondering if the low platelet count could be causing some bleeding.
The visit to the retinal doc gave us a little more info - although I was frustrated, as was Dennis, that he kept talking to me instead of Dennis. I wanted to tell him that the problem was with his eye, not his ears or his brain. Anyway, he could not see into the back of the eye because it was very foggy due to clumps of cells - white cells and dead virus cells mainly, I guess, and conversely that was at least one reason Dennis couldn't see out. He recommended changing either the type or dose of anti-virals Dennis was taking as a first step, and keeping his head elevated as much as possible. After consulting with the infectious disease doc, Dr. Jansen put Dennis on IV acyclovir every 8 hrs. administered at home through the PIC line which thankfully was not removed last visit. He slept on three pillow to keep his head elevated.
We had a return visit to the retina doc today. After waiting 11/2 hrs. we were finally ushered in where we waited another 20 minutes for the doctor. He immediately asked me how Dennis was doing keeping his head elevated. I told him to ask Dennis! Apparently he had wanted Dennis to sleep sitting up in a chair and was a bit upset that he hadn't been. Neither of us had heard that message, but Dennis will try to comply tonight. I think he will end up being tired as well as a bit grumpy about the IV's and not being able to see. The idea is that if the head is elevated the cells will settle to the bottom of the eye allowing the doctor to see in as well as hopefully allowing Dennis to see out.
He did do an ultrasound which showed the retina was not detached, but that there was quite a bit of blood in the eye. What can't be seen is where the blood is coming from, whether it is related to the shingles and/or the low platelet count etc. So for now, it is wait and see (all the while sitting and also not moving his much side to side or up and down). And keep up with the IV schedule, which got all out of whack since we spent 3 hrs. at the doc and another 40 minutes back and forth, and were VERY late with his second dose today. Making his third dose due around midnight. AARGH!
But we had a good time watching a movie with Ben and Dorothy on Sunday, and Dennis' right eye is much more cooperative now, allowing him to read and watch TV and movies - we saw our first movie out in three months Friday night - Batman Begins at the IMAX theater, which we enjoyed a lot. And - oh joy! - Dennis has taken up cooking again, trying out new recipes, fixing dinner every night. That is heaven for me, and I know he enjoys it, too.
Perhaps you all would prefer Dennis to do all the entries - mine seem more long winded. Thanks for thinking of us.
Tish

Tuesday, September 6, 2005 5:57 PM CDT

My last entry did not get posted so I am redoing it. Sorry for not keeping up. We had a lovely visit with Nathan and Coppelia. We did a lot over their short three day visit: going to the theatre, on a ghost walk, to the Art League's opening of its arts park, and then to the White River Gardens, the canal walk, and out for ice cream. I fixed a big cook-out meal on that Sunday and we had about 15 family over.
I have been able to do progressively more over the past 2 or 3 weeks. I do have to still wear an eye patch but my right eye is not as sensitive to light. I have even been able to drive the car for short distances if the conditions are right - cloudy or sun in a high position.
Raleigh is settling in as a member of the family. We go to obedience school on Tuesdays. When we take him for daily walks people still stop to comment on him. On three occasions people have even stopped their cars to ask about him. This weekend friends invited us to go canoeing at Lake Monroe. We took Raliegh along and he did well sitting in the middle of the canoe. He went into the lake up to his chest and would have gone further if I had gone to. We stopped in Nashville on the way home and found a restaurant with outdoor seating. Raleigh was well behaved. The waitress even brought him some meat from the kitchen.
All for now. Thanks for your interest and concern. dennis

Tuesday, September 6, 2005 9:41 AM CDT

Tish has chided me for not keeping up. We had a lovely visit with Nathan and Coppelia. They did a lot with Tish, going to the theatre, on a ghost walk, to the Art League's opening of its arts park. My eye was bothering me so I stayed at home. I did fix a big cook-out meal on that Sunday and we had about 15 people over. I have been able to do progressively more over the past 2 or 3 weeks. I do have to still wear an eye patch but my right eye is not as sensitive to light. I have even been able to drive the car for short distances if the conditions are right - cloudy or sun in a high position.
I still wake up with a headache but it is not as bad. I only take 1-2 Lortab each day. The left side of my face and head is still tingly and itches periodically. I still have a PIC IV in my right arm though I am going to ask to have it removed this week. Friday I see both the eye and transplant doctors. I still seem to need a lot of sleep and get tired early in the evening.
Raleigh is settling in as a member of the family. We go to obedience school on Tuesdays. When we take him for daily walks people still stop to comment on him. On three occasions people have even stopped their cars to ask about him. This weekend friends invited us to go canoeing. We took Raliegh along and he did well sitting in the middle of the canoe. He went into the lake up to his chest and would have gone further if I had gone to. We stopped in Nashville on the way home and found a restaurant with outdoor seating. Raleigh was well behaved. The waitress even brought him some meat from the kitchen.
All for now. Thanks for your interest and concern. dennis

Wednesday, August 17, 2005 8:00 PM CDT

Today is my re-birthday - the anniversary of the day last year when I received my brother's stem cells. At last report all of my blood cells are still his. The bone marrow from last week showed no leukemia cells. My platelets are still quite low in the teens, and I am still a bit anemic. The eye doctor was pleased with my progress and is tapering 2 of my 4 eye medicines at the end of the week.
At night when I take Raleigh for a walk I take my eye patch off and practice seeing with both eyes (though my left affected eye is never quite in focus.) On tonight's walk a young couple pulled to the curb in their convertible and started asking questions about Raleigh. He really is a beautiful dog. It's hard for us to go anywhere without someone stopping to talk ebout him. I am anxious for his "feathers" or long hair to come in on his chest and abdomen.
We have been busy getting Aaron's old room fixed into a guest room for the arrival of Nathan and his girlfriend this Friday. We had a scare in that Nathen came down with a small case of shingles on his stomach and Copellia had to get a live chicken pox vaccine. Their physician warned them not to be around me because I am immunocompromised., But we checked with my transplant docotr who said there was no problem.
So I am basically progressing albeit too slowly for me. I am anxious to be able to drive again, ride my motorcycle and go to movies. But all in all on this first birthday I am feeling blessed.

Wednesday, August 10, 2005 11:58 AM CDT

This is Dennis again. I will try to type this entry with as few errors as possible. I am still wearing an eye patch whileawake. My right eye though is also light sensitive and working on the computer has been one of the hardest things to do, even with the screen brightness turned down. I still cannot watch TV or go to movies for the same reason. But I find I am able to read for short periods through each day. That helps. Otherwise there is not much to do.
We did adopt the English setter from Ohio. He is a beautiful dog with a quiet, sweet temperment but a michevious streak like getting into waste baskets and getting food off the counter. He has grown to us though has some self-confidence issues and has to be in whatever room Tish or I is in. He also does not like to stay outside for very long unless one of us is with him. He has been to the vet for diarrhea caused by overgrowth of a normal bacteria in humans and dors, clostridium difficile. So I havce to be a little careful around him. We went to our first obedience class last evening.
My heath continues to be a struggle for me. The site problem leaves me bored and depressed. I have eye pain and a headache on and off and need to take Lortab and tylenol somewhat frequently. I am still abit dibilitated from my two summer hospital stays. Revovery from this is hindered by my sight problems which keep me from being more active. My face and head still itch and feel tingly.
Last week my counts were about the same though my platelets dropped a bit to 15K. Tomorrow is my next clinic appt. We will do blood tests but also the painful bone marrow biopsy since it has been nearly a year since transplant. Biopsy always makes me a little nervous, not so much for the discomfort as for the reminder that we are testing for the return of my leukemia. A Thursday biopsy usually means waiting until the end of the weekend for results. Next Monday I return to the eye doctor - hoping for good news there - and my respiratory treatment with pentamidine.
So hopefully my next entry will have good news - improved eyesight, negative biopsy, better behaved dog, and a weekend visit by Nathan and Coppelia from Boston.

Friday, July 29, 2005 9:23 PM CDT

I reread my last entry and realized how little I conveyed about what the last hospital experience was like for Dennis. I think I will leave it at that and let him share that with you at a later date if he chooses to - suffice it to say that it is an experience he does not care to ever repeat ( and it had nothing to do with the hospital staff - they were great).
Tuesday's visit to clinic went well - all his counts were up, so in consultation with Dennis, Dr. Akard decided to forego the Bone marrow biopsy and just do a VNTR to determine whose cells were whose. Instead Dennis and I actually went out to lunch!
We were back to clinic today and once again had good news -
platelets are up to 23,000! That is what they were the end of May when all of this started, and I was so worried by that number. Now we are rejoicing - funny how events can change your perspective. And the VNTR showed all cells are donor cells! Dennis has been getting discouraged about the slow progress with his eyes - particularly the photosensitivity. Today he felt like he was able to do more, particularly with his right eye, so that is another reason to be hopeful.
This weekend we will be traveling to Ohio - on Sunday we will visit a breeder in Cincinnati who has a 15 month old English Setter available to be placed in a good home. So we may be dog owners soon - Dennis has been researching dogs and really likes what he reads about English Setters. We both feel it may also be good for his spirits to have a dog, and the doctors agree. I hope his eyes will be feeling well enough soon so he can begin to post some of his own thoughts and share with you what happens with our "adoption". Tish

Monday, July 25, 2005 10:44 PM CDT

Sorry I left everyone hanging - Dennis came home yesterday, but the four days he was in the hospital I was pretty much asleep or at the hospital. Dennis was visited by the neurologist but all seemed to think his symtoms were mostl likely a reaction to the patch, so no additional tests were ordered. Dennis worked hard on Saturday to convince Dr. Akard that he was lucid and strong enough to go home. We walked a lot - even took two excursions outside the hospital. Sunday Dennis got up, showered and got dressed - he was determined to go home and it worked! He is feeling much better and trying to be a bit more active, use his right eye more, and EAT more. It is difficult for me to report that he now weighs less than I do. Now if we can get his counts to start climbing rather than being stagnant. They will take another look see at his bone marrow tomorrow (look see makes it sound so genteel - nothing like the bone wrenching procedure it actually is!). We'll keep you informed - Tish

Thursday, July 21, 2005 10:10 PM CDT

I am sorry to report that Dennis is back in the hospital - for a much shorter time this time, I hope. Indications are that the difficulties he is having are related to the Fentanyl pain patch he has been using since last Friday. It certainly helped with the post herpetic neuralgia pain, but he started getting kind of shaky, and fell for the first time on Tuesday evening. It was a very graceful buckling of the knees and down to the floor - he didn't even spill the drink he was carrying. A little scrape on the knee, but no bruise, which is amazing given his low platelet count. Wednesday was not a good day - we saw a corneal specialist about Dennis conintuing eye pain and light sensitivity - he felt that the eye was coming along fine but the post herpetic neuralgia (that nemesis again)was hard to deal with. Dennis was a little unsure of himself walking and got a little confused with directions.
We tried to take a walk around the block that evening, but he became again unsteady and worried about falling. He also said something that evening about a hole in the bathroom floor...
This morning Dennis again was feeling out of sorts and shaky. He was standing by the front door waiting to leave for clinic and I asked him to sit down until I was ready. He apparently didn't quite make the couch and fell in front of it - I didn't see him, but he reported it to me. Then on the way out to the car, with me walking behing him and holding on, he once again just started sinking to the ground, which was scary as we were on the side steps at the time. Although I was not able to hold him up, he at least didn't fall over and hit his head, although his knees were a little worse for the wear. In the car on the way to the hospital he also shared that he had been having weird sensations like I was in the room next to him when I wasn't there ... Marti and Anne met us at the entrance to the hospital with a wheelchair. By the time I got up to the room, Dennis was pretty confused - got many of Dr. Akard's orientation questions right, but thought it was March instead of July. I won't go into all the details of what happened, but he did have a CT scan before he was admitted and it was normal. He was seen by a neurologist, who also feels that all this is probably related to the Fentanyl patch, which gave him such relief from the pain, but ultimately landed him back inpatient. If he is not somewhat better by morning they will start another battery of tests, includeing a spinal tap. It is my fervent hope that none of that will be necessary. I was optimistically thinking that all of this might go away quickly and he could come home tomorrow, but they put in a PIC line today (sorry to those of you who don't understand the jargon, but I am too tired to explain), which makes me think that is unlikely. Thank goodness that all the doctors and nurses and support staff and Amy (the social worker)have been so kind and helpful. It makes it a lot less scary to be going through all of this. Thanks to all of you for your thoughts and prayers. Marcia, we were going to call you and let you know Dennis would love a visit and to try your blueberry bread, but maybe next week? I am sure he will be home be then. Tish

Monday, July 18, 2005 10:44 PM CDT

Weekend was a bit better - finished watching Cast Away over three nights. Kit and Beezer came to stay with Dennis for a while Saturday while I went grocery shopping and looked at some carpeting for Aaron's old room and the living room. Still, recovery is slow. The latest is intense itching on his forehead and eye - we hope this is a sign of healing, but in the meantime it can be very distressing. At clinic today, white counts and platelets continue to go up - 4.1 and 13,000 today! The doc would like to see platelets double by Friday, but in the meantime I am happy that they continue to rise without benefit of transfusion. RBC is trending down a bit, but still okay. Dr. Akard also said this was the worst case of shingles in terms of the prolonged onset and prolonged continuous new eruptions, intense pain etc. that they have seen. I said that just once I would like the doctor to come in and tell us this was "a classic case" of something or other. Dennis and his penchant for the unusual is wearing us both out. Dr. Akard suggested Dennis try a lidocaine patch, which works on the skin topically, to see if that helps with the itching. So tonight before he went to bed I put a Fentanyl patch on his shoulder and a lidocaine patch on his forehead in addition to the four different eye drop meds and three oral meds he has been taking at bedtime.
Dennis was able to spend a good bit of time today listening to a book on tape. It keeps him occupied and distracted from the physical stuff. I have a feeling we will see gradual but defintie improvement this week. Tish

Friday, July 15, 2005 10:39 PM CDT

Thursday was a difficult day - Dennis not feeling too well and me pushing him to try to do a little more. He seems to have gradually declined into sitting with his eyes closed most of the day or sleeping. As the caregiver its hard to know when to push and when to support. Thursday evening Dennis' wiped his eye with a Kleenex because it was running and immediately got a terrible pain in his eye (he said it felt like acid in the eye). I was in Aaron's old room taking up the carpet and did not hear him. He came up the stairs with an ice pack so I thought he was okay - that normally takes care of the pain pretty quickly. But this time the ice pack did not help and he was in terrible pain for about 10-12 minutes. I called the eye doc and the clinic for advice but there was not a lot of advice to give for immediate help. He did recover enough to go on a walk with me Thursday evening.
Today we had some good news at clinic - platelets were up to 10,000 after no transfusion on Weds! Dr. Jansen was very sympathetic about what Dennis is going through - he said because the onset of the herpes virus (shingles) was so unusually prolonged the recovery may also be prolonged.
He put Dennis on a patch to give him more consistent pain relief. He also suggested that Dennis take the left lens out of his glasses so he could wear them while he wore his eye patch. That may help him keep his right eye open and be more active, which may also help distract him from the pain in his head and eye. We will see if this plan is more successful - Dennis was able to watch part of a movie with me tonite. Hopefully things will improve some this weekend.

Tish

Wednesday, July 13, 2005 6:15 PM CDT

Sorry it's been so long without an update - Dennis has a hard time being on the computer for more than a few minutes because it bothers his eyes, so he suggested I give you an update.

I was gone over the weekend for my sister's birthday and had a wonderful time - Dennis' mom and her dog Beezer took good care of him. They brought him to his clinic appt. Saturday (platelets 7,000, another transfusion) and spent time with him at our house. He relaxed quite a bit on the hammock in the back yard and played some with Beezer. The main down side was he was by himself at night which generally is not a problem, but during early hours of Sunday morning scratched his forehead which has become itchy due to the shingles drying up. This immediately cause a searing pain in his head and eye which was frightening to him as he had not experienced it before. He even contemplated calling the hospital before it subsided.
He now gets these pains a few times a day - fortunately we have discovered that an ice pack applied as soon as possible brings relief.
Monday was a long and trying day. First, his platelets were only 4000 after having had a transfusion on Saturday.
He was feeling generally lousy and his eye was looking much worse than it had been. The eye doctor's office is in a building attached by a skywalk to the hospital so we strolled over to see him (Dennis was having so much difficulty with his eyes at this point, that I essentially had to lead him over)while we waited on the platelets. He is a very nice man and a good doctor and immediately ordered several new medications as the virus was still active in D's eye. Unfortunately, this means that I have to put drops or lotion in his eye 13 x's a day! We had had an appointment to get a Pentamadine treatment (never mind) and Sherry at the clinic realized that since we had new insurance he could also get that treatment at the hospital. So on the the pulmonary clinic for that treatment.
We got back to get the platelet transfusion and after about 61/2 hours were ready to go home. Although Dennis now has an impulse to run in the other direction when he sees me coming, as I often am weilding a bottle and an intent to yank open his sore eye, he did agree to go for a walk with me around the block on Tuesday evening. Simple pleasures...
Today there was some good news! Dennis platelets were actually up to 9000! The doctor and Dennis jointly agreed to forego a platelet transfusion and see what has happened to the counts on Friday. We did still spend a few hours so he could get some fluids - we didn't want to waste the IV line the nurse had already put in :)

I will try to keep this more up to date, or Dennis will when he feels up to it. This has been an ordeal, but it is good to know there are people out there who care and are pulling for us. Tish

Thursday, July 7, 2005 5:10 PM CDT

In some ways this recovery is more difficult than coming home from transplant. First this was unexpected, a shock to our sense of vulnerability. Then there is the persistent pain. I have tried various agents for the neuropathy but they all make me sleepy. Yesterday I started vomiting any solids I tried to eat and I have already lost over 15 pounds.
We went to the clinic on Tuesday to find that my hempglobin had drooped to 8.3 and my plalelets to 6K. So we spent the afternoon there geeting a transfusion of 2 units of blood and 1 unit of platelets. Returning to the clinic today we discovered that my platelets were still only 8K. So we stayed for another platelet transfusionand, because of the recent vomiting, a liter of fluids for hydration. I go back again on Saturday and then on Monday. He is starting me back on steroids because of my lack of appetite. And I will start taking my neuropathy pill in the evening instead of the morning.
We are trying to figure out the weekend as Tish needs a holiday and was planning on going to Ohio for her sister's 50th birthday. My mother may take me to clinic on Saturday and call to check on me. All we can do is to take it day by day.

Monday, July 4, 2005 7:32 AM CDT

I would have told you a month ago that I defintely planed to spend the 4th of July holiday on the water in the boat. This hospitalization and viral infection have proved something of a set-back for both of us. Despite feeling very happy to be home from the hospital, my health has been very distracting.
Thursday night my temperature went to 101. I told Tish I did not want to return to the hospital. We agreed to watch the temp for a while. Tish went to the drug store for a new thermometer while I slept on the couch. Fortunately it fell to 100.6 and did not rise during the night. Friday we went to our clinic appointment. They started an IV site when they drew my blood in case I needed a platelet transfustion. But my counts came back good. My white cells in the 4's, hemoglobin 10, and plate;ets 14K. So no need for s tranfusion. We did a few errands to the hardware store and library.
The lesions cover most of my forehead, my nose, my left eye, and the left side of my face and scalp. They are fading but still remain painful. From what we read teh pain can remainfor weeks, months, or years. That is a bit intimidating. I am back on a pain medicine that has as side effects drowsiness, unsteadyness, dizzyness, etc. So my days have been composed of a lot of listlessness, interupted by naps and punctuated by efforts to do small projects around the house, yard, and boat.
Yesterday my mother brought her dog, Beezer, to visit. We sat in a nice breeze on the patio while Beezer made explortions around the yard. The boys, Tish, and my Mom bought for Father's day a new Weber charcoal grill. I mounted an old sign that reads "Good Food" that my sister had found for me last summer on the lattice fence behind the grill. Aaron started up the grill (he sells these for commision as Ace) amd I grilled some hamburgers. My appetite is still very poor and I can barely eat half my meals. Today we may grill vegetable kabobs and ribs on the grill tonight for the holiday. We have another clinic appointment on Tuesday. I will try to report again then or Wednesday.

Thursday, June 30, 2005 12:53 AM CDT

Good news! This is Dennis back at the keyboard. I got discharged yesterday afternoon. Woke up Wednesday with a terrific headache and platelets down to 10K. So after my last dose a IV antibiotics (vancomycin) and a platelet transfussion, I received my 'papers'.
As is typical we had some home emergencies. Tish was stcuk at home, dealing first with the plumber for the second day in a row, then with the sewer guys for the second time in 5 weeks. Thinks seem to work now though no one can explain why. Aaron was thoughtful this admission and did not end up in the hospital ER himself. Poor Tish has been so helpful trying to take care of me, visiting twice a day and trying to entice me to eat better, then she invarably has to deal with these mini-emergencies (last time the care quit on the highway).
The house was clean and cool when we arrived at home. I ambled around a bit, we stopped at the library. Then I took a nap while Tish went for precriptions. Ben and Dorothy came over for dinner, then other family to officially celebrate Aaron's birthday with cake. Unfortunately I was still plagued with my headache. But I was able to give a poor imitation of the Phantom of the Opera with my scarred face and I.
I slept well though awoke with a headache I am just taking it easy today. Thanks to everyone for your thoughts and prayers and for helpinf Tish out (ben came over and mowed the lawn one day.) dennis

Tuesday, June 28, 2005 4:36 PM CDT

Well, I missed Dr. Thompson's visit today as I had to go home to meet the plumber, but it looks like Dennis has a tentative go ahead to leave the hospital tomorrow. Most of the IV stuff he has to have is finished today and they feel they can watch him just as closely through frequent clinic visits after that. YOO HOO! Sooo.. pending any new negative developments, you may actually hear from Dennis himself on this site tomorrow. The staff have been wonderful, but there's no place like home! Tish

Monday, June 27, 2005 10:45 PM CDT

just a quick note as it is late - yesterday the good news was Dennis' counts held steady. Unfortunately, today his platelets (and white count) were down again (9) and he had to be transfused. His midline also came partially out and couldn't be salvaged, so he is back to a peripheral IV. He continues to look and feel better despite his counts. He needs to rev up his appetite a bit as he has lost about 10 lbs. since he went in, so I have been trying to tempt him with non-hospital food. We shared Chinese tonight. We will spend another celebration day in the hospital - our baby, Aaron, will be 20 years old tomorrow. He and Nana Kit and I will have lunch together, then bring the party to the hospital. I keep hoping for the magic words (or is it counts?) that will parole him from the hospital. Maybe in a few days... Thanks for all of your words of encouragement - I will print your messages off tomorrow and bring them in for Dennis to read. Tish

Saturday, June 25, 2005 10:42 PM CDT

Dr. Akard thought he would find Dennis feeling and looking miserable today because he had a rough night with fever and chills so bad he about shook himself out of bed. The fever and who knows what else chewed up the platelets he got during the day, so they had to give him more during the night. But he fooled us all and looked better today than he had in a while - the eye is not nearly as swolen or sensitive to light. His appetite is much better, so he is taking in more nutrition. He took a stand up shower today mostly by himself. We watched a movie together this evening. He actually had a conversation with Barbarann when she visited and talked on the phone with a few people.
If anyone would like to call his number is 782-7370. His room number at St. Francis Beech Grove is 605.
Dennis has begun asking if I had spoken to anyone so will be sure to pass along your comments on the caringbridge page or if I speak with you on the phone. I know it must feel pretty isolating to be stuck in a hospital room for so long. I take it as a good sign that he has begun asking about all of you.
Well this entry feels pretty disjointed - my brain is tired. More (good?) news tomorrow. tish

Friday, June 24, 2005 9:27 PM CDT

Its been an bit of a roller coaster day. When I spoke with Dennis on the phone this morning and discovered that all of his counts were down again, including platelets, I panicked a bit. After being at the hospital and there when the doctor came in, I felt a bit better. He still feels the counts are related to the virus (viruses?) and we have to wait it out. So Dennis got 2 units of packed red blood cells and one of platelets today in addition to Acyclovir, fluids, lasix (because he is getting so many fluids), IV drip morphine for the shingles pain, and something else, I don't remember what. The morphine drip seems to be helping and Dennis was actually able to open his eyes for something other than gettin eye drops put in. He is eating better today and actually got in the shower. Just as I was feeling a bit better about things he started shaking and chilling and within an hour his temp was up to 101.7 after two full days being afebrile (that means no fever, right Jan?). It does not appear likely that the fever was a reaction to any of the blood products, but they gave him benadryl just in case. And of course drew blood for more cultures and took the entire IV bag and tubing from the transfusions down to the lab to be analyzed. My anxiety level shot up again with the fever returning. Dennis stayed calm and did not act too worried. I don't know if that was because he was too drugged to care, actually was not worried as he has seen this kind of thing often enough when he worked the oncology unit, or didn't want me to worry.
Anyway pleas redouble your efforts at prayer, positive energy, or whatever you are particularly in tune with - we will accept all forms of assistance. Tish

Thursday, June 23, 2005 8:11 PM CDT

Dennis has been almost 48 hrs. without a fever - good news!
Counts dropped significantly today - platelets down to 8000 from 16000 requiring a platelet transfusion - not so good news. His white count is also down for the first time in a while. He has had more tests - a brain MRI to rule out intracranial problems from the low platelets, or problems related to the shingles - results were normal. Peripheral blood smear still shows no signs of abnormal T cells. He continues to have fairly significant head and face pain due to the shingles and light sensitivity - I brought him in a light filtering mask for his eyes, which helps a lot. It also cuts down on the times he asks us to turn out the light when no light is on! He was also out of bed more today - up in the chair and to the restroom which I count as positives. I don't think he is ready to jump up and down with excitement about that, though. He ate a whole bowl of soup (doctor's orders) and peaches for dinner. Also brought in a CD player so he can at least have some music to listen to since he can't read or watch TV. We didn't think we would need any of this stuff when he went to the hospital as we were expecting a short stay.

Tomorrow is Friday and the CAtholic Center is closed, so at least I won't have to be running back and forth between work and the hospital. Thanks for all your thoughts and prayers, keep them coming. Tish

Wednesday, June 22, 2005 9:37 PM CDT

When I got to the hospital early this AM Dennis eye had become more red and swollen and there were a few more blistery looking places. The nurse said she was going to ask Dr. Akard about running a culture on it. The culture came back positive for Herpes Zoster, so Dennis definitely has shingles. We are back to gown and gloves isolation to avoid spreading the virus anywhere else on the unit. They have put in a midline catheter so he won't have to be stuck so many times and so they don't have such difficulty starting an IV every few days. The anti-viral meds have been switched from oral to IV, he continues to get fluids and pain meds.
Dennis is very light sensitive right now and was being bothered by the light from the enclosed windows, even with drapes drawn. His kind nurses put up a long strip of dark blue with silver stars wrapping paper over part of the window and finised off the effect with some newspapers. It has helped. and makes the room look deceptively festive.
On a bright note, Dennis' temperature has been normal for much of the day.
Here's hoping we are on the right track and heading in the direction of coming home.... Tish

Tuesday, June 21, 2005 9:55 PM CDT

Well, Dennis is still not home, but we may have some idea of what is going on. It appears as though he has a herpes zoster infection, or shingles, involving a trigeminal(?)nerve that runs through the forehead above his left eye and into his left eye. He has been complaining of a weird burning sensation on his forehead, but it was just a bit red with nothing definitive. His complaints of headache and sensitivity have increased until today he has almost constant and increased pain on the left side of his head. His eye is also red and teary. The docs started him on both Acyclovir and Valtrex, two antiviral drugs, and put him back on IV fluids as he was not taking in much fluid.
When I arrived after work today, I noticed a cluster of small blisters in one area on his forehead, which is apparently almost definitive for shingles, given his other symptoms. Whether this accounts for everything that has been going on we are not sure, but at least they can begin to treat something! They continue to run other tests, so it remains to see if this is the AHA! we've been looking for. The down side is Dennis is feeling pretty badly, not eating much at all, and in pain. Counts are about the same. Please send your positive thoughts and prayers his way. Tish

Monday, June 20, 2005 6:34 PM CDT

Another long day with no answers - all the molecular viral tests came back negative. The platelet antibody test was negative. Both fungal tests came back negative. I would like to celebrate that Dennis does not have any of those infections, but still the fever persists and although the white counts are a bit up, the other counts are holding their own but not increasing. The infectious disease doc ordered a non-molecular histoplasmosis and a urine histoplasmosis this evening. They are also going to do another CMV titer - apparently with increased white cells they might get more accurate results. I think, pending the results of some of those tests, they will release him tomorrow with medication and frequent (daily?) clinic visits to monitor counts and symptoms.

Dennis does tend to attract the unusual and puzzling doesn't he? This is certainly not the summer we were anticipating. Keep us in your thoughts. Tish

Saturday, June 18, 2005 9:31 PM CDT

Since Dennis continues to run a fever even though he has been on IV antiobiotics, they have been discontinued. Will monitior any change after 24 hrs.. Fever is probably caused by this willful virus of unknown origin. Counts were stable again today. In other words not much change.
I brought in some Mexican food from a restaurant and we ate it together in his room for our anniversary. We then watched "Raising Arizona" from the hospital video library. He's been up walking the unit a bit - yesterday we got chased down for walking in an unfiltered area. Since we were not there for D's BMT, we had never gotten a copy of the rules. There probably will not be much more to report till Monday when more of the labs will be back. Tish

Friday, June 17, 2005 10:44 AM CDT

Not much new to report - fever continues, counts trending a bit up, doctors continue to order tests to try and determine what is causing bone marrow suppression and fever. Tests results so far negative. Will run tests for histoplasmosis, and a couple other viruses, whose names I can't recall, which can activate in immunosuppressed people. Of course, since it is Friday, results won't be back until next week. Dennis continues to feel pretty lousy. Its frustrating. The weather is beautiful and I feel bad he cannot be outside to enjoy it. Days like this generally give him energy and a renewed spirit. But from a hospital room, it doesn't much help. I will write again today if there is any more news - I'm on my way down to the hospital now. Keep up the prayers and positive thoughts. love, tish

Tuesday, June 14, 2005 11:09 PM CDT

Welll, I am frustrated - I pushed the button to edit my entry and the whole thing dissappeared. So here we go again...
First, there is good news! Dennis bone marrow showed no signs of leukemic cells, so whatever is causing the problems he is having, it is not relapse! The drop in his counts is likely either a production problem - suppressed production in the bone marrow related to a virus is one possibility there. If that is the case it should resolve itself. Another possibility is a destruction problem - an auto-immune issue where Dennis immune system is destroying the precursor cells before they differentiate into red and white cells and platelets. That would explain why all three counts are down. If that is the case, he would have to be put on high doses of prednisone to tamp down his immune system. The doctor does not want to take that step unless clearly nothing else is working or the counts get dramatically worse as there are so many negative side effects and it takes so long to taper down the dose. Right now his counts are remaining fairly steady - which is pretty amazing, especially for the platelets as fevers tend to chew them up - but I am hoping for an upward trend. Can't believe I'm back to walking into his hospital room and automatically looking at the board to see the "counts of the day".
The other issue is trying to figure out what is causing the high temps he is still running in the late afternoon and evening. Back up to 101.8 before I left tonight, even though he has been on two IV antibiotics since Sunday night. They drew another blood sample to run a culture this evening since the first culture didn't grow anything. He has also had a CMV titer (I won't explain that one unless I have to), a chest xray and a sinus CT scan today.
Hopefully one of those things will give the docs some more direction to deal with whatever is causing this.
Thanks for all your prayers and good wishes - I am going to focus for now on the GOOD news, and deal with the rest as it comes. Tish

Monday, June 13, 2005 10:12 PM CDT

Well, we still don't know what is going on with Dennis' bone marrow, but he did get a fever over the weekend which climbed to 101 Sunday evening and prompted a call to the Dr. That prompted a trip to St. Francis and being admitted to the BMT unit there, which he has never visited. Due to a recent change in insurance, St. Francis is now the hospital for his network. By the time we arrived at the hospital, his temp had climbed to 102.2. He was started on IV antibiotics and fluids and blood cultures and CBC drawn. Much to our surprise his counts had all gone up a bit - not dramatically to be sure, but still in the right direction. The orders pending CBC for platelets and packed red blood cells did not have to be filled. After Dennis got settled in, I went home to get some sleep.
Today things are pretty status quo - counts are marginally down, but he's still holding his own with no need for transfusions. Fever is up and down, and sometimes gone altogether. The frustrating thing is trying to find out what exactly, or appproximately if exactly is too much to ask for, is going on. BM biopsy results should be in tomorrow, maybe cultures will tell us something about what is causing the fever and general malaise. The doctor asked if anyone else in the family has been sick and we said no, but Aaron left work early today complaining of feeling really achy and tired, similar symptoms to Dennis. I asked him to keep me posted about how he is feeling, both because I care about him, and because it could lend some light about what is going on with Dennis.

Well, I said a lot for not much to report. Dennis asked that I let you know that he did do an update on Friday that might help you all make sense of this entry. Pray for a good biopsy report tomorrow. Tish

Friday, June 10, 2005 2:33 PM CDT

Sorry for the long delay in updates. In a way it is good if you don't hear from me. But events have been piling up, not all of them good. So I'd better update you. Two weeks ago I went for my first clinic appointment on a monthly interval. My platelets, which have been running around 70,000 (normal 150,000 - 300,000, dropped to 23K - lowest since I was out of the hospital. The most ready, if improbable, explanation was a medicne I was on, Septra. So we stopped it as well as the steroid I was on (I was due to go off this anyway). I agreed to come back in 2 weeks for a quick blood draw.
Today was the day. We found my counts had dropped even further: platelets 13K, wbc down to 1.7, and hemoglobin to 8.9 (the first time that has been below 10 since February. I have also felt more tired the past two weeks, even having to take some naps. Also a few vague gi symptoms.
Possible explanations? the first thing we think of, the first thing we always think of, is relapse of my leukemia. The doctor's gut feeling is that it is not this. Other explanations for this kind of bone marrow suppression include a viral infection. So we did a bone marrow biopsy today (always fun). Two week's ago I was still 100% my donor's cells. I need to go back on Monday for another blood test and possible blood and platelet transfusion if my counts fall below 8.0 and 10K respectively. So we are trying to keep a positive attitude. In the meantime no playing with sharp objects. In fact I had to wait around for almost an hour after the biopsy because it wouldn't stop bleeding.
Speaking of playing a month ago the boating bug bite me and I bought a used powerboat with part of my inheritance from my grandmother's estate. The boat is a 1988 Four Winns, 21 feet long, 8 feet wide, weighing 3200#, powered by a Chevy engine similiar to the one in my truck 5.0L. It was a one owner, had all the original manuals, and was well taken care of. It has a 'cuddy' cabin where 2 people can sleep with a porta-potty underneath. Seats fro 6-8 in the cockpit, a full road cover, a bimini top over over the front half of the cockpit with the possibility of closing in the back with another custon fitting canvas, so 3-4 people could sleep in the cockpit if necessary.
We took it out last weekend to Lake Monroe near Bloomington and had a great time. Tuesday we took our 4 visiting nieces out on Geist Lake and towed them around on an inflatible wing. Two of the girls just couldn't get enought of it. I have been having an engine overheating problem and the engine would not restart after we let it cool down. We eventually flagged down another boat who took Tish, Aaron and the girls back to the ramp area. The marina was closed fore the day so I spent the night nestled in a little cove until morning when the marina boat came and jumped my battery. Just a little adventure.
Aaron finally found a place to live, just 6 blocks away. He plans to move in this weekend. He likes his new job at Ace Hardware.
I forgot to say that I bought the boat for the new grandchild who is expected in November. The cuddy will make a perfect play area. Some of our best family memories were on our old 13 foot outboard.
I wasn't planning to look for until the end of summer. Nonetheless, I did interview for a patient care coordinator (team leader) position with my hospital's home care hospice unit. We'll have to see what happens with my health.
There are undoubtedly a few other things that happened recently, but, being a bit preoccupied, these are all I can remember right now. Keep us ijn your thoughts and prayers. dennis

Monday, April 25, 2005 4:04 PM CDT

It's been over a month since my last entry. But there has been a flurry of activity recently so now is a good time to write. I finally got my car back but only last Tuesday. Tish and I drove her new car to Boston to visit our oldest son, Nathan. We spent the first night in Columbus as Tish's sister, Sandy. Spent two nights at Nathan's house in Medford before moving into a 200+ year old inn in olde Concord. A very quiet, quintessentially New England town where Paul Revere assembled the Minute Men. Saw the old bridge where the shot heard round the world was fired. Visited the childhood home of Louisa May Alcott, the homes of Nathanial Hawthorne and Ralph Waldo Emerson, Thoureau's cabin on Walden Pond, and saw many old graves. Also visited Salem, site of the witch trials and early American shipping.
On the way back we visited Mystic Seaport Museum, had dinner at Mystic Pizza where the movie of the same name was filmed, and stayed at a lodge where Humphrey Bogart and Lauren Bacall spent their honeymoon.
No sooner had I got back then I flew the next day to Toronto for a UICC/American Cancer Society meeting to plan the Supportive Care program for next year's quadrennial Cancer Congress in DC. It was my first time to travel since transplant. I did okay although was tired a lot and was battling a cough and cold. Had to go on an extra antibiotic for this.
We have used the new jacuzzi several times, expecially last weekend when we worked on the sailboat. Tish did more than I as I kept coughing and getting fatigued and out of breath.
On Friday we attended the annual Leikemia and Lypmhoma Society Diamond Ball at the Murat. I received the Spirit Award, representing blood cancer survivors. One of my doctors, Mike Dugan, received the Excellence in Care award. Sony sponsored my table so I was able to invite my family including Tish, Aaron, Ben & Dorthy, Mike & Barbrann, and my mother. A good meal, a silent auction, a dance band, and casino games. Everyone had a great time.
Ben and Dorothy invited us all over for dinner last night. We showed them pictures of our trip and then they surprised us by pulling out ultrasound pictures of their new baby. Tish was speechless and had been talking just Saturday about needing to have children around our house again. They are expecting in late November. So we will be grandparents for the first time. Tish was smiling for hours afterward.
I return to the clinic this Friday for a check-up. My counts were all a bit down last time. I still have itchy thin skin, weird hair, and general fatigue. All for now.

Friday, March 18, 2005 11:33 AM CST

Today was a milestone of sorts - I had my Hickman catheter pulled out at the clinic. The procedure was a litle uncomfortable, feeling like the doctor was janking out part of my body. It took four pulls to come loose. My hemaglobin seems stable though I am still a bit anemic. I had dropped less than a gram over the past two weeks. My main complaint is that I itch constantly, little bumps pn my neck, ears, arms, chest and stomach. We still think that is a graft versus host disease manifestation. My fatigue has not been as bad. My hair is still a bit wierd. I tried to trim it myself in the mirror a couple of weeks ago and did not do a very good job. Tish had to try to salvage it. I still have a tremor in my hands when trying to accomplish fine motor tasks. In a couple of weeks I need to change to Tish's insurance ro else beginning paying the full premium for mine. My skin is 'thin' due to the steroids so that I have all these little scabs and bruises when I have scratched myself.
We went to funeral services of mone of my patients with leukemia. Sonia had a transplant right after I did. In fact she took over my hospital room the day after I was discharged. Tish and I continue to wonder at how blessed we are. I have had relatively few problems post-transplant and have done well with my treatments both for my leukemia and my transplant.
Tish was in an accident with my car last week. So was okay but we thought the Maxima was totaled. So a dew days later we went shopping for a replacement car, purchasing a 2004 Mazda 6 at CarMax. Then on Monday we found out that they may be able to repair my car. We decided to keep the new car since Tish drives so much for her job and my car had 112,000 miles on it already, plus it uses premium gas. The new car gets better gas mileage.
Ben and Dorothy moved into their new house a couple of weeks ago, using my truck as a moving van. Aaron has a new job at the Ace Hardware store in Nora. So he is happy and I still have a hardware discount. The new job is full time and includes commission and benefits. The bathroom is almost done. The plumber installed the toilet, sink, and shower valves. He needs to come back to help install the Jacuzzi tub. The warm tiles work well. There are on a programmable thermostat so that the bathroom floor will be warn when we get up in the morning. All that remains in to enclose the tub with tile, rehang and paint the window and door trim, and put up towel racks, etc. We demoslished this bathroom eight years ago when we replaced the living room ceiling.
So I think that brings us up to date. People have been getting on me for not updating the site. But with my health situation I have learned that no news is good news. Thanks as always for all your prayers and support.

Saturday, February 19, 2005 10:04 AM CST

I feel better after my transfusion Monday. Hemeglobin up to 11.0! I started developing a rash on Sunday which continued to spread and become more intense and itchy. So we called the clinic Tuesday morning and they had me come in. The doctor did another skin (punch) biopsy which wasn't too uncomfortable - this in order to determine if the rash was a drug reaction or GVHD. The blood bank nurse became excited when she saw me scratching my red bumpy arm - she thought it was a reaction to the blood transusion! In any case we increased my dose of prednisone, the steroid I am on, from 5 mg to 20 mg.
On Friday we found out that the skin biopsy was inconclusive but the doctor still thinks it is GVHD, just an early stage. I will have to stay on steroids for at least another six weeks, hopefully without any more muscle wasting at this moderate dose. The bone marrow biopsy results show 100% donor cells and no abnormal t-cells to indicate a relapse. Because of the GVHD the doctor doubts that they will give me any more of my donor's frozen mature white cells (LDI).
So overall I seem to continue to be doing relatively well.

Saturday, February 12, 2005 10:02 AM CST

Six months out! Not much change in anything since my last entry. I had a bone marrow biopsy yesterday and some extra blood tests. I won't know the results until next week but neither of us expects to find any evidence of leukemia. My red blood count continues to fall despite predictions that we were over this. I go to Methodist on Monday for a transfusion. My hemaglobin was 8.1 yesterday. I still have hand tremors despite being off cyclosporin for 2 weeks. My voice is stronger but comes and goes. No real signs of GVHD though I do have some mild skin and gut symptoms. Of course I have been short of breath, dizzy, and cold with the anemia. But all-in-all things are going well. Last weekend was warm and I supervised Aaron chnaging out the heater core in his car, a two afternoon job.

Tuesday, January 25, 2005 7:24 PM CST

Sorry for the long interval. Not much change though I am down to very low doses of immunosuppressants. I still have some anti-A and anti-B in my system so that I get some hemolysis of my red blood cells. I seem to need transfusions about every two weeks. I find that I am sleeping about eleven hours a day. Last VNTR shows that I am 98% donor cells.
My case manager wants me to go to Methodist Hospital to have my transfusions instead of the BMT clinic. I got blood there during my first treatment course in 2002. The nurse remembered me. Later the lab guy came out and said that they were puzzling over my Type & Cross sample. He ran it three times and it kept coming up AB, but he knew from 2002 records that I was O. The nurse finally rold him that I had a transplant.
We are waiting for the appearance of graft v host disease as we back off on the immunosuppressants. In 2-3 weeks I will get a dose of my brother's white cells, about 10x the amount of the last time. We may see some GVHD then for sure. I still have my Hickman catheter. It turns out that it was a good decision to keep it with all the transfusions and extra blood draws. Fatigue is still a major issue. Hope it gets better.

Tuesday, January 11, 2005 11:18 AM CST

Day +147 - a New Year. I felt pretty good for a while but after Christmas seem to feel more and more fatigued. Last Tuesday Jan Young was going to take me to the movies. Before she got here, there was a delivery at the door. I ran downstairs to answer it. I was out of breath and dizzy so that I had to grab on to the couch after he left. When Jan got here, I put my caot on and became dizzy again. We decided not to go to the movie. Instead, at Tish's urging I called the clinic. They told me to come in so Jan ended up driving me to Beech Grove. My hemoglobin had fallen to 8.4 (not that low) but aa I was symptomatic, they gave me two units of blood. Tish met us later at the hospital and drove me home.
We have been walking at Glendale Mall twice per Dr. Jansen's advice. I went to see him again on Friday. Next time he is going to test the amount of anti-A and anti-B in my blood which may be destroying the new blood my marrow is producing and thus causing my hemoglobin to drop. Also in two weeks I will get another, larger dose of my donor's white cells in order to provoke more graft-v-leukemia effect. We reduced my cyclosporin but not my steroid. My hands getting increasingly shakey if I am doing any fine motor work such as chopping vergetables, working the computer mouse, or even eating with utensils.
The disability insurance people are reveiving my case again. I may have to apply for social security disability as it is difficult to judge when and to what extent I will be able to return to work. Bedside nursing is very strenuous and I have been out of that over three years. I guess I juyst have to take things day by day.
On a positive note I did receive in the mail yesterday, two copies of a case study by Berlex, distributors of my main drug, Campath. It is very professionally done on glossy, heavy paper stock with a picture of me and my motorcycle on the cover and another on the section that I wrote about my initial and relapseed experience with the wonder drug.

Tuesday, December 28, 2004 9:19 AM CST

Day +133 - when i last wrote my counts were down and we had stopped Septra. When I went in on the following Monday for my blood transfusion, my hemoglobin had dropped another gram to 7.5 - no wonder I was getting out of breath. Got better news yesterday - my white cells and hemoglobin were still up, only my platelets were low at 32K whcih is why I seem to have more bruses. Better news - the VNTR test showed that at least 98% of my blood cells are my donor's. So we can continue to back on the steroids. And I don't have to go to the clinic for almost 2 weeks.
The holidays have been great, my fourth since diagnosis. We had a white Christmas here with 9 inches of snow on the 23rd. Nathan made it in from Boston, driving across northern Ohio and arriving at 1 AM. Dorothy and Ben were here as were my Mom and her dog. I made my traditional Christmas Eve feast although my sister and her husband elected not to come up from Bloomington due to the roads and extreme cold that night -6. They came up on Sunday and we watched an exciting Colts game. Nathan's girlfriend, Copellia, arrives tonight from China where she has been visiting her parents.
Hope everyone is having a great holiday too, dennis

Friday, December 17, 2004 11:37 AM CST

Day +121 - Some small concerns. Just got back from the clinic. My counts are down and we're not sure exactly why. It could be the effect of my anti-basterial, Septra, which is classified as an antimetabolite and functions like chemo. So we are going to hold off on that and substitute the much more expensive drug to see if my counts rise. If I can't go back on Septra then I will need to restart the monthly aerosol treatments with Pentamidine.
The Prednisone, my steroid, can also cause counts to fall. So are decreasing it gradually anyway. The other, hopefully more remote possibility, is a return of my leukemia. We talked about doing another bone marrow biopsy next week - it's been three months since my last one. But we decided to wait on the results of my monthly 'whose cells are whose' test. If the results show less of my donor cells than last time, we will definitely do the biopsy.
I have been more out of breath and tired lately so I was not surprised that my hemoglobin was down to 8.5. They offered to transfuse today but Tish had afternoon appontments. So they drew a type & crossmatch and the blood will be ready on Monday morning. This will give me a little extra energy through the holidays. My white count was 3.6 and my platelets had fallen to 42.
We also cut down again on my cyclosporin. I am glad because my hand tremors seem worse. I have to be careful with sharp objects! In the next coming weeks we may challenge my body again with another infusion of Mark's white cells.
My voice is still weak and raspy. I have an appointment with a throat specialist next week. With Christmas a week away I am working under a self-imposed deadline on the bathroom. The floor is tiled. I'll begin tiling the walls this weekend. My Christmas shopping is done and gifts wrapped but no holiday baking yet. I'll have to figure some time in for that.
I wish everyone a blessed and happy holiday! dennis

Monday, December 6, 2004 10:46 AM CST

Day +111 - Update - progress. Things continue to look good. I am a little breathless at times but have a greater reserve of energy. I hope that this does not disappear when I go off the steroids. My hands have been quite shakey lately due to the cyclosporin - small price. Friday was my last week for the two-hour, $6000 gammaglobulin infusions. They are talking about taking out my Hickman catheter soon. My voice is still weak and raspy most of the time so we are thinking of a consult with an ENT doctor. I wanted to give it another week. My counts are holding. We reviewed the trend in phenotype markers on my lymphocyte (white) cells as this gives us clues about the stability of my leukemia remission. My skin biopsy did show early signs of some GVHD which is what we wanted, but we are holding off for now on another infusion of Mark, my donor's, white cells. Just about ready to tile the bathroom (after 7 years). Aaron will be able to help after school breaks. It should be mostly functional by Christmas. More next week. Thanks again and again.

Saturday, November 27, 2004 9:30 AM CST

Day + 102 - well, I passed a transplant milestone, providentially, on Thanksgiving day - day +100. Even though I am doing basically well, I sure felt a little embarassed yesterday when I went into the credit union, balding, limping, talking in a squeaky whisper, and having my hands shake as I counted my money. The shake is still from the cyclosporin, the voice problems are related to steroids, my hair is acutally starting to grow in, and the limp was due to a suspected blood clot which turned out to be negative. I had been working on the bathroom floor and probably strained my calf though cancer patients are sometimes at risk for developing potentially serious blood clots.
~ My white count was 10.7 - the highest it has been in three years, partly an effect of the prednisone. My red blood hemeglobin is holding at 10.6 so maybe my donor's blood and mine have stopped trying to kill each other. My platelets were even up a little at 90k. I may have only one or two weeks of IV gammaglobulin - a good thing since we found out these cost $6000 per and the insurance has been questioning this. I still have low energy though it is improved with the steroids - so far no "moon' face.
~ So as we approach Decmber I am trying to finish up the bathroom and prepare for the holidays. Hope you al had a nice one. dennis

Monday, November 22, 2004 11:04 AM CST

Day +97 - steroid highs and lows! My rash has pretty much faded and,of course, I have more energy. I have gotten more house chores and baking done the past two weeks. I get depressed when I feel too tired to even read or work on projects. The other side is insomnia. One night I was awake for about 7 hours, mind racing.
~Last Friday we started to decrease the prednisone and will continue to do so over the next month or so. We have to hold off for a while on any more transfusions of my brother's white cells (DLI). Last week the test seemed to show that I still had 10% of my own cells circulating - it should be 2% or less.
~ The other issues with the steriods is that it affects my voice so that I can speak in little more than a whisper. This is a rare side effect to prednisone but of course I am the one to get it. My hemaglobin stayed reasonably high at 10 mg last week. My white count was up to almost normal, 4.5 - the highest it has been since transplant.
~ All for now. Thanks again. dennis

Monday, November 15, 2004 6:54 PM CST

Day +90 - fatigue, transfusions, skin rash, steroids! I had a second week in which I hardly had any energy - on Friday my hemeglobin was down to 7.2, the lowest yet. So I got two units of blood in addition to my gammaglobulin. Tish had a conference that day, so Marcia Beckwith, a friend from the Cancer Center drove me. On Saturday I felt so much better that I was able to work on the bathroom, goinf out to the garage periodically to cut lumber for the tub platform.
~ Sunday the Colts won their second in a row. I probably overdid it Saturday. I was tired again on Sunday. I also noticed increased itching on my face and neck. By evening my chest, stomach and back were itching. Tish and I had been watching for a rash to appear, a possible sign of graft versus host disease. We had been expecting GVHD to manifest itself somehow since we have been lowering my daily dose to cyclosporine, the anti-rejection drug.
~ So this morning I called the clinic to report the rash and they wanted me to come in. The doctor numbed an area on my left shoulder and did something called a 'punch biopsy', finishing off with a couple of sutures. I got a dose of IV steroid (Solu-Medrol) and a prescription for daily doses of Prednisone (80mg). We also increased my cyclosporin back up to 200mg per day instead of 50mg. I was not particularly happy about this as high dose steroids can lead to a host of other problems such as muscle wasting, "moon face', diabetes, and immune supression among others.
~ But the eventual use of steroids is almost inevitable for transplant patients so I'll just have to deal with it. The doctor thinks that part of my lethargy, fatigue, and failure to thrive is partially due to the impending GVHD. Tish has been encouraging me to get a dog for companionship since i am home alone so much and, without energy, have not much to do. It probably isn't a healthy lifestyle. I am still undecided about the dog idea - I like my mother's dog but I think I like being a uncle rather than a parent of one. We'll have to see.

Friday, November 5, 2004 2:47 PM CST

Day +80 - I have had a down week, feeling increasingly fatigued, short of breath, weak and cold. Of course it has been cool and rainy this week. And the Colts have lost two in a row. I have been needing transfusions every other week so I thought that my hemoglobin must be really low. But it came back 9.3, almost the same as last week, well below normal but not enough for a transfusion. So I went for a chest x-ray just to rule out some brooding infection. I had my second monthly aerosol pentamadine treatment last Friday and my weekly gammaglobulin treatment today. We have steadily reduced my cyclosporin, an anti-rejecton drug, in hopes that my brothers cells will take over that 10% of my cells that we saw last month. In a week or two we will repeat the "whose cells are whose?" test.
I still have persistent stomach distress with occasional nausea. My appetite has only been fair. It is difficult to be at home alone every day with no energy to work on projects. I tired to do a little work on the sailboat last weekend but I am afraid the cold will prevent much more progress.
All for now. Will try to keep this journal up better.
dennis

Thursday, October 21, 2004 5:17 PM CDT

NEW POSTING Day +65. Sorry that I have been lax about posting a new entry. I am getting paid back now. I have been workin on this for an hour and have lost my letter twice when I was almost done. Maybe it's my still shakey fingers.
~ Last Thursday I went to clinic and received my first DLI or Donor Leukocyte Infusion. This is in the form of a small bag of mature white cells that were harvested from Mark, my donor, on his first day in town. The collection was divided in small bags and frozen in liquid nitrogen. I will get an infusion with one of these bags every 8 weeks. This is supposed to promote a graft versus leukemia effect (the curative principle of transplant) though at the same time it can instigate graft versus host disease (GVHD) in 4 to 6 weeks. They told me there would likely be no infusional side effects. But my nurse connected me to blood pressure and oxygen monitors, and sat in a chair next to me during the 10-15 infusion. There is one nasty side effect that affects others nmore than the patient. The cells are preserved with something called DMSO which keeps them from breaking apart when they are thawed. This causes the patient to give off an odor like burnt cream corn!
~ I didn't notice anything though over the weekend and thru this week, I was feeling increasingly weak, lethargic, fatigued, and short a breath with an increase of nausea. But the big excitment was not about me but about Aaron. He came home from class Sunday evening feeling sick. He proceeded to vomit throughout the night despite trying three different kinds of anti-nausea meds. We were up most of the night. Tish more than I as I had to stay away from the 'sickroom' since I could not afford to catch his virus. He continued to vomit so we were not able to maintain his blood sugars or his hydration, a situation that puts diabetics in a nasty spiral downward. In the morning Tish called the docotr and off they went to the hospital. Tish was there most of the time from Monday until late Tuesday afternoon as it was not clear when he might be discharged. I felt bad that Tuesday also so poor Tish had the two of us to care for. I went to bed at & PM and did not get up until 11 AM.
~ I did get a small break on Monday when I was able to go to a dinner-meeting of our local cancer nursing society. I felt nauseous most of the afternoon and hardly ate a thing. I longed to beef tenderloin and fresh salad. I did alright through dinner but was feeling wuite weak by the end of the presentation. I was able to see old faces that they, in turn, we able to see my new old bald head and face. I was about ready for bed when I got home at 9. But I had to make an afterhours run to our home care to get emergency supplies for Aaron's insulin pump.
~ Today I got an explantion for some of my recent symptoms. My AB and O red blood cells continue to battle each other and my hemoglobin was back down to 8.2. So in addition to my 2 hour gammaglobulin infusion I got 2 units of blood. We also looked at the results of a blood test from last week which showed that my blood was composed of 80 - 90% Mark's cells and 10 - 20% my own cells. This is called 'mixed chimerism' and is typical for patients with my type of transplant. It does call for a change in tactics, however. We will reduce my twice daily dose of cyclosporin, my main immune suppressor, to give my donor's cells a chance to dominate. We would have reduced the dose in a month anyway.
~ So we continue to plod along. Tish and I watch TV over the rumblings of my belly. Sunday we went to see the movie "Cellular" and ate at a small Mexican restaurant. I had to wear my jacket, hat and gloves for both as I was freezing. I silently watch for signs of GVHD, awaiting the turns this road will take.

Monday, October 11, 2004 8:48 AM CDT

Day +55 ~ Well, it's Monday but I don't go to clinic. I only have to go once a week now, on Thursdays. That's progress. I am sitting here typing with gloves on. It is 63 degrees in the house because the furnace is not working. The thermocouple is out, I think, because the pilot won't stay light. This is easy to fix so when it gets a little warmer outside I will go the the corner hardware store for the new part. In the meantime I am sitting here with my poor bald head covered with a cap.
~ I was at the clinic most of the day last week because my hemoglobin (red blood cells) had fallen again to 8.0. So I had to get another 2 units of blood. This may be my pattern for a while - 2 units every 2 weeks. My other counts, white blood cells and platelets, have also been falling steadily the last three lab draws. My doctor says that he is not worried about this. I will feel better iof they are heading back up this Thursday.
~ Also this Thursday I will get my first booster transfusion of my brother's white cells which were collected the first day he arrived here in Indy. Downside is that this will likely stimulate some degree of graft versus host disease (GVHD). I will get these transfusions periodically over the coming year. They will also stimulate graft versus leukemia effect whcih I want.
~ Otherwise I continue to have good days and not-so-good days. I still have daily nausea, some days wrose than others. My poor bald head also has a itchy post-transplant acne condition for which Tish applies a liquid antobiotic directly to my scalp.
~ Last Thursday I fixed dinner for my sister and her husband and my mother. I was pretty worn out on Friday. Last night I went to evensong at a nearby Episcopal church. They had a 60 person choir - all very British.
~ All for now. Thanls for your continuing support.

Sunday, October 3, 2004 3:15 PM CDT

Day + 47 ~ Had a fairly good week. At the clinic I found that my white cells had droped again after rising on Monday. My red blood cells had dropped also. The docotr thinks that my white count will rise and fall for a while. Tish accompanied me though she kept getting paged from work. I don't have to wear a mask when I go out now if I stay away from crowds.
~ Friday I went to the infectious disease clinic for my first Pentamadine treatment. We went back to the negative airflow room in the HIV/AIDS clinic. Like me these patients are vulnerable to pneumocystis pneumonia due to low T-cell counts. I first took two puffs of albuterol inhaler to expand my lungs. Then I held a tube to my mouth and breathed normally for 20 minutes. The medicine was in a small bottle below the tube so that I gradually inhaled it.
~ Friday afternoon Tish and I went to a late showing of 'Sky Captain and the World of Tomorrow'. This was a fun movie and the first time I had been in a theatre in two months. Only six other people in the audience so I was safe. Saturday we drove the Lake Monroe in Bloomington to meet up with our friends, Bob and Becky Bringle, and go sailing in their 23' sailboat. This was also relaxing though I was bundled up in three or four layers plus hat and gloves. It was sunny but cool, especially for me being anemic with the low red blood cell count. I was pretty worn out by the time we got home in the evening and was able to sleep until almost 10 AM. Lately I have been waking at 6 or 7 AM. Today the Colts won against Jacksonville - yeah!

Tuesday, September 28, 2004 1:59 PM CDT

Day +42 ~ When I got home from the clinic last week, I noticed that my neutraphil count was extremely low - 0.1. I talked with a nurse and she advised me to take neutrapenic precautions. So when Lisa called on Friday morning to ask if I wanted to go to garage sales, I responded that it would be too risky for me. Likewise a I declined an invitation to go sailing on Lake Monroe on Sunday.
~ Yesterday at clinic I showed the doctor my count sheet from Thursday. He said that the machine had trouble interpreting the results and that according to the graph I probably had closer to 1.2 neutraphils. Oh well!
~ On Saturday I drove my car (for the first time in 7 weeks) to the Central Library. I wore a mask. I went early when it wasn't crowded. I got a stack of books and cds. I had looked up the call numbers on my computer at home. Periodic nausea continues. In the afternoon I made a loaf of rye bread in the convection oven. It came out beautifully. By evening I was pretty exhausted.
~ Sunday was the Colts vs GB Packers. we won and it was a good game. On of the books I got from the library was a beginners guide to football. My mother brought me a piece of pie from church. Very little nausea that day.
~ Monday was my regular clinic day. Not taking the Septra anymore my counts had risen. Neutraphils 1.9. Hemoglobin 10.8 after the 2 units of blood last Thursday. After clinic I decide to do errands. I bought gas and picked up some groceries. I stopped by the Community Cancer Center. Several people did not recognise me without my beard and hair until I spoke. It was good to see everyone. Later I went to the boating store, the book store, a Goodwill store where I bought two small copper sauce pans for 98 cents each. Then I stopped at my Mom's. Tish had called home to check on my and my clinic visit. Then she began to sorry as the hours passed. I sorta got in trouble but light a candle at the dinner table in recompense. Only one or two transient waves of nausea today. Very tired in the evening.
~ Today is a beautiful day. Puttering around in the house and yard, having a number of times to overcome the inertia of just sitting. All for now - I need to go watch some leaves fall.

Thursday, September 23, 2004 6:39 PM CDT

Day +37 - ups and dpwns this week. For instance I was in clinic for 6.5 hours today because I needed 2 units of blood in addition to the gammaglobulin. My hemoglobin had fallen from 9.7 last week to 8.7 Monday to 7.8 today. My doctor thinks this is due to the ABO incompatibility between my brother/donor and myself. The other significant thing is that my white count had fallen from 5.0 last week to 2.7 Monday and 2.4 today. This is probably due to Septra, one of my antibiotics. So we switched back to Tequin, a pill. But we may have to add an IV drug called Pentamidine to protect me against pneumocystis pneumonia.
~ Backing up a bit Sunday was a good day - watched the Colts beat Tennessee, started my truck and motorcycle, enjoyed the good weather. Monday was good also. My mother took me to clinic and the doctor said I could drive. We went to White Castle, because I had the crave and because they are always fresh off the grill. The fries were good but the burgers tasted like cardboard.
~ Tuesday I woke up feeling nauseous and couldn't shake it. This continued all day and through all of Wednesday. I started taking Compazine and that helped. Then I wondered if this were the start graft versus host disease (GVHD) but the doctor said we weren't going to jump to that conclusion yet. I can still eat and take pil so we'll just watch it for now.
~ Yesterday I took a nausea pill in the morning and later felt good enough to run a few errands at Lowes and Good Earth food store. I drove the truck. It was fun.

Sunday, September 19, 2004 8:03 AM CDT

Day +33 - Yesterday was the best day that I have had in more than a month! I started with a pot of tea (which is tasting better though not normal) and reading cookbooks in the bright new breakfast room. A series of neighbors stopped by to tour our new kitchen. I puttered around the kitchen, did some reading, and did a couple of chores while Tish weeded the front garden and cut the lawn. The weather was gorgeous though cool, so much so that I took to wearing a cardigan sweater and on my poor bald head the West Chopper cap that my brother Garry sent me. I had to stay indoors as both neighbors were also doing lawn work, kicking mold spores into the air.
~ I started reading a novel late in the afternoon ('Ghostwrtitten' by David Mitchell)when I suddenly realized that my mind was clearer and more focused. Over the previous two days we had been tapering off two of my meds, including a antipsychotic we were using for nausea. This clarity seemed to make all the difference in my mood too.
~ I was prepped for this improvement Friday when my friend Lisa stopped by to visit. She had the top down on her Sebring convertible so we decided to go to garage sales. I put on a jacket, hat, and my N-95 mask and off we went for the next couple of hours. It was great being in the open air even with the mask. I was exhausted by the time we returned and had to sit in a chair for an hour. I finished making some raspberry Danish (needs some work). In the evening som of Tish's family dropped over to see the kitchen and vist, and we ordered pizza. Unfortunately pizza, among my favorite foods, still tastes like bread and wax.
~ Thursday was my bone marrow biopsy - painful but tolerable. I got to talk with 3 of my 4 transplant doctors. A blood test done last Monday on my circulating cells showed that there were all Mark's (my donor) cells. We won't get results of the biopsy for a week.
~ Today is another beautiful day. Had trouble sleeping last night due to my newly activated brain, so I was up at 6AM. We are going to take an early morning trip to the store. Then a Colts game at noon with ritual munchies (I am a new football fan). Later I hope to go outside and start up my motorcycle and truck.
~ Despite all that has happened, yesterday I felt truly blessed. Thanks again for all the support you all have shown Tish and me. dennis

Saturday, September 18, 2004 7:32 PM CDT

It is harder to find time to update the journal - i thought after Dennis got home there would be more time, but i forgot my interrupted life would need some attention too - work, shopping, cleaning - but it is good to feel more "normal". Dennis has had a great two days. Yesterday Lisa Jones came over to see him and they made pastry dough and then headed out in her convertible (with hat and mask and jacket) to check out some garage sales. Of course when I got back from work at 1:15 or so, no one was here. and no note. I saw no blood anywhere, or signs of panic (although the four canister was standing open and the kitchen was kind of a mess) so I tried not to worry - Lisa is a nurse practitioner after all. But after an hour I decided I had to know where they were, so called Jan Young at work to get Lisa's cell phone # - she knew where they were. I was relieved and a little annoyed that Dennis had not left me a note, but he had a great time, found some things he had to have and relished driving around in the convertible. Of course he was totally worn out, but it was a good kind of fatigue.
He just said to me a few minutes ago that today has been a really good. We think decreasing or stopping some of the meds has helped his mental acuity - he can actual sit down and read, which has been difficult before now. He has been able to occupy himself all day - before he said he often felt like he was just wandering around aimlessly.
He is looking forward to the Colts game tomorrow - he is a rookie football fan and doesn't understand it completely, but I am a willing teacher and he enjoys watching the games.
Oh, Kit's stress test showed everything is okay which is a relief. Tomorrow I will probably run up to the hospital to pick up a few things Dennis left behind and to check on other folks who are there - Sonia and the Schulze's.
I almost forgot - shows my head is in a different place than before when I started most entries with the "numbers"
The numbers are all still good and a peripheral blood test showed all blood cells are donor cells (yeah, Mark!). The bone marrow biopsy will give more definitive info, but we were happy to hear about the circulating blood. We are also approaching the time period when graft vs host disease may appear. So those twice weekly clinic appts. continue to be important.
Thanks for your messages. And yes, Fran I would love a ride to Monday's meeting. Tish

Wednesday, September 15, 2004 5:13 PM CDT

Day 26-29: I had hoped that Dennis would feel up to adding entries after he got home, but he finds his hands are too shaky to type. He thinks it is from the Cyclosporine - one of his many medications - we will ask the docs and nurses about it at the clinic tomorrow.

We are kind of settling in - I'll give you a brief run down of the last few days. Saturday morning we had a very welcome visit from Lisa who got to see our new kitchen and check out the new Dennis. I still have not gotten used to the new look and I have seen it daily for over two weeks. Dennis and Lisa had a nice visit. Visitors are great right now as Dennis has little energy to do things yet and the days can get long.
Sunday we both felt the house kind of shudder around 8 in the morning. I was sitting at the island in the kitchen having breakfast and Dennis was still in bed. I was relieved to find out later that Sharon had also felt what we later discovered had been a mild earthquake. I was worried that the header we put up after removing a load bearing wall in our kitchen was not adequate and that the back end of the house was thinking about falling down. Dennis was worried that the drugs were playing tricks on him again. It was a beautiful day and evening and Dennis and I went out for a walk to the "long corner" and back. (I wonder how many of the Stark family readers remember the long corner and the short corner?).
Monday morning we had an early clinic appt. and were not very organized - the first time we had to do the new clinic routine. I wished I had prepared his medications, including getting the cyclosporine ready to take with us to clinc, but I didn't and it took kind of long. We were down the driveway and about to leave (already a bit late) when Dennis remembered we didn't have the mask he needed to wear from the car through the hospital to the clinic, so I had to run back in to get that. We did grab the yellow pat. education folder with the list of meds in it. Dennis blood work continues to look fine with white count holding its own, hemoglobin rising slowly, but surely, and platelets coming along nicely. Magnesium levels as usual were low, so the magnesium pills were increased to two twice a day. But we got to eliminate the blood pressure medication for now and decrease the prednisone. Dennis spent a lot of time Monday looking at cook books and found a Quiche recipe he wanted to make, so I went to the store to buy the needed ingredients and a few other things.
Tuesday I went to work ALL DAY! Dr. Thompson had said Dennis didn't need 24 hr. caregiver presence as long as someone was close. This was good news as we thought Aaron was going to be home Tues., but he had to cover a day shift at work for someone who was on vacation. Since I work only a mile away on Tues., we thought this would be a good plan. Ann Brown came to keep him company in the morning. When I got home Dennis rode with me to Kroger to pick up the bacon I had forgotten to buy the day before.
Dennis made a quiche, which was most delicious and we had it with the marinated cucumbers he had made the day before.
I am really liking it that he finds the energy to do a bit of cooking. The day was topped off with a nice long visit by Jan Young.
Today Dennis is feeling a little weary and down - usually his spirits are pretty good, but I imagine it is hard when you want to do things and just don't have much energy at all. Tomorrow is another clinic visit - this one will be longer - 3 or four hours as Dennis will get the first of his weekly infusions of gamma globulin to boost his immune system. He also has a bone marrow biopsy to see what percentage of the bone marrow DNA is Mark's and what percentage is Dennis'. 100% of Mark would be wonderful, but we're hoping for a healthy majority at least.

This ended up being longer than I intended. I will try to write short daily updates until he is ready to take over again. Tish

Wednesday, September 15, 2004 5:13 PM CDT

Day 26-29: I had hoped that Dennis would feel up to adding entries after he got home, but he finds his hands are too shaky to type. He thinks it is from the Cyclosporine - one of his many medications - we will ask the docs and nurses about it at the clinic tomorrow.

We are kind of settling in - I'll give you a brief run down of the last few days. Saturday morning we had a very welcome visit from Lisa who got to see our new kitchen and check out the new Dennis. I still have not gotten used to the new look and I have seen it daily for over two weeks. Dennis and Lisa had a nice visit. Visitors are great right now as Dennis has little energy to do things yet and the days can get long.
Sunday we both felt the house kind of shudder around 8 in the morning. I was sitting at the island in the kitchen having breakfast and Dennis was still in bed. I was relieved to find out later that Sharon had also felt what we later discovered had been a mild earthquake. I was worried that the header we put up after removing a load bearing wall in our kitchen was not adequate and that the back end of the house was thinking about falling down. Dennis was worried that the drugs were playing tricks on him again. It was a beautiful day and evening and Dennis and I went out for a walk to the "long corner" and back. (I wonder how many of the Stark family readers remember the long corner and the short corner?).
Monday morning we had an early clinic appt. and were not very organized - the first time we had to do the new clinic routine. I wished I had prepared his medications, including getting the cyclosporine ready to take with us to clinc, but I didn't and it took kind of long. We were down the driveway and about to leave (already a bit late) when Dennis remembered we didn't have the mask he needed to wear from the car through the hospital to the clinic, so I had to run back in to get that. We did grab the yellow pat. education folder with the list of meds in it. Dennis blood work continues to look fine with white count holding its own, hemoglobin rising slowly, but surely, and platelets coming along nicely. Magnesium levels as usual were low, so the magnesium pills were increased to two twice a day. But we got to eliminate the blood pressure medication for now and decrease the prednisone. Dennis spent a lot of time Monday looking at cook books and found a Quiche recipe he wanted to make, so I went to the store to buy the needed ingredients and a few other things.
Tuesday I went to work ALL DAY! Dr. Thompson had said Dennis didn't need 24 hr. caregiver presence as long as someone was close. This was good news as we thought Aaron was going to be home Tues., but he had to cover a day shift at work for someone who was on vacation. Since I work only a mile away on Tues., we thought this would be a good plan. Ann Brown came to keep him company in the morning. When I got home Dennis rode with me to Kroger to pick up the bacon I had forgotten to buy the day before.
Dennis made a quiche, which was most delicious and we had it with the marinated cucumbers he had made the day before.
I am really liking it that he finds the energy to do a bit of cooking. The day was topped off with a nice long visit by Jan Young.
Today Dennis is feeling a little weary and down - usually his spirits are pretty good, but I imagine it is hard when you want to do things and just don't have much energy at all. Tomorrow is another clinic visit - this one will be longer - 3 or four hours as Dennis will get the first of his weekly infusions of gamma globulin to boost his immune system. He also has a bone marrow biopsy to see what percentage of the bone marrow DNA is Mark's and what percentage is Dennis'. 100% of Mark would be wonderful, but we're hoping for a healthy majority at least.

This ended up being longer than I intended. I will try to write short daily updates until he is ready to take over again. Tish

Wednesday, September 15, 2004 12:36 AM CDT

Friday, September 10, 2004 6:18 PM CDT

Day +25 (? I think). It's me again -Dennis, although still under a bit of chemo fog. I continue to be made humble by awareness that I don't seem to be able to plan my life, my disease, or the consequences of treatment. I was in the hospital for three weeks and a day. Most of it runs together in a mish-mash. I did not even open one of the six books I brought to rread, listened to only 2 or 3 of the dozen CDs, and only watched three movies.
~~ I know that, relatively speaking, I did well. Only one major injection (coag negative staph) which was controlled by antibiottics. No morphine or Dilaudid infusions for mouth pain. No diahrea. One of the lumens of my cathter clotted so we had to clean it out withTPA, sort of a Draino for catheters. We won't count my encounter with my bathroom door as a major event. Still I felt as if the biggest truck in the world had run over me.
~~ Now that I am back at homw I thought that I would ease back into domestic routine. But after two days I still feel profoundly fatigued most of the day. So I just puttered around on the first floor mainly, trying to keep myself hydrated. I seemed too unfocused to read. I have watched some old videos and DVDs. I have an almost constant sticky bitter taste in my mouth so that almost nothing tastes right. Peanuts taste like dried fish and cheeze tastes likw wax. And I am not allowed outside food yet. But a chocolate malt from Ritter's or DQ seems tantilizing.
~~ Went to the clinic this AM. Seems to be doing well - counts ok - 5.4, 9.8, 59K. The docotr asked if I wanted a litre of IV fluids but I declined. Will be going down there on Mondays and Thursdays now. Next Thursday I will start my weekly infusions of IV gammaglobulin. And on one of those days I will get a bone marrow biopsy (ouch!) to see just whose cells are growing in my previously barren marrow.
~~ Hopefully my energy will start to build up. The doctor cautioned though that the upcoming engraftment period is as important as this previous month has been. So I think that I will close this entry for now, leaving more typos than a pre-treatment entry. Besdies the typing has sort of worn me out. Thanks again for all the meassages of support. dennis

Wednesday, September 8, 2004 10:12 PM CDT

Day 22: HE'S HOME! Dr. Jansen got to the hospital at about 2:45, took a look at Dennis, asked a few questions, and agreed that he was ready to fly the coop. He also said that when he saw him Saturday he did not think he could possibly be ready to be released today - but a few minor changes to his treatment - add Prednisone, subtract Ativan - and voila! Dennis was up and about the entire day today (and very proud of that, I might add) and ate three squares. Of course it took till 7:45pm to actually get him out of the hospital. I had to do a few things at home, and go grocery shopping. I also had to pick up a long list of prescriptions from the pharmacy. Dr. Jansen was nice enough to drop the prescriptions off personally to our pharmacy in Broad Ripple, but it was another hour and a half before they were ready to be picked up.
We did get to see Sonia Dickerson and her husband John - Sonia had been a patient of Dennis' at Community and was at IU for radiation treatment pre-transplant. She goes into the hospital on Friday - the nurses said Dennis room will be prepared for her admission. I like it that she will be there. Everyone say an extra prayer for Sonia, too , please.
It will be wonderful for me just to stay home all day tomorrow and not have to run back and forth. I imagine it will be even more wonderful for Dennis to be here. But hopefully he can tell you all about that himself tomorrow.
I look forward each day to reading all your messages and sharing them with Dennis. From now on I hope he can read them himself and share them with me. Thanks to you all. Tish

Monday, September 6, 2004 10:43 PM CDT

Day 20: Things are going so well, I can hardly remember the dark days. Dr. Dugan says Dennis, barring any unforseen changes, will be able to go home in the next few days. Dennis is so much more like his old self and not plagued by constant nausea and fatigue. When he is up walking he is much steadier on his feet, is interested in listening to music and reading a magazine. He took a shower almost entirely on his own today. I don't think he will be ready to get back to work on the bathroom just yet, but I think he will definitely be able to enjoy being home. Now if we can just get Kit (mom, Nana) well and out of the hospital, we'll be in business.
Mark those white cell counts keep climbing - continued encouragement, please.
oh, and by the way, I can now go into Dennis room "naked" as Dr. Dugan says. Although he only means no mask and no gloves, it is pretty exciting to be able to hold Dennis hand without a layer of vinyl in between and kiss him on the top of the head without a layer of paper between us. I'll take it. Tish

Monday, September 6, 2004 6:50 AM CDT

Day 19: The best day yet. The fog has lifted, Dennis is alert and up and about, albeit slowly. He was essentially awake the entire day, had several periods of exercise, including a spin on the stationery bike and a longer stroll in the halls. We finished watching "All of Me" and he actually laughed out loud on a few occasions. Two meals down, although things don't taste right yet. He used the discussion about the taste of the food to teach the nurse the name of the condition (dysgusia - sp.?) and she promised to drop it into her conversation at some point during the day.
His white count went up again without benefit of growth factor. Red counts are kind of low, so he may yet need another transfusion. Platelets are way up, largely thanks to the extra platelet infusion he got after hitting his head.
A new problem - although this is the kind of problem I would rather have - now that he is awake most of the day, but still largely confined to his room, keeping him occupied so he doesn't go stir crazy. Calls and visits from friends and family would really help. Thanks for all your thoughts and prayers and words of encouragement. We spent a good bit of time last evening reading the journal entries and the wishes of all who have left messages on the website. I think it helped him realize how far he has come and how many people were thinking of him while he was feeling so badly. Tish

Saturday, September 4, 2004 11:11 PM CDT

Day 18: And what a day it was! Started off with a call at 2:30 AM from the BMTU at IU that Dennis had managed to crack his head open but was doing fine. He called shortly after to reassure me that he was fine, but quit talking to stand up and take a leak at the bedside without assistance, so I decided to just go in and make sure he made it through the night without further injuries. Which he did. The doctor decided after this episode that the Ativan for nausea was just not kind to Dennis in other ways - i.e. it kept him too drugged and wobbly - so no more Ativan. Dennis got out of his room for the first time since being admitted - he got to take a morning visit to the basement for a head CT to make sure he didn't do further damage than the cut to his head.
In addition to eating a fairly good breakfast, Dennis got up and walked around the room a few times, then rested in his chair while we listened to Summer Pierre's new CD just out from That Promising Sea Dog Media, and a birthday gift from Nathan. We both recommend it.
I went for a walk in the afternoon while Dennis napped and got back at the same time Barbarann arrived. Since we were both there, I thought this would be a great time for Dennis to venture out of the room sans wheelchair. Dennis wasn't sure he agreed, but the thought of strolling around the unit with two babes on his arm was too much to resist.
He was greeted with cheers from the nurses station when he poked his duck billed mug out the door. We made it around the unit and back with one rest stop in the chairs conveniently situated for that purpose.
A quiet evening looking forward to watching the fireworks out Dennis window was interrupted by a call from Aaron saying Nana (Kit) had just called him at work saying her chest was hurting and she couldn't catch her breath. I told him to have her call 911, but when I called her a few minutes later she had not called, so I did. Barbarann, who by that time was on her way home to Bloomington, was rerouted back to Indy and she and I met Kit at St. Vincent Hospital. She is spending the night there for more blood work and observation, but was making friends with the hospital staff when we left.
All in all - with a couple glaring exceptions - a good day. Counts continue to improve, Dennis was much more awake and active today. Hope to continue down this road tomorrow. Tish

Friday, September 3, 2004 10:04 PM CDT

Day 17: As the Dr. said today, Dennis sure looks good on paper. His white count is up to 3.9, his kidney and liver functions look great, no signs of infection, platelets have been holding steady. Now we have to work on getting him to feel as good as he looks on paper. I think he is making slow progress, but is still plagued by the nausea and sometimes pretty violent dry heaves. He has a physical therapist working with him on bedside exercises - she was getting ready to take him out for a short walk in the hall today, but he got sick when he sat up to get out of bed, so that was that. But he did get up and actually sit in the shower today and get cleaned up - that was progress and made him feel better, too. I will be there most of the day tomorrow and the plan will be to get him up and moving periodically throughout the day, and then let him rest. Hopefully he will be able to eat a bit more, too. I am anxious to see him well enough to think about coming home. Tish

Thursday, September 2, 2004 10:09 PM CDT

Day 16: Counts are up again - to 1.9 - one more day of growth factor, then we will see how his white cells do on their own. The days are beginning to take their toll on both of us. But Dennis did take a few spins on the stationary bike today - a first step in the right direction. He was also started on three meds to try to address the recurring problem with nausea - one is a motion sickness patch, the other a new anti-emetic can't remember the name which he will get IV and the third is Zyrtec. All the meds are a little mind boggling and make me just a bit nervous, but hopefully they will help. I am still trying to recover from a pretty sleepless night on Tuesday, so will once again be short. Tish

Thursday, September 2, 2004 8:05 AM CDT

Day 15: Well, the growth factor helped Mark's white cells do their thing - his count jumped up to 1000 yesterday. He got one more dose as they want to be sure the count stays above 500 from now on. Now if his belly would settle down we would really be able to SEE the progress - in him, rather than just on the board. Maybe today? I'll let everyone know. TIah

Tuesday, August 31, 2004 10:00 PM CDT

Day 14 - Everyone is getting a little impatient now with Dennis' white count, so he got a growth factor injection today to give them a little encouragement. His temperature was slightly elevated this evening, which often happens after getting Neupogen - maybe it's a result of all those white cells revving up.
I think Dennis could use a little encouragement - the days are beginning to drag on and kind of melt into each other in a blur of nausea and fatigue. I hope to see a bit of spark back again soon - although he still occasionally surprises folks with his little zingers and dry humor. More of that, please.

Tish

Monday, August 30, 2004 7:11 PM CDT

Day 13: Well, the < was gone this morning! Not a big jump, but it is in the right direction. Unfortunately, the nausea and dry heaves continue to plague Dennis. He really did not get up or eat anything today. I was not there when Dr. Thompson came today so I am not sure what he thinks about that, but know he is generally pleased with the way everything else is going. I just wish Dennis felt well enough to appreciate it, too.
Thanks for all the birthday cards and encouragement cards Dennis is getting. I'm going to bring something to display the passion flower picture, Mark G, and was thrilled to have a picture of you and Gwen. I know she is pulling for Dennis, too. I will wave to her when I go out in the morning.
And thanks for the cards and words of encouragement for me (and Aaron!) - Bert, a massage sounds wonderful. I get as much comfort and pleasure reading all the notes in the guest book each day as Dennis does. More tomorrow.... Tish

Sunday, August 29, 2004 10:50 PM CDT

Day 12 - I'm losing track of my days - the last entry should have been Days 10 and 11.
When I spoke with Dennis this AM he asked me to bring the electric clipper and razor, so i knew the hair thing was progressing pretty rapidly. So, today Ben and I shaved off his beard. It is like like looking at a different person - one I have rarely seen in 33 years of marriage. He looks much more like his brother Garry, and, as Aaron pointed out, like Nathan. Den didn't quite make it up on the stationary bike today like Dr. Akard was pushing for, but he was more active and alert. Watching a movie does seem to keep him up - we watched an old one today - "Spies Like Us" with Chevy Chase and Dan Akroyd and I actually saw him spontaneously smiling several times! Now, that was a sight for sore eyes. So if anyone has a longer bit of time to spend and wants to bring a movie to share, I think it will be a hit!

As to the reference to the "dissappearing Marcia" - when I returned that day, Dennis kind of opened his eyes and pointed to the empty chair and said "Marcia is here." I looked around, behind things , in drawers etc. (ha, ha), but could find not a trace of Marcia. Glad to hear she is still with us. And thanks to all in radiation for the card and balloons. Finally, keep praying for that white count to go up - I look at the board in his room where daily counts are posted the first thing when I come in. So far they continue to register <.02 - I think I would be happy just to see the < gone. Patience, it will come. Tish

Sunday, August 29, 2004 10:06 AM CDT

Days 11 & 12: Friday was another difficult day, Dennis was feeling lousy all day and didn't feel like doing much of anything. Sharon came over in the evening and brought a movie, however, and he did rouse himself enough to watch the whole thing. That felt like a victory. In the middle of movie, however, he had a pretty violent bout of dry heaves - loud enough to attract the attention of a nurse out in the hall. Another dose of Ativan settled that down and didn't put him to sleep until AFTER the movie. We kept him up kind of late, though, and then he had trouble getting to sleep during the night. When Sharon and I arrived Saturday morning bearing birthday surprises and gifts he had had a good sleep for about 4 hours and was up, had already had breakfast and was looking better. He didn't get the improved white cell count we were hoping for for his birthday (not to worry, the docs say there is still plenty of time for this to happen), but he was greeted by little hairs all over his pillow in the morning. We were thinking he might have to ask Lisa and Peg to bring over the shaver for his head again if this didn't happen soon, but I guess that won't be necessary now. It was a good day for his birthday - he had balloons (including those he got a few days ago from the mysteriously dissappearing Marcia) a Happy Birthday sign hanging on his window and lots of little presents. He didn't have cake, but he did have one bite of strawberry ice cream. By the time Barbarann and I offered to sing Happy Birthday later in the afternoon, he would have none of it. so it's a good thing Dr. Akard got a rendition in earlier in the day. All in all it was a good day, but we did wear him out. With Dr. Akard's encouragement, we are going to be working on building up his stamina - getting him out of bed and walking a little bit more than he has been. Hope he doesn't see me as a mean taskmaker, but somebody's got to do it... Tish

Friday, August 27, 2004 6:14 AM CDT

Day 9, part 2: I forgot to mention in yesterday's entry that Saturday is Dennis' birthday. I had planned to invite folks down to visit (two at a time of course!), bring surprises etc., but don't know yet if he will be up to lots of folks coming to see him. Of course cards, mylar balloons, other greetings would also be great. Thanks. Tish

Friday, August 27, 2004 6:14 AM CDT

Day 9, part 2: I forgot to mention in yesterday's entry that Saturday is Dennis' birthday. I had planned to invite folks down to visit (two at a time of course!), bring surprises etc., but don't know yet if he will be up to lots of folks coming to see him. Of course cards, mylar balloons, other greetings would also be great. Thanks. Tish

Thursday, August 26, 2004 10:30 PM CDT

Day 9: A difficult day. Everything is still going well medically, but Dennis has felt really poorly the last two days and is back to sleeping most of the time, eating very little etc. It was particularly hard to see him feeling so miserable today, even though I know this is stuff we just have to get through. Maybe it was being able to enjoy a bit of the old Dennis on Tuesday that made the last two days more difficult. It's kind of like those really warm days in late February and early March that get you excited about Spring, only to have a wintry bast of weather reminding you we 're not there yet. But it is coming, we have to hang on to that.
I have decided that what would help me is to have some company while I sit with Dennis on the days he does not feel up to being sociable, or when medication has zonked him out. It has started getting kind of lonely sitting with him, but I don't want to leave him by himself too much either. Sharon is going come to the hospital to be with us tomorrow.

Keep the prayers and encouragement coming. Tish

Wednesday, August 25, 2004 10:59 PM CDT

Day 8: This is going to be short - Dennis and I both partied too hard last night and I am exhausted. So was he, by the way, so not as "up" a day as yesterday, but things still going well. White counts did not go up today, but as this was the first possible day they might go up, no one is concerned. Maybe tomorrow. More packed cells today - he seems to be alternating packed blood with platelets. Good thing they don't need to be given on the same day - he has so many IV's hanging now, I'd don't know where they would put it. More tomorrow. Tish

Tuesday, August 24, 2004 11:47 PM CDT

Day 7: When I opened the door to Dennis' room today, he was up in the chair, with his glasses on, eating breakfast!
Another good day. No fever, ate two meals and was actually talking to people. We even watched a movie together tonight. His platelets were way down (8000) so got another unit of those. Tomorrow is Day 8 and his white count should be on the way up by then. They have been holding steady at 200. I think he may be up for more visitors soon.
Today he told me he thought Lisa and Jan had been there yesterday. I asked them if they had come again because I knew they had been there Sunday evening. Still a lit mixed up on his days etc. I stayed a bit late today as the movie was interrupted several times for dinner, hanging IV's, checking vitals etc. AT least I missed the rain. More tomorrow. Tish

Monday, August 23, 2004 10:47 PM CDT

Well, I just checked the page and discovered that the last two entries I thought I posted did not make it onto the Journal. so i will try to do a condensed version here.

Sat., Day 4. Dennis woke up feeling pretty good, but that rapidly deteriorated into feeling pretty lousy. He started chilling and aching and was generally miserable. Then the fever started, indicating he may have an infection. Blood cultures were drawn, IV antibiotics started. After having a fairly good appetite, he ate only a blueberry muffin all day.

Sun., Day 5: The fever broke in the morning and stayed away most of the day, which made for a better day. He was finally able to get some restful sleep, even entertaining the nurse and I with his snoring. The culture came back positive for Gram + bacteria, but the IV they were treating him with was good for that, so that continued. He also received platelets as his platelets were down to 11,000. By midafternoon he was chilling - teeth chattering chilling - and his fever spiked back up pretty high.

Mon., Day 6: No fever all day! Dennis even talked a lit bit today and got some "nurse-type" friendly jabs in when the infectious disease doc came in. He was pretty drugged due to medication for nausea even hallucinating a little bit. I had to be at work a good part of the day and was worried he would miss me, but he said he thought I had been there all day. Makes me feel indispensible! He also asked (jokingly - he's not that bad!) if we were sleeping at the White House. He is having some unusual dreams, too.
The doc felt that Dennis may have hit the pits the last couple of days and hopefully will start climbing out soon.
Two more units of blood today.

Well, I am tired and this entry seems a bit rambling. Too bad the other entries did not post - I think they were more interesting. Anyway, thanks everyone for your interest and positive thoughts and prayers. Tish

Friday, August 20, 2004 10:26 PM CDT

Day +3 - everything is still looking good, counts didn't fall too much today. Dennis is still feeling puny but he is up in the chair more each day, and does not sleep nearly as much, so he seems better or at least holding his own to me. His room #, by the way, is 5276. Thanks for your comments - I will print the new ones off and bring them in for him to read tomorrow.
Am trying to decide whether to tell Dennis that the car died after I left the hospital tonite and I had to call AAA. They said it would be 21/2 hrs. before they could get to me, but within 5 minutes a AAA truck pulled in - someone is watching over me. Dennis is the one we all call about car problems and I am now driving his baby (Maxima) so I think he will be upset or frustrated that he can't do anything. It is probably the alternator, but we got it started and I made it home, so will deal with it tomorrow.

Tish

Thursday, August 19, 2004 9:33 PM CDT

Jut a short note - we are at Day 2 and everything is going well - of course if Dennis were writing this page he may have a different opinion! He is still very weak and "fuzzy headed" and we are not referring to his haircut!
His counts are all dropping as they should be so he probably will need a transfusion Fri. or Sat. to increase his hemoglobin. So far no mouth sores, vomitting, etc. that can expected from the Melphalon. The longer we go without having to deal with that the better. I forgot to bring his Room # with me to add to the journal so folks can send cheer Dennis up cards. I will try to do that tomorrow. And thanks for all of your good wishes and comments - I printed them off and brought them to the hospital for him to read today. Tish

Tuesday, August 17, 2004 9:29 PM CDT

I am writing for Dennis today as he was admitted to IU Hospital today and doesn't have access to a computer yet.

Dennis had a wonderful day on Sunday - watering the plants, putzing around in the yard, sitting on the bench in the front yard to actually just enjoy it for the first time. And he took the last motorcycle ride for a while
-he told me "just a short ride", but was gone a little longer than expected. He returned as I was trying to talk myself out of being REALLY worried, and was a bit apologetic, but happy. Dennis then donned his chef's hat to make "Shrimp Diablo" - Sharon, Maggie, her friend Monica, and Colin joined us for a delicious dinner.

I left for work Monday - Dennis' mom was taking him to clinic - thinking about how well things were going. But when I spoke with Dennis by phone that afternoon he sounded terrible and was asleep on the couch when I got home. He was terribly fatigued and out of breath with any exertion. Essentially, he slept the rest of the evening. I managed to get a dish of ice cream and very little fluids down him. This AM it was much of the same and when he almost passed out in the bathroom, I knew he was in for another rough - if momentous day. The docs felt if he was experiencing that much weakness and fatigue it would be a good idea to admit him a day early so he could rest, be hydrated etc. So that's what we did.

But the stem cells are in, that went well, Barbarann recorded it on digital camera (which is good because Dennis slept through the whole thing!) and we will hopefully share some of the pictures on this site.

Keep those thougts and kprayers coming! Tish

Friday, August 13, 2004 2:33 PM CDT

Days -5,-4
~ Things seem to be getting better or else I am just learning to accommodate symptoms better. I'd best get used to that. On the positive side my Campath infusions were able to be speeded up so that we were in and out in 3 hours or so. And today was the last day that I needed sleepy-time Benadryl. Tomorrow I only get Fludara, a 45 minute visit, though we need to be there at 7AM. But then I'll have the rest of the day and no sedative effects. Sunday I only get Melphalan and should not feel the effects of that megadose for several days - until after I'm in the hospital.
~ On the negative I do feel my energy waning and have a fuzzy brain when I leave for the rest of the day. The rash still occurs though not as intense. The thinking ironically is it may be related to the Campath and so will self-limit in a couple of days. In the meantime I have started on Claritan and Zantac, H1 and H2 antihistamines, to control the hives and itching. We may go back to my original antibiotic, Tequin, which has better coverage against gram + bacteria. Another funny side effect is that my voice gets weak from the daily doses of Solu-medrol, a steriod.
~ We went to a Chinese buffet last night, watched a DVD, and today are trying to finish up details in the kitchen. Tish is grouting the tile now. Hope the get the bathroom well along over the weekend.
~ Several weeks ago I started packing a bag for the hospital. It seems strange to be planning for such a long stay. I am a bit aprehensive. Realisitically and symbolically going into the hospital will be like saying goodbye to my old life. Tuesday, day 0, my stem cell infusion day, will be the point of not return. So I hope to enjoy the weekend.

Wednesday, August 11, 2004 6:18 PM CDT

DAYS -7,-6
Continued ups and downs. On my 2nd chemo day we arrived at 7AM so to be finished in time to get my new catheter in place at 2PM. Today we tried oral Benadryl which caused me to be drosy but not zonked. I noticed a rash on my legs in the afternoon. We called it to the doctor's attention and mentioned that I had started on three different drugs. By the time I got down to the surgery waiting room, the rash had spread all over my body, including my face, some of it changing into large welts. Talked with the surgery nurses who conferred with the docs. Final decision - since they were behind schedule anyway, wait until the morning, like 6:45 in the morning. A nice lady gave us meal passes so went had lunch in the cafeteria. I had not eaten since midnight.
~Today went smmothly. I decided to take the conscious sedation this time after talking with the radiologist who would install my new triple lumen Hichman. I was still awake enough to tell my radiology joke. The procedure seemed to go smmothly, not quite as uncomfortable as the first one. I was taken by cart back to the clinic then put in a bed instead of a recliner this time. The nurse fixed me some tea and Tish bought me a wondeful jelly donut and English muffin. I took my oral Benadrl, got my Fludara, Solumedrol, then Campath. They said my doctor was in but I have only a vague memory of that.
We stopped on the way home for a Big Buford cheezeburger. Then I went grocery shopping with Tish, my last such trip for a while. Bought a few exotic things like fresh cherries, raspberries, and blackberries and a canister of frozen lobster bisque. Tonight we will go to a movie. Tomorrow should be better yet. We start at 8AM. My Campath can now run over 2 hours so we may be out by noon. My head's a little fuzzy but it's kinda fun.

Monday, August 9, 2004 8:03 PM CDT

Days -10 thru -8. Ups and downs already......
~ Saturday was an interesting day. We went to a Team in Training Hall of Fame celebration for the Leukemia Society. My left chest and left upper back continued to be painful so I started using Vicodin and heating pads in stead of Tylenol. Then we went to a small party given to me by people I used to work with. They bought me severals brands of microbrewed beer. But the big entertainment came later when several of my friends took turns cutting my hair, first with a scissors, then with beard trimmers. It was the longest, funnest haircut of my life. I recommend the ritual to anyone going thru chemo, so much better than waking up in the morning and finding clumps of hair on your pillow. I will post a photo or two later.
~ I have printed my wep page address on my computer on little slips of paper which I can hand out. Sunday we spent most of the day putting wall tile up in the kitchen. In the evening my son Ben and his wife Dorothy came over for an early birthday for him. I was very tired from the day's activities and went to bed early.
~ Day -8 was the day that I thought would be the easiest this week. Wrong! (I hope). First my brand new Hickman proved to be every so slightly malpositioned. The nurse, Lisa, could inject fluids but not draw back blood for my many labs. The quick answer is to have a dye study done to see if it was kinked or malpositioned. But since I was at St. Francis instead of one of my preferrred hospitals, we had to get special permission from Sherri, my case manager. She facilitated the procedure and the catheter showed itself to be in too small of a vein. So the decision was made to remove my brand new catheter tomorrow and to have a new one put in by radiology at St. Francis. More pain and stress. Not an auspicious beginning to this new journey.
~ The second disappointment was that my doctor thought that I needed Benadryl since I had been off Campath for 3 months. So I had to get 50 mg IV and became sedated almost immediately with surred speech. I spent the rest of the day sleeping, finding to very difficult to answer even simple questions. Tish had to take me out to the car in a wheelchair. I slept all the way home and for 2 hours after. My mother had driven me in the morning and spent to rest of that, for her, uneventful day watching me sleep.
~ So what I had imagined to be an easy day - Campath only - was not. Tomorrow I have to be at the clinic at 7AM in order to get both my Campath and first dose of Fludara in by the time of my surgery at 1:30. So nothing to eat or drink again. I forgot that I was hungry today until almost 8PM. So that was the last few days - talk about starting to have second thoughts!

Thursday, August 5, 2004 8:11 PM CDT

Today I feel as if I have become an official patient again. I had my triple lumen venous catheter put in in surgery today. My left arm, chest and shoulder ache as I type this entry. I went to Methodist Hospital, signed in, went to admissions, then registration at the outpatient surgery center. Then back to pre-op to change into the familiar backless gown and have an IV started. The surgery suite was cold. My surgeon, Larry Micon, was waiting for me along with a young female surgical resident. I elected to go without the sedative Versed so I would be more fully awake. The procedure was uncomfortable, lightly painful at a couple of points, but bearable.
My surgeon mentioned that once he was on the internet, entered his name as a search term, and found my on-line journal in which I described my original nodal biopsy that he performed.
This catheter, known as a Hickman, comes out of my left chest, white tubing that then divides into three separate tubes. It tunnels under my skin to underneath my collar bone where it enters a large vein and is then threaded thru my superior vena cava to just outside my heart. These tubes can be used to draw blood, infuse fluids, antibiotics, morphine, blood products (including my brother's stem cells), and nutrition if I need it later on. It will stay in for 3-6 months or longer if necessary. The dressing and the caps on the ends of the lumens need to be changed several times a week. We are connected with home care nurses for this. I have to be careful taking a shower or getting it snagged on anything (although it is held in with sutures)and can't go swimming. The big risks are infections at the site and blood clots at the tips.
Hopefully the tenderness will ease by tomorrow. I want to begin tiling the kitchen and bathroom before chemo starts on Monday. The nurse said that by Wednesday I will really know I am getting chemo and may have to slow down on my ambitious extracurriculars.
I'll close now and make another post after I start chemo.

Monday, August 2, 2004 1:27 PM CDT

The clock is ticking. A man just came to my door to deliver supplies for caring for my venous catheter which will be put in Thursday. This makes it seem more real.
Over the weekend I did my last talk for Berlex, the company that markets my main drug, Campath. This time it was in Seattle. I have also done talks in Houston, Chicago, New York City and New Jersey. I basically talk with a group of 2 dozen oncologists and hematologists about what is what like to go thru therapy twice, once with IV Campath and once with subcutaneous. The Berlex people have become good friends and the docs seem to reposnd well to my presentation. These are always plush events as 4-star hotels, starting with a Friday reception and a Saturday evening dinner at a nice restaurant. I get picked up from and driven to the airport in a chauffered town car. This last time someone at the company was thoughtful enough to book me first class on the return flights.
It occurred to me that during these meetings I have had the chance to talk with dozens of cancer doctors including a good half dozen of the world's formost specialists in leukemia.
Here in Indy over the weekend a number of Tish's sisters and niece's were busy cleaning, scrubbing, polishing, vacuuming, orgainizing, arranging, sanitizing every visible surface in our house. The window glass would be invisible if not for the sparkle.
I am plannig to add more photos but have been having difficulty making this feature work consistently. Keep yourselves posted. dennis

Monday, July 26, 2004 3:16 PM CDT

Things are moving forward, the clock is ticking down, I am getting anxious. Tomorrow I will go to the dentist to have a cleaning. This will reduce the severity of sores in my mouth and throat which will inevitably come a week or two after my chemo is completed.
Tuesday evening I meet with my Team in Training. This is a group of people who are raising money for the Leukemia and Lymphoma Society by running in marathons held this fall in San Francisco and Dublin. My job is to help motivate them and give them a human face/story to connect with their efforts. I was an Honoree for another team last fall that ran at Disney World.
The house is coming together slowly. After nearly four months without a kitchen, we expect the granite countertops to be installed tomorrow. Over the past months we have knocked out a load-bearing wall, installed a large beam to carry the weight, tore out walls and ceiling plaster, tore up 3 layers of old flooring, and hauled away our 50 year old commercial refrigerator. We have new appliances, the first new refrigerator we have ever bought and a dual fuel 40 in range. We have not had a freezer on the main floor since we moved in 15 years ago. Ice cubes are a luxury.
Next is the master bathroom which has been gutted for a number of years after we had to repair sagging joists in the living room ceiling. I am trying to finish up the backer board and ready for tile installation. I don't know if I will finish in time for the transplant. We are remodeling these rooms so that they will be easy to keep sanitary after my discharge - the 84 years old originals were just too difficult.
I have started a pile of books, videos, and CDs to take with me to hospital. The whole thing is becoming too real and too immediate. At least I can keep busy.

Wednesday, July 21, 2004 8:03 PM CDT

This page has just been created. Tish and I and my sons, Ben and Aaron, attended the patient orientation today at IU Hospital. One of the things that we learned about was how to set up my own web-page so that friends and family around the world will be able to keep up-to-date on my progress. This will also make it easier on Tish, cutting down on phone calls and e-mails to let people know what is going on.
My schedule: August 5 - insertion of a long-term IV line called a Hickman catheter - an outpatient procedure at Methodist Hospital; August 6 - meet with the home care nurse for instruction on caring for the Hickman; August 9 - begin chemo at IBMT clinic at St. Francis Hospital, everu day for the next 8 days; August 17 - I receive my brother's stem cells (the transplant); August 18 - I am admitted to IU Hospital for 2-5 weeks. Make your calendars! Say your prayers!.

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