I haven't been around much lately because so much has been going on and I am fairly depressed because of it I guess. Just so worn out in general.
My cancer update: CEA went up quite a lot last month and scared me a bit...6.9 up from around 5 in September. For the first time ever I had just a CAT without PET, according to the wishes of my new onc at Dartmouth. The CT was clear so I've tried to put the CEA out of my mind. He doesn't even want to repeat it for 6 months. Perhaps I've already posted this; sorry if I have.
I've been having really terrible trouble with neuropathy in both my hands and feet. Really, really bad and getting progressively worse. My endocrinologist is certain my feet neuropathy is 5FU induced, and hands are 5FU, carpal tunnel bilaterally, he thinks, and "something else". He's referred me to a neurologist who will also evaluate my brain function as chemo-brain (or whatever???) seems fairly substantial. So...I don't know if I'm going to have a weird new diagnosis coming up. They are insisting on doing an EMG before I even see the neurologist and I've read all about it on Dr Google and it scares the crap out of me. Anyone had one? I want the neurologist to tell me what, if any, help it will provide in treating the problem. Identification without treatment is utterly useless to me. My doc just added Cymbalta to my Lexapro to try to help---haven't started it yet but am praying it will help the pain, which is becoming a real big problem for me.
Also, my balance is so screwed up. I had a bad fall a couple of weeks ago and had to go to the ER. Thought I cracked my knee/hip up. No breaks, just a lot of soft tissue damage, and an effusion in my knee, but all is fine with that now. Thank God it was my left side because I am like a taxi driver around here, bringing me to my next whining.
Many of you know that my husband Steve has stage IV lymphoma which had gone wild in September, and had spread everywhere. So, we decided to move to Vermont, where my family is, and where he could perhaps get a bone marrow transplant at Dartmouth, the only thing which will save him. I'm so glad we came but it has sort of been an ongoing nightmare. he has had a couple of rounds of killer chemo up here, where he gets hospitalized for about 5 days and gets round the clock chemo. He's doe well with that... the effects seem not to be as bad as our CRC chemo at all, it just trashes his bone marrow (as it's intended to, since he has a "liquid" cancer) During this time he's had home nursing coming out every couple of days, but he won't let his home nurse draw his blood, insisting I do it. I have to take him to the hospital several times a week. About 11 days ago they started the process for the transplant. It's an unmitigated nightmare. He had one day of really killer chemo, Cytoxin, at 3x the normal dose, in order to fully destroy his bone marrow and presumably any cancer cells there, although they had done a bone marrow biopsy the week before which was negative for cancer cells. Since the Cytoxin, I've driven him to the hospital each day for 2 shots of neupogen (which they won't allow me to give him at home without paying directly for it---$2800) So, we trek out of the house in the ice and snow and ~0-10 degree temps and drive 1/2 hour each way for 5 seconds of shots. Today they were supposed to retrieve his stem cells by hooking him up to a sort of dialysis machine for 8 hours, but he had to have his blood count checked first...his white count was TWO!! Should be 7-8 THOUSAND, and his was 2, NOT 2,000...just 2. 2 white cells in his body. Holy crap! And, his platelet count was 14K. So, he had his 3rd platelet transfusion today (they can't transfuse white cells without a serious risk of fatal reaction, so he's stuck with that level and just praying they'll come up. There was no point in trying to retrieve any stem cells as they are a part of the white cell count, and he has essentially no white cells. So, we're sitting around with him having essentially no functioning bone marrow, and will go back tomorrow morning and see if things are improved. If his marrow hasn't turned back on by Friday, we're in very deep kimchi.
I feel very sympathetic for what he is going through, but I will be very frank. He has been a quite difficult person for the almost 35 years I've known him, and this situation has not improved anything. I'm in a rough place, nothing I do is right, and I get screamed at continuously. It's an amazing opportunity to try to hone my patience skills and ramp up my compassion. Some days are better than others. Someone here once said to me something like "if God gives us challenges according to our capacity, he must really think you're a badass"...or something like that. I loved that compliment and I think of it daily, as I imagine myself getting weaker and weaker, not just emotionally, but physically, too.
It's so hard keeping up with my friends, which is awful because I really miss them, and really need them. My "best" friend on this board (and she knows who she is, of course) is going through a lot right now, and I'm not able to be fully there for her, which sickens me. I read the posts here first thing every morning, but I so feel that I'm running on empty it is hard to respond to so many posts that I would like to. I keep all of my friends here in my thoughts and prayers, and am physically ill when I read about those really struggling.
We've had so many heartbreaking losses lately, and so many new folks who have joined us. I think it's been a pretty hard time all around, BUTT, I remain so grateful for all of my pals here, and think think of you unfailingly. If you read this far, you're amazing.
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo
9/13 ^17th clean PET/CT NED for now