This letter is a bit "long winded", but I hope
that you find something useful in it. Like you, I had to face relapse and a second round
of obnoxious treatments. But take it from me, going "though the ringer" a second
time can really be worthwhile. You can win!!
I know exactly what it is like to have the "wind
knocked out of my sails" just when things are going well. After my first transplant
(auto for NHL), the docs told me that I had achieved practically total remission.
That was in February of 1995. Everything was going great. I got a great promotion, my
fiancée and I bought a house, we bought a dog, we were talking about having kids (I had
some sperm frozen before the BMT), and we were planning our big wedding. Everything was
Then a few weeks before the wedding I noticed that I had a
huge lump in my chest. We did not tell anyone until after the wedding since we wanted
everyone to have a good time. After the wedding, when we were taking pictures in the
church, I collapsed and passed out for a few minutes. I told everyone that it was just
post-BMT weakness. Baloney! I had a huge tumor in my chest and I could hardly breath.
Anyway, a week later my doctor told me that I had almost no
chance of surviving. He did not even want to treat me. Of course, I cried at first. Then I
pulled myself together and said "Bull**** doctor, I just got married, I am just 31
years old and I refuse to give up". I want to "run the gauntlet again".
I did my own research and found that the Hutch in Seattle
would help me if I had perfectly matched sister and if the Cleveland Clinic could debulk
the tumor first with Cisplatin. My doctor in Cleveland said that the chances of having a
6/6 matched sister and having the debulking work were very small. I said that I did not
care if the chances were nil, I still wanted to try. Anyway, both of my sisters matched me
perfectly and the Cisplatin worked great (even though it still makes my ears ring). I came
here to Seattle, had a second transplant (allogenaic this time), and now there is no trace
of the lymphoma in my chest.
Don't get me wrong. It wasn't easy. I have been here for
more than five months now and the only way to describe the process is that it really
sucks. We all hate puking, not sleeping, not being able to eat or eating to much
(Prednisone makes me eat like a pig), etc. Sometimes, I eat so much that and get so
bloated that I feel like I could undo my belt and let my abdomen rest on the floor next to
couch that I am laying on. My chest is so full of painted lines and tattoos from the
radiation therapy process that I look like something out of a bad science fiction movie.
I spent four days in December (including Christmas and my
Birthday) with a huge catheter in my penis. I had "Dr. Mengele" pumping blood
clots out of my bladder with a huge syringe. It was awful.
At one point I had a bad lumbar puncture and got
"postural head-aches" that made me puke.
Now I have GVHD, "post-shingles herpatic
neuralgia" (a fancy way of saying that my back itches like crazy), nerve damage in my
hands and feet, and my face is so puffy from Prednisone that I look like a cross between
Charlie Brown and Uncle Fester. But you know what?
I AM ALIVE !!!!! ALL OF THE TORTURE WAS WELL WORTH IT!!!!
I get to go home and see my Mom, sisters and friends again.
I get to go home and live in my new house, drive my Miata, play with my dog and paint my
ugly abstract paintings. I am happy. I did not think that I would ever be happy again. I
am still very nervous about the future, but once again I can laugh, enjoy my life and be
I realize that I will be weak for a long time, the nerve
damage may be permanent and that the cancer can come back. Heck, the GVHD might get me
eventually - or some stupid infection. But I figure that I will cross those bridges, if I
have to, when I get to them. Who knows, maybe six months from now the FDA will approve
some monoclonal antibody drugs or a new GVHD drug will become available. Maybe the GVHD
will "burn itself out".
I figure life is fun and worth fighting for.
Don't let the prospect of additional treatment get you
down. There will be obnoxious side effects, postponements of treatments, pessimistic
doctors that will scare the hell out of you and other various road blocks and obstacles.
The side effects of the treatment will be obnoxious. But you have got to hang in there and
keep on fighting. The whole process is like a chess game where you have lost your queen
and you have got to try to march one of your pawns across the board, get your queen back,
and WIN THE GAME!!!!!
Webmaster's note: Kate Finn was CeltGirl on
BMT-TALK. She passed away Feb 9, 1996.