Well, Party People….all good things must come to an end. I don’t regret taking a swing for the fences and enrolling in the medical trial at USC in Los Angeles. Through it, I was able to significantly reduce my tumor burden, improve about 5 of my cancer markers (which puts me in good shape as I enter the next chapter on this journey), and most importantly, drastically improve the pain that I was experiencing this past Spring.
What it boils down to is that the trial was an immunotherapy cocktail of two, very long complicated medical names, abbreviated as “bot/bal” – “Bot,” in addition to being a workhorse/powerhouse of a drug, is very toxic to the system. From my first dose, I had a pretty extreme reaction to it. I (stupidly) reported all my side effects to my USC Trial Team and they were very trigger happy to pull me off of it. And I knew it the first session that I did not get “bot” - - I said to my trial team “What if it was the one doing all the work?” And they tried to calm me down, placate me and tell me everything would be fine and that an average person only needed a couple of hits of “bot” for it to be effective.
Well, my last 4 visits out to Los Angeles, there is this one particular blood test that they run and it’s been creeping up and up. This past Monday, it significantly jumped. I mentioned it to them, and they finally nodded and confirmed that I had a right to be concerned….that it was concerning. Meaning that doing just “bal” was no longer good enough. It certainly has felt fruitless, paying all this money for airfare to fly out to Los Angeles every other week, to only be there for an hour infusion of just half of the cocktail.
I’m not necessarily back to “Square 1,” but I am quickly investigating if there is any other place in the US that I could possibly get “bot”….and then there are other modalities such as traditional chemo (which I do NOT want to go back to – I’m just starting to feel “normal” again after 2 years of chemo – please note picture - - - the hair has returned…curlier and thicker than EVER!), radiation (which would be challenging, given the location of my metastases. And then there is the very small possibility of future trials. I am in a good place, lab-wise, to submit my information for future trials – so I can’t say that the USC trial didn’t do anything. It did. It gave me time, which is oh-so-precious.
In other news, my 80-year old mother has been diagnosed with dementia, and I’ve been trying to go back to Arkansas as much as possible to take care of her (she refuses a caregiver, of course, and actually refuses my help, as well – she won’t even consider moving to PA to be closer to me so I can help her – not that I would have the bandwidth). This is really all too much for one person to handle, I will admit. I am so lucky that my husband, Kevin, the love of my life, is my rock and we have a strong extended family network. And my friends are so very wonderful to me. Especially Rachael and Lauryn, who I video chat with daily. Without them, I would not be sane (which it’s questionable if I actually am “sane” right now).
My work is going well – I am busy. My golden retriever, JAX, is 4 years old and is the light of my life.
It’s not over until it’s over, and at least I am in good fighting shape to get back into the ring.
P.S. I have now watched “The Life of Chuck” on two American Airlines flights and I must FULLY ENDORSE it as one of the best movies I have seen in ages. Please go watch it. It was turned into a screen play based off a short story by Stephen King – true story! Just like Shawshank Redemption was!
Prayers, good juju and positive thoughts always appreciated! xo
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