Round #2 of chemo has gone fairly well. Not too many glitches. I’ve felt fairly strong overall. Taken very few medications for pain.
The one factor I don’t like and is beyond my control is my blood sugar level. They have me on massive doses of steroids. The cortisol (a hormone) in the steroids causes my body to become insulin resistant or causes to much sugar release (or both). I’m on insulin several times a day. Not used to that.
Spoke with a dietitian at length. She assured me there wasn’t anything I was doing wrong or could do different with my diet. Even if I ate one piece of lettuce daily, my sugars would be out of whack. She stated repeatedly it isn’t from food ingestion, but hormone therapy (steroids).
The knot on my neck is a little bit smaller. Yes! I like this. I wish it would go ahead and melt away quickly, but I suppose that just isn’t going to be the case. I am for sure going to receive 6 rounds of chemo at present, possibly eight.
I have watched a few members of the burkitt’s lymphoma society get to a point in their therapy where the tumors quit responding and they have to switch to other regimens of chemo and start over, so I am not out of the woods yet. I have hope, and try to remain honest in my estimate of the situation.
I did get my ARA-C (cytarabine) infused into my cerebrospinal fluid (CSF) yesterday afternoon. That isn’t much fun, but not as bad as lumbar punctures. My central nervous system gets better over all chemo coverage by going through my Ommaya and it
The bump on my head is a silicone disk connected to a tube that travels to the middle of my brain. Chemotherapy is instilled into the CSF (fluid) in the middle of the brain
is relatively simple and straight forward. A few headaches persist, but that is part of the package.
The initial stick stings a bit, but isn’t as bad as a lumbar puncture by far. Clean, simple, and in every time. No “fishing around” to find the right spot.
The oncologist is inserting the chemotherapy ARA-C right there. It makes an odd bubbling noise right in the middle of the brain with equal sound to both ears. Odd.
I’ll be going home Tuesday, tomorrow. I will come back for the next round 21 days from this last Thursday, so that puts me back in the hospital for another 6 days starting on August 14th, coming home the 19th if no complications.
If all goes by the book, I should be eligible for a stem cell transplant (if they find a donor) by late October.
I value and appreciate your support and prayers. Thank you all so much for all the help and love.
Walking Through This Together 
Thanks got your info,good luck with treatment and discharge,keep in touch,love, Frances
Frances H. Johnson
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Hey Robert. So glad you get to go home
Tomorrow. Can you tolerate cold food or
drinks? I have fresh picked frozen blue
berries I would like to share with you.
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Hello Lysta! I am glad to go home also tomorrow. I can tolerate cold food and drinks right now. The fresh picked blue berries sound delicious. I have to wash them carefully and ingest quickly as my counts are going to take a nose dive soon and I’ll enter into a dangerous category of low white cell count.
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Medical science is amazing. Tom and I were fascinated to read about your Ommaya port. He has a Bard PowerPort in his chest, with a similar-looking silicone lump under the skin. Until reading your post, I didn’t know that sometimes chemo needs to go directly to the cerebrospinal fluid rather than the bloodstream.
I am curious about how stem cell matches are found. You may have covered this in earlier post before I found you. If so, just point me to it.
Hope you’re at home and comfortable now. Are you like us, and have bottles of Purell sitting around everywhere?
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And one in my pocket for when I go to appts.
I don’t know much about stem cells at the moment to be honest, have just done the initial phone consult and that is it. I’ll be posting information as I know it. Thanks for following!
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I’m so proud of you! You are courageous and strong. I continue to lift you up in prayer. Kick this awful disease in the butt.
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Thank you Johanna.
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