Well here it is, the second rainy Friday in a row, and that means no bike ride.
I did plan on going to the gym shortly, but after receiving an email from a friend this AM, I realized it’s been just about a month since I last posted anything on Edie, so today seems like the perfect opportunity to do just that.
So far, all of Edie’s numbers, i.e. blood counts, kidney tests, protein analysis, etc. have been stable, thanks to Millennium Pharmaceuticals wonder drug Velcade.
Of course nothing comes without a price, and the resulting side effect of peripheral neuropathy, has caused her some degree of discomfort. So she skipped the last cycle of Velcade and Doxil, to see if the neuropathy would improve.
I didn’t really expect the neuropathy to improve much, which it didn’t, but I was guardedly hopeful (remember I am a contrarian/pessimist). Instead her creatinine level increased slightly, which neither of us wanted to see.
So this afternoon, she is resuming the Velcade, but at a lower dose, to attempt to keep the myeloma in check, without increasing the neuropathy.
In the interim, she revisited the transplant doctor to discuss the possibility of an autologous stem cell transplant (ASCT), to help extend the duration and depth of the remission.
The doctor was encouraging, she would be a candidate for an ASCT, but did express some reservations about her kidney function. The problem being the reduced kidney function could cause some complications which would not easily be addressed at the City of Hope in Duarte, CA. Instead she would be referred to the Fred Hutchinson Cancer Research Center in Seattle, if that was necessary.
So that’s about it. For the most part, the news is good, and we’re still planning on going to New Zealand the end of March. Just hoping the ASCT won’t interfere with those plans, or we may have to move the trip up a month or two.
I cried when I read your post, which is not like me, but here I am terminal but in the best shape of my life and I want everybody to be like that. I know how devastating it is for a person to deal with the side effects of treatments, and I pray that Edie will find some relief. Hmm, maybe I am just scared, I know that in my future I will be dealing with some of the same issues. Okay, “I’m over it” at least for the present moment.
You know, I have the same fears.
Everyday I can’t sleep, have trouble getting out of bed in the morning, or just otherwise have that feeling of malaise, I think it’s related to my lymphoma, and I begin to wonder what lies ahead.
But then I think about what Nate said to Brenda on Six Feet Under
and realize it doesn’t do any good to dwell on what may or may not happen.
Just live for the moment.
I like to live for the moment, but the people around me don’t really understand. On the way home from our Christmas Party this evening I mentioned that I don’t want too think off the future, my husband (the love of my life) said you need to think about the future for your retirement etc. Shoot the only thing I can think about is will there be a clinical trial in the future or will I have the medical insurance. When my hubby and I first married we took out life insurance policies but since he was the major bread winner we took out more on him then me. That was such a wrong decision, in retrospect the insurance should have been the same. As we dwindle down our funds for my treatments the policy would have replenished his retirement funds. Cancer Sucks!
Umh! What can I say? Yes cancer sucks and life’s a bitch. You can never know whether the decisions you’ve made about life are the right ones until it’s too late. Sometimes you make the right decision, and sometimes you don’t.
On top of being a contrarian/pessimist, I also believe in fate.
Everything happens for a reason. Your destiny has been predetermined, and there’s not much you can do about it.
The cards have already been dealt, and it’s just a matter of turning them over now. (I just thought of that extra cliche.)
Your husband and friends don’t like thinking about you being sick, so it’s hard for them to understand. I’ve always said it’s a lot easier being sick than being the care giver, and I should know, being both.
While I understand that, you only have to look as far as Sean Taylor, the Washington Redskins Safety, who died from a gun shot wound to the leg, to know life is fleeting.
There’s a man who had everything to look forward to.
All you can do is try to live your life as best you can. There’s not much else you can do.
And don’t dwell on the negative, there wasn’t anything you could have done about that either. It was your destiny.