My friends on the path,
Yesterday was the last day of my first 28 day treatment regmine. The first consisted of three different chemo drugs; vincristine, peg-asparginase and daunomyacin. I only got one injection (in my butt) of the peg-asparginase, three of the vincristine (it was stopped because it was doing too much damage to my nervous system, and all four of the daunomyacin. I have had all three of these drugs before last time. I also took prednisone, which is a sterioid (yes I am huge now), but I am starting to taper off from that today (prednisone is used for lots of different things, but one thing it does is to prevent some types of tumors from growing, which is a good thing (although leukemia is considered a 'liquid' tumor, solid tumors can form in certain places, like the pancreas).
Since it was the last day of the first stage of treatment, they also performed a bone marrow biopsy. Despite all of our advancments in medical technology, this brutal procedure is really the only way to how much, if any, leukemia is still left in my marrow.
The procedure starts with them giving you some premeds, versed and fentanyl (spelling?), one is pain blocker and one just makes you cool. Kind of like 'whatever you want to do, go ahead, baby'. After these have had a chance to take control, and it takes a lot for me, they flip me over on my stomach. They take to biopsy from the pelvis because it is the closest bone to the surface of the skin, thus easiest access. So they clean the site up the inject a whole bunch of lidocaine into the skin, pelvis bone and membrane surrounding the pelvis bone. After this has had a chance to take effect, they start the drilling. When I first heard this, I thought electric drill and imagine something out of the too many horror movies I have seen. However, it is long thingy that they almost corkscrew into my pelvis. They then pull out a core smaple of the pelvis bone. After this they aspirate the bone marrow, which means they suck out some of the juice. Surprisingly, this is the most painful part of the whole procedure, as my mother's hand would likely confirm. That is just about it, they clean me up, put a bandange on, and I am done.
I have not recieved any news yet. The full report takes several days, but my doc is going to look at some smears and try to get an early estimate to see where we go from here.
There are four basic things that can happen from here. I could have more than 20%leukemic blasts in my marrow. This is worst case scenario and highly unlikely. This would require a whole new prespective on my outlook.
Second, I could have somewhere between 10-20% leukemic blasts...this would likely mean more of the same drugs I am on now to get me to below 10%.
Third, I could have less than 10% leukemic blasts in my marrow, this is the second to best scenario. This means we go ahead with the second phase of treatment, called intensification. This is another four week treatment plan using three? different drugs, one of which needs to be injected directly into my spine!! Oh yeah, it is that fun! This would be the right path to go to go for my cordblood transplant.
Lastly, I could, possibly, have 0% leukemic blasts in my marrow. This, of course, would be great, but I beleive the treatment outlook would likely look the same. So, most likely I will be here for another 4 weeks.
If my marrow looks good I would likely start the new treatment today or tomorrow, I will let you all know the results and future as soon as I know.
I hope all of you are in good health and enjoying the outside.
I love you,
JJ 'the magical monk in 519'
3 comments:
Hi JJ - I've never done this before so I'm not sure if this will get to you or not. My name is Peg - I work with your mother at Children's. I am fascinated with your journey. I started at the beginning, and knew immediately that I wanted to write to ask you how you made the decision to undergo more therapy in the face of all that you'd already experienced. Then, you answered all that before I had the chance to ask.
I want to thank you for the clarity with which you express your experience. Although I've read many accounts of cancer treatment, they are all either post-mortem or past experiences of people who recovered. This is the first time I've ever had a chance to potentially communicate with someone in the process of this experience, honestly and openly facing death. Openly and honestly making the decision to fight it, and to share the fight with others.
I've done a lot of reading lately about death - specifically the Tibetan understanding of what happens through our living, our dreaming, and our dying. If you are game, I would love to be able to write periodically with questions, the answers to which could be put on your blogsite or back to me - which ever seems most helpful and reasonable. You offer a window into a realm I can, at this time, only imagine.
At any rate, I'll be watching this site and holding you in my awareness. Thank you so much for sharing your experience and your insights. Peg Tuthill
PegI love to have a coorespondance with you. I am currently in the middle of reading the Tibetan Book of Living and Dying by Sogyal Rinpoche...wow he is amazing. If you want I can add you as a author.
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