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Monday, November 3, 2003 3:06 PM EST
Final draft
Thank you all for coming and sharing in the celebration of Wendy’s life.
She was an extraordinary person and I am the man who was blessed to be the one she chose to share her life with. I don’t have time or the composure to touch on every aspect of her extraordinary life. St. Paul says, the greatest of these is love, so that is the part I’m going to talk about this morning.
That our love was remarkable brooks no argument, the two outstanding young men who did the scripture readings are the ultimate product of our love. I rest my case.
As her father reminded us last night she had a unique turn of phrase, “love you much.” And that was how she loved, much. There is a Beatles song that has a line in it that goes “And in the end, the love you take is equal to the love you make”. Whether she was your friend, fellow horse nut, colleague, health care provider, daughter, sister, aunt, niece, mother, or wife, she loved you much. And I can tell you with confidence from the emails and conversations I’ve been getting and having, she was loved back, much. Take a look around, pretty good crowd for 10:30 Monday morning, huh?
She fought the good fight, the last 6 weeks were one challenge after another, but not even Wendy could handle all of them together. Her leaving is a great loss for all of us. Myself, I can’t understand how this thing in my chest keeps thumping when my Heart and Soul went home to God last Wednesday.
She doesn’t hurt anymore, but I’m confident she still loves much. Especially because I know I still love her, much.
Thank you again for all of your prayers, support and love.
As given, more or less:
Thank you all for coming and sharing in the celebration of Wendy’s life.
She was an extraordinary person. I don’t have time or the composure to touch on every aspect of her extraordinary life. St. Paul says, the greatest of these is love, so that is the part I’m going to talk about this morning.
As her father reminded us last night she had a unique turn of phrase, “love you much.” And that was how she loved, much. There is a Beatles song that has a line in it that goes “And in the end, the love you take is equal to the love you make”. I am the man who was blessed to be the one she chose to share her life with. When we were going through the photo albums I found a rose that had a note saying “From the first bunch of roses Arthur ever gave me on Nov. 4, 1984 when we made the verbal commitment to get married.”
As Joe said, she was very serious about her sacraments. We researched marriage and found in the catechism or the Bible that marriage was a commitment to each other witnessed by God and the community. God knows God knew and our community knew, so 20 years ago tomorrow, we were married. And even when she was sick our love continued to bear fruit. I heard one person who said our example confirmed to her that her decision to be confirmed as an adult was right and friends of ours who have been having marital difficulties are trying to reconcile partly because of what we have shared.
[ That our love was remarkable brooks no argument, the two outstanding young men who did the scripture readings are the ultimate product of our love. I rest my case.]
You didn’t have to be her husband to be loved. Whether she was your friend, fellow horse nut, colleague, health care provider, daughter, sister, aunt, niece, mother, or wife, she loved you much. And she was loved back, much. Take a look around, pretty good crowd for 10:30 Monday morning, huh?
She fought the good fight, the last 6 weeks were one challenge after another, but not even Wendy could handle all of them together. Her leaving is a great loss for all of us. Personally, I can’t understand how this thing in my chest keeps thumping when my Heart and Soul went home to God last Wednesday.
She doesn’t hurt anymore, but I’m confident she still loves much. Especially because I know I still love her, much.
Thank you again for all of your prayers, support and love.
Saturday, November 1, 2003 9:45 AM CST
Directions to this weekend's festivities:
To the funeral home:
From the west: Take exit 45 off the thruway. Turn
left on Rt. 96. Go most of the way through Victor and
turn right at the light with McGhans and a very new
bank next to each other on the corner on your right.
The funeral home is about two houses down from the
bank, just before the fire station.
From the east, take exit 44 off the thyruway. Turn
right at the intersection with rt. 96. When you enter
Victor, turn left at the first light. The funeral
home is about 3 houses down on your right, just before
the fire station.
To the cuhurch:
From the east or west, take the thruway to exit 45.
Get on 490 headed for Rochester. Get off at the
Busnell's Basin exit. Turn right on Rt. 96. you will
soon pass a shopping plaza on your left and a plaza of
sorts on the canal on your right. There is a hill you
start up at this plaza. At the top of the hill, turn
left. Go straight as far as you can. The road comes
to a T at a reservoir. Turn right. The church is on
your right just over the hill, right across from the
school, just before the fire station.
From the south, get to Walnut Hill and keep heading
towards Pittsford. The chuch is just over the hill
past the reservoir.
For non driving horse people from the south, take
rt.64 north. You'll come to a hill with Pitssford
High School on your right and a fire station on your
left. Turn left at the top of the hill, the church is
'behind' the fire station on your left.
Check www.transfigpittsford.org, I think they have a
map posted.
Art
Thursday, October 30, 2003 7:23 PM EST
Hi,
Calling hours are Saturday and Sunday 2-4 and 7-9 at
the Jarmusz-Cotton funeral home on Maple Street in
Victor.
The Funeral Mass is Monday at 10:30 at the Church of
the Transfiguration 50 W. Bloomfield Road Pittsford.
I'll send directions later.
Art
Wednesday, October 29, 2003 8:25 PM EST
Hello all,
The Light of my Life went out at about 5:40 this evening. I will post calling hours and such here as arrangements are made.
Thank you all for your prayers and support.
Art
Wednesday, October 29, 2003 1:37 PMCCST
Hello all,
Wendy is bleeding severely in her stomach. There is no reasonable expectation that it can be resolved. I am having them pull the breathing tube this afternoon.
THank to all for your prayers and support.
Art Hello all,
Wendy is bleeding severely in her stomach. There is no reasonable expectation that it can be resolved. I am having them pull the breathing tube this afternoon.
THank to all for your prayers and support.
Art v
Tuesday, October 28, 2003 10:57 PM EST
Hello all,
They told me this afternoon that if I did not consent to putting Wendy on a respirator she would die. Wendy does not want extraordinary measures taken to prolong her life. After confirming that she could be taken off the respirator at any time, I told them to go ahead. I have been told that the doctor on the floor was very good and would not drag things out if there was no chance.
I am confident Wendy hates having been put on a respirator at all. But before I let her go, I will make sure to my satisfaction that every reasonable effort has been made, that there is no realistic chance of recovery. Seeing her on the respirator, if she does not show some improvement within the next very few days, I will know it is time. Then we shut off the respirator, and what happens happens. A very wise friend told me she will be in God's loving hands. If He wants her to come back to us, she will. If not, we will lose a very special person,but she will be in a better place and will not hurt any more.
This time I ask for your prayers for me. Ask God to help me see the right way to go and make the right decision. And for our sons, help them deal if they lose their mother and help me be there for them.
Thank you all for your prayers and support.
Art
Tuesday, October 28, 2003 1:53 AM CST
I was working on a nice little post about Wendys diagnostic tests and the crooked little smile I got out of her when she went and crashed on me.
Her breathing got eeven more difficult than it had been. I got a nurse and all Hell broke loose. Her blood pressure dropped and her breathing got bad enough that they told me it was the respirator or she would die.
She is on the respiratoe , but only until she recovers or I get the credible medical opinion that she won't recover.
What a call to make.
Art
Monday, October 27, 2003 5:37 PM EST
Hello all,
We have an official diagnosis: Wendy had a stroke at
some point over the past 3 days. The transplant doc
on the floor is pretty optimistic this will resolve.
The neurolgists are doing some more tests. I guess
they don't think this is a clot or a bleed. They
think, pending further test results, this is an
inflamation. One test they did today is a spinal tap.
They will be culturing the fluid to see if there is
an infection.
Lots of people are asking again what they can do. I
wish I knew. Aside from keep praying, I have no clue.
I'm open to any suggestions.
Art
Monday, October 27, 2003 10:49 AM CST
Hello all,
I thought Saturday we were on a long, slow up grade. I guess I forgot rollercoasters are full of surprises.
They ust took Wendy down for an MRI. She has neve looked this bad yet. She isn't breathing well, she
can barely talk, and you can see in her eyes she is VERY scared. So am I.
Keep on praying. While you're at it, please say afew for me so I can put on a brae face for her.
Thank you,
Art
Monday, October 27, 2003 5:22 AM EST
Hello all,
I apologize for laying this on you on a Monday
morning.
There was a development Sunday. Wendy lost the use of
her right arm and can just barely speak any more.
They did a CT scan of her head last night and found a
spot on her left frontal lobe. I am told the most
likely explanations are either a stroke or an
infection. They will do an MRI this morning and
figure it out.
I'll keep you posted as best I can. They aren't
supposed to know much more until this afternoon. I'll
post as soon as I can.
Thank you for your support and prayers.
Art
Saturday, October 25, 2003 11:08 AM EDT
Hello all, 10/25/03 11:00
Wendy is doing pretty well today. She slept pretty well last night, her output from the ng tube is
going down, she has been up to go to the bathroom several times this morning, They are putting her
ng tube on a gravity feed as opposed to the suction she has been on, and her bowel sounds are
picking up.
So what we are looking at is a healing large intestine and a more active Light of my Life. The focus
of my prayers at this point is for her to keep moving in a positive direction.
Many thanks for all your prayers and support.
Art
Friday, October 24, 2003 5:56 AM EDT
Good morning all,
Just one item this morning, Wendy had a rough night. She didn't get much sleep and the bloody discharge continued. They are giving her whole blood and platelets this morning. I thought I should get this out because it probably means today won't be a good day for phone calls. If she is awake enough to answer she will probably be very hard to understand. When we left at 8:00 last night she wasn't sounding too good and if she had a rough night she has to be sounding even worse today.
I keep thanking you all, let me make it very clear, Wendy is also very grateful for all of your prayers and support. She really appreciates the calls and visits especially.
Art
Thursday, October 23, 2003 10:54 AM EDT
Hello all,
Wendy called this morning quite upset because she has blood in her stool. She described it as a red jelly type of thing. An hour or so later a surgical doc told her this was not uncommon in cases of “mega colon”. She is receiving blood and platelets.
As of 10:45, they are keeping an eye on the bleeding and it seems to have slowed down quite a bit. Wendy is very tired, I guess she didn’t rest very well last night.
Her other numbers are looking pretty good, no big changes.
I guess I might as well post this. It doesn’t look like this is going to be busy news day.
Thank you, all for your continued prayers and support.
Art
Wednesday, October 22, 2003 5:49 PM EDT
Wendy update 10/22/03
Hello all,
Wendy's holding her own. Numbers are looking good. NG tube is pulling out a little bit less than it has been.
The kids came in in costumes they borrowed from Jean for Halloween. She got a kick out of that!
Urine looks more like normal. Sister Laura was here with her parents today. She got a card and audio tape from Karen in Cooperstown.
They did another x-ray today. "They are never going to let me eat." Still having trouble with liquid stool. The doctors all said she looked much better.
She really really really appreciates all the cards and visits. She doesn't know how she would get through this without all of you. Its going to be a long haul. They are talking about putting her on Zoloft or something.
I really appreciate the prayers and support, too.
Art
Tuesday, October 21, 2003 8:40 PM EDT
Hello all, 10/21/03 20:15 EDT
Wendy says she’s too tired in the evening to actually dictate, but she gave me a few things she wants me to include.
She got yelled at for taking a shower by herself today. She also ate a little Jello and some soup. I’m not sure how she did that because she isn’t supposed to be eating yet and there is no way she could have gotten it herself.
She had a flat plate xray taken of her stomach. They are doing this to make sure the infection is getting better.
Everyone says she is looking better but she “feels like shit” As I see it, her being able to argue the point is a VERY good sign.
She has been sitting in the chair every day for the past 2 or 3 days, her liver and kidneys are doing better. Her BUN is still in the 40s, but Creatinine and Bilirubin are at or very close to normal levels. Albumin is up to 2.something. The amount of stool she is putting out is decreasing and it is getting thicker.
She didn’t walk around the nurse’s station today, she said she was too tired. The shower must have worn her out!
We went through some cards she has received recently tonight. You folks are very wonderful people. Peggy Hollister wins the prize for best envelope!
Thank you all so very much. May God bless you as he has blessed us with you.
Art
Monday, October 20, 2003 9:27 PM EDT
Wendy Update 10/20/03 21:00
Hello all,
The Light of my Life was shining bright today!
Her voice was clear and strong, she went for a walk around the Nurse’s station, and she was sipping on Fresca against doctor’s orders!
She still has the catheter and the NG tube in, they’re going to be very careful about putting her colon back to work.
Her numbers are good: Creatinine is down to 1.8, Bilirubin and BUN stable at 1.2 and 48, respectively and her albumin is up to 1.2, still pretty low, but its been less than one for the past several days, at least and they only just started the IV Gatorade (sorry, I can’t seem to remember what they really call the stuff.)
She almost did a post today, but she was getting pretty tired by 8:00 and several people had told her I hadn’t screwed it up too badly lately, so she asked me to.
This one is not just heartfelt, it is also enthusiastic:
Thank you all so much for your prayers and support!
Art
Monday, October 20, 2003 9:14 AM EDT
Weekend in review
Friday morning Wendy had an episode. I believe it was shock, but I never heard that word used. Her blood pressure fell below a readable level.
She was given large quantities of IV fluids and her blood pressure stabilized although the fluids made her breathing difficult and she was on an oxygen mask for a few hours.
The cause of the shock seems to have been an intestinal infection caused by C.difficile, a bacteria that lives in everyone’s intestines. The antibiotics she has been on gave it a chance to go crazy, and it did.
The episode resulted in calling in a bunch of new docs in a couple of new departments, surgery, and ICU along with the kidney and liver people she had already been seeing. ICU protocols required continuous monitoring so she was having her heart, BP, oxygen saturation, pulse and respiration. She was taken off ICU protocols this morning and the monitor has been unhooked.
She is still using a catheter in her bladder, when they put it in they immediately got about 600ml of urine. Looks like her kidneys had been working better thatn they thought, but the bladder had an issue. She also still has a NasoGastric tube going in to her stomach through her nose. Quite unpleasant, but it is pulling off large quantities of fluid from her stomach. They are doing this to take the pressure off her intestines until they heal up at least a little from the infection. They had a tube in her colon, but the stuff that was coming out was getting ‘chunky’. The chunks blocked up the tube, do they had to take it out.
She is getting out of bed sometimes to use the commode, but that is pretty much the limit of her physical ability as of Sunday at noon. She’s arguing for food and she argued for being allowed to get out of bed to use the commode and the bathroom. Arguing is good.
On the phone this morning they said everything was good, she slept off and on during the night.
More later.
Continued thanks for the support and prayers,
Art
Sunday, October 19, 2003 8:08 AM EDT
Good morning all, 10/19/03 08:00
Well, looking outside the window it looks cold and gray, but here in the BMTU it looks a little brighter and a little warmer.
Wendy is still putting out a lot of gunk from her NG tube, but they took out the rectal tube and she has the OK to get out of bed and use the commode. She wants her treadmill back and eggs Benedict, but we need to take one step at a time. She is still getting pretty nauseous when they shut off the suction on the NG tube for more than 10 or 15 minutes so food is still in the future a little ways. The NG tube is going to make getting out of bed much further than the commode a little difficult too.
Her creatinine is down to 2.0 and her bilirubin iis pretty stable too. Unfortunately her albumin is also down. If I read the print out correctly it is less than 1. That needs to come up quite a bit before she can lose the fluids.
Her skin is getting a little clearer, her voice is getting stronger and she is starting to push for things she can’t have yet. Unless and until the next dip in the roller coaster ride, she’s doing pretty well.
Thank God and all of you for your continued prayers and support.
Art
Saturday, October 18, 2003 10:47 PM EDT
Hello all,
Wendy is looking pretty good. Here BP is better than mine, 130/54 MAP in the 80s and 90s. Oxygen saturation in the mid to high 90s.
A Doc from the surgical team came in and seemed pretty confident that their services would not be required.
Her stomach is still sore, but getting better. She is chomping at the bit to start eating, but her digestive system needs some time to heal before they can let her eat anything.
Among all the other stuff she is getting, they now have her on IV nutrition, the stuff looks like Gatorade. This is requiring monitoring of her glucose levels and some insulin.
Her skin is starting to look better. She is starting to feel better even though she still doesn't feel
too well.
Her voice is getting stronger, but it won't be too clear until they get the NG tube out.
SHe is starting to gripe about a few things, she's on her way back!
Thank you all for your continiued prayers and support.
Art
Saturday, October 18, 2003 11:55 AM EDT
Hello again, 10/18/03 11:50
I visited briefly at about 10:30. She was sleeping peacefully, her BP was 120/55, and Oxygen saturation was around 95%. She didn’t have the oxygen running, either. I learned how they find the MAP, a calculation from the blood pressure numbers that indicates how much blood is actually getting to the organs. It’s 2 times the bottom number plus the top number divided by 3. Hers was 75; they say anything over 60 is good. I was told her kidney and liver numbers are basically unchanged. They have started 2 antibiotics targeted at the bacteria causing her intestinal infection and they are going to be doing another x-ray at some point today of her stomach.
I also have a little insight into how she could throw up, it seems the tube that was draining her stomach stopped draining briefly, probably because it got shoved up against the wall of her stomach or something. The stuff stopped draining, so she got rid of it by throwing up. I figured I’d work on some of the things I need to get done while she was sleeping and go back later.
Art
Saturday, October 18, 2003 8:29 AM EDT
Hello all,
From what I learned on the phone, They are starting
to hear some bowel sounds (very good), she slept
comfortably for at least part of last night, her blood
pressure is stable.
They told me she vomitted again this morning. I must
admit that puzzles me, She's taking nothing by mouth
and the NG tube is draining her stomach contents.
Again, I will update as best I can.
Thank you for your continued prayers.
Art
Friday, October 17, 2003 6:10 PM EDT
Hello all, 17:55 EDT
Not much news, but what there is is good. I took the
kids in to see her late this afternoon and she was
looking a bit better. Her blood pressure was around
115/60. Much better. And she was still breathing
without the mask. They are pulling a lot of fluid out
of her stomach. About a liter in 2 hours, 200ml in
the 30 or 40 minutes that we were there. She doesn't
like all the tubes, big surprise!, but her belly is
getting less distended and feels better.
She has her phone back, but be advised, she is very
hard to hear and/or understand. They didn't take it
away, but when they brought in the new equipment it
got moved out of her reach. She has it back.
Many thanks for your support and continued prayers.
Art
Friday, October 17, 2003 2:17 PM CDT
Hello all, 10/13/03 14:00
Here’s the latest, as promised:
Wendy’s blood pressure dipped too low to read this morning. They gave her a lot of IV fluids. That stabilized her BP, but gave her difficulty breathing. They had an oxygen mask on her for a while. She has a severe infection of the large intestine. It is what they call an opportunistic infection. That means one of the bacteria that lives in everybody’s intestines saw a chance to go crazy and took it. Now that the infectious agent has been identified, they are using an appropriate antibiotic to try to get it under control. It may become necessary to remove part of her large intestine, but her current condition is not well suited to surgery.
She has a catheter in her bladder. As soon as it went in she put out 600 ml of urine, about a pint and a half. Her kidneys seem to be working pretty well, she seems to have had a bladder issue. Her liver is holding its own.
She has a rectal tube and a naso gastral tube draining liquids from her stomach and large intestine. The are also using the ng tube to administer antibiotics directly to the stomach so they can’t be thrown up.
She kicked everybody out at 12:30 so she could rest.
Thanks for your prayers, at this point that’s the support we need most.
Art
Friday, October 17, 2003 9:58 AM EDT
Hello all,
Just got a call from the hospital. Wendy's blood
pressure is very low. She is on oxygen and is
critically ill.
I will keep everyone posted as best I can.
Art
Thursday, October 16, 2003 8:59 PM EDT
Hello all, 10/16/03 20:22
Stopped in to see Wendy after making a platelet donation this afternoon/evening. Jean and Jen were there and before they left Wendy’s Mom and Dad showed up.
Wendy’s numbers are all looking really good. Bilirubin, BUN and Creatinine are all heading steadily down. Her liver is good enough that they have started tacrolimus again. That will help her gut and her skin.
The liver biopsy indicated the issue with her liver is not the dreaded VOD or gvhd, but is the effect of the busulfan. The tacro might make it necessary to do dialysis again, but it will be a lower intensity dialysis that can be done through the lines she already has, she won’t need a new line.
They have started immune suppressants to bring the gvhd of the gut and skin under control and they have started IV nutrients, mostly electrolytes. Lucy said while the biopsy indicated the gvhd of the gut was only grade 1, the symptoms were more consistent with grade 3. When the immune suppressants calm the guts down a little, they are going to start giving her liquid nutrients that sounded a lot like Ensure only they will be mixing this to contain the things they think Wendy needs the most.
I didn’t see any flashes tonight, but the numbers look good, that will have to tide me over until she comes back a little more.
I hope this does not sound like something I’m saying because I’ve grown accustomed to saying it, because I can’t say it enough and I mean it from the bottom of my heart every time I say it:
Thank you all for your continued prayers and support.,
Art
Wednesday, October 15, 2003 7:22 PM EDT
Hello all, 3/15/03 19:08
Ben and I just got back from visiting Wendy.
On the surface she doesn’t look real good, but there were flashes of the Light of my Life.
She tried to get her nurse to get her the treadmill back when she has trouble getting on the commode next to her bed. She insisted she’d be ready for the treadmill tomorrow! Knowing her, I would not be surprised to see her on it when I walk in tomorrow afternoon!
Liver and kidneys are both improving steadily. Some of her readings are almost good enough that they can take her off the steroids and put her back on the Tacro. Biopsies confirm grade 1 GHVD of the large intestine and grade 2-3 of the skin. Its too soon for results from the liver biopsy, but it seems unlikely the liver issue is gvhd.
Now that the diagnosis is confirmed, they can get serious with the immune suppressants and get the GVHD under control.
She is taking some heavy duty chemicals for the discomfort. I was reading a Douglas Adams book to her and Ben and sometimes she was saying stranger things than he was. Those who have read The Hitchiker’s Guide to the Galaxy know that’s saying something!
As uncomfortable and incoherent as she was, I got the definite impression she is on the mend. She still has a ways to go, but she’s headed in the right direction.
Many thanks to all for the prayers and support.
Art
Tuesday, October 14, 2003 8:50 PM EDT
Hello all, 10/14/03 20:33
Submitted by Art, just reprieved from exile.
There is actually a bit of good news. Wendy’s liver and kidneys are both doing better. They are still doing a biopsy of the liver tomorrow to make sure they are dealing with the right problem, venoocclusive disease or graft versus host disease.
Preliminary results of the colonoscopy, according to Wendy shows what is probably grade 1 GVHD of the large intestine. This is actually not as bad as it could be, grade 4 is the worst. And some GVHD is desirable because it means the new WBC will probably take out any of the old cells that were the initial problem.
Her belly still hurts. That may be another reason they are still doing the liver biopsy. Her eyes feel better. She is very tired and isn’t speaking very well. Her skin is all red and dry and she looks like a person would look if they had retained a lot of fluid.
She is taking a medicine, I can’t remember the name, but she has mentioned it before, for the belly discomfort that makes her groggy and a steroid or 2 to control the new immune system’s reaction to the new body it finds itself in, graft versus host disease. They have started a new drug to help control the diarrhea and she is on antibiotics.
She seemed to enjoy the slice of an apple Nathan picked just a couple of hours before I cleaned, peeled and sliced it for her. She could only manage one slice, but she said that was more than she had eaten in a while.
Many thanks for all the prayers and support in this trying time.
Art
Sun, 12 Oct 2003 11:41:27 EDT
Hi Folks,
This is really hard for me to write because my eyes
hurt so much from the burning (probably GVHD of the
eyes). It makes it really hard to focus. I have
drops for it which help a little. There is a consult
scheduled with the eye doctor tomorrow.
Also, I have been having 2-3 liters of liquid stool a
day. Which is exhausting. This is most likely GVHD
of the gut. They have planned a colonscopy for
tomorrow, this means that starting at 4:00 tonite I
have to start drinking large quanties of prep which
will completely clear out anything in my bowels making
the night extremely long.
This puts off the liver biopsy, because in order to do
that, you cannot drink after midnight.
My kidneys and liver just seem to be continuing to get
better, and I actually weigh less than 200lbs so I'm
losing a little bit of the weight. But it's slow
going. They started changing around my
immunosuppressants in an effort to control the GVHD.
I'm sleeping better and I appreciate visitors as much
a possible:cards, phonecalls all welcome.
Unfortunately food doesn't taste good, but sometimes
fresher foods are o.k. and gatorade doesn't taste
horrible either. That's about it, thanks for you
continued support
Love,
Wendy
Saturday, October 11, 2003 11:51 PM EDT
Hi,
Laura ( Sister) is typing for Wendy.
Wendy's doing better today. She's been up out of bed
which has made her feel much better. Continuing to
have a lot of watery diarrhea. The kidney Dr. is
hopefull she will not need any more dyalisis. The
team that is taking care of her for the BMT wants to
do a liver biopsy on Monday to see if she has VOD or
Garph vs. Host. Biopsy is ok to do with Wendy. This
will help to show what method of treatment is next
concerning her liver. If the watery diarrhea
continues they may want to do a colonoscopy to see if
there is any graph vs. Host of the gut.
She continues to be on a narcotic drip for the belly
pain. Her eyes have some goo that makes her eyelashes
stick together. This also makes it hard to keep her
eyes open.
Wendy organized her table and widow shelf by herself
today. She also walked around the nurses station with
me even though she is very tiered today.
She's not eating much because everything taste like
"SHIT".
Thank you for ALL OF THE SUPPORT AND LOVE!!
Wendy
Friday, October 10, 2003 10:17 PM CDT
Hi All,
I am sorry to take so long to write. We started a
narcotic continuous drip to help with some belly pain
I am having and it makes me tired. In addition, I was
on bedrest until a few hours ago. So getting at the
computer was difficult. We didn't dialyses yesterday
or today. We pulled the femoral line for
dialysis--which then, of course, bled. So I had to
lay flat in bed with a sandbag on my groin for 4
hours.
Last night and this morning, I had nonstop brown
liquid stool (poop). They called the GI doctors--but
now it has slowed way down. I vomitied the last
couple of mornings. I am not eating much, nothing
tastes good. Maria Moreland visited and was treated
to all the charming experiences of my morning. THe
lady with the caste iron stomach. Melissa also drove
down from Potsdam to visit.
Labs all seem to be holding steady. Engraftment
continues, my platelets numbers are even starting to
go up--amazing.
Everything else is stable. I just saw myself in in
the mirror. Those of you who keep telling me I look
great--need eye exams. I look horrible. Everyone
tells me it will take weeks to months to get close to
back to normal.
Please don't e-mail me. It takes too long to go
trough. Please post on the website.
Thanks to all for our continued support.
Love,
Wendy
Friday, October 10, 2003 9:11 PM EDT
Hello all,
Not much news. I should let you all know, they are going to be doing maintenance on this site and updates may not be possible starting Saturday until Wednesday. It probably won't take them that long, but it might.
They took out the line in Wendy's leg. They kept her in bed for a while after it was out to keep it from bleeding too much. They are going to keep an eye on her lab results and decide whether they need to do further dialysis. If they decide to, they will put another line in her chest Monday.
She is anxious to get up and move around a little. She isn't eating much because nothing tastes good and she is throwing up quite regularly.
Thank you to all for your continued prayers and support.
Art
Friday, October 10, 2003 3:14 PM EDT
Hello all,
Looks like I didn’t send anything to Wendy’s list yesterday, sorry.
By this time they have probably removed the line from Wendy’s groin. I suspect they will not let her walk as much as soon as she would like. Her BUN and creatinine are still up; they will decide Monday whether to put in a new line in her chest. I don’t know if they did dialysis today or not, my guess would be yes.
Bilirubin is down to 6. Her belly still hurt, except for the dilaudin, and that tends to make her puke. She has been told it may be a matter of months to lose the fluids.
Thursday, October 9, 2003 12:18 AM EDT
Wendy sounds a little unfocused today so I'm going to post figuring she probably won't get to it.
As per 2 or 3 phone conversations in the past 12 hours, Wendy's labs are all down. THey have changed her medication from morphine to dilaudin because that's easier on the kidneys. She is having trouble keeping things down. She isn't nauseous, it just comes right back up again. She is running pretty constant low grade temps. I guess they are pretty much going to ignore them as long as they stay low grade.
The unofficial verdict on the CT scan is: there's nothing there that shouldn't be there.
They decided to keep the femoral line in until Friday and do one more session of dialysis. They are saying there may be some residual damage to the kidneys that will never resolve, but it shouldn't be enough to cause any serious difficulties.
Her belly feels better, but that goes along with feeling unfocused, unable to close her eyes, and unable to keep them open.
Both kids are on the road to recovery and, God be praised, I'm not sick.
Thank you for all your prayers and positive thoughts. And the food and other assistances you have been so generously providing.
Art
Wednesday, October 8, 2003 11:19 AM EDT
Hi folks,
Sorry it has been so long since my last post. Things
have been up and down. Yesterday morning I woke up
after a series of terrible dreams/hallucinations not
really sure of who or where I was. It only took about
5 minutes to get it together, but it was a wetched
night. Then I was depressed-- am on steriods and I
think it is making me a little loopy. Then I gradually
got better and had a series of visitors, which was
nice and cheered me up. Helen saxby came and brought
me a gift from the old people's riding club which was
beautiful. My sister-in-law, Sue visited for a while
too--she has been very helpful.
She works here at Strong.
We decided not to do dialysis yesterday to see what
the kidneys would do on there own. Which turned out
to be not much--the BUN and Creat went up slightly,
and while I am making urine--I am not putting out as
much fluids as I am taking in. I just talked to the
kidney Resident and I voted for dialysing today--He is
going to talk to the Attending and let me know what
they are going to do. The femoral line I have for
dialysis is only good for today and then it has to be
pulled--it is only good for 3 days. So if we would
have to do more dialysis tomorrow, I would have to get
a second jugular line--which would be a big pain in
the ass.
The liver seems to be gradually getting
better--bilirubin keeps dropping, the other LFT's are
up, but is probably a matter of stuff clearing.
The rash is better, and the jaundice(yellow skin) is
improving.
I ate breakfast and lunch ok yesterday and things
seemed to be going ok.
Then in early evening I started running temps up to
105F. The tyenol never really works, and They can't
give me vioxx anymore, which does work, because of the
damage to my kidneys and liver. So I am laying on the
bed naked with ice packes on both groins, armpits and
my neck. We ended up having to do that 3 times.
Eventually it seemed to work until this morning--I am
running another low grade temp.
In addition to this, I started having all of this
lower abdomenal (belly) pain. Very intense, constant
with a rhythmic component. I started moaning like in
childbirth. I felt like I was about 6 cm dialated in
labor. I think my stupid ovary is trying
ovulate--dummy thing, I thought the chemo would kill
it.
So I ended up having to take narcotics to deal with
it. Eventually, I actually got a few hours of not
terrible sleep--which was a delight. But I am back to
moaning intermittently. Just saw the team. We are
going to dialyses today. And they want to do a CT
scan to be sure I don't have an abcess or some sort of
cololitis. ok by me.
I remain overwhelmed by your support, and
caring--thank-you.
Love, Wendy
Wednesday, October 8, 2003 6:12 AM EDT
WendyUpdate031007
Submitted by Art (chief jester)
Wendy had an up and down day yesterday. All I know I heard on the phone here goes:
Bilirubin is down, BUN and creatinine, one is down, the other is unchanged. WBC is VERY good. Fevers still coming and going. She got up to 39.5 yesterday ,10/7.
She seems to be back to doing better earlier in the day, for those who have asked concerning the best time to visit. Another point on visiting, even though her white counts are up, her immune system is immature and she is still VERY susceptible to infection, so all the rules are still as important as they were, no colds or flus, no close contact with anyone who has a cold or flu. Nobody wishes that were not so more than I, but there you go.
Her fluids are rearranging themselves in a way that will make them accessible for the kidneys, or dialysis, to remove them. Unfortunately, until that happens they are causing significant discomfort.
If I understand correctly, part of the fluid issue is that her albumen levels are low. That is the protein found in egg whites. It is also responsible for fluid retention in the blood stream. It is water soluble, so when the levels are low, the blood stream does not require as much water to contain it, so the water is available to soak in to the surrounding tissues. More or less.
Tuesday, October 7, 2003 6:34 AM CDT
Hi Folks,
Felt much better today, but literally didn't sleep a
wink all night. The auditory and visual
hallucinations make it impossible to sleep. The
visual stuff is only when I close my eyes or am really
zoned. I asked the doctor if it was ok to take ativan
to sleep or if it hurt my liver more. He said it
won't hurt it more it would just clear from my blood
stream a little more slowly. So I will take it
tonight. I am ok during the day because it is usually
a little busy--I still want you to visit if you can,
or want to. (Maria, I look at that picture everyday it
is on the wall across from the bed under a picture of
Darian Chiaachiaa jumping a big ass ditch and brush
at, I think, Burgley. People ask if I did that and I
laugh and say no, but the horse I am sitting on
probably could have in his hey day. Sorry everyone
else there actually is a connection there --it is not
just drugged rambling.)
So my day. I actualy ate three small meals and didn't
throwup--Yeah! I am on bed rest--strict, because of
the femoral line (although they did let me stand to
get weighed I needed help to keep my leg straight, but
honestly I think I would have needed help anyway---5
or 6 days ago I weighed a fairly toned 160#, today I
weighed 196#. I am so incredibly ugly that anyone
who says they love me after seeing me now must mean
it. I know it is not going to last, but it is
demoralizing-I had just started to get used to
thinking of myself as fit). Well, one of the joys of
bedrest is bed pans. I thought I was going to hate
this, but as I have almost no modesty, and the nurses
are great about it--it is actually a lot better than
struggling to walk to the bathroom. I know the nurses
would have helped had I asked but I hate to bother
people when I can do something. I could do it, but it
was just hard--so I didn't ask. The funny thing about
the nurses here is none of them touch the center lips
of the female genitalia. It is like it is sexual our
something--I have to ask could you really clean in
front, I peed and have vaginal bleeding (stopped the
birth control pills for liver concerns)--I don't want
to get any tissue breakdown. They are great about the
hemmorhoid. It is weird.
Anyway, They dialized off 2 liters of fluid (removed
it from my blood) today. That equals about 4.4 #.
But eventually the kidneys will start working and I
will pee it all out. Most of it is tramped in the
very small intercellular spaces. The fluid has to
work itself to bigger collection areas--edema or
swelling--to where the kidneys can deal with it when
they are better. This is called mobilization. That
is what I feel happening now--it it a very good
sign--but uncomfortable. I can actually feel my skin
tingling from the pressure and my legs and feet and
ankles are getting bigger by the moment, as is my
belly. But this means that things are very probably
getting better. For you OB/Gyn people out there it is
like post partum day 3+. I am pretty sure it is a
good thing, but uncomfortable. I think the liver is a
little less tender now, but I can't feel the size as
well because of the swelling.
Now for the numbers. I am not going to explain them
for the non-medical people--it is too complicated.
But it looks like I have completely engrafted. My
whites blood cells are completely normal!!!
5-Oct
6-Oct
WBC
2.3
WBC
5.7
RBC
3.2
HB
11.8
HB
10.6
HCT
33
HCT
29
MCV
90
MCV
91
MCHC
33
MCH
33
RDW
15.3
MCHC
36
SEGS
66
RDW
15.4
BANDS
21
SEGS
77
anc
2700
BANDS
13
NA
130
anc
2070
K
3.5
NA
124
CL
103
K
4.1
CL
101
CO2
15
CO2
21
BUN
42
BUN
42
CREAT
5.1
CREAT
4.1
GLUC
68
GLUC
103
CA
7
CA
6.6
PHOS
3.2
PHOS
3.6
MAG
1.7
MAG
1.6
TP
4
TP
4.2
ALB
1.6
ALB
1.9
T BILI
13.3
T BILI
12.1
D BILI
13.2
D BILI
11.9
AST
36
AST
76
ALT
36
ALT
54
ALK
123
ALK
125
LD
1137
LD
931
LD was higher before I was
admitted--don't know why, maybe tissue damage from the
horse fall.
Sorry I couldn't do it in columns, my computer skills
suck. I know some of you ask for the numbers, So I
thought I would give you an idea, but I won't be ale
to do it every day.
Well after a day without fevers, my armpit temp was
102.2 F. More blood cultures--the roller coaster
begins again--yippee!
oh, by the way I had music therapy todaywhich I really
like, and my parents and the sister of my Dad's
friend--she works here. Had to ream Dad out for
trying to be over protective and misleading--I already
now how bad things are, I don't need people trying to
minimize them--then I waste precious energy trying to
explain--I think he might have actually got it.
Nathan has a real cold, so none of them can visit for
6-7 days. It is driving Art nuts. But he says he is
not angry at Nathan and is treating him with kindness
and patience.
Thanks to everyone for your love and support, it has
been overwhelming.
Love,
Wendy
PS Mike and Sue Ames, I still can't believe what you
did this weekend--way above and beyond the call--I
will never forget it, even though I know you do that
stuff a lot. I have been wanting to get it done for
7+ years, but didn't want to do it myself .
Monday, October 6, 2003 4:26 PM EDT
Wendy called this morning with good news. Her white blood cells are in a normal range, her bilirubin is down a little, either her creatinine or BUN is down a little and the other is stable.
Our news isn't so good. The kids have what seems to be a stomach flu so we are banished for at least a week.
The prayers are working, don't let up!
With greatest appreciation,
Art
Sunday, October 5, 2003 9:13 PM EDT
Oct.14 18:45
Hi Folks,
This is being dictated to Art. I could probably write it, but I'm still pretty tired , so I'll let him.
This morning I felt the closest to death I ever have. I can't imagine feeling worse although I suppose there are a lot of people who feel worse on a regular basis.
The good news is my brother's stem cells have definitely engrafted, my white count is 3.1 this afternoon which is still on the low side and ANC is 2070. The ANC is normal. Also my rash has gotten much better and I no longer am scratching all the time, and this is wonderful. And the hemorrhoid has reached manageable proportions.
So the transplant itself is working. However, the venooclusive disease of the liver, or VOD, is really kicking my butt. I am currently in both liver and kidney failure and have gained 30-40 pounds in the last less than a week. Also I was a lovely shade of pumpkin between the lovely jaundice of the kidney failure and the red from the rash, it is quite attractive, ha ha!
I've been having a lot of intestinal gas which has been distressing pain wise as well and difficult to resolve. I am taking a medication for it which does help some and hopefully these things will move along in time. Because I have been doing so much chest breathing, as my pulse resides above 100 most of the time because of fever or liver failure or the added weight gain has made it hard for me to breath properly, although I am trying to work on it once again. A few days ago I asked for an incentive spirometer I haven't used it for a couple of days, but I'm using it again and I know that will probably help.
This morning when the team rounded I pleaded with them to do something, I couldn't stand the way I felt any more. The good news was that my liver numbers (bilirubin) had not gotten any worse overnight. However my creatinine and BUN were getting worse so I told the doctor I really wanted to go on dialysis. This is a way of removing toxins and excess fluid from the body. However the dialysis nurse said it can make you tired. The downside to this is they had to put a new venous catheter IV in my femoral vein which is located at the very top of where your leg meets your body. Therefore, I am on bed rest for the entire time I am on dialysis- big time sucky. When the kidney doctors came to talk to me they wanted to wait a day to start dialysis because they thought maybe things would get better on their own, but I begged and pleaded, literally. The kidney doc still said it would not be a good idea, he thought it might star getting better on its own. Of course there has been no indication of that happening because the kidney numbers have steadily risen. After he talked to my doctor he came back in and said they would start it today. So I did 2 hours of dialysis today after getting the femoral line put in. Every day such surprises and excitement in my life!
The last pulse rate before the dialysis nurse left was slightly under 100, which was great because I have been running in the 100+ range. Also, I continue to have intermittent fevers, we have no idea why, but they really suck! Today I think the highest was 103.2. They've also had to change some of my medicines, I'm not on the tacrolimus any more which was to suppress my brother's immune system so I wouldn't get graft versus host disease. But I can't be on that and dialysis at the same time so I'm going to have to take steroids, hopefully for a short time only .
They've also changed some of my antibiotics which resulted in the rash getting better and they lowered almost all my other medicines because my liver is not handling medicines very well. I didn't sleep well last night, I sort of dozed, then hallucinated then sort of dozed again. They didn't give me anything to sleep because they were afraid it would hurt my liver , which makes sense. So I called Art this morning because not only couldn't I sleep but I couldn't keep my eyes open so I couldn't read or anything like that so I asked him to come in and read, which he did. He's been here more or less the whole day which has been helpful. At least now I can actually open my eyes and keep them open long enough to concentrate on something like a book. I actually watched some football, the Bills got lucky!
I have been told by many people that my voice sounds much better this afternoon which is a positive thing. I am truly sick of being sick and hope this whole thing is on the upswing.
For those of you who are in to numbers, Lucy, the NP , the one I love, told me that the very small study they did with the drug I am taking for VOD had a 41% survival rate. Hope I'm in the 41%!
Continued thanks for all of your help, support and positive thoughts and prayers (especially to my Uncle Joe who has come out and anointed me at least 3 times that I am aware of, and I appreciate that. It is a very soothing and healing ceremony.)
Love to all,
Wendy
PS Hair is falling out.
Sunday, October 5, 2003 11:50 AM EDT
Hi,
As of 11:00 this morning, almost all good news. Wendy's bilirubin did not go up. Her white counts and ANC DID!!! both are very close to the low end of the normal scale.
Her kidney malfunction indicators went up too. She has put on almost 40 pounds of water weight in 4 days. This is making her exteremly uncomfortable.
We saw the kidney doctors this morning. They were not anxious to do diaysis yet. In their best medical opinion, they wanted to wait another day for the kidneys to kick back in on their own. Wendy's medical team, however, convinvced them to go for it today. It has been made very clear that this will not immediately relieve the discomfort, but Wendy's thinking is the sooner they start, the sooner it will help.
I'm going back to the hospital. She called at 5:00 AM and asked me to come in and read to her. She says she is exhausted, but can not sleep and my reading gives her something to focus on. I may post more later today, but just in case, that's the story so far.
I don't think she wants to say 'don't visit' but be warned if you come in, she is feeling extremely unwell and she may say things she should not be held responsible for. If you think you may have issues with that, please don't visit for a while because if she hurts your feelings she will probably feel bad about it.
Art
Saturday, October 4, 2003 7:511 PM EDT
Hi Folks,
This is Art typing as Wendy dictates.
I have a very serious condition known as veno occlusive disease, VOD, of the liver. This disease is a result of he chemotherapy and is somewhat unpredictable as to who will get it. It also can result in liver failure and kidney failure. Spoke to the kidney Drs today and they think I need to go on temporary dialysis. One of the problems with this is that I will need another central line put in, the doctor mentioned using the groin. In the last 3 days I have gained 30 pounds I feel like a sausage about to split open. The dialysis will at least drain the water, hopefully. They tried to use lasix which is a drug that takes water out of the system but it was completely unsuccessful.
The 2 above illneses are making me very tired and weak. I can be somepalce all day and not be able to open my eyes because I don't have the energy. On the good news side, it looks as though I have engrafted. My ANC (absolute neutrophile count) was 300.
This shows that Peter's cells definitely engrafted.
Love to all,
Wendy
P.S. Visiting can be a bit difficult right now.
Saturday, October 4, 2003 9:05 AM EDT
I just got a call from Wendy. She said she could barely dial the phone. I couldn't hear her very well either, so I called her nurse and made sure I had the information straight.
Her billirubin is up to 13. The drugs for VOD aren't working yet, They may not, her doctor said this may be a different issue.
There is creatinine in her blood, or too much creatinine, I'm not sure if there is supposed to be any at all. That means her kidneys are not working properly. As of this writing, the kidney doctors are looking at her and deciding whether or not to do dialysis.
Nathan caught a cold so we are exiled for a couple of weeks.
More if he shares it with us. So my previous request is back in force, we have stuff that needs to get to her, if anyone can pick it up, we would be grateful.
Art
Friday, October 3, 2003 5:02 PM EDT
Wendy update October 3, 2003 17:45 EDT
Wendy asked me to put this out. She is not feeling very well tonight. She has asked that people stop sending email until further notice as she doesn’t think she’ll feel well enough to read it for a while.
Her hair is falling out after all. But tonight that’s pretty trivial. She has a problem with her liver. She has been shaky and feverish for two days running and I think she’s scared.
I spoke with her doctor briefly, her liver function is worse than it was yesterday and her billirubin counts higher. He is not prepared to commit to a diagnosis of VOD yet, but he is treating her for that because it is very bad news and if that is what she has, it would be very dangerous not to treat it. He says he is optimistic. Personally, I remain convinced she will come out of this OK, but that doesn’t make the roller coaster any smoother.
God please watch out for her, give her a good night’s rest and help her feel and be better in the morning.
Thursday, October 2, 2003 6:38 PM EDT
Hi,
As of about 30 minutes ago, Wendy isn't feeling too well. She's running a temp of about 38.5C and her liver is enlarged, tender, and her bilirubin level is up. Some of these observations came from the ultrasound she had this morning. She has also put on some weight. That might sound good, but it is consistent with a potentially serious liver disease called venoocclusive disease. There are good treatments for this disease, but they have side effects and her doctor doesn't want to risk the side effects until the diagnosis is more definitive. The ultrasound showed that while the liver was enlarged, blood flow was good, no blockage and no reverse flow.
So tomorrow, if her billirubin is still going up and she puts on any more weight, they will start treating for VOD. She didn't eat a lot today, like just about nothing. When the kids and I got there she was just finishing up her relaxation therapy. I got to rub her calves while we listened to a very pleasant rendition of a couple of very nice songs. Elvis' Falling in Love With You and Stevie Nicks Landslide. Tomorrow is another day. Let's pray it includes a white count and a declining billirubin level!
Thursday, October 2, 2003 4:33 AM CDT
Wed, 1 Oct 2003 21:50:53 -0700 (PDT)
Hi Folks,
The line placement went ok yesterday. They actually
had a little trouble as the jungular vein kept
twisting and sliding over the carotid artery, which
they definately didn't want to poke. Unfortuately
they only put in a double lumen (two access sites),
and I didn't think to ask if it was a triple lumen
until the end of the procedure. He offered to change
it, but I declined at that point. I was tired and
febrile, and not feeling well. I did the whole thing
without any drugs. They let you get out of there
faster then. They did a chest X-ray, which maybe
showed something in the upper lobe. My doc thinks it
is artifact. But I went for a chest CT today. The
worse thing about the line placement was that they
kept me NPO (without food or drink--literally nothing
by mouth) from midnight on, I didn't get the line
placed until after 5 pm--17+ hours, while running a
fever and all I wanted was to drink---cruel. That was
what I was telling the doctor and he promised to bring
it up in a staff meeting. I only had to be NPO for 4
hours prior to the hickman.
My fever seems to be down and I walked some on the
treadmill today--but a bit slower.
My bilirubin is up, and my pee is orange--probably due
to the bilirubin. It could be from the methyltrexate
on top of all the other chemo regimens, or it could be
venoocclusive disase (VOD) of the liver. This comes
in several varieties--all caused by the chemo. I have
been taking a medicine every day to try to prevent
it. It can be mild and sponatenously resolve. It can
be moderate and sometimes sponatenously resolve. They
would usually treat it with blood thinners, but my
platelets are too low. It can be sever, resultng in
liver failure and death. Let's hope it isn't that. I
have an ultrasound of my liver scheduled tomorrow.
And guess what--I have to be NPO after midnight--I
plan to cheat with occ small sips--unless they come
really early--dream on.
I had visitors today. Dr. Page came-- which was very
sweet. He brought two books--a joke book for macho
men--for when my Y chromosone starts showing up and a
far side book. Both of which I appreciate. The first
one sort of balances the book Judy brought--which was
jokes only women get--or something of that nature.
Jean Storie and Jen Orcutt also came bearing mcdonalds
and horse magazines. They stayed awhile and watched
horse video's with me. Art and the kids came, but he
had to leave fairly early to get Ben to the barn and
ride. Nathan stayed and Jean gave him a ride back.
Right after they left, I vomiting up lunch--I hadn't
tried the mcdonald's yet. Had diarrhea at the same
time--while trying to clean up, I threw-up in the
shower. All in all a lovely experience. So I took
some immodium and some ativan. So now you have me.
Just woke up from the ativan. Checked my e-mail and
the web page and wrote this post.
So it was a good and bad day, like most. Thank God the
fever seems to be more or less gone.
Thanks for all the continued support.
Love to all,
Wendy
Wednesday, October 1, 2003 8:21 PM EDT
If you saw my last post, you would think Wendy had a good day. And you'd be right. She was looking good, feeling pretty good, doing well. They gave her a drug, the name of which I don't recall, to prevent GVHD.
When evening rolled around, however, she threw up and got herself signed up for an ultrasound examination of her liver tomorrow. Her bilirubin is abnormal so they are looking for liver complications. I guess the prime suspect is bad news called VOD, venoocclusive disease. This happens rather often in BMT patients and the severe form has a not good survival rate. This would be a good time to pray a little harder.
I was told this was going to be a roller coaster ride. I'm too old for roller coasters.
Art
Wednesday, October 1, 2003 6:54 PM EDT
She made me cry again! Only this time the tears were falling on a great big smile!
She looked so GOOD! No fever, laughing, smiling, talking in a strong, firm voice. And her hair is growing back. Maybe its too early to count the chickens, but it looks like she didn't have to shave it off. Still no WBC, but soon, I hope.
She'll no doubt fill y'all in on the details, I just wanted to share this observation.
Art
Tuesday, September 30, 2003 6:50 AM
Hi folks,
Sorry about no update yesaterday. The morning was
ok--did my 20 min on the treadmill. And I had some
very nice visitors. The social worker in training
came in and talk for a few hours, which was good. Now
she knows my whole live.
I had the PICC line removed yesterday, and the area
seems less sore and red. Unfortunately yesterday
afternoon, I started with very high fevers--105+ F.
Accompaning these were shaking chills (rigors), 2.5
hours worth. The nurses wanted to give me demerol,
but Art and the kids were coming, and I wanted to see
them, so I waited. By the time they got here, it was
getting better. But I was exhausted from the shaking
so I took ativan and went to sleep after a short
visit. I am still exhausted. Fevers take a lot out
of you. I sweated through all my bedding last night
so I got up and showered and the staff changed the
bedding---felt much better.
I have a very mild dry cough today--actually pretty
rarely. I am suppose to get the new line in, and a
chest x-ray today. I am running a 101-102 temp right
now and am tired, so I will close.
Thanks for all of your support.
Wendy
Tuesday, September 30, 2003 1:47 AM EDT
Submitted by Art-
Wendy had a rough day Monday. She was geting inflamation around her PICC line and a bit of a fever Sunday. They did an ultrasound Sunday and found some clotting. Monday started OK, not great, but OK. By 5PM she had a fever of 39.9C, about 104F, and was starting to have convulsions, rigors.
They pulled the PICC line and got the fever headed down. When we left at 7:30 she was zoning out from the meds they gave her for the fever.
Sun, 28 Sep 2003 19:40:07
Hi Folks,
Another eventful day in the world of Wendy. My temp
went up to 101+ F. Which is miserable. I felt pretty
good in the morning and by afternoon felt like crap.
I have a clot in the vein which the PICC line is in.
We did a doppler ultrasound of the veins. I am pretty
sure this is where the fever is coming from. The
doctor doesn't want to pull the PICC because he is
afraid about not having access. I guess we will see
how my fever does overnight. I am voting for a
straight subclavian central line (going directly into
the vein that runs under the collarbone, but not
running under any skin, just get into the vein. They
are less stable than other central lines and if you
accidentally pull it out, it makes a very big mess if
you don't actually bleed to death. However, I think
with my counts so low anything else will get
infected). The nurse practioner said that she is
hopeful that I might engraft within the week, which
would be good, because then I would have white blood
cells. At the moment I don't have a temp--but we will
see when the Vioxx wears off.
I did walk 20 min on the treadmill, and shower. Art
and the kids came and we watched a stupid, funny
movie. Unfortunately, I started running my fever and
shaking toward the end of it. Ben tried to show me
how to play super mario the other day, but I am
hopeless.
I have been nauseous off and on today, but haven't
vomited. I think it is the fever, but who knows. I
have been eating. Kate Ott stopped by and brought my
favorite cookies--which only she makes. I think I may
try one soon.
Thanks for all the e-mails, cards, phone calls etc. I
appreciate the support.
Love,
Wendy
Sat, 27 Sep 2003 12:32:27 -0700 (PDT)
Hi Everyone,
Do NOT check with Art about visiting me. I want
visitors, and do not have enough so far. Sometimes I
am a little out of it--you can call the floor and
check if I am ok. If you are sick, or have been
exposed to sick people you shouldn't come. (Art is
having control freak issues).
Love to all,
Wendy
Fri, 26 Sep 2003 19:59:34 -0700 (PDT)
Wendys Update 9/26
Hi folks,
More of the same today. I walked on the treadmill for
20 min. I had a better time with the diarrhea with the
help of lomotil, or whatever it is. I had a very nice
music therapy session today. Threwup up both
breakfast and lunch essentially undigested--4 hours
after eating. So far dinner (Art went out and got me
McDonalds cheesburger and fries) is staying down.
Despite this I have gained a few pounds--they say it
is water. Go figure. Have been taking a fair amount
of ativan and phenergan for the vomiting and so have
slept a lot. Sleeping makes you tired. The hickman
wound is looking good, starting to heal. I insisted
on changing the dressing.
I have noticed two small sores on my lower lip, and a
mild sore throat. I guess it is beginning. I am way
tired and so have to go. Thanks for all of your love
and support. Have patience with Art, he means well.
Love to all,
Wendy
Thu, 25 Sep 2003 19:49:11 -0700 (PDT)
Wendy's update 9/25
Hi Folks,
Thanks again for all of your support . I have
officially nadired--dropped my white blood cell counts
to zero, and reached one of the most dangerous parts
of the transplant. I recieved 2 units of red cells
today, and I think 5 units of platelets, but they were
all in one bag. There was some trouble with getting
the blood in through the PICC line, but putting on a
pump helped.
I walked on a treadmill for 20 min this morning, which
felt great while I was doing it, but did tire me out.
My sister-in-law came and visited. I think I kept her
longer than she planned to stay, but I enjoyed her
visit.
I have been having frequent liquid stools which
wouldn't be so bad if I didn't have a bleeding
henorrhiod the size of Texas. The nurse said that it
very consistant with mucositis of the gut, and I
finally gave in and tried some immodium which seems to
have helped. Because the hemorrhiod is bleeding they
are trying to keep my platelets at the 50 thousand
mark, but I doubt they will be successful.
They started me on methyltrexate (a milder chemo to
prevent GVHD-graft vs host disease). And I threw up
breaksfast. The nurse swears that the methyltrexate
isn't the culprit. But I don't believe her. I asked
them to run Zofran before they give me it in the
future. So I didn't eat lunch. I finally gave up and
took ativan and went to sleep. I woke up and ate
dinner, which I had the nurse order before I went to
sleep.
So far no mouth sores--just really dry. They changed
one of my antibiotcs and my rash seems better. They
gave me antifungal powder for a rash in my groin.
Will have to see how that works.
I remain without fevers.
The wound from my hickman remains sore, but no worse.
The dressing fell off of it this morning--very ugly
and angry looking.
So by and large I am stable. Thanks to all for you
love and support.
Love,
Wendy
Wed, 24 Sep 2003 21:50:07 -0700 (PDT)
rebirthday day
Hi Folks,
Once again I would like to thank everyone for the
cards, e-cards, e-mails, help, offers of help and food
and visits. You are all way too kind and much better
people than I am. I always mean to do things like
that, but usually don't get around to it. I
appreciate visitors, but sometimes I may not be too
with it. If you want to sit with me fine, if not
that's ok. If you come to visit you can not have been
sick for the last 7 days, you can not have been
exposed to anyone who was sick in the last 7 days, and
you can't wear clothes or shoes that have been worn in
barns, or barn like settings.
As Art told you today went well. I have been without
a fever for over 24 hours. I was wondering why my
pulse was still around 100. Well my hematocrit (level
of iron in the blood, or more actuately the measure of
the blood's ability to carry oxygen) was 21%, normal
is around 40%, and normal for me has been around 30%.
So they transfused me 2 units of red blood
cells--which seemed to go well. My pulse is running
around 80 now, which is still high for me , but
definately better. Before I got the transfusion, I
walked around the nurses station for 15 mins. I have
walked at least 15 mins every day so far.
Well, any way the PICC line placement went well, the
surgery team came and looked at the wound from the
infection around the hickman site, and repacked it.
They said it looked better, but still not nice normal
healing. They will come to check it tomorrow. It is
a little sore. The transfusion of Peter's cells went
well, but I am told they had to squeeze them all into
me--guess they were thick for the lumen of the cath.
I was out from a combination of benadryl, and ativan.
My uncle did the annointing of the sick as the cells
started to go in--hope the Big Guy was listening.
Now we just wait to see what happens. I already told
you about the mucositis (mouth sores). I have been
rinsing frequently with saline, baking soda,
antiseptic mouthwash, and some tea tree oil. And
brushing with tea tree oil and mint toothpaste. My
mouth is dry, but so far no sores.
I can expect unexplained fevers, and various other
problems until Peter's cells start to engraft--usually
2-3 weeks. Then I have to be on the look out for
signs of Graft vs Host Disease.
Right now I have an itchy rash on my chest, back of my
neck and my groin. Maybe an allergy? I will ask the
doctor tomorrow. My hemorrhoid continues to be a pain
where it is located. And the small amount of diarrhea
persist. My tastes have changed since the chemo, and
chocolate and diet cola have lost their appeal.
Lemonade is good though. No vomiting for a while, but
my stomach feels a little off now.
I am tired and running out of steam, hope to update
you all tomorrow. Thanks again for all of your
support. This would be much more difficult without
it.
Love,
Wendy
Tue, 23 Sep 2003 22:51:44 -0700 (PDT)
Hi Folks,
First off I want to thank everyone for your
encouraging messages, cards, e-cards, visits, and any
help you have been giving Art and the kids. It is
very much appreciated.
As you know, because Art stole my thunder
again--things are better. But for those of you who
enjoy the blow by blow, today was an interesting day.
Those with weak stomach's may want to stop here.
Some time in the night yesterday my temp was 104+. I
woke up bathed in sweat, thinking that at least the
fever had broken. But then I developed shaking chills
so bad that I finially took the demeral that the nurse
offered. At that time my fever was about 103.
Between the ativan for nausea and the
demerol/phenergan I was zoned for long periods of
time. Which probably why I am doing this so late at
night. I can't sleep without drugs--never used to be
a problem for me.
Anyway, I was awke when the team came in to round and
I told them that I wanted the infected site where the
hickman had been opened and drained. And the Doc
agreed with me (Yeah!!!!) and ordered a surgical
consult. When the lady came to do the pic line
(another type of central line which goes in a vein in
me arm and is threaded up to my heart), I told her
that it didn't seem like a good idea to me to put
another central line in while I was still spiking such
high fevers. She said that was reasonable, and went
out and talked to the doctor and he agreed. That is
why the transplant was postponed (although they were
considering postponing it the day before because of
the fevers. Apparently they will not transfuse the
stem cells through anything other than a central line.
The surgical consult came and assessed my infection.
She was a very nice chief resident and was perfectly
happy to agree to cutting me open. She did insist on
a transfusion of platelets first (mine were down to 20
thousand which is dangerous). She came back with a
first year resident who actually did the job--as she
was supervising, I was ok with that. I told him I
wanted him the make the incision big and be sure he
went down deep enough. He laughed and said that was
the first time a patient had made that request. They
did it at the bedside with just lidocaine to numb it.
The area is located just beneath my collarbone. While
he was doing it the chief resident said, "Be careful
the lung is just under there." One of the nurses said
that he had told her he was scrapingon my rib. I am
so grateful to them, though. They packed it, and will
be back to look at it in the morning. Since then my
temp han't even reached 101. I am not as nauseous.
In fact I am even a little hungry. My nurse just
brought me a bagel--pretty cool, huh.
Aside from my stupid hemmorhoid (which I think is
thrombosed and they won't lance) and a little
diarrhea, I am actually feeling ok --pretty good--at
the moment. My sense of taste has changed with
thechemo. The nurse said it can take over a year for
it to go back to normal.
So tomorrow I will get the pic line and recieve
Peter's cells. He was an overachiever as a donor.
They got 6 million stem cells from him and will only
be using 4 million for me. We will keep the others in
case we need them in the future( God Forbid). Maybe
if I get farenough out and am well we could see if
some kid who needs cells is a match. They do it on
the basis of weight. If you give too many cells, then
you can get more graft vs host disease.
By the way I had my first music therapy session
yesterday, which I really enjoyed. And Art read to me
tonight, the kids were there as well. It was very
nice. Art--you spell dying with a y.
Love to all and Thanks to everyone,
Wendy
Mon, 22 Sep 2003 15:15:47 -0700 (PDT)
Hi folks,
The last few days have been rough. the first day of
cytoxan wasn't too bad. However, yesterday I threw up
all day --couldn't keep anything down. Today I also
haven't been able to keep anything down, but I am
hopeful about dinner--if it ever arrives. My central
line got infected and I was running fevers of up to
104 F. Fortunately, they pulled it today. My neck
has been less stiff since then and my fever is down.
I have a peripheral IV now and they will put a pick
line in tomorrow. That is another kind of central
line. Then I will get Peter's cells. He has been
having a rough time with the pain from the neupogen.
But they gave him percocet and I guess that helped.
Thanks to everyone who has sent cards, e-mails and has
offered help. It is very much appreciated. I can't
wait till this is over.
Love to all,
Wendy
Fri, 19 Sep 2003 19:01:53 -0700 (PDT)
Hi Folks,
As you know, I will be admitted tomorrow between 8-9
am. They do have a bed for me. They were talking
about whether they would have to move someone off the
floor to make room for me. But it appears that a
gentleman was able to go home today. I plan to stop
on the way and pick up some Crispie Cream donuts. The
way to any good nurse's heart is through her stomach.
I brought a veggie tray in for the nurse in the IPOP
today.
I finished the 4th dose of busulfan today. Slightly
more nausa than before, but not too bad. It is a sort
of constant ache mid-abdomen. They gave me a script
for 60 phenergan tablets at the beginning of the
week. So far I have used 2. Tomorrow is the cytoxan.
Because that can hurt my kidney and bladder, they give
me a lot of IV hydration (water) first, as well as a
special med to try to protect them. All I can say is
THANK-GOD for Zofran (the anti-nausa medicine). On
the first day of busulfan and today, I had the maximum
allowable amount of Zofran in a day, and I am still a
little nauseous--I can't/don't want to imagine what it
would be like without it.
Peter came and got his first shot of neupogen today.
I was wrong, it is only about $1000 per shot. He will
get 4 shots, one per day, and then donate. He is
experiencing some bone aching, which is a common side
effect. He didn't mention it to me, but Dad told me
when I talked to him.
Peter and I went out to Don Paoblos for lunch/dinner.
It was nice to spend time with him away from the rest
of my family. We actually had a chance to talk a
little. I haven't had much opportunity to talk with
Peter since we used to go camping together before he
got married.
Well, I am not particularily excited about going in
tomorrow. Knowing I won't be able to go outside for
almost a month is a major drag.
Take Care All,
Wendy
19 Sep 2003 16:05:37
Date: 19 Sep 2003 13:05:37 -0700
Wendy is being admitted tomorrow, tentatively at 9:00. Half an hour
ago I entrusted to the USPS two ponytails of the most beautiful
honeyblond hair God ever put on a head. 10 Inches and 14 inches. They are
going to Locks of Love which will use it to make wigs for children who have
medical conditions that involve hair loss.
As long as I am writing, if anyone is interested, I'm going to set up a
meeting with counselors at Gilda's Club to help me figure out what kind
of help I need and who and when it will be. Give me a general idea
when you are available and I'll try to set up a meeting for the best
possible time.
Until that happens, my best estimate is that we could use assistance
with dinners and cleaning. At some point maybe dog sitting and rides for
children to or from wherever, riding lessons, the hospital, who knows
where else.
I don't want to take advantage of anyone, but I can't do it on my own,
that's for sure. My brother and his wife are going to help us clean
the house if we can find a good time, but keeping house is not one of my
gifts. I can do the work, but I have trouble seeing it, sort of. And
as of tomorrow it is a matter of life and death.
Art Ames
Thu, 18 Sep 2003 19:47:49 -0700 (PDT)
Hi Folks,
Well, I feel better today. It seems like the fuzzy
headed stuff was probably due to too much dilantin (a
medicine to prevent seizures which , apparently, the
busulfan-chemo- can cause). So we fixed that and I
feel better. Also they lowered my chemo dose, because
I don't clear it fast enough (this one clears through
the liver). Aside from some mild and persistant
nausa, nothing really bad. Except--they didn't tell
me that the chemo causes constipation. For someone
whose problems usually run in the other direction,
this was quite a shocker. The good news, I guess, is
that the mucositis should fix this. Mucositis is
where I am expected to get mouth sores, throat sores,
and on down the GI (gastro-intestinal, or digestive)
tract. The end result of this is difficulty eating,
and swallowing, as well as abdominal pain and
diarrhea, and sores down below. Sounds like fun, huh?
This happens because my white blood cell count will
be so low (it actually gets to 0 and stays there until
Peter's cells engraft and start making cells). That
takes on average 2-3 weeks.
Weirdly, my counts were actually higher today than
they were yesterday. The nurse said there can be a
lot of fluctuation. I am planning admission on
Saturday--not sure of the time yet.
Peter, my brother, comes in tomorrow to start the
neupogen shots to stimulate his bone marrow to make
more stem cells. These cells then get pushed out into
the blood because of crowding in the marrow, and they
skim the cells out of the blood. He will get 4
shots--one a day (they are very expensive--I will
double check, but I think they are at least $5,000 per
shot). On tuesday they will remove stem cells from
his blood--it is a lot like how you donate platelets.
Once they get the cells from him, they bring them over
and give them to me. It is like a transfusion.
Then we wait and see and hope nothing too bad happens.
It is quite an eye opener sitting in the IPOP
(inpatient/outpatient) every day. So many people with
sad stories and many with literally little or no hope,
as they have exhausted all of their options--I
actually feel a little guilty for having a potentially
curable disease.
In the horse news--Art and I went and saw the movie
Seabiscuit tonight. It was great, I highly recommend
it. I also read the book, which was also great. Ben
had a riding lesson last night. He said that they
worked on turn on the forehand. Apparently Teddy's
leg is better (Thank God--there is only so much I can
worry about!). Ben went for a trail ride tonight. I
have not been near a horse since Sunday, it is like
physical withdrawal. I guess I can survive it.
We got new tires on our two smaller cars. The kids
still haven't figured out how to clean--oh well!
Take Care All,
Wendy
September 10, 2003
Hi everyone,
Well, to make a long story short:
My peri- urethral abcess (peri means near to, urethra
is the tube you pee out of, abcess is an area of
infection) is getting better. I have been on 2 days
of IV antibiotics and it is smaller. Today my GYN
drained about 1 cc of pus out of it and it is even
smaller. He was all set to bx it, as my transplant
doctor was worried that it might be leukemia cells
invading my skin. But as he got pus when he tried
draining it, the biopsy was not necessary. I am
delighted that he got pus and that it is getting
better. I plan to continue the antibiotics until it
is gone. The transplant should proceed on schedule.
The transplant doctor says it would be ok to go ahead
even if the abcess was still there--but I think it
will be gone by then. We will be culturing the pus
for everything, including fungus. My last abcess was
staph aureus (the germ which caused it). My bone
marrow bx is back and there were no cancer cells in
the marrow (no excess blasts--blast count under
5%)--Yippee!!!!! Hopefully, my next bone marrow
biopsy will show all male cells--my brother's. This
would mean that the transplant was a success.
On the horse front: Ben and I went for a trail ride
tonight, and we plan to do a hunter pace on Saturday
and go Fox Hunting on Sunday. I am not sure how the
horse I ride will like fox hunting as we have to stay
in the back of the pack and he likes to be in front,
but we can stop at any time we would like.
Thank-you everyone for all of your encouraging notes
and comments and expressions of support. It means a
lot to me. Keep praying and sending positive energy.
Be Well--(I am trying to)
Wendy
August28, 2003
Hi Everyone,
Well, today I finished my pre-admission testing. A
week ago I had my CT scan of my chest. Today I had
pulmonary function tests (breathing into tubes to test
how well my lungs work), a MUGA scan (they inject a
radioisotope into my blood stream and then watch how
my heart works--just had to lay still for 2 ten minute
sessions), a chest X-ray, an EKG, lots of blood work,
and another bone marrow biopsy. This one wasn't very
painful. The Nurse Practioner who did it was really
good and the nurse gave me a massage through the whole
thing--almost made it worth having the biopsy. I met
with the doctor again and signed consents for the
transplant. It is great--every third line says "this
could result in death". Everyone was great and I
actually am starting to feel a little positive about
this. My brother, Peter, also went in for his testing
today--he only had to do the blood work, EKG, chest
X-ray, and physical exam. He gave me a hug and made
me feel safe. It is a pretty amazing thing to do for
someone.
I will go in on 9/15/03 to have the central line
placed. This is a long standing IV that goes into the
biggest vein in my body, close to my heart. This way
they can give me drugs and draw blood without having
to repeatedly stick me. Then I go home and come back
the next day at 4:30 am (yes, AM) to get my first dose
of Busulfan (the first of the two chemotherapy drugs).
I am going to do the Busulfan as an outpatient. The
first day I will be at the hospital 12 hours, the next
3 days for 4 hours each day. I will be admitted on
the last day of Busulfan and then do two days of
Cytoxan (the second chemo drug--which, I guess, is
worse than the first). Then one day of rest and then
I get Peter's cells. It sounds like about the time I
get Peter's cells is about when I can expect to start
getting sick. It takes two or three weeks for the
cells to engraft (start working) and that is the time
I will be sickest. Discharge home is usually about 3
weeks after the infusion of Peter's cells.
Now on to the horse stuff update.
Last weekend we (the kids, the horse, and I) went to a
horse trials (event/show) in Ohio. This is the
farthest that I has ever trailered. So that in and of
itself was an accomplishment. I discovered that my
van's speedometer must be off about 10 mph, as I was
occasionally passing people on I-90 even though the
dial said I was only going 55. The van did a fine job
of pulling the trailer and Bubba (the horse) traveled
pretty well.
A horse trial has 3 parts or phases, and what counts
is how you do on all 3 phases. The phases are
dressage (sort of like dancing on horse back--but at
my level, very basic), X country (which is jumping
over a course of solid obstacles out in the open at a
certain speed) and stadium (which is jumping jumps
which will fall down in a ring in a certain order--it
is also timed). Well, I was signed up to do Novice
and the maximum height of those fences is 2'11" , but
when I walked the X-country course, a lot of it looked
scary to me. So with my trainer's encouragement, I
dropped down a level to beginner novice. After the
dressage phase I was in 5th, after the X-country phase
(clear time and no jumping faults), I was in second.
I was pretty proud of myself and really didn't think
we would have any problems with the stadium course.
We didn't have any problems with the first half of the
course. However, after the 5th fence (there were 10
fences), I thought is sounded like he was loosing a
shoe and I started thinking about whether I should
pull him up and I stopped thinking about riding. We
jumped the 6th fence on autopilot. Unfortunately, I
let him get more and more stretched out and when the
7th fence came up, I leaned too far forward, and poor
Bubba didn't know what to do and he ran through the
fence, tripped, and fell on his face. I was ejected
and immediately got to my feet--swearing at myself. I
got up so fast I don't even remember doing it. Nathan
said I just popped right up. Poor Nathan, I only seem
to fall off when he is around. I was fine except for
a few bruises. Bubba ran out of the arena--resulting
in our elimination. He was fine except for a cut
lip--and his shoes were all FINE. Take home
lesson--ALWAYS RIDE THE HORSE AGGRESSIVELY--don't stop
paying attention for any reason, it is much safer.
(sorry for those of you who thought the lesson should
be stop riding or stop jumping--those are incorrect
choices) Someone gave me a leg up in the warm up area
(I had never had anyone give me a leg up before--it is
cool to weigh little enough for that to be possible),
and we went and jumped the warm-up fences again--it
was fine. I am so mad at myself for blowing the
ribbon and unnecessarily hurting us both. Oh,
well--the rest of the event went really well for us (
except for the two stupid mistakes I made in the
dressage test). I have one more event 9/6&7. I hope
to be able to finish on my dressage score--ie not make
any jumping mistakes.
Ben and I went to a hunter pace yesterday. We came in
third in our division. Unfortunately, Ben fell off
once and his horse had a few refusals. Bubba and I
weren't jumping our best because I was worried about
Ben. We have one more to do--and I think we will have
Ben go over the jumps first--it will probably work
better.
I will keep you all posted--sorry it was so long.
Wendy
August 2, 2003
Hi Folks,
I have heard from my insurance that they are approving
the transplant. In theory, this means that they will
pay for it. Of course, they always put in language
saying that in certain circumstances they may choose
not to pay for it--but basically it is approved and it
is a go.
Pre-admission testing is scheduled for 8/28. I will
be having pulmonary function tests, a MUGA (checks out
the heart), a CT scan, another bone marrow biopsy, and
a physical, plus lots of blood work. My brother will
also be having is testing that day.
If anyone who is on this list would like to be
removed--please contact me and let me know. As the
transplant proceeds, I will probably be doing more
frequent updates. So I don't want to drive anyone
crazy who does not wish to receive them.
I will let you all know if there is anything else that
comes up. So far I continue to hold steady.
Take care,
Wendy
July 26, 2003
Hi Everyone,
Well, it is official. I will be admitted for my
transplant 9/15/03. My brother will be my donor--God
bless him. My pre-admission testing will be 8/28/03.
We will be using Busulfan and Cytoxan for chemo.
The doctor said that the mortality rate for the first
100 days is 10%. She said that the long term
mortality rate is about 50%, with most of that
occuring in the first year. If I get to one year
disease free and well, she said I will have about a
90% chance of a cure. She is optimistic that I will do
well. I will be out of work 6-12 months minimum. She
said that without the transplant I have a life
expectancy of about 2-3 years, but it is hard to say
for sure. She said I would do better with the
transplant the healthier I am.
On the horse front--I am having a great time. Bubba
(the horse I am riding) and I have done a bunch of
X-country schoolings (practicing jumping X-country
jumps). We rode in a jumper derby (X-country and
Stadium jumps) and came in second in both of our
classes. We are going to Ohio for an event 8/23-24.
I will be riding at novice (jumps with a max height of
2'11"). I also plan to ride in a local event 9/6&7,
and a hunter pace 9/14.
Ben is also doing well with riding and is preparing
for a pony club rally (like a show). Nathan likes to
help around the barn--and loves the fact that we moved
to a barn with many adolescent girls (boy, did his
interest in horses pick up!).
Love to all--I appreciate all of the prayers and
positive thoughts.
Wendy
June 12, 2003
Hi folks,
For those of you who don't know--
I completed my very first horse trial last week. I
did ok in the dressage and had no jumping faults in
cross country or stadium, but I did have time faults.
This was ok as I was not paying attention to the
time--intentionally. However, if I had not had the
time faults, I would had gotten a ribbon. It was a
great time, and riding cross country was an absolute
blast. I am so glad that I was able to experience it.
Ben's Pony Club just finished their Games Rally. This
was our team's first time doing this. They did great
(they have practiced a lot). They got first place in
horse management and second place overall. Ben is
very excited, and I think all of his teammates are as
well.
It is looking like I will be proceeding with my bone
marrow transplant in mid-September. More about that
when I know more.
Wendy Ames
June 9, 2003
Dear everyone,
Sorry if this is a repeat for some of you. This
dateline story is about a man who had a bone marrow
transplant for Acute Lymphocytic Leukemia--which is
very similiar to the Acute Myleocytic Leukemia which I
am likely to develop if I do not have the transplant
(except that gleevec doesn't work for AML). The
survival rate for the transplant drops drastically if
my disease transforms to the leukemia. I am sending
this to you all as several folks have asked me what is
involved.
Thanks,
Wendy
June 9, 2003
Dear everyone,
Sorry if this is a repeat for some of you. This
dateline story is about a man who had a bone marrow
transplant for Acute Lymphocytic Leukemia--which is
very similiar to the Acute Myleocytic Leukemia which I
am likely to develop if I do not have the transplant
(except that gleevec doesn't work for AML). The
survival rate for the transplant drops drastically if
my disease transforms to the leukemia. I am sending
this to you all as several folks have asked me what is
involved.
Thanks,
Wendy
June 3, 2003
Dear everyone,
Sorry if this is a repeat for some of you. This
dateline story is about a man who had a bone marrow
transplant for Acute Lymphocytic Leukemia--which is
very similiar to the Acute Myleocytic Leukemia which I
am likely to develop if I do not have the transplant
(except that gleevec doesn't work for AML). The
survival rate for the transplant drops drastically if
my disease transforms to the leukemia. I am sending
this to you all as several folks have asked me what is
involved.
Thanks,
Wendy
May 3, 2003
Hi Folks,
Well, as some of you know, there have been some new
developments in my health status. While the pathology
of my most recent bone marrow biopsy looked stable,
the Chromosomal studies showed a new mutation on the
3rd chromosome in some of the cells in addition to the
extra 8th chromosome (so it is trisomy 8 with 3q).
This means that the marrow is becoming unstable, which
increases the risk of conversion to acute leukemia.
In addition, I was recently hospitalized for a day and
a half for IV antibiotics to treat an abcess that was
failing to respond to drainage and oral antibiotics.
Now my counts are the lowest they have ever been. My
ANC is 300. Normal is above 2000. This makes me
severly neutropenic. However, this is most likely a
response to my marrow trying to fight off the
infection. The day I was admitted my ANC was 2,200,
so I was trying to fight off the infection--I just
wasn't doing a great job of it.
Well, anyway--I e-mailed my bone marrow transplant
doctor and asked her about the new mutation and she
told me to come in for a visit. I saw her today. She
is recommending that we do the transplant in the next
six months, although she is willing to wait until
after X-mas if I don't develop blasts (leukemia cells)
in my marrow, or have a lot of serious infections. So
the plan is to do another biopsy in August or
September--if that is ok then we can wait a little
bit.
She is planning on using my brother as a donor if he
is CMV neg (that is a virus which can cause problem
after transplant).
For those of you who don't know:
I will be hospitalized for about a month, I will be
out of work for 6-12+ months. There is a 30-50%
mortality rate in the first year--or another way to
look at it--a 50-70% one year survival rate. Most of
the mortalitly occurs in the first 100 days--so if you
get past that then things are looking up. There are
lots of other possible complications post transplant,
but we will hope for smooth sailing. I can't receive
plants or flowers while in the hospital--ballons and
cards are ok. I will be very sick for quite a while,
and will be unable to go to crowded public places or
be around dust and dirt--no horseback riding. I will
let you all know the date of admission when the time
arrives.
Art is interviewing for a job with the company they
are outsourcing his department to. Please pray that
he gets it--I don't know how we can do this with both
of us out of work.
On the bright side--my riding instructor thinks that I
can compete this summer and has recommended that I try
to get into an event which is the first weekend in
June. I am very excited about this--I have worked
long and hard to get to this point. I am just sad
that I will have to stop riding because of the
transplant this fall. Oh well.
Thanks you all for your support, caring, thoughts and
prayers. I can't tell you how much I appreciate it.
Love,
Wendy
April 3, 2003
Hi everyone,
I had a doctor's visit the first week of April. At
that visit my white blood cell count and my test for
anemia, my hematocrit/hemoglobin, had dropped. My
total WBC count was 2.8, which is low, and my ANC
(absolute neutrophil count) was quite low at 600
(sever neutopenia is under 500, moderate neutropenia
is 500-1500, mild neutropenia is 1500-2500, above 2500
is normal). My hematocrit was 30% and my hemaglobin
was 10. A normal hematocrit is above 36%. When I
used to work in the OR the anethesia department
wouldn't approve surgery for someone if their crit was
below 30%, they insisted that they be transfused
first. That may have changed by now, but it gives you
an idea of what the numbers mean.
I have been mildly symptomatic, in that I frequently
get dizzy when I stand up. Of course, I used to do
that sometimes before I had any medical problems. My
pulse is good-- in the 60's. I have had a few colds,
but have not gotten seriously ill.
My doctor mentioned possibly starting me on epogen if
the crit drops any more. This is a medicine which
stimulates the bone marrow to make more red blood
cells. It only works in about 25% of the people who
have what I have, but my erythropoiten level is such
that it looks as though it has a chance of working.
It is a very expensive drug, and I would want to wait
until I am a little more symptomatic before using it.
It could delay my needing transfusions (and the bone
marrow transplant) for a while if it worked.
I also had another bone marrow biopsy, and that
appears to be stable. No evidence of leukemia--yeah!!
We need to wait a few more weeks to hear if there are
any new mutations.
Art will definately be out of a job as of 6/03. So I
am stressing a little(lot).
Hope all is well with you.
Wendy Ames
March 2002
Hi Folks,
I had my third bone marrow biopsy last week. All mynews is good. The biopsy showed no change from theprevious two biopsies. The pathologist said thatthere is no evidence of progression, but there is noevidence of improvement either. All in all the marrowseems to be quite stable. Unfortunately, my doctorwas unable to get a marrow aspirate (despite trying 3times in different spots--same hip), he did get twobone samples. We aren't sure why he couldn't get theaspirate (which is like sucking liquid marrow out ofthe bone). I think it is because of the myelofibrosis(fibers in the marrow, which sort of fill up themarrow space leaving smaller pockets of marrow). Because we couldn't get the aspirate, we were unableto test the chromosomes. So the assumption is thatthe trisomy 8 remains the only mutation.By the way, this biopsy was much LESS painful than theprevious one. I don't know if that is because he dida better job with the lidocaine, or spent more timewith positioning, or because I lost about 18#, or Idid a better job relaxing, but I am very glad that itwas easier.My blood counts were better. My white blood cellswere 3.8 (normal is above 4.8 at my lab), my ANC(absolute neutrophil count-- a measure of infectionfighting capability) was back up to 1600 (above 2000is normal), my hematocrit is 34% (normal is above37%), my hemoglobin is 11.3 (normal is above 12), andmy platelets were 79,000 (normal above 140,000--theseare what make blood clot). So I continue to be mildlypancytopenic--all of my blood lines are mildlydepressed. However, according to the pathologist,only the platelets look abnormal microscopically--andthat is pretty mild. There are a few rare abnormalred blood cells, but not many. The white cells lookvery normal with good maturation and there is noincrease in blasts (which are immature WBC's which canbe associated with leukemia). So far so good. If everything continues to staystable, I will avoid boring you will further updates. If anything changes, I will let you know. I amguardedly optimistic that I will remain stable for along time.Thank you all for your concern, good wishes andprayers.Love,Wendy
February 2002
Hi Folks,
I saw my heme/onc the day before Valentine's Day.
Here is the scoop. My white blood cells, especially
the neutrophils, have taken a little dip. I had two
blood counts done within a week and a half and the one
showed WBC's of 2.7 and an ANC ('absolute neutrophil
count'--infection fighting cells) of 600--less than
500 is considered very dangerous. The repeat CBC
showed a WBC of 3.3 and an ANC of 700. My ANC has
dipped before and recovered, so we are hopeful that is
what is going to happen.
I asked my doctor about prophylaxtic antibiotics or
antifungals, and he said that they prefer not to use
them as it just makes it harder to treat an infection
when you get it.
I haven't had any serious infections. Just little
things like swimmer's ear, ear infections, fungal
infection on my hands, etc. He said I was an example
of how a person can be fairly well with very few
neutrophils.
My platelets were 60,000, but my bruising isn't too
bad. (Normal is above 150,000) My hemoglobin was
about 11.4, and my crit about 33% (normal is above
37%). So I am not very anemic and I have no symptoms
of anemia.
I asked my doc about filtered and irradiated blood,
should I require transfusions. He said that of course
we would use filtered and irradiated blood, but that
if I started needing transfusions we would move
immediately to transplant. I agree wholeheartedly
with this plan.
We are going to repeat the CBC in two weeks and do
another bone marrow biopsy on 3/6/02. It will be good
to have the information from the biopsy, but I am not
looking forward to the procedure.
My oldest son, Nathan, had a bone spur removed from
his leg. He either had a reaction to the sutures or a
slight wound infection--but he is now on antibiotics
and it looks much better (and feels better too). Just
after his surgery, he got the flu and was miserable
for about a week. I saw him only rarely during that
time as I was afraid of getting sick. Fortunately, I
had the flu shot this year--and I think that it did
help. Everyone now seems more or less on the mend.
Thank God.
I hope you are all well--thanks for all of your
support.
Love,
Wendy
October 2001
Hi Everyone,
As some of you know, I had my second bone marrow
biopsy 9/5/01. Unfortunately, it hurt more than the
first one. Fortunately, nothing has really changed in
my marrrow. I still have myelofibrosis. This is
exactly what it sounds like--fibrose tissue in the
bone marrow space. Eventually, it can take over so
much space in the marrow that there isn't room for the
marrow, but I am not close to that yet. What it does
now is sort of suck the cells into it making it hard
for the pathologist to see many cells. It may also
make it hard for cells to engraft during a bone marrow
transplant.
I don't have any more blasts--still under 5%, which is
considered normal. Blasts are immature white blood
cells which can be cancerous. I have reduced numbers
of WBC's, but they are normal and mature. I have
reduced numbers of red blood cells and platelets, but
both of these cell lines have abnormal features.
I continue to have trisomy 8, an extra 8th chromosome,
but no new mutations. I even had a few normal cells
this time--this is of no clinical significance, but
makes me feel better anyway.
At my Doctors appointment yesterday my blood counts
were the lowest yet. WBC 3.4, ANC 700 (moderate
neutropenia), HGB 10.9, Crit 31%, platelets 55,000.
My Doctor thinks that my marrow may be slow recovering
from the strep throat I had recently. I have been
getting more annoying little infections--bladder,
yeast, etc, but in general I feel great.
So for now we wait. The plan is to do bone marrow
biopsies every 6 months, and do a bone marrow
transplant when I crash. Therefore, I am working on
trying to live in denial. Who knows how long this
will take--I hate not being able to plan and/or
control things.
We took all the carpet out of the house to cut down on
dust and mold risk. I plan to have the shower stall
downstairs replaced for the same reason.
I hope this finds you all well.
Love,
Wendy Ames
August 2001 6:53 AM CDT
Hi Everyone,
So far so good. My counts are stable--in fact they
have improved slightly (although probably not
statistically significant). My lowest White Blood
Cell count was 2.9, with neutrophils of 0.9, my most
recent one was 3.8, with neutrophils of 1.3. My
lowest platelets were 56 and my most recent count was
90. I remain mildly anemic, but definately not
symptomatic! So-- yeah!
I am scheduled to have another bone marrow biopsy in
September. Mostly we will be looking for
blasts(cancer cells) and to make sure there are no new
mutations. I plan to schedule an appointment with the
transplant doctor after that. I have tons more
questions. She has been great about answering my
e-mails.
Now for the fun stuff. The Grand Canyon was
great!!!!!
Beyond description. We took a ton of photo's. We
flew into Las Vegas--which is like a hugh
carnival--great fun. We stayed at the Treasure
Island. They have a battle between a British
Man-O-War and a Pirate ship every 90 minutes. The
British ship sinks--lots of fire and fireworks. Great
show--and free. We also went to the Star Trek
Experience--it was cool.
The next day was the Hoover Dam. Very impressive.
Then through the desert to The Grand Canyon. Such
different landscape than here in the east. Barren
isn't the right word, but it is lacking in softness.
The Canyon--so elemental, majestic. Unlike in the
east, it is not shrouded in vegetation, but bare for
the world to see. Primative, lovely, ever changing,
incredible. Mere words fail to do it justice. I
teared up when I first saw it--until Ben started
yelling at Nathan to video tape the squirrels. Well,
nothing is perfect. The next day we walked 2.5 miles
along the southern rim and all but Nathan took an
airplane ride (6 seat Cessena) over the Canyon. Most
impressive. (This was the same day that the helicopter
carrying the family from New York crashed--we were
thinking about doing a copter--glad we chose the
plane.) Then back to the Canyon to ride the shuttles
and try to see as much as we could during the
remaining day. Thunder storm with lightening on the
Canyon rim--double rainbow down into the
Canyon--soaked to the skin. It was wonderful.
The following morning we drove along the eastern rim
and then through Navajo country (wanted $800 for a
smallish blanket--didn't buy it).
We followed the Echo Cliffs to ?Lake Powell?, Boy are
they beautiful--but like everything, stark. How do
the Navajo survive there? There is no water--very
dry.
Then we went up north into Utah--lovely country--many
movies filmed there. Red cliffs, mountains etc--so
striking. Then it gives way to yellow.
We went to Bryce Canyon National Park. You go through
Red Canyon to get there--such deep red in the rocks,
such unusual shapes. The rocks in the canyon at Bryce
are weathered into shapes like men standing at
attention in rows. All in this candy colored
orange/rose/pink topped with cream-white. Striking.
Then on to Zion National park. It looks like someone
took liquid red and yellow rock on a paint bush and
swirled it around--just gorgeous. You are at the
bottom of a canyon and so look up at cliff/mountains.
Sooo big. I have never seen anything like it. The
shapes and the patterns in the rock, just amazing.
Then back to Las Vegas--12 hours of driving that day.
When we got back to Vegas, we went to the Bellergio
for dinner--buffet.
Unbelievable--roast buffalo, roast leg of wild boar,
rabbit and potato canapes, chicken wellington, sushi,
crab legs, at least 4 different fish, prime rib,
turkey, various sauces to go with each of the meats,
asparagus ravioli, wonderful salads, several soups,
fresh fruit, amazing desserts, a whole chinese
section, super veggies and potatoes--definately worth
the $24 per person. And yes, there are cheaper
buffets in Las Vegas, but I had heard this was the
best and it was worth it. (Thank-you, Dad, for the
trip!)
We flew out the next day--Sunday and didn't get home
until around midnight. I went to work on Monday and
am very tired. Lucky for me, I took off this
Wednesday-Friday to go to a Horse Show I wanted to
see. All driving--carriages, buggies etc.
So, that's the news from Lake Wobegone, where all the
men are strong, the women are good looking and the
children are above average.(to steal a line from
Garrison Keiller).
Love,
Wendy
Friday, September 26, 2003 4:03 AM CDT
Hi!
This is for Wendy. A brief history to make this complete:
Wendy had a physical a couple of years ago which included a CBC. The results showed anemia accross all 3 cell types. Further tests were performed including a bone marrow biopsy.
The biopsy showed a mutation in the DNA of her bone marrow, specifically trisomy 8. The diagnosis was myelodysplastic syndrome. If not treated, MDS leads to a form of leukemia that is very difficult to treat. The only known treatment that cures MDS is a bone marrow transplant. Bone marrow transplants are a very risky proposition in and of themselves.
That makes timing the challenge: don't do the transplant until the risk is justified, but before conversion to Leukemia.
Her Oncologist, Dr. Boros, kept tabs on her for two years doing regular blood tests and regular, but less frequent, bone marrow biopsies.
In late April 2003, she started experiencing more symptoms of her anemia. Because her white blood cells were in short supply, she was getting frequent infections that were more serious thatn they should have been. At about the same time, a new mutation was found in her bone marrow DNA.
Her oncologist and transplant doctor, Jane Liesveld, both agreed it was time to go ahead with the transplant.
Both of her siblings had been tested for HLA compatability and matched Wendy 6 for 6. By a minor miracle, Wendy is still negative for a virus most people have, especially health care providers, CMV. Because her sister has had children, she has extra antibodies in her system. That causes a slightly greater risk, so her brother was tapped to be the stem cell donor. He was also CMV negative.
She had a central line put in, started chemotherapy on an outpatient basis, was admitted to the BMT unit, had the central line pulled because it became infected, had a PICC line put in and the stem cells infused.
As of today, 9/26/03, Day +2, her counts have bottomed out, she is nauseous and has diarrea. Her family loves and misses her.
Friday, September 26, 2003 3:54 AM CDT
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