Hello, all! I can't speak, but I can write fairly well, if a bit confusedly, I'm finding as I type and retype this. That morphine is quite something!
Great news right out of the gate is that my body has started to produce white blood cells, hematocrit cells, hemoglobin cells, and platelets! Go me!!! I've been getting high fevers at night (over 103 degrees) so they're not sure if those result from an infection or are just "engraftment fevers." They've changed my antibiotics again just to be sure. I'm told that if my counts continue to rise and the fevers abate, I'll get to go home before I'm fully engrafted. Conversely, if my counts dip down before rising again, or if the fevers continue, I'll have to stay in here longer, as they wouldn't want to release me if I were prone to fevers. Makes sense. Right now I'm just willing my body to cooperate and continue to just crank out those cells. At Emory, they don't count the cells when they are less than 300 (<300); once they fall that low, you just fall into a "bottomed out" category. My WBC this morning had risen to .4 -- great news! And, like I said, some other critical counts rose also, so I'm really happy! If this trend continues, I should see some relief to the now substantial pain in my mouth and throat, in addition to my abdomen. I really am looking forward to some relief soon, because this part is just so totally not fun!
Brian, you mentioned your having got Neupogen shots at some point after your transplant -- that isn't part of my protocol. I'm just going to have to bring them up on my own! I think I can; I think I can....
My slightly raised counts notwithstanding, I'm still hurting a lot, and am trying to sleep through the pain more often than not so the time passes more quickly. They think I'm going to start feeling better this weekend. I sure hope they're right.
In other news, I'm smiling again, if with a painful little wince each time! (Ouch!) I've been so good with my mouth care, and they know it; they say that for some people the mucositis is unavoidable, despite their best efforts, and the best you can hope for if you happen to be one of these people is to proactively reduce the severity of the mouth sores. (The esophageal and GI tract sores/ulcers will develop pretty much unhindered if they're going to, with little to do preventatively -- apart from that Kepivance drug which helps everybody but which I cannot take because of my esophageal strictures.)
That's it for now -- I have a pounding headache, so I'm going to try to catch a little shut-eye to see if that will help. I have the feeling of having bottomed out, but in the words of the attending onc, Dr. Flowers just now, that just may not be the case. Tomorrow will tell all. And here's hoping for no fevers -- engraftment-related or otherwise!
About Me
- Sarah
- I'm a 43 year old, happily partnered lesbo. I was raised in downtown NYC in a commune, and the woman who raised me was the real Auntie Mame. I've lived also in Italy, India, and Ireland. By the time I was 10, I'd already lived with over 4,000 people. When I was 2 1/2, I drank oven cleaner. I didn't know I was gay until I was 26. My partner of over 9 years is one of the finest people I've ever known. She's from Brooklyn. I was treated for Stage IIIB Hodgkins Lymphoma, subtype Mixed Cellularity. First I did 6 months of ABVD chemo, and that secured a 14-month remission. My relapse was caught early and I went right into a stem cell transplant. The cancer had already returned when I had my 3-month post-transplant scans. There's no cure available to me at present, so I'm now entering a period of palliative care. We're hoping a Gemzar/Navelbine chemo combination will keep my cancer at bay for as long as 4 years -- that's the prayer. In the meantime, I am focused on savoring every moment....and maybe even losing a coupla pounds!
5 comments:
Sarah - so glad you're feeling well enough to write! Here's hoping for a weekend of no fevers and rising counts. You're doing great. I hope if I someday have to do the same I can do it as gracefully as you.
Nancy (pine soul)
Hi Sarah,
I am so pleased to see that you are able to write yourself!!
It sure sounds like you are on the upward swing....I looked back at my blog & you are pretty much exactly at the place I was... on Day 8/9. Have you needed any transfusions??
Sorry to hear about the fevers, I am sure that makes it so much more miserable for you(such as the wicked headache).....I hope the constipation issue is improving...that is most likely from the narcotics & other meds..
You are doing terrific...soon you will be home...but don't rush it, as you need to take advantage of the round the clock care!!!
Glad to hear you are smiling again...
Love Angie
I have nothing to say except that I love you and you look amazingly gorgeous right now (must be all those fresh blood cells)!
I am so glad to hear you are smiling again, Sarah! I think of you all the time, wondering how you are doing and hoping you are beginning to see the light at the end of this long, long tunnel. I know you are an incredibly strong woman, and if anyone can make it through this, it's you. Just know everyone on the Hodgkin's board misses you terrible, and we can't wait to have you back!! That sounds really selfish, doesn't it!!!! Can't help it, that's what you get for being such a powerful force!!!!
Love and hugs to you!!
Skye
Loving prayers for you and Lorraine, sweetie. I pray this phase of your healing passes quickly.
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