Wednesday, October 25, 2006 8:32 AM CDT

Significant transitions in our lives are/will be occurring as we approach the darker and colder months in Minnesota. It's a time for taking a deep breath and moving ahead in faith…

First, after much consultation with my Mayo doctor, the Mayo pharmacist and with my prescription insurance plan of the Board of Pensions, and after much conversation and prayer in our family, I decided to enter the Revlimid cancer treatment plan. My blood test markers were amazingly normal with Velcade, but increased tumor activity on my worrisome left leg was reason for a change.

Our choice was between taking other, more traditional IV chemotherapy at Mayo with increased possibility of infection because of my impaired immune system, or increased possibility of blood clots while taking Revlimid at home. As the lesser of two ominous evils I chose Revlimid. It is a highly restricted and monitored drug. I had to take two surveys ahead of time. The drug was delivered to my home via FedEx from Mayo, one of only sixteen distributors in the nation. I started yesterday.

Revlimid is a newly FDA approved (June 2006) oral drug for patients with a history of recurrence of multiple myeloma after one or more treatments; it is a refinement of Thalidomide, which I have taken in 2003-4. It is taken daily at night for three weeks, then a week off. Blood tests will be done every two weeks by my home health agency to report my white blood count and platelets. If these are too low I may need a transfusion. It is very expensive ($6000 per three week supply). Thankfully, my prescription plan will pay all, but $100 per month. One benefit of this change is that we only travel to Mayo one day per month for check in with the doctor and to reorder the Revlimid instead of six times per month with Velcade. This is a great relief especially in the cold of winter..

Along with Revlimid I am to take an aspirin daily and 20mgs dexamethasone once per week. And watch for any fevers, chills or pains in my legs or chest. I will monitor my temp and blood sugars daily for a while and do daily exercises also.. "An unexamined life is not worth living .." has become my motto.

So far, so good. We pray that the tumors will be controlled and that clots or fevers will not appear.

The second transition is from the Board of Pensions as my primary health care insurance to Medicare. This will happen on November 1. D's coverage as my spouse remains with the Board, so there will be some confusion as we enter this new phase of medical bureaucracy.

There are new deductibles for hospital ($992) and outpatient coverage ($131) for me, then Medicare pays 80% of the outpatient and 100% hospital. The Board will monitor my out of pocket expenses, then pay what Medicare doesn't pay after my outpatient limit ($1620) is met. D has $420 deductible and approximately $1620 out of pocket coverage; it's unclear if her out of pocket and mine are the same family out of pocket limit as has been the case in the present system. One of many questions we are asking as we enter this new phase of convoluted health care As in the present systems, co-pays continue ad-infinitum without counting toward either limit. Perscription coverage (a big part of my life) continues as before. Totally separate figures and system.. Hold onto your pencil and calculator!

The third transition is easier to take. The change of season is in full swing. D and the boys have been finishing summer projects, harvesting crops and preparing the gardens and lawn for winter. It is a busy time and the weather has turned cooler and damp. Yet, the asters, mums and sedum continue to regal us with beauty on our front walk.

To celebrate this transition:

a) D, Corlin, Boots and I took a trip around Lake Como, about 1 and 1/2 miles. It was fun to see the geese and ducks, the water, the sky and the walkers of all shapes and sizes with their dogs, headbands and pace monitors.. The solemn last treks before the Minnesota winter.

b) Ted and I went out to play golf twice (I rode in the cart and watched for only a $1). A golf course is a wonderful social time if you don't have to be bothered by finding your wandering ball!! We had a great time!

And c) D, Boots and I went out to see the Mississippi River for a short jaunt since I wasn't going to Mayo all the time. Trouble was we blew a tire. While waiting for the tow truck Boots and I napped and D read a book. Then to the tire store for a new tire. A different kind of outing, but fun to see our frisky dog walking in the tall grasses.. The plan as I guess it is to get me out to social and nature things while the weather is still amenable… I really appreciate it!

That's the full, complicated mess we are walking or stumbling into.. We take a deep breath, pray and ask many questions. Best wishes as the season of Thanksgiving approaches… and thanks for your prayers and support.

Rick

Thursday, September 7, 2006 12:32 AM CDT

Dear Family and Friends,

A brand-new bouncing (literally) Hickman is snuggled nicely into Rick’s chest! There is now access for blood draws and chemotherapy. So we can move on…

The surgery apparently went smoothly, using the old Hickman as a guide to insert the new. (Think snaking a new wire through conduit, or elastic through casing.) Heavy sedation helped Rick through it and left him loopy but satisfied.

The simulation for radiation also went well – and finished in time for the transition between the two Mayo campuses. The exciting, new news from the simulation was Dr. Miller’s desire to compound the potency of the radiation by combining it with chemo. This means that the actual radiation will not occur until next Tues. and Friday when the Velcade resumes.

Thank you for your prayers and comfort. Please pray for the effectiveness of the radiation in arresting the tumors, for wisdom in discovering the next paths, and for stamina to continue to travel this road.

Blessings to you all,

D

Sunday, September 3, 2006 3:49 PM CDT

Dear Family and Friends,

We didn’t see the eagles… this time. The last 48 hours have been very much Through the Looking Glass: the ‘impossible’, the ‘wonderful’, and the sad all mixed up with uncertainty and unpredictability.

To begin with the impossible and wonderful: When I awakened in the motel room (Wabasha) yesterday morning, there on the floor, between the beds were the two lumens of the Hickman catheter, broken off immediately against the hub!! Since January 2005 they have been firmly grown into Rick’s chest – but there they were far from him. Fortunately, he was snoring, alleviating my immediate fear. Since the Hickman is a tube (catheter) directly into the subclavian artery, and since it broke on the wrong side of the closing clip, it is only God’s grace that no blood was lost. It may have been Rick’s sleeping position, or that of the catheter, or a fortunate clot – or the touch of an angel.

When Rick awoke (I watched him closely for about 15 minutes) we clamped the tube, called his doctor, and made all deliberate haste back to Mayo. Hence no eagle watching. We then spent six hours in the St. Mary’s ER, listening to people say “This isn’t supposed to happen.” “I’ve never seen this in _______ years of nursing/medicine.” “I need to call.” “I don’t know what to do.”. Rick was stable, it was Labor Day weekend, and so the sense of urgency was in inverse proportion to their perplexity. The eventual resolution was to put an IV clamp (smaller than the scissor’s clamp I carry) on, put a sterile dressing over the whole thing and tell us to call on Tuesday to arrange a surgery to replace the whole thing. Rick’s assessment: six hours for a paperclip!

We were both terribly disappointed that our time off the leash didn’t materialize – not eagle watching, no cheese and ice cream at the Nelson Cheese factory, no wandering along the river. We have promised ourselves another try this fall – and will include another trip on MN 60 between Wabasha and Zumbro Falls. We drove it yesterday because it was the shortest distance between two points – but it is a wonderful road. Full of curves, views, woods. It should be spectacular during fall color. (Driving on WI35 on Friday we passed a slough which was evidently a heron rookery – perhaps 2 dozen herons all together! Magnificent.)

That was the Saturday. Now for Friday.

The options are constricting. Rick’s blood work continues spectacular: the Myeloma in the bone marrow is well controlled. BUT, the tumors on his leg are a continued problem. The ones below his knee MAY be responding to the two doses of radiation earlier this month. At least, they do not appear to be growing. Those on his thigh are widespread and growing. Why?

The probability is that the tumors are encouraged by the low grade staph infection in Rick’s artificial knee. More and more research indicates that Myeloma is a subsequent step in infection. (Most infections are resolved, some produce a protein (interleukin 6) which is always present in myeloma.) In other words, Rick’s left leg is apparently the perfect bio environment for the growth of his cancer. The dilemma is that most possible responses have been tried, or are ruled out:
1) Circulation throughout the leg is very poor.
2) There has already been too much radiation to most of Rick’s leg.
3) Surgery to the knee to try and wash out the infection carries significant risk of amputation.
The remaining question is whether the tumors are growing because they are unresponsive to the chemo therapy (wrong drug) or if the poor circulation is keeping any drug from reaching the tumors.

So the plan is to try one more drug – maybe. Revlamid was only approved by the FDA this summer and is very expensive. We don’t know exactly what that means – the velcade is $1000/ dose. Hence, the first step is to see if Revlamid will be covered by insurance. Until then:
1) Do a two shot radiation on the tumors on Rick’s thigh.
2) Continue with the velcade.
Then, if using Revlamid, the tumors respond, we know it was the drug. If not, then the problem is delivery. (The plus/minus is Revlamid is an oral drug. This may mean less 52 trips. It is given in combination with dexamethazone – we have had previous experience with this steroid.)

The simulation and radiation are planned for Wed., Thurs., and Fri. of the coming week. Velcade was scheduled for Tues. and Fri., but of course, can’t happen until the Hickman is “fixed/replaced.” So Tues. morning we will begin the process of scheduling that surgery (the hope is that the remaining catheter can be used like a guide wire to place a new one). You will recall that when this Hickman was placed we were told to guard it carefully as the surgeon was not optimistic about being able to place another. My guess is that Rick will have surgery on Wed. or Thurs. and that velcade (which has to be on a M/Th or T/F schedule) will resume next week. Depending upon the timing of surgery/radiation it may make sense to spend an overnight in Rochester.

But, as Dr. Lust was wise to point out = all Rick’s infections have been controllable and, unlike many MM patients he has avoided the life-threatening pneumonias. For that we are thankful.

Thank you for your prayers. First, thank God for the wonder of Sat. As Rick said when I showed him the lumen, “I’m not dead yet.” Ask too that the radiation will be effective on the current tumors and that a solution for drug delivery will be found. September promises to be a full and complex month. Your help and support are important to us.

Blessings and peace,

D and Rick

Monday, August 21, 2006 2:35 PM CDT

The weather is blissfully less humid, but the ragweed index is up and that means D’s allergies are, too. However, a plus is that our garden has been producing all manner of tomatoes (Tuscan, Nepalese etc. ), squash, scallions, beans and flowers, flowers, flowers! Even the dog enjoys part of the day walking in our beautiful garden!

The latest chemo cycle is over without incident. The two radiation treatments were routine. Now we wait. After a bout of increased neuritis in my left foot on the Saturday after radiation and some passing fevers, all is well. Thanks to two good friends D had a whole week of rest from driving to Mayo! Her blood sugars remain stable. So we are resting, watching and waiting.

We celebrated the birthday of a good friend on Tuesday last week, and Pippa’s birthday on Thursday, so it was a happy week for us. Corlin has a new (old) job at Target to provide income. He is still looking and hoping for something in computers – but entry level positions are requiring 5 years of experience. (Sad face). Ted finished a beautiful job of more pavers in the yard. Lots of good things happening! It is a good time to be around 1039 Ingerson Road these days, rather than at some lake!

But the unquestioned word for now is wait. August 29/September 1is check in time at Mayo to see a) how the tumors have reacted to the radiation and b) if the Velcade is still keeping the MM at bay. IgG score was an astounding 952 on Aug 8. We wait to see if it continues..

We sincerely hope that all is well with you and thank you for your prayers…

Rick and D

Saturday, August 5, 2006 8:59 AM CDT

Dear family and friends,

Thank you to all of you who have been waiting with me through this week. The diagnosis is that I have “a lumpy, beat up thyroid” which will need to be watched, but requires no further treatment at the moment. Dr. McIver, in his Glaswegian accent, considers it "a volcano which can’t be called exactly quiet but shows no signs of imminent errrrrrruption." Probably because I was Iodine deficient growing up in land-locked Colorado.

He suggested jiggling a couple of other things in my regime toward my goal of being as free as possible of medication. It is exciting to watch my body recovering and functioning more smoothly, and relearning to trust it. Lots of work ahead, but I plan to be blessedly free of personal doctors, scans, ex-rays, blood draws, etc. for a minimum of 6 weeks, after which everyone will be relegated to yearly reviews along with the dentist and eye doctor (I hope). Finger sticks, alas, continue.

God is good: restoring me to health and in providing the expertise which brings Rick comfort and amelioration of his cancer.

Next planned update after our Tues. check in and the beginning of the radiation of Rick's leg tumors. Please pray that this minimal radiation is successful adn thank God for blessings received,

D

Wednesday, August 2, 2006 5:43 PM CDT

Dear friends and family,

Some of the pieces of the new puzzle are beginning to reveal themselves. So now we put it together:

After the mandatory head nodding the Mayo radiation oncologists decided on a very conservative approach to Rick’s tumors. A review: there are multiple tumors on his left leg – most immediately below the knee. This is an area that has been radiated at least twice before. Each time an area is radiated, small circulatory systems (both blood and lymph) are destroyed. Coupled with the multiple surgeries (with their collateral assaults on circulation) on Rick’s leg his circulation is VERY compromised. Any more radiation will only add to that permanent damage, even though the tumors may require it.

Hence: the current plan is a two-shot IT radiation, as opposed to a conventional 15 shot series. This will coincide with a round of chemotherapy so that we will be attacking on two fronts simultaneously so to speak. Then they will reevaluate on the 29th of August. At the same time the effectiveness of this particular chemo. will also be reviewed.

The heavy duty antibiotics and their consequent restrictions ended this a.m. Rick may now return to eating ice cream and cottage cheese (not together).

We met with his internist today – who confirmed the assessment that Rick is well until he’s not. And when he’s not he is very NOT. But presently all systems are functioning adequately to well.

Next update: this weekend, following my (D’s) ultrasound of the thyroid bump.

Until then, may you remain cool. Blessings to you all,

D

Monday, July 24, 2006 9:18 AM CDT

Grace to friends and family,

I brought Rick home yesterday afternoon. He comes with a pharmacy of medications - but all of them oral. The immediate goal is to spend a week (the rest of July) recuperating and recovering. When not monitoring capsules and tablets. We have a chart: what when, with (or without) what, how far apart from. Two of the antibiotics do not play well together and one of those and another are too friendly with Calcium. They would far rather hang out with dairy products (binding to the Calcium) than getting into Rick's blood stream and doing the job they are paid for. So - we must enforce various separations.

He feels well and is eating well - although, aside from the dairy, he is still restricted to "not chewy" foods. And the bed is his own, the shower is his own, the chair is his own and he again has 24 hour/day access to the laptop and the remote.

Our next planned step is to return to Mayo on August 1st to consult with the radiation oncologists. There are also medical appointments on the 2nd and 4th and the chemo resumes on the 8th (aside from daily radiation should that occur.) Hence this becomes a critical week for duck herding.

Should nothing noteworthy (please God) happen I will not report it. Next planned update will be the 1st. Until then please thank God that they were able to control the infection and that Rick not have any of the critical side effects possible with these strong antibiotics. A squish of rain wouldn't hurt either.

Blessings and love to you all,

D

Friday, July 21, 2006 10:31 AM CDT

Dear Friends and Family,

I can see that many of you are checking on progress and I thank you for your support, love, prayers.

Rick is feeling much better today than yesterday. Low grade fever - but pretty perky. That is really all I know for sure.

No one is giving him signals (today) about going home today and not tomorrow either. I think we can rule out today. Tomorrow is looking less likely. Just don't know.

The challenge with a teaching hospital and five specialties involved (hematology/oncology, infectious disease, orthopedics, oral maxillary surgery and now radiation oncology) is discovering the "rank" of a pronouncement and the amount of information behind that pronounement. What a 'private' says (1st year resident) doesn't have the same reliability as a 'general' (consultant). There are several generals involved. Usually Mayo is very good at general consultation, but this time we are having more difficulty discerning the overall plan. So ... we are guessing and I think that is a reflection of their guessing. My guess is that the signal Rick got yesterday about coming home today was from someone about the rank of corporal. (Because he is in 'isolation' everybody comes in gowned and gloved - you know you're dealing with a doc or a nurse or an lpn - there is no chance to judge the length of a lab coat).

Yesterday Dr. Walker, the ID General, came and told Rick that they had pretty much discounted both his knee and his Hickman as locus of this infection. Alleluia! Both of those would have been very difficult. They are still thinking pretty much in the jaw...

Today Rick's regular oncologist came to visit and check on the progress (or lack of) the tumors. He was not pleased and has called in the radiation oncologist. That would mean 15 sessions (every day). His assessment was that going home is "one the horizon" but no decisions have been made yet. Maybe Monday. Dr. Lust, however, is not on hospital rotation and so is not actively involved in the decision process about discharge. His assessment can best be called an informed opinion.

So - repeating our mantra - "absolutely, rigidly flexible" we continue on.

Thank you and blessings to you,

D

Thursday, July 20, 2006 9:06 AM CDT

Blessings and greetings,

As I said Tuesday night - maybe not. We have some information and some new wrinkles and continuing vagueness.

To summarize:

Rick: They did extract Rick's two teeth (lower premolars) yesterday morning. All seemed fine (at least as expected). But no visits from doctors or new orders last night. Then Rick spiked a 103 degree temperature this morning! This is with two different megaton antibiotics running. So... maybe we have found the source of the septecemia or maybe not. It does seem (wonderful news) that while there is some infection in the knee, that is not the source of the septicemia. More cultures this morning which means, as far as I can predict, that he will be hanging in Rochester for at least another 48 hours.

D: The MRI showed only the expected changes in my pituitary! Yeah! No sign of recurring tumor. Consequent diabetes numbers are also great (AC13 is 5.5 for the cognoscenti) and so we have a plan to try weaning off the insulin. Consequent BP issue is not so clearly improved, nor the lipid readings. Still - next MRI is not necessary for 9-12 months and I would not need to return to Mayo for myself, except. They discovered a nodule on my thyroid gland which needs to be "checked out". The statistics are in favor of it being benign, but with the Cushings not overwhelmingly so. (One tumor in the endocrine chain leads one to suspect other bumps in the endocrine system.) So - I will be returning for an ultrasound in early August.

Go figure: We had severe thunderstorms in Rochester yesterday. The hospital protocol for severe storm warnings: come into each room and close the blinds! :) If there is a tornado sighted or if things get very severe they move patients into interior halls. But I love the blinds step. If Rick hadn't been having his teeth pulled at that exact time he would have been frustrated - he always hangs around the windows watching storms come in. When he was mobile I used to have to drag him to the basement ...

I am returning home today for an uncertain duration. I came down here on 1 hours notice and 2 1/2 hours sleep and need to get some ducks in better order. For better or worse Rick and I are pretty skilled at hospital long distance support. We have a schedule for checking in. I can call him "free" and he has a phone card to call me.

More when I know more,

Blessings to you all -

D

Tuesday, July 18, 2006 11:00 PM CDT

Good evening,

Some news tonight.

Rick had a pannogram (fancy tooth and jaw xray) which confirmed an abscess. The plan is to extract two teeth tomorrow. The surgery will be "out patient". Not that Rick is being discharged from Methodist for the surgery. Instead he will be trundled across the skyway to the Oral//Max surgery clinic, sedated, mined and then returned to his room. Give Rick some sympathy - this is the middle of his favorite season of the year - corn on the cob - and gnawing on cobs will be out for a couple weeks. By which time he is afraid the fresh crop will be over:(

No one is saying this abscess is THE source of the septic reaction. But it is at least a contributing factor. Tomorrow will have given the cultures 48 hours to grow and the Infectious Disease doc. will have more specific information and then hematology/oncology, orthopedics and ID will again put their heads together and pronounce.

Hence, I may have actual information by tomorrow night: a diagnosis and plan for Rick and the results of my followup tests (MRI etc.) scheduled tomorrow.

Until then, blessings to you all,

D

Monday, July 17, 2006 9:03 PM CDT

It is a constant temptation to wait until we have a resolution before posting anything on this web site. I MUST resist that temptation.

At this point Rick is again resident at Methodist Hospital in Rochester. Last night, half an hour after our going to bed, he woke me with severe shakes and gasping breath. At midnight and with those symptoms Mayo was too far and we went to United. Steroids soon stabilized things and by this morning his temperature dropped from 102 back to 98.

So … off to Mayo. It appears there is some active infection. The fear is that the infection is again in Rick’s knee. The hope is that it is in his tooth. Since we arrived about 3:00 they have cultured his blood, cultured the fluid from his knee, x-rayed, EKG’d, analyzed, consulted and I think prayed. Nobody is lining up to operate on the knee; the consensus is that surgery carries a real risk of amputation. Results of some tests should be in tomorrow.

Last week we visited with Dr. Lust and the infectious disease doctor, following the dropping of the IV antibiotic. Although several tumors have appeared on Rick’s leg – right at the suspect knee – it seemed that all was stable according to the numbers. So, the decision was made to try at least one more cycle of Velcade with the expectation that the tumors would recede. If not, we would consign Velcade to our growing list of failed therapies and move on to the very latest FDA approved drug for MM.

But the best laid plans have again gone awry.

So – the current plans (a very formal word for something as fragile as our intentions) are for me to remain in Rochester through Wednesday night. Results and diagnosis for Rick tomorrow. Wed. I have follow up tests (including an MRI) and consultations about the pituitary tumor. But we will see…

Until then, thank you for your prayers, thoughts and support.

D

Friday, June 16, 2006 1:05 PM CDT

Dear Friends and Family,

Rick has completed his ‘post-hospitalization-check-in’ and resumed Velcade chemotherapy. (Heavy medical explanations to follow – summary is that for right now things are good.)

We spent about 14 hours on our Mayo sojourn on Tues.: blood work, urinalysis, chemo, consultations with both Dr. Lust (oncologist) and Mr. King (PA – infectious disease). The news is guardedly good: all Rick’s #s are amazing. The prime marker of myeloma activity is essentially unmeasureable. As previously, infection triggers tumors and antibiotic surpresses them. Hooray!

Of interest is that Rick’s surface tumors are almost exclusively on his left leg (site of both hip and knee replacements – and in fact, appear to cluster around those two joints). As Dr. Lust says, if we could figure out why we would understand much more about how myeloma works. There is a current “fleet” of tumors around Rick’s infected knee – we are confident that the combination of vancomyacin (heavy artillery antibiotic) and velcade (chemo) will shrink them to oblivion.

Of further interest is the status of the staph infection. This is one of those items which is fascinating in the abstract and frustrating in the experience. The bacteria staph epis colonizes on the metal and plastic of joint replacements. It then secretes its own ‘star wars type shield’ or biofilm and becomes dormant. This combination makes it essentially impervious to antibiotics. In this condition it can linger for years, with the host (patient) actually unaware and without symptoms. Then something triggers the bacteria to reproduce (often some kind of injury or insult to the joint or depression of the immune system) and things ‘explode’. (There have been cases where WWII veterans have had staph outbreaks 40 years after their joint replacement!)

Rick has now had 4 or 5 septic episodes, not counting the MRSA in his right leg wound in 2004. One was clearly from an infected port. One (last Dec.) was clearly from a staph epis infection in his left hip prosthesis. The last (May/June) was equally clearly from a staph epis infection in his left knee prosthesis. The probability/possibility is that he has had this bacteria since the initial hip replacement in 1997. Trauma or depression of his immune system (which is what chemo does) sometimes allow the staph tiger to escape from its self-constructed cage. This “breakthrough” could happen again and again. Or it could happen never again. Depending on what and where the options for treatment are the same as the last time: IV antibiotic to surgery to “scrub the knee”. The later involves significant risk of amputation. The next time when the chances of a breakthrough are increased are the week of July 4 when he converts from the IV antibiotic to an oral one.

We are off to Mayo this afternoon for another round of Velcade, and then next Tuesday and Friday for repeat performances. We then have two weeks respite (4th of July) before beginning the cycle again.

In the meantime are spirits are good and our gratitude is great. Wednesday night we had a wonderful potluck with choir members here. Rick delighted in singing all the ‘old hymns’ when we gathered around the piano following supper. (I did too, of course.) An amazing joy: this morning a red-tailed hawk landed on one of the deck posts less than 10 feet from where Rick was eating breakfast.

Rick sends best wishes to all of you (me too) and repeats his gratitude for your prayers and friendship,

D

Friday, June 2, 2006 10:06 PM CDT

Wedding Anniversary 32

Dear friends,

We are together again – under one roof!

Arrived at Methodist to pick Rick up around 1:30 and actually left Rochester by 3:00. That is some kind of record for discharge. (Although we are getting smarter about the process and letting a lot of stuff happen before we even plan on my showing up.) The primary delay was in the printing of the discharge summary. Each edition (4 total) required a minor correction and then a complete reprinting. We were, of course, asked to return the earlier copies. 

The drive home through the sprouting corn and the warming sun was relatively easy; although we arrived in the Twin Cities at the peak of rush hour. Reached 1039 almost simultaneously with the home health nurse – who came bearing 4 days of vancomyacin and a review of instruction in its administration. Because he was here – Corlin trained – and so he can be come one of the back-ups.

Current plan: Rick stays at home, has vancomyacin IV twice a day (takes about 90 minutes per drip). We are thinking 8:30 or 9 to start – as a compromise between sleep patterns and other activities. He is also taking an oral antibiotic. For two weeks he does this, eats yogurt (vanc. Is very hard on the digestive tract), does PT and recuperates. Various blood levels are drawn by the homehealth nurse at regular intervals. Assuming all is copasetic we return to Mayo on the 15th.

Warning Will Robinson: after 12 days of separation from the lap top, expect a veritable spate of e-mail.

The Wednesday summary (see previous entry) was pretty accurate. The knee is septic – we hope the vancomyacin (until July 3) followed by a strong oral antibiotic will keep all in check. Should that fail surgery is still an option (the feeling of the orthopedist was 60-40 against surgery – in consultation with the infectious disease doc and the oncologist) – but surgery comes with very, very high risks. Rick was quite impressed with this orthopedic surgeon.

Hence, we hope for a “quiet” couple of weeks – at least as far as Rick is concerned. Nothing to do but eat Pearson’s Salted Nut Rolls and watch the roses bloom. For Ted and I it will be a busier two weeks. Ted begins a new job Monday (in daylight hours thanks be to God) at Comcast and we both are attending the UCC Annual Meeting next weekend.

Several folk have asked how I am doing in regards to the December surgery. Thank you. My body still seems to be adjusting to the hormonal changes, but following a pretty rugged April and first couple of weeks in May, I am beginning again to feel pretty human. I actually have some energy and have gone several days without requiring a nap. We’re about half way there (to full recovery) and I think it will get easier and easier from here on out. Or else what I have is called aging, wear and tear.

So – pray, please that the Vanc. Works and that we don’t have a flair of the infection. Also, that Rick’s multiple myeloma remains in check while the infection is treated aggressively.

Wednesday, May 31, 2006 9:30 PM CDT

Dear Friends,

“Here we go loopy-de-loo”. The roller coaster has turned us upside down again. Or rather, right side up.

Short news (as of tonight): no surgery.

Long news: the oncologists, infectious disease docs and orthopedists at Mayo have consulted and have told Rick the following:
1) Any surgery on his knee is very risky and could result in the loss of that leg. (Let us thank God we resisted the rush to the OR we were faced with last week.)
2) It is probable that this staph infection has been nascent since February, when the vancomyacin was discontinued.
3) The blood tests indicate that vancomyacin is again controlling the infection. (Sed rate and CRP reduced significantly.)
4) The velcade, which treats the myeloma, depresses the immune system. When the immune system is depressed the staph is released to play.
5) Hence – for the foreseeable future it will be a balancing act between immune suppressants to treat cancer and antibiotics to treat infection, in combination with a cocktail to control pain.
6) Rick will probably be released Friday(!) to come home on IV antibiotics.

While disappointed that there will be no opportunity to “fix” the botched job on his knee, we are mostly relieved that the ordeal will not be as intense as we had been told. Tempering this gratitude is the knowledge that the scenario of the last ten days may be repeated (again and again).

Details to be released tomorrow, schedule will be projected, and we will be reunited under one roof just in time for our 32nd wedding anniversary (the first for several years that we will spend together at home).

Thank you for your prayers and wishes.

Grace to you,

D

Tuesday, May 30, 2006 10:37 PM CDT

Dear Friends,

We have Rick in the right zip code! But not the anticipated hospital. He is currently resident at Methodist Hospital in Rochester, having been admitted by his oncologist (Dr. Lust) who then called in the orthopedists as consultants..

At 9:30 this morning (the first day Dr. L was back from a week’s vacation) it was decided this was the most expeditious strategy. Of course, it was STILL 1:30 this afternoon before United could process the necessary material for the hospital to hospital transfer. Enough of that.

Rick spent this evening having tests and anticipates more tests tomorrow morning. We have no definitive word or schedule or even diagnosis at this point. (It may be that this is not an infection surrounding the prosthesis but in the bone itself.) I came home this evening with a plan to return and stay (motel) when we have a better schedule. If surgery is to be performed Rick will be transferred to St. Mary’s. In any case, I can be there in 2 ½ hours maximum from the time I get a call.

In our evening call he said that he felt more confident because the doctors/nurses seemed more confident and did not project the touch of panic he had been sensing the past week. This is, of course, an important factor.

We plan on talking again tomorrow around noon when Rick expects to have further, if not final word. I will keep you all informed. In the interim – thank you for your words and wishes and prayers,

D

Friday, May 26, 2006 5:40 PM CDT

Dear friends

Primal scream!! We are still in St. Paul/United and likely to stay here now until next Tuesday. We have been waiting since Wednesday morning for an imminent phone call telling us to gather everything up and go to Rochester. At 3:30 this afternoon Rick(!!) heard from an orthopedics secretary at Mayo that nothing would happen because of the holiday weekend. He had the choice of staying here until then or moving to Rochester. In either case he would be hospitalized, receiving IV antibiotic and so he chose to stay close to home and friends – i.e. at United.

At this point we must assume that we will move next Tuesday. Because it is the end of the month it will be more difficult for Corlin to come along, Pippa is in the midst of inventory, and Ted is finishing up his job.

I am extraordinarily frustrated (close to loosing my cool) and Rick too is upset. At this point there is nothing we can do but sublimate (I have a corner of the yard to dig up and a Pentecost service to prepare), document (on Wed. it will be 5!! weeks since we first sought assistance with this urgent problem) and pray that the infection stays controlled..

Next update on Tuesday – unless something more happens.


D

Thursday, May 25, 2006 7:23 PM CDT

Rick is still at United. We are not where we thought we would be. We are not where the doctors here want us to be. But, the correct people were not able to speak with the correct people at the right time and in the right order and so any transfer to Mayo will happen tomorrow. (I hope, because if not we are then in the thick of the Memorial Day Weekend)

In the mean time, we await the phone call that says “go”. The doctor here wants to monitor Rick until he turns him over, but Rick is feeling well enough to be frustrated at staying in the hospital with nothing happening but IV antibiotics twice a day. And – two suppers and two snacks tonight because of everybody trying to take special care of his frustrations. He expressed an interest in French fries and so he got an hamburger and fixings in addition to the stroganoff he had originally chosen. (??)

Thank you for all your good wishes and prayers. Hoping to write tomorrow from Rochester.

D

Wednesday, May 24, 2006 8:06 PM CDT

Dear Friends,

This is an update to tell you to look for future updates.

As some of you know, Rick was admitted to United Hospital on Sunday morning with chills and fevers. The first diagnosis was a staph infection followed by nuclear medicine imaging which confirmed infection in his artificial knee. Further investigation was done today - aspirate of the knee, primarily. There is also a possibility that his hip (as last Dec.) is also involved.

The current plan is to transfer to the care of Mayo doctors tomorrow. The orthopedic surgeon Rick saw today agrees this is the best chance. We do not know the schedule or the type of surgery which Rick faces – there are several possibilities. It may be he will have surgery as early as tomorrow or as late as next Tuesday.

He has essentially been in bed for the entire week and, is comfortable with his current medication levels. As he says, this feels again like approaching Niagara falls – emotionally we are quite anxious.

Corlin and I will transport him to St. Mary’s hospital tomorrow and check into the American Inn in Rochester. How long we will stay depends upon the surgical schedule; throughout the summer we will balance motel and home with Rick’s needs.

I am able to pick up e-mail while at the hospital and will check each day. We will update each evening.

We look for your prayers and support. One doctor has called this “catastrophic.” We will see … Pippa, Hilary and TH are keeping the home fires burning, the plants watered and the dog fed on this sojourn.

Love and blessings,

D

Sunday, March 26, 2006 5:15 PM CST

Rick’s Mom died last Thursday morning at the age of 89. Although she had a variety of chronic illnesses, she was seriously ill for just over a week. We thank God that for Mom all earthly suffering is over and that she is at rest. For ourselves we are sad. In this coming week we are traveling to Freeport IL for the funeral.

Rick completed this cycle of radiation last Tuesday. The tumor is shrinking and the radiologist is now very optimistic that the wound where the tumor was will heal without any surgery! Good news! We were able to make all of the radiation appointments except for the day of the BIG snow which closed Highway 52. That day we didn’t even try.

The plan is to “take next week off” (not really) and return for blood work on April 5th. Then, assuming the numbers follow the earlier pattern, Rick will resume 2x a week chemo on April 11th.

D had her 3 month evaluation last week. Almost nothing but great news. The MRI showed no sign of the tumor, confirming the surgeon’s report that he had removed it all. (This will need to be monitored for several years – as with all tumors, one cell left behind is enough to cause a recurrence.) Her endocrine system, freed of the tyranny of the excess ACH produced by the tumor, is reviving and beginning to function “normally”. Thyroid, adrenal, even pancreas are working at various levels. Hence, because all these things are working so well, we cut the supportive steroid to a lower dose. More withdrawal symptoms – which are even now passing. The next cut in steroid supplement is to zero!!

Next evaluation is this summer, at which point we will begin looking at decreasing insulin injections. The one reservation was about the joint stiffness and soreness which has persisted. It is possible that this is a different condition and the pain which simply “masked” by the high steroids. The strategy is to take Tylenol more regularly (stop being so tuff, D) and reevaluate that too in the summer.

Spring, resurrection, gardening – the seasons turn. Bless you all,

Rick & D

Tuesday, February 28, 2006 8:22 AM CST

Report from Highway 52 between St. Paul and Rochester

We have returned to making this trip 5 days a week. As always there are several variables which have converged. This is going to get rather medical – but I hope not technical.

Rick has two presentations of Multiple Myeloma: 1)systemic disease, akin to leukemia in which his body produces malformed plasma cells. 2)plasma cytomas, in which these plasma cells gather and form a tumor. For many people these tumors occur in the bone. Over the last several years Rick has had a few bone tumors, but most of them have occurred on his left leg and often on the surface. If left untreated these grow and grow and grow and eventually break open.

This has happened again. There is a tumor in his groin which we were “watching” during the period Rick was off chemo. As long as he was on the IV antibiotic (vancomyacin) it remained quiescent. When he went off that and on to the oral Minocycline it erupted and is now the size of a small plum, open and draining. There is another tumor lower on the inner thigh and still below the skin surface.

IV chemo is not effective on these large tumors. The two options are surgery and/or radiation. Because of Rick’s surgical history and history of infection, radiation is the preferred, though reluctant, choice. Because this area has been radiated twice before (1997 and 2001) there has already been damage to the tissues which results in the edema which is so troublesome. Further, there is about a 50% chance that surgery will still be required to close the wound following the collapse of the tumor.

So the plan: 15 sessions of radiation on these tumors in the hope that they – and any other nascent tumors – will be obliterated. Yesterday we met with the radiation oncologist. Rick went immediately to the simulation which sets up the positioning of the radiation (they create a cast which insures the body is always in the same orientation to the radiation). Mayo uses CT technology to determine the exact extent of the tumors and so is better able to pinpoint the radiation. Treatment begins this afternoon (February 28th). Should surgery be required, it will be a much smaller deal and probably more successful, although the difficulties of radiated skin are not negligible.

At the same time, Rick will continue with the Velcade chemo therapy (2 days a week for 2 weeks, 1 week off). This is proving effective at controlling the systemic disease. The tracking numbers last Monday were identical with those three weeks previously. At 50% protocol and with the neurontin Rick is finding the side effects tolerable.

So this means – off to Rochester each day, with radiation scheduled 5 days a week and chemotherapy also scheduled on two of those days. One day every three weeks there is a great assessment involving lots of lab tests and a meeting with Dr. Lust, the hematologist. If all goes as planned, the next week which will not involve time in the beautiful southern city of Rochester is that of March 28th.

On the other front – the last C-Reative Protein (CrP) was well within normal limits (.6) indicating that the sepsis in the hip, which provoked the December surgery and resection, is successfully conquered! Back to prophylactic antibiotic. Tomorrow is the final (fingers crossed) sign off with the orthopedic surgeon.

On the third front (are we encircled?) I am recovering as expected. Finally chopped off my hair to 1” so I could wear hats continuously as I am cold most of the time. Some muscle pain, some joint stiffness and still searching for stamina. Who would have thought a tumor less than the size of my little fingernail could create so much havoc? Next big step is mid March when another MRI is scheduled as well as a slew of blood work to assess how successfully my body has (or will) resume its normal self-regulation or/and how much hormonal supplementation will be needed.

In summary, prayers: gratitude for all of those who have given us so much, safety in travel, the quiet destruction of these tumors with healing of the skin, the continued effectiveness of the Velcade, and courage to continue the journey.

Peace,


D

Thursday, February 9, 2006 1:46 PM CST

Time marches on since our last entry. The mildest winter month of January is matched by a mostly uneventful month indoors. D and I continue to put one foot in front of the other; some mornings much better than others. Rick’s IV Vancomycin treatments at 8 then 9am were a challenge for D, who would wake all achy as the steroid levels in her body continue downward (a good thing except for the side effects).. In the dark of a January morning we quietly went about our routines. Even the dog would not always get up.

Slowly the sun crept up earlier each day, bringing us hope and renewed energy. After a long cloudy spell, it was so good to see and feel the sunshine pouring through our windows.

After six weeks, on January 25, we were prepared for six more weeks of Vanco (sounds almost like Ground Hog Day, right?). The CRP factor for infection in the body was going down slowly. The home health agency was ready to reorder. Then the infectious disease doctor called and said he decided to switch to an oral antibiotic. My progress had been “going in the right direction” enough! Freedom! Freedom to sleep in. Freedom to go around. Freedom to attend church again after almost two months.

The bad news of the Vancomycin of course was the persistent neuropathy or neuritis, I am not sure what to call it. I had neuritis in 1999 (?) after radiation. My left leg felt like it was burning up if I stood too long. The same left leg was feeling intolerable pain now. So, Dr Corbett prescribed neurontin, a different approach than the Vicotin (Tylenol and codeine) I had been gulping every three hours to little effect.

Now sleep was possible, sitting and talking with friends without cringing in pain. Now walking and doing typing on the computer were possible without tears… My feet are more numb, but do not threaten to fall off.

As February approached and the sun shone into our lives, we thank God for all the friends who brought food for lunch and dinners, when our energies simply gave out for the day. What a blessing!

We began Velcade treatments (chemotherapy) on Jan 31. My myeloma remains stable in the presence of Vancomycin even through I had been without Velcade or any other cancer-fighting drug for eight weeks. Maybe we are showing the research community something about this person’s myeloma.

And maybe we are showing something about a miracle and an answer to prayers, many, many prayers! Thank you. We are not alone in our struggles, and you are not alone in yours. Thanks be to God who gives us the victory in whatever place we may be!

Blessings to you and yours in this remarkable season of hope!

Rick

P.S. The elk are looking great on Hwy 52 just south of Oronoco. Check ‘em out!

Eleventh Day of Christmas, January 4, 2006 2:21 PM CST

January 4, 2006

Dear Friends,

The trip to Rochester and back has been accomplished and we have good news.

The markers for Rick’s cancer have remained stable, even though he had only two doses of chemo in December and two in November. After careful consideration Dr. Lust chose to postpone resumption of chemo until the end of this month.

The reason for this is that Rick will continue on the IV antibiotic Vancomyacin until the 26th to treat the bone infection in his hip. Mixing that with Velcade is, as Rick refers to it, putting Nitro with TNT. Both drugs are very, very strong. In addition, both have neuropathy as a side effect. Imagine the worst “falling asleep” in your foot you have ever experienced. Remember the prickles “waking up”. Multiply by ten, extend the feeling clear to your hip and then rub with steel wool. That is what it feels like for Rick, even taking oxycodone. Given that scenario it seemed best not to add another causative agent.

Finally, as we experienced in 2004, Rick’s myeloma is very sensitive to inflammation and antibiotics have a positive effect. So – it is not as if we are doing ‘nothing’. The glad, sad news yesterday was that Rick was the only one of 50 patients who responded positively to the experimental drug that he took for nine months last year. That was an anti-inflammatory agent. Glad because it makes our ‘normal’ summer even more of a miracle, sad because this wasn’t the break through for all 49 other people, or for future MM patients.

All his other counts looked good – blood chemistries etc. While his hemoglobin was down from last month, it was still a respectable 11+. For Rick that’s great.

Until he receives clearance from the surgeon to bend his hip more than 90 degrees, Rick rides in the back seat of the Santa Fe – sliding across the seat with his legs stretched out. As you can imagine, the 90+ miles to Rochester were a challenge. It was good we spent Monday night there and even better that Ted went along to lift and push the wheel chair. The roads were pretty clear by the time we went on Monday and had not yet iced when we left Tuesday, but we are glad we don’t have to trust so much in timing for three more weeks.

Plans in the absence of trips to Mayo until the 31st (barring surprises): visits to the ortho. surgeon, the infectious disease specialist and the endocrinologist/internist and podiatrist here in the cities. Visits from physical therapists and home nurses. Two plus hours hooked to an IV (D hangs) each evening. Exercise. Adding weight to replace that lost in the last month and a half and in preparation for the return to chemo. Recuperating and rebuilding.

And thanking God for another year and for each and all of you good friends who continue to journey, pray and help us.

D

The 3rd Day of Christmas, December 27, 2005 8:31 PM CST

Dear Friends,

It was a day of steps! We are both making progress.

Rick had a physical therapy assessment today and was given a plan of exercises to strengthen and stabilize his hip. In addition this therapist had some suggestions for increasing the stability of his knee and helping with the drop foot. The goal: to make him more mobile and confident on his crutches, reducing the risk of falls.

He is much better than a week ago, or even when he came home from the hospital. We are blaming the improvement on the pecan pie (two pieces) that were part of Christmas dinner. I had forgotten the strange way that Rick’s stomach overcomes queasiness. We took the ferry across Lake Michigan on our honeymoon. It was very rough and there was much cigarette smoke; my new husband was an unlovely shade of green. His solution: hit the snack bar each hour during the ten minutes it was open, stocking up on candy bars and hot dogs. Given that history it makes perfect sense to switch from a soft diet and chicken noodle soup to shrimp, ham and pecan pie! Even if it wasn’t the switch in food, it is good to have him feeling better and looking forward.

Each evening we “hang” a bag of antibiotic using a coat hanger and the curtain rod by his bed and connect the tubing to his Hickman catheter. This will be our routine for several weeks – all in the prayer of keeping infection away.

I resumed driving today! While I won’t be able to drive Rick until Ground Hog’s Day (at least unaccompanied since I can’t lift the wheel chair) I can do some errands and stop relying so much on the wonderful generosity of other peoples’ time. There are two ‘bad times’ each day – when I first get up and late afternoon. So I schedule necessary activity for the other parts of the day. It has been wonderful when people bring dinner – preparation time being one of my more difficult times.

We are planning nothing but slow and steady progress. Next Monday/Tuesday we journey to Mayo and make decisions about resuming chemo. Until then, we thank you for your prayers, assistance and friendship and wish you a wondrous 2006.

D

Thursday, December 22, 2005 4:43 PM CST

December 22, 2005

After the longest night (solstice) comes the dawn … after eleven nights Rick and I will again sleep under the same roof!

Ted and Corlin retrieved him from United Hospital about 2:00 this afternoon. There was some debate about spending time in a Transitional Care Unit, but it was decided that the exposure to germs was too great and that Home Health Care could provide needed support. Rehab was also considered, but Rick does not have the stamina for the mandatory three hours of PT which is the benchmark for qualification.

One adjustment, one glitch. Adjustment: because this is Rick’s left hip he cannot pivot into the front passenger seat. For a while he will ride in the back of the Santa Fe – scooting across the seat with his legs extended. Glitch: the wrong patient label was attached to the discharge prescriptions. We are currently waiting for the pharmacy to reach the doctor and call us to tell us that they are filled. How big this glitch is will depend upon how long it takes to resolve.

We have yet much to discover about the recuperation and future medical plans (i.e. chemo, PT, etc.). For tonight it is enough to be together – tomorrow we will attempt to get a few answers, although it will not be surprising to discover that some offices will be closed except for emergencies (which we are NOT planning).

In the interim, we are so grateful for the support and prayers. Friends, Karen, Karen, Kathy, Barb and Helen have been brought food – such a help for me to not be cooking right now! The wonderful trio of Fran, Jim and Karen came and cleaned. (It is difficult to clean if bending over is discouraged…) Please pray that the antibiotic and surgery was effective in clearing the infection from Rick’s hip.

Next planned update: Saturday or Sunday.

May you all have a blessed Christmas, a joyous Chanukah, and a meaningful Kwanzaa!

D

P.S. My recovery is progressing as expected. A couple of bad times each day, but not overall improving.

Saturday, December 17, 2005 5:02 PM CST

December 17, 2005

Dear Friends,

I was able to visit yesterday (thank you Hilary and Pippa for driving!). It was so good to be together and hold hands. Next goal – kissing. (I can’t bend over, he was too tired to sit up by the time we thought of it. I suspect we’ll figure it out.)

Progress on the physical fronts:

Rick: Yesterday he stood; and then he managed a couple steps. Today he proudly called to say he had walked all the way around the bed! Pain persists, but he is determined to become mobile. Helping this is the addition of a trapeze to his bed. For that I take credit, having made a mild fuss while I was there. He is complaining (justifiably) about the food and is setting rehab goals each day.

D: Today has been a better day. I’ve alternated between the computer and stretched out on the futon. Best news: I went to bed last night and slept for 10 hours!! (First time for at least a year!) What a joy! AND I am again able to read for a significant stretch. Actually finished an Arthur Upfield mystery in two days. (The one I was reading before surgery took me almost 2 weeks in fits and starts.) Another factorial joy to have my eyes back!! And the sun came out today for the first time in seven days. As a true heliotrope this is also a plus. (Reading about the Australian desert is an antidote to MN in December.)

Other progress will have to wait until Monday. I have a doctor’s appointment right across from United; so I will check out things on both fronts.

As Christmas and Chanukah approach (in tandem this year), may we be mindful of our many blessings. Your support is one of mine.

D

Thursday, December 15, 2005 9:49 PM CST

Dear Friends,

This will be short.

Pippa and I arrived here in the early afternoon - she having negotiated the snowy drive from Rochester.

I spoke with Rick briefly then and again this evening. He has had PT twice and they are trying to understand the modifications and limitations that his bad knee and lack of two quadricep muscles (they are atrophied) will place upon this new hip rehab. Mostly he has been sleeping with the muscle relaxant.

I've had a pretty rough afternoon and evening - fluctuating temps, abdominal cramps, nausea. All to be expected.

Hoping to visit Rick tomorrow afternoon and also get some answers to some of our questions about his condition. It is unbelievable that it was only last Sunday evening that he went away in the ambulance; even for the Stelters a lot has happened and changed in the last four days.

Blessings,

D

Blessings,

Wednesday, December 14, 2005 8:59 PM CST

D writes:

From Rochester: I have been sprung! With no visible incision, and wonderful mobility I have to keep reminding myself that I had neurosurgery yesterday. Then I make the mistake of bending over and my head reminds me! Still, I was teasing the surgeon that next they will be doing this as “drive-up” surgery – lean your head out the window and pull away. Seriously, I don’t belong in the hospital – there is nothing they would do that I cannot do and should do for myself! (Except pick things up off the floor and hospitalization seems a bit extreme for that restriction; or the revised restriction on lifting – max 10# for ten days and max 20# for the remainder of the six weeks.)

As far as we know the surgery was very successful – all of the tumor (visible) was removed and they were able to leave the rest of the pituitary. No damage was done to either the carotid artery or the optic nerve and there seems to be no leakage of spinal fluid. Now we begin the long process of weaning my body from its addiction to the drug cortisol that the tumor has been producing in such excessive quantities. One educator described it as similar to weaning off heroin: mood swings, shakes, aches, chills, etc. I have some meds to help a bit – they replace the natural steroid cortisol with increasing lower doses of artificial steroid – but some of it is just toughing it out. For some reason thinking of it as overcoming an addiction is a helpful and encouraging image for me. And of course there is no temptation to go try and make a street corner deal for some black market cortisol. Or at least, I don’t know of any such dealer. I also had some very helpful education today in managing the diabetes – especially as it changes over the next months since a large portion – maybe all – of it was Cushing’s driven.

I am looking forward to getting home tomorrow – to my own bed, to beginning new routines, and resting. Pippa has been magnificent as companion/caregiver/coordinator over the last days.

From United: I have been able to gather some news – but another reason I am anxious to return home is to be able to get accurate and complete information about Rick.

What I do know:
The surgery this morning took three hours rather than the anticipated one. They discovered more extensive infection in his artificial left hip than expected and so had to replace (revision) some parts rather than simply cleaning it out. This means …a longer incision, a longer hospitalization, a longer rehab and a longer recovery. According to Rick’s internist, Dr. Corbett, who, bless his heart, called me here at the motel, it also means several weeks of IV antibiotics (some at home – but we’ve done that before) and months, perhaps a lifetime, of oral antibiotic.

What I don’t know:
1)The name of the infectious disease specialist or what the staph bug was that was cultured. This makes a HUGE difference in what we can expect for treatment and the possibility of success. 2)How much rehab they are anticipating – whether Rick will be transferred to a rehab center or come home. Dr. Corbett thought he would be home for Christmas, but this will be primarily an orthopedic call. 3)The impact of all this on the treatment for the cancer. I spoke with Dr. Lust, oncologist, this morning but that was before the extent of the infection was known.
4)How we will combine the care that Rick needs with what I am physically able to deliver and what we will need to “farm out”.

I spoke with Rick briefly this evening – but he, under the quadruple influence of anesthesia, morphine, muscle relaxant and exhaustion, was less than lucid; loving, but not necessarily coherent. I am grateful that Corlin and Ted have been with him each step of the way and are able to give me first hand reports of what has been happening.

So – tomorrow will see Pippa and I journeying through the snow-covered countryside to Shoreview – and we will begin the next stages of this incredible pilgrimage. Thank you for your prayers, support and offers of help. As I begin to define what help we will need I will ask.

Bless you all,

D

Tuesday, December 13, 2005 10:52 PM CST

Pippa writes:

It’s hard to believe it is only 24 hours later, so many things have changed.

From Mayo:

The surgery went smoothly and successfully! D is being monitored overnight for pain, vital signs and cortisol levels. A consult is scheduled with the surgeon for approximately 8 a.m. tomorrow, and we are anticipating returning to the hotel together shortly thereafter. A follow-up visit is scheduled in the afternoon with the endocrinologist as well as a meeting with a diabetes specialist.

In the interests of daylight driving and energy levels, we will leave Rochester mid-morning Thursday at the earliest. However, the weather has intervened in the form of a winter storm warning. Snow is expected tonight, off and on tomorrow and Thursday and tapering on Friday. So at this time we are monitoring weather and I will decide by noon on Thursday whether I am comfortable driving home that day or not. I will update as necessary.

From United:

Things in St. Paul have not moved as smoothly. Rick has an infection in his hip joint and surgery had been scheduled to “clean” the artificial joint several times today, and has finally been postponed to first thing tomorrow morning. Corlin and Ted continue to monitor developments in the Cities. Rick may also return home as early as Thursday, but there is considerably less certainty about that until the surgery is finished. Updates as they become available.

Monday, December 12, 2005 9:12 PM CST

Pippa writes:

Hello from the middle of the whirlwind –

D and Pippa spent the day trekking around Mayo from one test to the next, bloodwork, EKG, X-ray etc, including a consult with the neurosurgeon, Dr. Atkinson, and the endocrinologist, Dr. McIver. The surgery has been scheduled! We plan on arriving at St. Mary’s Hospital at 5:45 a.m. tomorrow morning, surgery at 7. The best possible scenario at this point includes an overnight stay at St. Mary’s and a follow-up with the endocrinologist on Wed; estimated return to the Twin Cities: Thursday midday-ish. D is amazed that the surgeon will “poke around in my brain, stick a band-aid on it, and release me the next day.” The tumor is however right against the carotid artery with all of the risks that implies. Anticipated recovery hurdles include: no sneezing or blowing nose for 2 weeks, no lifting over 20 pounds for six weeks, and generally miserable for three months, much like a prolonged bad case of the flu.

Meanwhile back in the Twin Cities:
Rick was transported via ambulance to United Hospital late last evening, after suddenly spiking a temp of 103 with continued intense pain in his hip. Late this afternoon they aspirated the hip thinking it may possibly be an abscess in the artificial joint. He is on I.V. antibiotics and morphine to control the pain and an MRI has been scheduled. His lungs however are clear and his white blood count is not out of normal range. Corlin and Ted are continuing to monitor things in the cities, but there is no definite diagnosis or prognosis at this point.

That’s all we know from the whirlwind at the moment, Pippa will continue to post updates as new information becomes available.

Third Sunday in Advent, December 11, 2005 3:51 PM CST

I tried to post last night and could not get onto the site. Since then things have changed – so maybe that was a good failure.

Rick: seems to be tolerating this round of chemo better than the last. He is currently at the minimum therapeutic dose. The doctor told us on Tuesday that this was a critical cycle. There will be some side effects from this drug, including muscle pain, weakness and fatigue. Rick has to determine if these are tolerable and “worth it”. These side effects are not to be confused with the toxic response to the higher dose. If it is not worth it, then the Velcade will have to be discontinued. What Dr. Lust did not tell us was what the other options are – but before beginning the Velcade we knew that the options were limited. Rick is also suffering from a cold which has settled in his chest. The muscle pain, which is being managed by Tylenol #3 and hot showers, is definitely chemo-related. Or – maybe not. Heavy coughing can also cause abdominal pain. The fatigue? We wait and see.

But he woke this morning with significant hip pain on standing. We think (hope) it is muscular spasm, evolving from Friday’s chemo trip in a different vehicle combined with immobility as he slept away yesterday. We have decided at this point to “ride it out” until tomorrow when he can consult with several doctors on the phone – rather than sitting for several hours in the United emergency room. It is our assessment that no one here will do anything on Sunday afternoon and he is “comfortable” at home.

D: We still don’t have a definite date for my surgery. The consultation with the Mayo endocrinologist last Thursday confirmed the need and increased the urgency. The symptoms are daily more severe and functioning is becoming more difficult for me. But one of the symptoms is high blood pressure and at least last Thursday my blood pressure was too high for surgery. So – a whole series of tests and perhaps some treatment before surgery.

The next consultation is scheduled tomorrow afternoon following which we hope to have a date. Both before and after that I am scheduled for tests, examinations, samples; I will be poked, prodded and interviewed. Surgery could be scheduled as early as the following day or as late as the week after Christmas.

The current plan: Corlin has moved here for the next few days. Pippa and I will leave tomorrow (early) and stay in Rochester at the Country Inn and Suites (507-285-3335). At least through Monday night. Corlin, Ted and Rick will decide what to do with Rick's hip pain tomorrow. Rick may come to Rochester on Tuesday for chemo. That is still “fluid", depending upon tomorrow's discoveries and decisions. Pippa and I will take care of me as necessary in Rochester. We will all keep in touch by phone and e-mail. Pippa is going to take care of posting to CB this week.

Ted and I are “trading” cars for the week – so the Santa Fe stays where Rick is. Since the Subaru was originally my car it shouldn’t be too difficult a transition and it is a lot closer in size to Pippa and Hilary’s Saturn than the SUV. BUT – Ted has added a fancy music player and I just spent 5 minutes learning how to connect and disconnect the upgraded technology. Anybody else remember when an AM radio was an "extra"?

This looks like a very challenging and pivotal week – or even 24 hours. Please keep us in your prayers.

D and Rick

Wednesday, November 16, 2005 4:54 PM CST

Yesterday, Tuesday, November 15, at Mayo (blood work, X-rays, etc.) we received good news and bad news – about equally divided. With maybe a slant toward the good news – we think.

1. Rick’s persistent symptoms – weakness, shortness of breath, muscle pain in his torso and thighs, tenderness to touch – can all be attributed to the same Velcade (his chemo drug) toxicity that first touched off the fevers and mouth sores. In other words, this stuff is poison!
2. But it is also poison to the cancer, as evidenced by a visible reduction in tumors, a drop in the IGG and M-spike scores.
3. Rick’s hemoglobin is great (for him), white blood count normal, and the all- important platelet count is back up over 100,000!
4. Rick is better than he was a week ago when we spent the day at St. Mary’s ER. The expectation is all the symptoms listed in #1 will subside over the next week or so. We will consult with Dr. Lust again on Friday of this week.
5. Assuming #4, the strategy at this point is to prolong the respite … no more Velcade, until the 28th or 29th of November and then restart the cycle at a lower dose. The trick will be to calculate a dose effective against the cancer without all the toxic side effects.

All of these decisions flow or flowed to the following mostly good things:

6. We were able to leave Rochester shortly after 3 p.m. rather than the expected time of 5p.m. after the planned chemo treatment.
7. Therefore we left Rochester before the snow arrived there and arrived in Shoreview just as the snow was arriving here.
8. Rick can have his picture taken for the church directory tonight – without having the day-following-chemo “martyred for the faith” look.
9. Without two chemo visits next week there are only 5 medical appointments scheduled (between the two of us) – which make Thanksgiving and Corlin’s birthday even better to anticipate.
10. A couple other commitments and decisions which were going to be sandwiched around chemo can now be completed with clearer heads and calendars.

News without evaluation:

11. I was so exhausted by the time we got home last evening that I slept for almost 12 hours … haven’t managed more than 6 for over a year.
12. Dr. Lust thinks that my surgery could be scheduled the day following the consultation with the endocrinologist on the 8th of Dec. The surgeon may be able to move that fast, but I don’t think we can. We will need a pretty definite date to set up other arrangements and coverage. But things are looking better for sometime the week of Dec. 12th rather than the week preceding Christmas.

There we are! Please pray for Rick’s symptoms of toxicity to continue to subside, for courage and patience for us all, and that an effective dosage of Velcade can be found.

D

Wednesday, November 9, 2005 1:58 PM CST

Hi Friends,

Rick wrote the following entry and before I could post it things changed again. Because there is so much important information in his update, rather than rewriting it I will “post” a follow up with his writing following:

Rather than bouncing back from last week’s chemo. Rick has remained weak and dizzy. Walking ten feet has left him breathless. Yesterday morning we retrieved him from the neighbors and I decided it was time to get this looked into. So we started south to Rochester with the doctor calling us on the way to affirm my decision.

The good news: 5 hours in the St. Mary’s ER (two ETM vehicles arrived just before we did in tandem – I suspect an auto accident and so there was an unusual delay) showed nothing – no infection, no bleed, no pneumonia. The platelet count was only 35,000 – but that doesn’t account for the symptoms. Which is the ‘bad news’. So we returned home at 8:00 last night and will see if Rick regains some strength before Friday when we will again consult with the doctor. Is a puzzlement.

My theory – when did I not ever have one? – is that it is partially caused by Rick’s lack of adequate food for almost a week due to the mouth sores … they are resolving and I am pushing calories. In addition, he cut way back on his activity because he felt so cruddy. Since there wasn’t much margin – here we are. Or at least all of that is my wishful thinking…

While we were gone yesterday Pippa, Hilary, Ted and Corlin made marathon efforts scraping up the old tile. (Hair dryer and putty knife piece by piece.) The installers are here today and will be here most of tomorrow – removing the rotting subfloor, putting down new subfloor, etc. Rick is pretty much confined to his room - all the chaos is a bit upsetting to him (and to the dog) and it is hard to navigate with the kitchen in the living room, the dining area in the basement and the living room, half of the living room in my room, etc., etc. But so far today walking as far as the end of the hall to inspect the progress has been “enough”. And so the painting (which was aesthetic) is postponed and the floor (which was safety) is progressing.

November 7, 2005

Here we are, rolling along into November! After another tiring week of chemo at Mayo, I find myself at a neighbor’s house, composing this update. The floors, the third of our noble projects this fall, have necessitated my evacuating from the house for four days, while the prep work and installation of our kitchen and bathroom floors takes place. That means, ripping up floors, moving the refrigerator into the living room, and pulling the upstairs toilet temporarily! No place for me to be safely, so generously our neighbors welcomed me here.

The plan is to rip up tiles today and tomorrow; pull the toilet, place a sub-floor and install the linoleum on Wednesday; and reassemble the whole works on Thursday, so I can return on Friday. Friends are bringing food for each day while the house is a mess…. All humans are accounted for, but what of the poor dog?

The whole thing is a heroic effort by many people: D to organize all the workers, Ted and Corlin to pull tiles and walk the dog, the plumber to pull and reinstall the toilet, our neighbors to house me, our friends to feed us dinner each night, the workers to get in and out in two days, the home health worker to change my dressings on Friday…. And so forth. Uff Dah!

This is all complicated by D’s new diagnosis of Cushing’s Disease, probably caused by a tumor of the pituitary gland , which often masks as diabetes, high blood pressure and weight gain and hair loss – symptoms of the stress she has been under for years. After elaborate tests, her endocrinologist made the diagnosis with some relief in naming it and in saying it was treatable. The good news is we caught it early. But oh, the treatment!

D is to have an MRI of the gland to locate the abnormal spot; then visits with the surgeon at Mayo (we did not want to entertain the insurance/business office/collection agency sequence with Allina Healthcare, as well as trusting the Mayo surgeons more with this delicate surgery); and consults with our eye doctor, since the pituitary gland sits right next to the optic nerves at the base of the brain. Best estimates of scheduling are for late November and early December visits with surgery in mid December or later.

Getting referrals, appointments and testing done has been complicated at the outset, so back to the floors, while arrangements are worked out daily. Pray for peace and understanding as this important process unfolds, so D can recover and resume her activities. At present her cortisol level, which is normally 100, is at 5000! The plusses of the surgery are: her diabetic condition should be much improved, blood pressure lowered, weight manageable at a lower scale, increased energy and renewed hair growth. After recovery (a month?) All that will be required will be adjusting the levels of hormone replacement therapy to substitute for the erratic pituitary gland. We pray for a complete recovery and a good outcome from the surgery!

The home routine will be disrupted again! (What’s new?). But many friends are already volunteering to fill the gaps while D recovers and beyond. We are so thankful for your prayers and kindnesses in our or continuing journey of one adventure after another.

By the end of November we hope to have new and safe floors upon which to celebrate our Thanksgiving and Corlin’s 24th birthday. And we will have begun the process for D’s surgery to turn her life around in the New Year.

Best wishes to all, as the sun sinks earlier in the western sky each day. Just think, after December 21, the sun shall rise again, for which we are very grateful, indeed.

Blessings to you all,

Rick and D

Thursday, November 3, 2005 8:32 AM CST

All the Jinga blocks came tumbling down…

Within minutes after posting the last journal entry Rick told me he had developed a fever and shakes. Acetominophen kept the fever within “acceptable” range but he is clearly not going to skate through this chemo as we had hoped. He was exhausted, weak and feverish through last night. The mouth sores are also significant – getting enough calories will be a challenge should they persist. During a previous session with the things he lived on Boost, homemade eggnog and cottage cheese/yogurt.

So – he is not going to Illinois next week and we are developing alternate plans to complete the safety-driven floor install.

Our prayer/hope is that after he completes (and recovers) from Friday’s chemo dose (75%) that the recovery week will put him back on his feet and that the next complete cycle of 75% will not prove so devastating and debilitating.

Will let you know what the next construction of the tower looks like…

D

All Saints Day, November 1, 2005 10:52 PM CST

Things have changed as they inevitably do…

Rick had a pretty severe reaction to Friday’s dose of chemo – temperature of 103, mouth sores, digestive upset. Hence the dose of Velcade has been reduced to the previous 75% of the “full” dose. Although he is very sleepy this evening we seem to be bypassing the fever by diligently dosing with acetominphen. Kraft macaroni and cheese, applesauce and cottage cheese all slither past the mouth sores. (We tried to tell him that canned peaches are even slitherier – but Rick feels strongly about peaches. Not positively. As he reminded us.)

His platelets also took a severe hit from last week’s two full strength doses of Velcade. The measurement taken before today’s injection showed a drop in platelet count of over 50%. This means he is at a greater risk of infection and that ibuprofen is no longer an available weapon in combating any fever. (It was alternating 800 mg. ibuprofen with 1000 mg. Tylenlol every 2-3 hours which finally broke the fever last Fri. and Sat.)

Still, it was a good trip today. Our friend Joe rode along and he and Rick talked all the way. He even went with Rick to chemo while D went to the Laundromat to use the commercial washer/dryer and then took her constitutional at Soldiers’ Field.(park) On the way home, We took careful note of which fields (farm) had been harvested and which were still standing.

Pray that the reduced dose alleviates the side effects and that Rick can spend next week (respite week) with John and Shary (brother and sister-in-law) in Illinois while repair, replacement and painting occur at 1039. We will be replacing the kitchen floor – a trip hazard – as well painting everything D can get her brush on.

God bless – update next on the weekend.

Wednesday, October 26, 2005 9:35 AM CDT

Cautiously optimistic: that is the result of yesterday’s 12 ½ hour marathon at Mayo.

The entire blood scan was within normal “for Rick” range – even the platelets recovered in the respite week to what they had been before the Velcade. The all important measures of proteins (IGG and M-spike) are stabilized, the smaller tumors on Rick’s legs are flattening (good) and even one of the larger ones is reduced. (The proteins are produced and released by the tumors and so measuring the blood level of those particular proteins give us one good indication of tumor activity. Hence, over the past 3 weeks there is apparently no increase in tumor activity. Before the Velcade the tumors were growing apace.)

The next step is to move to a full dose of Velcade (last cycle was at 75%) for this cycle of four treatments. Should Rick not tolerate that well it can be reduced back to 75%. Anticipated and manageable side effects (besides platelets – keep praying) are the nausea which he is managing very well with compazine, ginger ale and ginger altoids, a mild fever (Tylenol) and just plain dragged out (sleep). All of these extras didn’t last too long last cycle– the nausea seems to be past by the time we drive home, the fever maybe 24 hours and the tiredness about the same time. So at this point it is treatment day, one down day, one recovery day, and then another treatment day – with the respite week to really recover.

The hope is that increasing the Velcade and continuing the cycle will depress, even stop, the tumor growth. The challenge is that Rick has had so many rounds of chemo and the stem cell transplant. We are asking the Velcade to work on a toughened and probably resistant disease process. Still we are cautiously optimistic that it will continue to prove successful.

The first Tuesday of the cycle requires extensive blood work and a meeting with the doctor after the work has been processed by the lab and before the beginning of the chemo. Hence, we leave around 6:00 a.m. arriving at sunrise and in time for Rick to “give” 6 tubes, and then ‘spend’ time until seeing the doctor at 1:30. Yesterday we spent that time at a park – D walking, Rick sleeping and then crutching cross country to check out the geese floating on the Zumbro River and to eat his picnic lunch and do some writing while perching on the end of a picnic table. Following chemo we made it home by 6:45. Exhausted.

Highway 52 continues fascinating – we have seen two (related) funnies to pass on. Sign on the side of a truck transporting porta-potties “2,600 # of really gross weight”. Bumper sticker: “Happy as a carp in a septic tank.” (I don’t know if that is actually an happy or unhappy carp…)

Next planned update: Next Tuesday with the platelet count. Blessings to you all and thanks for the prayers,

D

Saturday, October 15, 2005 9:55 AM CDT

Hello from Rick and D,

Tuesday it was turkeys. Driving along 52 there were half a dozen wild turkeys gobbling (pun intended) their way through the corn stubble! What a sight!. Friday it was Japanese beetles: we finally (after 8 years) discovered the park in Oronoco which overlooks Lake Shady. It is a lovely place for our picnic lunch. We ate in the car because it is not very accessible for Rick and because the beetles were everywhere! In spite of precautions we transported many to the urban center of Shoreview and spent last evening removing them to the outdoors.

We have completed one cycle (4 treatments of chemo). We have refined our routine and it improves each time. Now a week of recovery and we begin again.

The good news: because some of Rick’s tumors are on the surface we can monitor the effects of the therapy without being totally dependent upon blood work: outlining them with Sharpie Markers (yes, D colors on her husband!) and comparing it appears the Velcade is doing some good! Or doing the CA some bad. The other good news – at this point no effect on Rick’s stomach or appetite.

So, so news – all better than the alternatives. As the two weeks progressed he became more tired and dropped off for short naps easily. This may be a combination of the Velcade and the high dose antibiotic he is also taking. News to be evaluated: Rick’s platelets are decreased. The doctor is not overly concerned at this point, but we are taking more precautions about infection. If you come to visit we will ask you to remove your shoes and immediately wash or sanitize your hands.

God bless you – we are grateful for your prayers (keep praying for the platelets) and help and look forward to hearing, talking, writing …

God bless you,

D

Saturday, October 8, 2005 11:06 AM CDT

Hello from Rick and D

Lasagna. Lasagna and clam chowder. Those are the two post chemo meals Rick has chosen. So at this point we are pretty much ruling out queezy stomach as one of the side effects.

He had the full dose yesterday, and so far, the only noticeable side effect seems to be bouts of sleepiness - on the way home, through the evening and, if Tues.Wed. was an example, at least through this evening. We will take it.

Our round trip yesterday took 6.5 hours - because while the chemo is really short (no long drips), there is still the inevitable waiting room/pharmacy etc. delay. And we had to cross the Twin Cities at rush hour. An earlier time for next weeks trip MAY shorten it a bit - although we will now be near the end of the morning appointments rather than at the beginning of the afternoon ones ... What a beautiful and glorious day for a drive, however. The clouds were absolutely fantastic!

As always, we will roll with what appears.

We are still looking for back-up drivers for Tues. (able to commit at the last moment to six hours and comfortable driving the Santa Fe (or your equivalent). Hope not to need anyone, but it would be nice to have a name or two...

And - suggestions/loans for 'high energy' CDs to play on the way home. Yesterday we/I listened to Singleton Street (blue grass) and The Manhattan Transfer's Swing on the way home. But we only have about half a dozen of this type and I suspect they will get pretty 'old' by Dec. Anyway, at this point Rick seems to prefer classical (of which we have an abundance) to prepare for chemo and bass/banjo or bass/sax/clarinet and vocals following (must help the Velcade percolate to the tumors...)

God's blessing on you all,

Rick & D

Wednesday, October 5, 2005 10:11 PM CDT

Our day yesterday went amazingly smoothly arriving in Rochester just in time for Rick’s labs. Or at any rate, the time the labs were scheduled .(long delay in waiting for persons qualified to draw from his Hickman. First time that has happened.). The chemo itself is pretty quick. It’s an injection simply given in one of the ports of a running IV.

We spent about half an hour talking with the nursing supervisor of the unit about the treatment concerns arising from the blood draw at the last visit and about how to most easily (for us) make the Mayo system for Hickman caps and the home healthcare system for Hickman caps compatible. (Think piping that ends in metric units that also needs to end in whatever the inch system is called.) This Hickman is pretty much the last resort as far as getting ‘things’ into Rick. His veins etc. are too scarred for PICS and even this Hickman took two surgeries to implant. Not only would an infection be a problem in itself; it would create multiple problems for future treatment. So we are very, very protective. They hung the saline and I went down ten floors to send a fax. By the time I had done that, waited 5 minutes for the confirmation and walked back – Rick was ready to roll.

I filled the tank (gas was almost 10 cents cheaper in Rochester) and off we went. Before we left he was reaching for the compazine and I thought – “uh oh, this could be a long drive home.” But, Rick, wise in the ways of chemo was just getting on top of the nausea at its first squiggle. I had one of our funky blue grass banjo CDS and the energy kept him tapping and moving for about 45 miles when he suddenly dropped off to sleep awakening 30 miles later. Total time for trip 9 hours. We arrived home just in time to miss the heavy thunderstorms which began coming through the Twin Cities.

By the time we got home Rick wanted supper. His choice: clam chowder, crackers, Velveeta cheese. Scarfed it all down - followed by a helping of Sprite and peanuts.  Not exactly what I would call a queezy stomach. Dozed intermittently through the evening – but was awake and yelling at the ball players regularly. Went to bed earlier than he usually does and was sleeping each time (2) I checked on him during the night. Since he has been frustrated with his inability to sleep – this may be a good side effect of the treatment.

Now we know that chemo has a cumulative effect and for many reasons they started Rick at 75% of the indicated dose of Velcade. He may feel more, or more intense, side effects as the treatment continues. Should that be the case, however, we are starting the climb from a pretty benign level which is a blessing.

The “big concern” is that this drug sometimes suppresses platelet production. Should that be the case we will need to return to super infection precautions. These would be similar, although not quite as restrictive as following the stem cell transplant. As always, we need folk to be sensitive to Rick’s increased susceptibility to infection and warn and avoid us if they have a cold, flu, pneumonia, measles, cholera, typhoid – or pretty much any infectious disease.

So – given all the above, our schedule will be Tues. and Fri. – two hours to drive, probably 1 to 1½ hours at Mayo and two hours home. .We do that for two weeks, take a week “off” and continue as long as the drug is working.

We ride on prayer these days, and know that many of you are providing extra cushioning. If you would like specific prayer suggestions: that the Velcade may be effective, that Rick’s platelet production continues strong, that the Hickman catheter remain viable, and that we be granted the grace for this new stage of our journey.

May God bless you all,

D

Saturday, September 24, 2005 3:56 PM CDT

Rick writes...

Well, just when things seemed to be returning to normal around here, up jumps a signpost that says, “Whoa! You’re going too fast. Don’t get your hopes up just yet!”

Our visit to Mayo Clinic on September 20 was filled with strange quirks (flat tire on the wheelchair after we had the tires filled, plugged toilets, mixed up sandwiches at McDonalds to name a few). So, when we came to see Dr Lust for our test results it stood to reason that they would be unfavorable, too. The primary marker for my myeloma activity, the M-spike, has increased steadily from .5 in July to 1.1 in August to 1.3 in September. Two large, plum-sized tumors have emerged on my left upper leg. These two obvious factors led Dr Lust to conclude that it was time to try a new treatment plan. The research drug trial is over; the new regime is coming in October.

It hit us like a ton of bricks. For years we had been accustomed to the notion that, at the next visit, things could turn to the worse. We had seen bad times; we had summoned great physical and emotional energy to deal with them. And we survived. But for the past four to five months, things had settled into a nice routine – no emergencies, no crises, no big changes. By the September 8 Caringbridge update we had dared to use the word ‘normal’ and ‘stable’ to describe our life and my condition…. That’s why the news on the 20th, less than two weeks later, came as such a shock. September 20 is the change of season from summer to fall; for us it is the change of season from relaxed treatment to a more intensive chemotherapy…. After an exhausting day, we turned to each other and gave each other a warm hug and fell into bed for much needed rest, hoping for a better day tomorrow….

The plan is to start new IV chemotherapy at Mayo with a new drug called Velcade. It was a trial drug with such remarkable results that it was rushed to market for patients just last year. It has been very successful in slowing the progress of the disease for many others. We hope so for us.

We will begin on or near October 4 and be on a schedule of Tuesdays and Fridays for two weeks, then off for a week, and so on until an unspecified time. It will require many more visits to Mayo, and with the high cost of gasoline, much expense. We need a few back-up drivers who either have a minivan, SUV or are willing to drive our Santa Fe. At this point we are thinking this would be about a 7 hour commitment. What other support we will need we have yet to discover.

In preparation we always look for signs of infection, since my vulnerability to infection quadruples in chemotherapy. This time we found it in my feet. My podiatrist had cut my toenail too short on my big toe on my left foot. It became infected. We sought a second opinion. Yesterday we had the toenail trimmed to reduce the possibility of future infections. Now I have a big bandage on it and keep my feet elevated for 3-4 weeks and treat it with antibiotic cream and foot soaks twice a day. On we go.

What else can we say? There was a terrific thunderstorm that tore through the North Metro, upending trees and ripping down branches all over. We lost power, phone internet – and eventually, even the cell phone, for 21 hrs from Wednesday night to Thursday. Thankfully our damage was minor compared to our neighbors…).

So big changes in our lives are coming in October . We are anticipating, guessing and trying to prepare. But as always, we shall be surprised.

Hope all is well with all of you where you are. Best wishes. We pray for your good health and happiness in a world full of storms these days.

God bless,

Rick

Friday, September 9, 2005 7:03 AM CDT

Rick writes

Wow! It’s been 78 days since our last entry. Must be getting lazy…. Or normal, if we dare use that word.

At any rate, visits to Mayo on July 1 and August 12 have come and gone without much comment: the research drug has been keeping the myeloma activity in check apparently. IgG scores have increased slightly to 2100, but the m-spike scores have remained low, so the doctor is willing to adopt a ‘wait and watch’ attitude. Tumors come and go on my left leg routinely and rather predictably, if mysteriously. It seems each gets a running start and then self-destructs or implodes after a point. Must be fascinating to an oncology researcher. Our time in the trial is now extended to over 220 days with no sign of quitting… What a break for us. Thank God for fresh air!

Not that our days have been without incident or activity around here.

We are enjoying the results of D’s gardening efforts. Fresh veggies every night for dinner: chard, tomatoes, beets, beans, carrots, squash etc… The second or fall planting of radishes, lettuce, root crops et al. is now in also. Yumm.

Work around the yard continues also, with pavers, painted railings, green house and other projects being completed and a stump removed, if I am remembering correctly. Now the canning jars are in full evidence as the produce from garden and market gets ‘put up and put by.’ Every once in a while a fresh-cut rose, gladiolus or other flower makes its way into the kitchen table as well. ‘Tis a productive and satisfying, if busy, time of year and we are very grateful for it.

Caregivers deserve a break, though. Even when the doctor appointments slow down and the gardening and house chores take center stage (make hay while the sun shines before first frost!) the caregiver task remains constant. There needs to be a break, a respite, a release from the continual task of caregiving….

And so we were blessed mightily when brother John and Shary welcomed me into their home for ten days as a change of pace (some would say a conditioning regimen) for me and a break for D and Ted. It literally was a relief that I wasn’t here to be worried about.
That takes a lot of caring energy and it needed to be refilled.

I had a marvelous time in northern Illinois: visited Chicago (lakeshore, Lincoln Park, Wrigley Field, Michigan Avenue and Hyde Park/U of C), the family home and cemetery in Freeport, the childhood home of Ronald Reagan in Dixon, the beautiful Rock River and a few bison thrown in. John and Shary were splendid hosts and solicitous caregivers. I did well. Promises to return for more ‘respites.’

D and Ted had a chance to recoup their energies and perspectives on their lives without always thinking of me. A very good thing.

So on we go…. Ted is planning for a golfing vacation this month. More work in the garden and around the house to complete projects before November. D and I hope to take a trip to visit her family in AZ. That is now not so far-fetched to think about. ‘Stable’ and ‘more independent’ and ‘revitalized’ are words heard more often around here. So there’s time to relax and to dream and to play and to plan a bit.

And God said, “Behold, it is very good!”

We wish you well in all your endeavors and your cares. And thank you for your diligence in praying for and caring for us. We hope to ‘be on the back burner’ for a while, for there are many others who need much attention in this time. Thanks for being there for us… God bless you.

Rick