After a second exhausting day of stem cell collection, I was too pooped to write. Not that I did anything but lay on my back for hours and hours, It was just the cumulative effects of the process…blood circulating out of and back into your body. Amazing thing to watch.
Let me give you a glimpse into who Dr. F. is as a man, and a physician.
Due to lack of plasticity in my veins, they do not seal well (thanks again, Walt – dad). After the Hickman line was removed from my jugular, I had issues with bleeding. As you can see, it is not a pretty thing. Glad I closed my eyes during the procedure! They wheeled me back to the room, and then nurses started coming in, and running out. Then who appeared but the Super Hero Dr. F., who packed my neck in ice, pressured the incision, and knelt by bed to make sure I knew what was going on, and how he would stop the bleeding – his promise. The Oklahoma geyser quit spewing after a few hours and small procedure; then the Super Hero went home.
Chemo Day One
Yesterday was day one of chemo, and I am thrilled! Hard to imagine being so pleased to take chemotherapy, but most HSCT patients are a happy bunch when it comes to this. You see, many think of chemo as taking away “things”…your hair, your health, your ability to do much. We see it as life giving. MS has already taken so much from us. I have lost the ability to walk or speak on many days, balance, pain, vision, cognition…so chemo will be restoring. It will be the tool to bless me with these abilities once more. At the least HSCT will stop the rapid progression I was having and keep me on even keel for life. A happy prospect considering the road I was on.
Borrowing from my friend Brooke (it’s not plagiarism, I cited her):
Here’s how it works. First of all, MS does not reside in my stem cells. It resides in my T-cells. The chemo that I am currently being administered is killing off my T-cells that contain the MS abnormality, along with the rest of my current immune system. Next Wednesday, July 10th, when my recently extracted stem cells are transplanted back into my body, they will serve as the “rescue” team. They will act as new “seeds” from which I will grow a new immune system that is free from MS. We are wiping my immune slate clean, and starting over!! I want to make one thing very clear. If you do not utilize chemo, you will not obliterate the MS abnormality or your current immune system. You may see similar treatments being touted around the world that may provide for just an injection of stem cells, but no chemo. They are not valid/viable treatments. Unless, of course, you only want to spank the MS, instead of beating it into submission.
Yesterday morning started with a bang! Dr. F. showed up, gave me the second day of stem cell collection report. Abysmal. A whole five hours (eternity) hooked up to the machine, for 68,000 stem cells? That’s not even minimum wage rate at 13,000 an hour. My heart sank. His goal was 1.2 million for that collection. My age is a detriment for stem cell harvesting on second go rounds. But the good doctor said “No worry, I feel we have enough and you will do good in re-infusion.” No sweeter words were ever spoken. Followed by, “So, we begin chemo today.”
And did it begin. I have never seen so many bottles of solutions come and go. It is a regimen of MESNA which protects the bladder from the chemo, Cyclophosphamide, anti-biotics, and fluids to hydrate and protect the body. How many bottles? I lost track at ten. A Heparin shot is administered as well to prevent clotting.
Day one is checked off, with three more days of high dosages to go. How was it? Not bad at all. I got a nasty headache which the nurses quickly relieved, and a bit tired. By evening the “sweats” had started, which is a good thing. It is the body’s way of
removing the toxins, and I am so glad now I got a “do it yourself” haircut before that began! Oh, but the night was not over. At 10:00 p.m. I received an injection of some sort in my line. Great, let’s go back to sleep. Not so fast…at 11:00 p.m. another two bottles of fluids arrived. Have I told you yet how much fluid they put into you, and do you know what that means? What goes in must come out…every ten minutes it must come out. Quality time in the loo.
Chemo Day Two…soon!
So, it’s 6:30 a.m. in Moscow. A tiny bit of nausea hit me this morning, no big deal. Just more “loo time”. I hear the rustling outside my door of nurses and carts, and wonder what type of “meal ” is for breakfast today…oat, malto, or rice? Love the malto-meal, it reminds me of when I was a kid and mom would fix it oh so just right with brown sugar, a little butter and raisins. And I do the same here. Thanks mom. Chemo will begin around 10:00 with poles and bags and tubes running into my neck.
I hope to have a visitor today, a woman named Snizhana from Moscow. Her daughter is from Kiev, and they met with Dr. Fedorenko yesterday concerning HSCT for the daughter. How did I know? A group has formed an
HSCT Forum where those who have had the procedure, and those undergoing or in consideration have a private place to ask questions, discuss all aspects of the procedure and review study results. It is moderated by a physician who himself underwent HSCT, and a physiologist who received treatment in Germany – a knowledgable crew.
Snizhana posted last night about her meeting here in Moscow. I quickly asked if she was still here, as I would like to meet her – she speaks excellent English, or at least types it well. She will be at the hospital this afternoon for a tea with past HSCT patients who are excelling (they all are), and want to reassure her of the treatment. And…if Dr. Fedorenko will allow her on the isolation floor, I will be meeting Snizhana. And she is brining me crackers!!! For those not so fun nauseous moments.
Chemo, my first (and only) visitor, and crackers! A big day for me!