Listen
to Maggie share her experience with bone marrow transplant in her
own words. (842 K .au file)
Listen
to Maggie share her experience with bone marrow transplant in her
own words. (842 K .au file)
Maggie's cancer came back. After much thought, she decided to seek a bone marrow transplant. There was much planning and preparation.
Maggie's Experience: Chemo was a foggy time
I don't even remember a lot about those four days. It was not a pleasant time. They used three chemotherapy drugs and you get 10-20 times the normal dose, and it's a continuous dose for four days. I was absolutely terrified of this high dose chemotherapy, very frightened of, you know, nausea, on vomiting. They have drugs to control those side effects that were much stronger than anything I had been given going through standard chemotherapy. One of the drugs, not only does it control the nausea and vomiting, but it makes you very sleepy. And I was on that almost continuously. It was a foggy time.
Maggie's Experience: The transplant is exciting
They give your body three days to rest and on the third day, you
are transplanted. This is very exciting time. They are literally
giving you your life back. They bring you to the brink and then they
save you by giving you back your own stem cells that they froze. They
brought all these little packets of frozen cells into the room, and
these are thawed out in the room, and the steam rises up. It's all
very mystical. They go into your body through the IV that you're
already hooked up to. These stem cells, it's like they have little
magnets and they know to go right to the bone marrow. They tell you
it could be 10-15 days before you start showing any cells counts.
During that time you have no way to fight infection. You can't even
fight viruses or any bacteria that already exist in your body. So,
they expect you to run fevers and get infections. Most of the time,
those can be controlled with antibiotics.
Maggie's Experience: I hated being cooped up
The most difficult thing was being cooped up in the hospital room. I had about two or three days where I felt like I was living in a nightmare and I couldn't get out. I had books, I had books on tape, I had cross-stitch, and I could not concentrate on anything. For somebody who is used to being active and used to being in control of what they're going to do, it was very difficult. And, I became very depressed. I reached a point where they told me that I could go outside of the hospital and walk around the courtyard. So I would push my IV pole around this courtyard. I would set so many laps for myself and I would do a few and then sit, then do a few more and sit. And then I would come back and I would put on music and I forced myself to do some cross-stitch. When I got tired of doing that, I forced myself to read a book. And when that didn't work, I would go back out and walk. And once they let me out of the hospital, then I seemed to be able to settle into a routine.
Maggie's Experience: I finally came home
When my cells started to come back in, everybody was very excited.
But you have to reach a certain level before they'll let you go home.
So it was all arranged that I was going to on Saturday morning, and
Friday night I spiked a temperature, high enough that they would not
let me go. So they started doing more tests. For about three or fours
days I continued to run a fever that would up and down, and up and
down. So finally the doctor came back and he said we think that
temperature could be caused by some type of a viral infection that
just needs to run its course, and how would you like to go home
tonight? I had always thought that I would leave in the middle of the
day, in bright sunshine, feeling on top of the world, and instead I
left at 7:00 at night feeling sick and worried to death that they
weren't doing the right thing by letting me out. Once I got home, my
temperature went down to normal and it never went back up again. It
was the hospital that was making me sick.
Maggie's Experience: You look at the future differently
When you're facing a bone marrow transplant, you don't have a lot of time to think about will it work, and what happens after. For the first couple of weeks that I was out of the hospital, I was very, very frightened about the future. There isn't anything else we can do now. I've had the ultimate treatment for this. You're not prepared for those feelings. Now, I'm look at the future maybe in a more limited way and saying if I only have three to five years, do I want to stay at my job, or is it time to do different things with my life? Travel more with my husband and do fun things. I have decided to go back to my teaching position in the fall, but I'm only going to teach one class until I decide if I want to take back the rest of my classes or if I want to retire from teaching and do other things.
Maggie's Experience: They aren't saying I'm cured
I'm one of 300 in the United States to have this procedure done.
As far as my prognosis, they are not telling me that I'm cured. They
haven't been doing it long enough yet to say, yes, this is a cure for
metastatic breast cancer. What they're telling me is that I have a
little better than a 50% chance of being free of cancer in three to
five years. All of my check-ups have been good so far. My cell counts
have been pretty good. I know that I will be monitored forever. By
the year 2000, they are hoping to be able to give some definitive
answers as to whether this is actually a cure for breast cancer or
not.
Maggie's Experience: Many changes for my family
My older daughter came and visited me three times, but my younger daughter came one time. I think she's been very angry at me for getting breast cancer and her way of coping with this is just to deny it. And she doesn't want to talk about it, she doesn't want me to talk about it. But I did have good support from all my other family members. My husband stayed down there for the first four nights while I was going through chemotherapy. We went through the process of selling our house. In fact, the week that I got out of the hospital was the week that we had to be out of our house and moved into apartments until our house was built at the end of September. We went ahead with the house because we thought this is our dream. We've always wanted to build, so I'm very excited about it. But there's also this other part of me that says how long are you going to be in it?
Maggie's Experience: Handling the insurance was hard
When I finished chemotherapy and they actually set up the
appointment, I called my insurance company and was told we are not
paying for bone marrow transplant, because it was considered to be
too experimental. We decided to go ahead. We were prepared to take
our insurance company to court, because this was my only hope. And we
had already accumulated around $11,000. And I had a call from my
insurance company and they said we only pay for this if its done in
one of five locations across the United States. This is what they
wanted me to do. Scrap everything that was done and go to Chicago,
which is the closest location and start all over. So what we finally
found out is that I should have been referred back to my family
doctor and he should have appealed. But somewhere I fell through a
crack and we were already into this $11,000 worth. We finally won.
They did agree to pay for it and they have been wonderful.
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