|
In a message dated 12/5/2004 11:33:20 P.M. Eastern Standard Time,
[EMAIL PROTECTED] writes:
Boy, Jennifer, I am with you 100% on this one. It amazes me that you
are still able to work full time and do the things that you do. I know, I know,
you have to. It just amazes me.
You are one tough woman.
No one should begrudge anyone for their right to quality of life. If
it were not for my two daughters, I would have stopped Gleevec altogether this
summer. I had come to a point where I have had it. (I still say "have"
because the feelings and thoughts are with me constantly - my own private battle
is still being waged within.)
I am in CCR and yes, I owe that to Gleevec, but the cost? I do not have the financial burden you bear from the medical expenses -yet - but the side effects have done their damage. I don't know if I will ever recover from them. As you say, there is no end in sight to all of this. I have tried to keep up with life, on a lesser scale than you I suppose because I gave up my business right away, I had no one else to shoulder that burden in the beginning of IFN/ARAC tx. But it seems every month something new is taken away from me. Just a few weeks ago I had to stop my daily walking routine, something that kept me healthier and happier. I fell twice - without warning - and jarred my spine and neck. The fatigue hits me so quickly I go down like a ton of bricks. And speaking of that, the weight I have gained is not only physically damaging but emotionally devastating as well. The other night I attended a party and someone told me they did not know who I was at first because I "got so fat" I was not recognizable. (Very rude but true.) I keep to my home more and more now because I fear what people will say about my looks. I have wrestled with that for the past year and still can make no sense out of the constant weight gain. Well, the metabolism has slowed, the fatigue has caused me to fear normal activities, I have NO appetite and yet I look like I am eight month's pregnant. My face is really swollen. People comment on it all the time, I am so sick of it. I had to stop taking the diuretic because it was causing too many muscle
cramps and I feared that one day the next muscle to spasm might be my
heart.
I fought for over two years to get the pain under control, and that took a
huge toll on me. It also caused a wedge between my doctor and me, as far
as our relationship went. Because I was relentless in my hounding him to
take care of the pain, my constant letter-writing, researching for proof, our
relationship is now seriously strained.
How many days have I said, "That's it. No more. I won't take one more
dose?" I cannot begin to tell you.
I swear that the only thing keeping me from doing that is my two girls. I feel as if I have to stay here for them. But they see their mother fighting depression and crying, nervous, anxious, none of that is good for them either, I know. When I see posts like yours, I see the truth. You are not afraid to
state the obvious. You are not afraid to make a stand and hold your
ground. I know how tough this is. I just wanted to chime in here and
tell you that I think you have every right to make your own choices with your
treatment. Everything has a cost. Interferon was awful and I so
looked forward to STI treatment, and truly believed it had little or no
side effects. I have to say that through it all, I have retained my
remission, but not my strength nor peace of mind.
I hope you can continue doing what you are doing and try not to care about compliance or what any one else has to say. I am trying to do that right now, but not really succeeding! Good Luck - Lynne A. New! Sign up for local CML support group meetings in your local community at http://cml.meetup.com Apply for Commercial Real Estate loans online and submit your deal to dozens of hungry lenders in just minutes. Loan programs for all types of business and commercial real estate. Apply anytime at http://realestatezoo.com CML (Chronic Myelogenous Leukemia Support List) --------------------------------- Part Of CMLHope.Com An International Community Of CML Patients For more information: http://cmlhope.com Post Message: [EMAIL PROTECTED] Subscribe: [EMAIL PROTECTED] Unsubscribe: [EMAIL PROTECTED] Change To No Mail/Web: [EMAIL PROTECTED] Change To Digest: [EMAIL PROTECTED] Change To Email: [EMAIL PROTECTED] List Help: [EMAIL PROTECTED] CML Group Web Site http://groups.yahoo.com/group/CML
Yahoo! Groups Links
|
