I have some really great in-laws. They are working fund raisers in South Texas with lemonade stands and selling lymphoma bracelets that read “love is greater than cancer.”
My “logo” I wanted to use is LOVE>cancer, but the printing press won’t accept “special” characters, specifically the > sign. That’s ok. Found out that neither does Youtube when I tried to make a video by the same name.
Taken during the 2014 Fort Worth Main Street Arts Festival
The video that I am going to link in this blog entry was created for the South Texas fundraiser. I put it out on Youtube rather quietly on July 28th, 2014. Although this video is intended solely for the purpose of the South Texas fundraiser, I decided to go ahead and bring it to everyone’s attention who is following this collision course with healing that I am on. I created this video while undergoing round #2 of chemo.
A quick health update. I am doing well the week before entering the hospital for round #3 this Thursday the 14th. I have an oncology appointment today and will ask my oncologist for some more information regarding progress, plan of action, and so forth.
A pattern is forming. I enter for each round feeling half human. They hit me with massive steroids. My sugars escalate out of control. I am not diabetic, not even close. My dietitian who met with me told me that I could eat a leaf of lettuce a day and still have sugars out of control since it is hormone induced (steroids). I shake and stay awake mostly. They infuse chemo 24 hours a day for 6 days until completed. Then I’m sent home to detox from the steroids, and descend into the “nadir,” or low point, after chemo. I get weaker, sicker, mouth sores hit, nausea, bone pain begins from the Neulasta injection, and that really nasty low point lasts from 2-4 days. Then a slow rebuilding occurs for the next round.
I’m hoping my tumor is shrinking and responding to the chemo, but I have nagging thoughts. BEFORE YOU FLIP OUT, please read the following carefully. It is quite possible it has already died and has settled into this tangled mass of dead cancer cells that shrink a little from the steroids, then expand back to baseline size after the round of steroids. I have heard numerous times on the Burkitt’s Lymphoma Society’s private page where we spill our guts that what was thought to be a recurring tumor or non-responding tumor (to chemo) was in fact dead cells. I can live with dead cells. They just die in place, clump together, and the body slowly dissolves them over time. The only real method to know for sure what they are is to do a biopsy of the cells and look for dead cells Vs live cells.
I’ve only gone through two rounds of chemo, so bear with me on this. I might have to do 3-4 before the tumor is fully gone and/or turned into dead cells. If after the 4th round I have a tumor on my neck that has live Burkitt’s cells in it, then the chemo isn’t working as far as I’m concerned. My oncologist might argue otherwise, but Burkitt’s is the fastest growing cancer that exists as far as I know. Chemo attacks quickly dividing cells. When the chemo is working correctly on Burkitt’s, it melts like butter in a hot skillet.
That is part of what I want to flush out with my oncologist today. When can we rebiopsy the tumor? I don’t want to wait until 6 full rounds of chemo is completed to find out the cells aren’t fully responding to the chemo, IF THAT SHOULD BE THE CASE. I would rather know quickly and adapt to another protocol until we kill the dang cancer!
Now you know some of what is going on in my head. There’s plenty more, especially where the stem cell transplant is concerned, finances, the future, my job, etc. I have kept reading more and more about SCT’s. The more I read, the more I dread what is to come. But that’s me. It is tempting to share some of the specifics with you, the legitimate concerns that are bothering me, but I’ll pass for now.
Maybe I shouldn’t read about it so much and desire to know what is to come. But I can’t stop myself truth be told. I guess knowledge is power in some aspects. I can prepare myself for what is to come. But some of what I am reading and hearing from others is hard truth, plain hard truth. It isn’t a fun medical regimen.
My next video, pending nothing urgent arises, will be about the South Texas Fundraiser. Lot’s of neat pics and touch of video from what they are doing. Looks like fun.
Here’s a thought: perspective means much. I can stand at the same place but capture more detail up close, or a bigger picture zoomed out. This picture is from the same location as the first; it is the desire to capture a bigger picture or a tighter focus that makes the difference in perspective. I am trying to capture in my mind the bigger picture of SCT and a tighter zoomed in perspective. Either way, I am looking from this one place in time at a future event.
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Taken during the 2014 Fort Worth Main Street Arts Festival.
Same photo as the header, but not zoomed in as close. Brings more perspective, doesn’t it?
Here’s the link to the video I mentioned titled “Testimony of Your Love and Support.” How’s that for an original fresh (corny) title. **sigh**
(note: wordpress, the site I use, is very irritating to me. I hope to work out the details, but the simplest of things like linking a video are so frustrating. The link doesn’t show, -or- it links to the wrong video, -or- it wants to do a “playlist” of all my videos. Aaarrgh!! Rant over.)
If you would like to see the video, please click on the “Video” link in the menu. Then look through my videos for the one with the word “testimony” in the title.
Thank you all for reading and supporting me and my family during this difficult time.
Walking Through This Together 