:: Leslie's Updates > February 2003 - May 2003: BMT Prep to Going Home
5/8/03
Woke up singing Ozzy's "Mama, I'm comin' home"
5/7/03
Cool news of the day: My immune system is now 100% my sister Heather. None of me and my old leukemia self left! It grafted!
5/6/03
Got me some real good news today -- going home on Friday!!!! That is if the ugly GVHD monster doesn't rear its head. They are tapering me off the prednisone with each dose. This is a steroid that works against the GVHD. So, if nothing flares up as they reduce it, I can go. Tapering the steroid is a good thing in general too. I have been experiencing blurry vision and bruising because of it. Both should clear up as the steroids go down. Every drug I am taking is now orally. They actually disconnected me from the IV this morning. It feels really weird not to be attached to anything! Plus, I kinda used it as a walker. I am still pretty wobbly when I am on the move. I have to be pretty careful not to fall. My platelet count is still pretty low, having tranfusions just about every other day. We have started packing things up slowly and taking a few things home every night. It's amazing how much stuff I have collected here!
5/3/03
Things are still going well. They are trying to move me to oral meds from IV in anticipation of going home. If there are no setbacks I am still scheduled to go home by mid next week. Still getting platelet transfusions a lot - just can't get that count to stabilize. Did three laps last night. Trying to build a little muscle on these bird legs.
5/1/03
It's May - Yowza!! It was brought to my attention that I forgot to mention that my Mom was here the week before my in-laws arrived. Not only was she here, but she was very helpful. Thanks Mom.
4/29/03
Drs just did rounds. Even more pleased. Dr Schuster thinks I will be released early next week - but no promises. Yeah.
4/28/03
Had to have a Bone Marrow Biopsy today. I would like to
meet the barbarian who came up with this process! They suck so bad. This was my fifth one so far,
but I know there will be more to come. Actually, the doctor who performed it was the best so far - least amount
of pain.
This is the first one since the transplant. It's going to tell
us some cool things, like what percentage of my sister I have become. I find that interesting. Oh, the dr.just
poked her head in and said that a preliminary look at the slides show NO leukemia. Cool huh? My mother-in-law
and her husband are visiting/helping out for the next two weeks. She was helpful in calming me down during
the biopsy. My brother has also been here, but he is heading home tomorrow.
Lawrence has been quite busy acquiring things to make our house sterile for when I head home(whenever
that may be). We now have HEPA
filters, ionic breezes, steam vapor cleaners and a HEPA vacuum. Isn't he the greatest!
4/27/03
I have been doing pretty well. As horrible as the administration of the nuvion was, it is working spectacularly well! My GVHD is really clearing up. The doctors are super pleased. It has however put me back in a neutropenic state with low WBCs again (more susceptible to infections). It turns out that I am the first person they have given it to here - it was developed at the Hutch. There has been a lot of monitoring of me because of it and there is no time frame at all for me to get out of the hospital. This is okay with me. I have become more emotionally centered this week. I think I have finally accepted that every BMT patient is different. I will get better when I get better. I received so much encouagement from everyone this past week...thank you, thank you,thank you!!
4/23/03
Yesterday was a VERY rough day. They gave me the experimental drug and I had a severe allergic reaction. My throat totally closed up and I couldn't breath. There was about 15 people in my room working on me and they even brought in the crash cart. They finally got me settled down but it flaired up again within the hour. I was very scared and started to wonder if I was going to make it. Well, obviously I did. I have been very exhausted all day. But the good news is that it looks like the medicine is actually working. The doctors are pretty happy with the way my skin has changed since yesterday. So, I will be here in the hospital a while longer while they monitor my progress. I am feeling a little better emotionally too. The steroids are still giving me mood swings, but I am encouraged by today's progress.
4/22/03
The GVHD is getting worse and I am not responding to standard steroid theraphy. So they are going to put me on an experimental drug called nuvion. I sure hope it works.
4/20/03
I have developed GVHD. I have a pretty bad rash all over my torso and face. The docs are trying to treat it. However, I have no idea when I am going home now. They have to have it all figured out before they let me go. This is really depressing me. I am out of pep. Pretty much ready to give up. I am trying to just get through one day at a time, but it is getting really hard.
04/17/03
Still in the hospital. Tired as all get out. They are trying to move me to oral drugs instead of IV. The goal release date is next Tuesday.
04/13/03
I have been trying to write this update since the 10th. Just have been so tired.
Still am pretty loopy because I am still on all the mouth drugs. Very tired and barely can talk!
The teeth/gums are starting to get better. I can actually swallow pills and a keep
a few bites of down. The arm swelling is practially gone too.(thank gawd!")
My WBC counts are starting to soar. The doctors are pleased. It looks like the transplant is tring to take-
Still
won't know for certain for a few more days. They are actually thinking of getting me out of here
by the end of the week.
I have to be antibiotic and transfusion free first though.
Lawrence left for his postponed Buenos Aires on the red-eye night last night.
I hope that he doesn't get too worn down or catch that SARS flu. My dad will here taking care of
things. Again I am so grateful for having family/friends
4/8/03
Hanging in there. Moving the cathether did reduce a significant amount of swelling. Did I tell you that I had to get bigger arm band, but I really should get the smaller again because it keeps falling off. But then it did bring up the whole clot thing. The doctors are kind of a watch weight sort thing. They think a lot of issues will be cleared up as my WBC rises which should in the next few days. I have having pretty high grade fevers the last few days. I am also developing rashes, which the are saying is GVHD and are happy about. Remember, I want a little GVHD not a lot. Still have the horrible mouth pain. I actually cannot swallow. This distrurbs the nurses assistant to no end. They want to know everything that goes in and out. My answer of nothing to what I ate for lunch boggles their mind,"....but i've got this form"
4/3/03
Leslie had a surgical procedure on 4/1 to remove what the docs thought was a blood clot, but turned out to be a constricted vein near the heart. They attempted to open it, but we are still waiting to find out if it was successful. This should have been a fairly routine IV angioplasty procedure, but Heather and I got quite a scare when we heard a PA announcement for the cardiac team, and white coats came running from every direction to surgery. Leslie had an atrial arrhythmia. Basically, the top chambers of the heart beat faster and out of synch with the lower. The docs stopped short of using the paddles to shock her back into rhythm, and were able to slowly get her heart under control with meds, while keeping her in the cardiac ICU overnight. Once in a while, we realize just how serious this is.
Due to the swelling, mouth/throat sores and morphine, Leslie can barely speak. So phone calls are probably not a good idea right now. Yesterday morning in the ICU, she was on additional sedatives, and I thought I heard her whisper, with her eyes barely open but looking around, "Do they let dogs in the hospital?" Then, as her eyes widened a bit, she barely squeaked out, "Did you bring her in here?" When I asked "Who?," she looked at me like I was the crazy one, and said, "Abbie." I hope she's not embarrassed by me sharing this, but I thought it was so cute that in her morphine induced state, she was missing her dog!
3/31/03
The mouth pain has been excruciating!!! I am on sooooooo much morphine. However, even with that amount of drugs, I
can barely swallow. My food intake has been practially nil- yesterday I had four teaspoons of apple sauce, and four
teaspoons of pudding trying to get some pills down.
We are still on for the catheter removal/replacement tomorrow.
Today I am wishing my sister Heather a HAPPY BIRTHDAY!! We decorated my room for her, but she's not here yet, so I hope I
didn't give away the surpise.
3/28/03
So, the final MRI report came back. There IS a clot. Right at the tip of my catheter. So I am going to have to have this catheter removed and another put in. They are going to do something with a balloon to break up the clot (I am on too much morphine for details). This is all scheduled for next Tuesday. It's not a rush, they say, because my symptoms are not worsening. And by waiting until next week, my platelet count might begin to rise on its own. Must have platelets to do surgery. If my counts don't do it by themselves, I will get a platelet transfusion right before. Not the best news, but not the worst news. I'm dealing.
3/26/03
The MRI results came back - no clot. This is good news. So it's back to the drawing board for the docs to try to figure out what is going on.
3/26/03
We are waiting for the results from the MRI. I sure do hate
MRIs - I have to have me some anti-anxiety drugs to get
in them as they are so claustrophobic! I hope that we get
something back from the results that the doctors can
work with. I am very tired of being so swollen, MY arms are
about double/triple their normal circumference and I have
three chins and largest lips you'd ever see (kinda like
collagen gone bad).
Wishing my brother John a happy birthday today.
3/25/03
My face and upper body are swollen beyond belief. My face looks like a baboon. They aren't sure what
is causing it. At first they thought it was a blood clot, but they couldn't locate one under ultrasound.
They are going to do a MRI on me today. I just hope this isn't the way I check out.
I am on mophine again for the mouth sores. It makes me sleep all the time.
3/22/03
Feeling pretty good today. Had a rough time of it the last few days, especially yesterday. Yesterday I had an allergic reaction to a platelet transfusion. They gave all kinds drugs to counteract this, so I was majorly doped up. To add to this, there was the nausea and fevers. It was just not fun.
3/18/03
The transplant went well. No immediate signs of rejection, but it is still quite awhile before we will know
if it grafted. So the waiting game begins. I have already been experiencing cabin fever and anxiety. They started giving
me some happy pills today to take the edge off. But, I have had no fevers or infections yet this trip to the hospital,
so this is good.
Here's a few pictures from yesterday:
Luck o'the Irish
Hanging of the stem cells
3/17/03
Today's the day. Transplant. I am in wonder sometimes at how I got here. This wasn't how my life was supposed to go. But, I
guess we never get to choose all the twists and turns that life will hand us. I have had a lot of anxiety this past weekend.
Will it take? Will I ever get my life back? I have been trying to take everyone's advice about taking it one day at a time,
but this weekend was really hard. I am glad I have such a support system in place, or I would have been
a bigger mess.
The transplant transfusion is scheduled to begin around 9-10 am.It should run for a few hours. The family said it will be here around 8. They started
giving me the anti-rejection drugs last night (Prograf). This is my new friend as I am told that I will be on this
drug for a looooong time.
There are many things that I am thankful for today. The first being my husband. And then all the rest of my wonderful
family. And my friends. I guess I can't leave out that fantastic, perfect donor match from Heather. The great doctors and
nurses here at the hospital. The beautiful sunrise over New York City this morning. And the fact that that I get to
celebrate St. Patty's Day from now on with a vengenance!
3/14/03
I have been quite nauseous since the chemo started, Not much fun
I say. Only one more chemo treatment today though, so
I will buck up and take it.
Haven't made much progress on the knitting. Basically have just transferred the
skein of yarn in to ball. Talent, I'd say , true talent.
Fun stuff Heather and I are doing to distract me from the nausea: rasberry flavored snowcones and dancing to the oldies. Even the nurses like the snowcones!
3/12/03
Well, yesterday started out good. Heather completed her stem cell collection in one day! No need to go back
a second day. She's such a champ, I keep telling her she's my hero. She was left kinda tired by the whole experience,but
no pain.
Also, a recreational therapist came for a visit. THey provide all these things to do. I decided to learn to knit. Something
to do to pass the time.
Then, at about 6:30,I began experience intense chest pains. They did an EKG and a chest xray and all was fine with my heart
(I did think I was having a heartattack). It turns out the pain is from the radiation. My sternum takes the first hit and they
said something about all the marrow breaking down. All I know is that this the worst pain I have ever had. A couple of shots
of morphine let me get some sleep. There is still a dull ache this morning alternating with sharp pains. What I am most neverous
about is that I still have two more sessions of radiation left. I have a feeling I am going to spend the afternoon
on morphine.
3/10/03
Hello there from my new hospital room. It is quite nice.
Freshly painted yellow and big. It has fridge,an exercise
bike and this computer,
but the DVD player has yet to materialize.
I had two radiations sessions today. They rig me up in this
Frankenstein contraption. I have stand the whole time, so
they shove bike seat right up there for support. Then they
put a bar in front of me that has a chin rest. From that
bar they put straps under my arms. And then I am velcroed in
at many places. What I am saying is that although I have
to stand, there is no way I am falling. I tired already from the
treatments. They cut down the number of days of radiation,
from four to three. This moves everything up a day, with the
transplant now scheduled for March 17 ( I will have another reason
to celebrate St.Patty's Day now.)
Heather's stem cell collection is tomorrow. She has been
achy from the Neupogen. I hope all her discomfort goes
away fast.
3/8/03
Had the catheter put in yesterday. Boy, am I sore! Feels a might bit better today, but I will continue to take it easy. Once again, I started this procedure with no drugs as they can't get an IV in my arms (veins are fried from chemo). It was until the first puncture at the base of my neck that I got some sleepy-time drugs. I have this deep breathing thing that I do to get me through these yucky things. They put the catheter on the left side of my chest this time, but higher up than the catheter I had there last year. I am going for the all time record of chest scars.
Gave Heather her first Neupogen shot yesterday too. I felt bad having to stick her. She said it burned a bit, so we are going to let today's warm up a bit (they are stored in the fridge) before I give it, maybe that will take some of the burning away.
3/6/03
Met with the radiation oncologist yesterday. Heard all about what to expect. I am still nervous about the radiation, as it is the only thing that is new - ya know, fear of the unknown. They took all kinds of measurements and fitted me for some lung shields. I guess the lungs are the only organ that can't take too much radiation. They also tatooed me! No one told me about this one. The tatoos are just little dots on my chest and back which they will use to line up the radiation. But still, tatoos! Never thought I would have them.
The doctors have been messing around with the schedule. I now go in tomorrow morning for my catheter (as an outpatient - I will be done by noon and head home after). Heather now starts her Neupogen shots tomorrow and the collection won't be until Tuesday. And I have to be at the hospital at 6 a.m. on Monday, I repeat: 6 a.m.!!! Yowza.
Got my new wig today. I like it. You be the judge. Note what is left of the bruiser under my right eye.
My Aunt Phyl had been visiting us for the last two days, but left this afternoon. She spoiled us! She was also very helpful taking me to the doctors yesterday. I had such a great time with her!
3/1/03
GOLD!!! We have a letter from the insurance company approving the transplant! You can't even believe how relieved we are. Lawrence has been working his patootie off to get this. We learned last Thursday (or I should say HE learned, as he kept the bad news from me) that the NY Pres/Cornell had failed to renew it's contract with our insurance company and so our insurance company wanted to send me to Hackensack or Philly for the transplant. Forget about the fact that I have been meeting with Dr. Schuster since last March or that NY/Cornell is a top hospital for BMTs or the fact that my transplant was scheduled to begin in less than two weeks. It was ridiculous!! The hospital realized it made a huge mistake and was saying that they would take me with or without insurance. However, the insurance company (cigna) ended up approving it at the highest levels. So I get to have my transplant with MY doctor at MY hospital. It all worked out. I LOVE MY HUSBAND!!
2/28/03
We had our appointment with Dr. Schuster yesterday. Got so much info...
I am scheduled to head back to the hospital on Monday, March 10. I will get a new catheter installed in my chest in the morning and begin my radiation later that day. I have four days of full body radiation scheduled - two twenty minutes sessions each day. Then I have two days of chemo scheduled with cytoxan. This is a new chemo agent for me. Then I get Sunday and Monday off for good behavior. The transplant is scheduled for Tuesday, March 18. This is almost a non-event I guess, as it is just like a blood transfusion, but it is pretty symbolic. A new lease on life will begin on that day! Then we wait, hoping that I don't get too much GVHD or infections and that I actually take a liking to Heather's stem cells. Most people stay in the hospital about 6 weeks.
As for Heather's part, she begins her Neupogen shots next Thursday. She is to have four days of injections. Either I or she will give them - the needle is really, really small (I had to give these shots to myself last year). They will collect her stem cells on Monday, March 10. It is about a three hour process.
My counts were really, really good yesterday. Suprisingly good. They didn't look like someone's who just went through chemo. The doctor was really pleased. So, I got the go ahead to eat ANYTHING I want - including sushi! To celebrate, we went out to a restaurant for dinner. This is the first time I had been out. It was fantastic. The other great thing I got the go ahead to do is KISS MY HUSBAND! I sure did miss smoochin' Lawrence!
The insurance mess may be solved. We are just waiting for it all in writing before we actually exhale. Thanks to all who have helped in this mess - you know who you are.
2/26/03
I have been enjoying myself at home. My stepmom Kate has been cooking us the most wonderful meals! I spend most of the day on the couch - watching tv, movies, or catching some zzzz's. I pulled out my wigs today. Yikes - are they blonde. My hair grew in so much darker than it was orginally. I don't know if I can live a blonde life again.
I received the most fantastic gift today from my mother's side of the family. Each family member made a page for an album. I cried happy tears the whole time I read it. I felt so much love.
Have received bad news on the insurance front. My dear husband has spared me most of the details while he wages this war. I am trying not to stress out (because Lawrence doesn't want me to). I am thinking positive thoughts that all will resolve itself.
Heather arrives about 10:30 tonight. I am giddy!!