It is Monday, April 23rd, and I have not taken any anti-cancer medication in 22 days. This should mean that I should be taking pain meds pretty much around the clock, should be having pretty severe pains in my liver area (right upper abdomen), should be having difficulty sleeping, etc. This is because my tumors should have grown significantly during this interim – as they have during each of my interim periods between treatment plans. And while it’s possible that they have grown a lot, I’m guessing they haven’t grown quite as aggressively because my pain has not increased as it has during other interim periods. I am taking a bit more pain meds than usual but as far as pain goes, I am doing fairly well now. The strange back pain I was having has resolved. Thank you, God.
The goal is to begin the next clinical trial I am to be on on April 30th, one week from today. This new trial is one that will attack the PI3 K pathway within my cancer cells. I have a PI3K mutation, and so just as the last trial helped significantly for a time, this too should help significantly for at least a time, because we know I have a mutation here.
You may recall that last time we talked I said I would be starting a trial that attacked both the P and the B mutations that they know I have. Well, that trial is still in the backpocket as another option to try when we’ve gotten all we can out of this trial (the P only). The reasons we are doing this P-only one first are: 1) it had an earlier slot opening so I could start treatment again earlier and 2)if we were to try the other trial first (attacking both B and P) then we would lose this P-only one as an option because of their trial’s exclusion criteria.
The new trial is also an oral medication. The side effects are essentially the same as the last trial I was on, which is definitely good news. Also, my friend who is a brilliant geneticist (doctorate level, works in research at Vanderbilt) told me that the P pathway is a really strong one, stronger than the B pathway. She thinks it is probably the one more responsible for the rapid growth of my cancer and more responsible for its stubborn nature, refusing to be killed.
I will have to spend significantly more time at Sarah Cannon. I will have to be there at least once a week for a couple of months, and some of those times I will be there for very long days – as in 8-10 hr days. This is so they can draw labs throughout the day, etc. It doesn’t mean I will be hooked up to machines or to an infusion pump for hours at a time. I am thankful for that. It might mean I get a lot more writing done, as I will have to pass the time doing something!
My geneticist friend tells me I am on the cutting edge of cancer treatment. This is the newest stuff, the cutting edge, and I am reminded how thankful I am to live in Nashville, TN. When I am at Sarah Cannon (SC), I am one of the few from here in town. In fact, most of the nurses and schedulers assume I am from hours away, because that is the case for most of the people being treated there. As we discussed what trial I would do next, the research nurse and doctor were careful to explain the differences in how much time I would be required to be at SC. I listened politely but then assured them that is not what I would base a treatment decision on. They said, “Yes, not for you, but for most people we see who have to arrange airfare, hotel stays, etc, it is a big deciding factor for them.” I am so blessed to be here. I have to be away from my family so very little in the grand scheme of things. Thank you, God.
This week I will be completely busy all Wednesday and Thursday doing preliminary testing to start this next trial : echocardiograms, EKGs, fasting and non-fasting bloodwork, eye exams, skin biopsies, etc. We are trying to get everything done so that I will be able to start next Monday.
So how am I feeling now? Mostly pretty good, all things considered. I have pain in my abdomen when I breathe at all deeply, when I yawn, when I laugh, when I twist, when I stretch my shoulders back. I am very sleepy a lot of the time, and seem to hit a wall about 5 o’clock every day where I just cannot keep my eyes open. I am mostly still very hopeful that this is all going to be completely healed one day, but I have times where I get very distressed and down. More on that later maybe. Every morning and every night I put my face to the ground in the most humbling position I feel I can get in, and I beg. Most of the time I beg through gushing, body-wracking tears, for God to have mercy. For Him to allow me to stay here for my boys, for Him to spare them the pain of losing their mommy. For Him to spare Brian the pain of losing his wife.
Then there is also this:
(that’s a quarter on my leg)
And yes, this all itches like crazy. Like CRAZY.
The dermatologist determined by biopsy that this is dermatitis, and said that basically means it is an allergic reaction. I praised God that it wasn’t more serious. He said he wanted to just “watch it for awhile.” No one seems too concerned with figuring out what I have had a reaction to. And as I think back to when it started (which was sometime in the last week of March), I can’t figure out what it could possibly be. He said it was a very atypical presentation of dermatitis. I said “Welcome to my life.” Nothing is simple or straighforward with me. And if I’m going to have a skin issue, I’m going to have a big one. I don’t do anything half-way, huh?
So now you know the latest. I hope to be starting a new trial next week, which from the outside will look a lot like the old trial except for more frequent and longer hospital visits.
Please pray that this skin issue miraculously resolves and does not complicate or prohibit further cancer treatment. Please pray that my body responds well to the new drugs, and of course mostly that the cancer is killed by the new drugs. Please pray that I will continue to find meaning in each day and will not have to search desperately for a reason to get out of bed at all, as I had to today.
Please pray for Jesus to just come back and get us. I am so ready to go Home with all those I love.
As always, I thank you for caring enough to read and to pray. I know your prayers are holding me together.
My heavenly Father,
You never give up on me, and I refuse to give up on you. I know you are wise beyond my understanding. I believe that you are good, that you are love, a deeper love than I could possibly understand based on our weak human version of it, and that you bless those who love you. I do not understand anything about my life right now, but I am thankful you don’t ask me to. So instead of thinking about my misery today, I will count my blessings. I will tell you as many things as I possibly can today that I am grateful for: for the sunshine, for my car, that there is gas in it, that I don’t have to worry about my next meal, that I don’ t have to worry about pain thanks to pills, that my boys are happy in their safe, nurturing schools and that I don’t worry about them while they are there, that my husband has a good job and I don’t worry about his faithfulness to me or to You when he is away from me…
This is where I will put my mind today. I love you, God, and I love you, Jesus. To the moon and back a billion quadrillion times…