I started consolidation on Monday of this week. I had an appointment with Dr. Shustov to check blood counts and talk about the upcoming chemo. Cytarabine is the only chemo in the regimine that happens in-patient, so I knew I would be going into the medical center later. But, to my surprise, I learned that the stay would be Mon-Wed, not Mon-Tues like the schedule had indicated. So goes things in the healthcare world, little surprises seem to pop-up all the time no matter how diligent I try to be in clarifying and asking questions. Cytarabine is cool in that the working mechanism in the drug was found from nature: a species of sponge in coral reefs. Its now synthesized, but the sponge they found produced a cytosine base that combine with deoxyribose to produce something similar to DNA, but not exactly DNA. If you infuse that cytosine base to humans, dividing cells will uptake it thinking its the base to make DNA, and create cells that have this altered DNA, which kills the cells. Since cancer cells divide alot, it "targets" them, but it will go ahead and kill any old cell that happens to be dividing that moment.
After my appointment, I headed back home to gather some more things for the two-night stay. Having been through the leukemia ward before is a big help for hospital prep, I knew exactly what to bring. I packed basketball shorts, a few hoodies, some books, some screens, and then I was on my way to 8SA. Luckily, I was placed in the the posh, renovated ward I was in for the Ommaya placement, and not the older, noisier, and smaller 7th floor rooms. Since they can't get going until they see the whites of your eyes, I arrived around 11am, but didn't start chemo until 6:30. I had a feeling this would happen, so Dad and I did some work as we sat around waiting for the all the hoops and paperwork to get done. They said the mixing of the drug takes "3 hours," which gave me an image of a scientist standing above a small beaker (the drug is only 500ml), just mixing away with a glass rod. The infusion, like the mixing, also took three hours, over which I didn't feel to symptomatic. Briana and I watched some MNF and also some of the
Big Lebowski. However, around 10 pm that night, I started feeling the nausea and general sickness encroach. This led to a Tuesday morning that was particularly terrible, I spent it huddled on the bed, too nauseous to watch TV or mess on my phone, trying to keep a few grapes down. It's a shitty feeling when you're too tired to keep your eyes open but too nauseous to close them. Luckily, we have drugs that can help, and Ativan did the trick and I was able to get some sleep. I didn't take enough Zofran to start, which left me having to play catch-up with the nausea. It's never good to play catch-up and I didn't get ahead of the curve until Tuesday afternoon. I learned my lesson for next time. The cytarabine hit me harder than anything during induction and my nausea and fatigue increased to levels that reminded my of treatment in 2012-2013. It didn't help that I came in with a cold virus that I had been battling since the middle of last week. By Tuesday afternoon, my fever was 103 F. Being immuno-suppressed, fevers are taken seriously and not knowing what was causing the fever ("its likely the virus, but it could be something else"), the docs had to order the usual combo: bacteria cultures, urine analysis, nose swab, and a chest x-ray (fortunately, all that came back was that I had a cold virus). The chest x-ray was the coolest because it was a portable machine that a tech wheeled-in to the room and took a picture while I stayed in bed. The digital x-ray showed-up instantly on the machine's screen.
Thankfully though, I didn't have any major complications, and I was able to be discharged on-time on Wednesday. Now I'm back at home, trying to get over this cold, and preparing for the Asparaginase on Monday. My counts will dip a bit this weekend as the cytarabine takes it toll on the marrow. My energy levels are pretty good right now, even with the cold and fevers, so hopefully the rebound will be quick.
|
Crab birthday dinner |
|
Jeff's bachelor party in Leavenworth |
|
Dad's birthday |
Sounds like a tough start Derek. Trying to think of something humorous to say.... but instead, just thank you for the update and for hanging in there with all processes it takes to get well again. (Mark here - Sounds like you are being exposed, the hard way, to some really far out science. That's cool. And watching The Great Lebowski is always good for the soul. Thanks for the detailed post)
ReplyDeleteBelieve it or not I don't think I had seen the whole thing through, at least not that I could recall! We'll have to watch it again outside of a hospital setting with the proper accoutrements ;)
ReplyDeleteMAN that sounds like some nasty stuff. Glad you're out of the hospital and on the mend from that cold! Thanks for the update. Sending good vibes and non-nauseous thoughts your way.
ReplyDeleteYour updates are so important to us Derek! Glad you are feeling better this weekend and are home.❤️❤️ LOTR rainy day marathon soon!
ReplyDeleteHi Derek,
ReplyDeleteYou likely won't remember me as I only met you twice. Once in Kansas City when we were both visiting friends of your moms at the same time, you were just a little guy. And a second time in Atlanta when I visited during a conference I was attending there.
Your mom sent me a note recently about this latest relapse and so I have come to view your story on this blog. I am utterly impressed by your strength and attitude in facing the trials that have been presented to you so early in life. I'm pretty certain that you likely absorbed some of that from your folks, most notably from ma whom I know much better than your pa. Of course from the outset of learning about your struggles my heart and head have been trying to send the best healing energies your way.
Your early life of good exercise and activity has prepared you for this. Lesser folks, like me, probably would have given up. My note here is simply to bear witness that I gather strength from you and your own efforts to live a life of merit through the hurdles lain before you. I am certain anyone who reads your story will be nurtured towards a better life. So thanks for sharing your saga and wisdom with us. I am hopeful that with all the loving family and friends who have been surrounding you, you will see this chapter through and enjoy a life with Briana that will be a model for others to aspire to.
Take care and stay positive. I'll be following your progress and sending you the healing energies from me and my wife Ellen. Hope to see all the Buchners again before too long. Give my best to your mom, dad and Jonathan.
all good things,
Terry Link (Michigan)