Stage IV brothers and sisters,
I had an elevated CEA a couple of months ago (6.9, up from 4.something in September) and my new onc at Dartmouth said we'd just wait 6 months to repeat it. I felt a bit uncomfortable with that, as did several of you, so I told them I wanted it repeated next week and am doing so, with fingers crossed. Given what's up with Steve, I don't have time for my own cancer bullshit right now.
Here's the latest on him (copied from my Facebook) for anyone following his story:
Today begins the next round of trying to get Steve's stem cells mobilized for transplant. Went to the hospital early today where he got his first huge dose of Neupogen (the drug that is supposed to make his marrow crank out stem cells, though it didn't last time) and tonight, and every morning and night for the next several days, I'll be giving him three injections of the stuff. On Monday morning they are going to check his stem cell count. If it's over 10 (still quite low) I will take him back to the hospital for a drug called Mobilez (or something like that) and then we will go in at the crack of dawn Tuesday, Wednesday and almost certainly Thursday morning for 8-10 hour days of plasma apheresis. It's something like a dialysis machine that will extract the stem cells from his circulation, taking all his blood out, removing the stem cells, then putting it back it. It can play havoc with his platelets, which have been a pain in the butt for many months, and that's a concern. Bit of a risk for a ruptured spleen or brain bleed. I would plan on taking a lot of xanax next week, but I'll have to drive a lot. If they're able to extract enough stem cells for transplant, they'll freeze them for later transplant. Steve will get a one week break as apparently this procedure (especially when it has to be done for three days) is completely exhausting) then will be admitted to the hospital for ~5-6 days for another round of chemo. Recovery from that will take a month, then he'll get one more round, I guess, then try for the transplant. If I'm doing the math correctly, I guess it will be mid-June or so by then. He'll be in the hospital for at least a month for the transplant, and then pretty much in bed recovering for 6 more months after that. It will be a very long many months coming up. Prayers are welcome.
xoxo Praying for all of you.
Ms Ossie, it is heartbreaking what you are going through. There is no legitimate way to minimize all that cancer steals from us on this kidnapping. You are so entitled to grieve for what you had always expected as viable options for your future. I am so grateful to have survived this long with stage IV cancer, and I am particularly reluctant to complain here about after-effects of my treatment, because so many of my beloveds are experiencing so much worse, all day, every day. That doesn't change the reality for me, just how likely I am to complain about it. I was thinking about this yesterday while grappling with how I am going to deal with all of Steve's upcoming needs. I am severely debilitated from the effects of chemo/neuropathy. They want me to have all sorts of invasive testing done which I just don't have the time to do now. They want me to have a 90 minute initial appointment re:chemo brain, which I just don't have the time to do now, they want me in PT, which I just don't have the time to do now. Wah-wah-wah. But, unlike so many of our loved ones here, I still get up every morning.
I am so sorry that you are grieving the loss of having your own children. However, you don't know the end of your story yet. Amazing and wonderful thing can and do happen. I hope and pray they will happen for you...and for all of us.
Hugs to you.