I’ve been asked by my support team to request your prayers…
Starting the clinical trial has been logistically much better than expected, but by Thursday of the first week (last week), I started having some side effects, including a skin rash, mouth sores & tongue swelling, and sporadic pains.
None of them are horrible, a couple concern me, and as I was reminded, this is why we have phase 1 trials, to try to identify and mitigate possible side effects.
I continue to learn about clinical trials and a bit about myself and life.
Have to be honest
I’ve been told that I often underreport my side effects or pain. I think this can be true.
- Sometimes out of pride that things can be difficult
- Sometimes out of fear of being taken off chemo
- Sometimes with a perspective of how more difficult things could be
But I was reminded that part of the purpose of these early phases is to determine toxicity for potential future users, so if I withhold or understate my reaction, that information could have been helpful for the trial.
Have to be humble
Similarly, I don’t want to ask for prayers because
- Sometimes out of wanting control and to not have to ask for any help, including God’s
- Sometimes I don’t want to alarm people with what may be a passing thing
- Sometimes out of pride that by myself I’m not enough
Perspective
My tongue has been swelling and sometimes it’s awkward to talk. The body aches are uncomfortable, and my neuropathy makes me shuffle when I walk.
Exhibiting all these things, when I approached my car the other day, I defeatedly said, “I hate my life.” I immediately started laughing and verbally said (to no one there), “That’s not true! I just don’t like some things happening right now!” and continued to chuckle.
Honestly? Life isn’t that bad. Even with the situation I’m in, and as tempting as it is, I don’t need to find someone else in a “worse” situation to feel better about my own.
I have some side effects because we’re trying to find a medication to help hold this cancer at bay. It may help me, and the research could help others too.
Life is not that bad
Please pray for:
- Strength for each day as I go through this trial
- Wisdom for my doctors as they monitor the treatment and work to manage the pain and give me some relief from the side effects
- That these side effects are only temporary and in time, we will see a positive response and the trial will prove to be effective
Bobby
I’ve been thinking a lot about my friend Bobby who passed away from the same disease. Early in my diagnosis, Bobby started on a phase 1 clinical trial. It was rough on him. He had rashes and skin problems that still make me respect that man to this day. But he stuck it out, and the drug did very well in extending his life for over a year.
It was so honest and encouraging talking frequently with someone going through a similar situation. Bobby was brave and confessed his weaknesses to me and to God. It was easier to admit I was scared with someone equally challenged and faithful.
Today, that very drug where Bobby was on the cutting edge, is one of the greatest hopes for our disease. It has performed very well in many patients including Bobby, and it has continued to improve with time. There are numerous people who have benefited from early trial participants, and I was best buds with one of them!
So whether it’s a medical benefit when this drug gets released in the coming months or just knowing that I stood on the same ground as someone who used his strength to be vulnerable, this encourages and gives me hope as I go through this clinical trial.
Thank you so much for your prayers – they mean a lot to me!
P
