Today I get two units of red cells and I'm about half through the first one now. I've also had more Lasix to help shed some of the now 25 lbs of water weight I have gained since last Friday, but I can't tell it's doing very much. I think I need a higher dose. This is in addition to the anti-fungals, anti-virals and the plethora of antibiotics I'm taking.
All the stuff on yesterday's long list of things got done. When the nurse tried to use my new picc line to draw blood last night it didn't work. This is not a good thing. I had to get stuck to get last night's blood cultures. Things go in just fine, though. My nurse today has flushed it and did something called (I think) TPA and one side drew OK about an hour ago. After I get done getting all the red cells, she's going to check it out some more.
I have the nicest infectious disease doctor. She just stopped by to see me. They were not able to identify what was growing from my blood cultures, so they've sent them off to Mayo Clinic. It will likely be four or five days before we hear back from them. Hmmm. I didn't think to ask her if I would have to stay here till we get the results. But I'll check with her tomorrow.
That's all the easy stuff. The next bit is not so easy.
I'm now nearly through the third cycle of Dacogen treatments and am not getting any better, My counts are lower than when I started it. The fourth round was scheduled to start on the 16th. That is not going to happen.
After trying both Vidaza and Dacogen, the only other choices for this disease are either transfusions or a bone marrow transplant. I could get transfused for a long time IF I had a white count. And perhaps if I'm off the Dacogen for a while, it might finally come back some. We'd just have to see. But I can't wait too long, as I've been neutropenic since 17 December.
My doc doesn't feel like we can start another round of Dacogen until I get something better going on, so when I get well enough to get out of the hospital (and we don't know when that will be) he wants to make an appointment for me with the bone marrow transplant team at the Sarah Cannon Cancer Institute in Nashville. I am not sure at this point if there will be a fourth round of Dacogen or not. My doc will be consulting with them, too and it's likely the transplant will have to be sooner rather than later.
So this is a lot to think about. I'll just keep on keeping on until I find the answer.
My 2024 Christmas Card
2 days ago
12 comments:
Oh Dear Becky, you are such a trooper. Lots of hugs and lots of prayers coming you way. God Bless!
Adurey
You're in my thoughts and prayers, Becky! Keep up the positive thoughts. I'm pulling for you! :)
Thank you for stopping by my Wordless Wednesday. I do hope good
things start to happen for you with your health.
Sounds like it is a long haul, with lots of hitches along the way.
God bless. :)
Still keeping lots of warm healing thoughts for you Becky everyday! Lots of germ free hugs too!
Eileen
Becky, your story is oh, so familiar. I took care of many many neutropenic patients, each receiving numerous antibiotics, plus an occasional anti-fungal and anti-viral. It is a very scary time~I am so happy you have your lap top with you so you can continue a social life as this is a very isolating situation. I pray for you daily, but I'll pray extra hard that your bone marrow kicks in soon and your WBC breaks the 1.0 mark! Stay strong~so many are rooting for you!!!
Liz
Still keeping you in my prayers.
((Hugs))
Thinking of you tonight, Becky, and sending more healing angels your way.
Mary P.
Becky,
I'm thinking about you sweetie. As you know, I've had a bone marrow transplant. I'll be right here for you if you have any questions or concerns. And remember, there is great life after bone marrow transplant! I'm still praying for your bone marrow to kick in and make those counts go up! hugs to you, Joanie email: mrsyepez@aol.com
Girl...you are one of the strongest people on this planet...maybe other planets too!lol...
Keep the faith baby!
Sending you many healing thoughts and prayers and love...
L xoxox
Becky,
talked to sally today. You are constantly in my thoughts. I am praying for you and those who care for you. Tell Tori to come see me. Lots of illness here - we can talk in the hall. I love you and am inspired and grateful to know you.
Soul Sister Deb
Becky, you are in our thoughts and prayers!
{{{Hugs}}}
Thank you all so very much. I can't even begin to tell you how much your support means to me.
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