We got my new chemo regimen settled last week, but I haven’t had a chance to start it yet because the infusion center didn’t have a chair available for long enough until this Friday. I’ll be there for 7 hours, reading and napping and watching my way through. Part of why it will take so long is that most patients have an allergic reaction to my new drug the first time they take it. So they preload me with Benadryl, wait for it to kick in, start the drug, watch for anaphylaxis, give me more Beneadryl, wait for me to get better, and then start the drug up again, continuing until we get it all in. For most patients this only happens the first time, so fingers crossed. I am definitely not looking forward to it. I’ve never had an allergic reaction before and even though I know my nurses will be watching me closely, it is intimidating to know it will be coming.
Other than prepping for my new regimen this week has been about pain. My pain levels have been increasing for a while and have yet again reached the point where it’s constant and really interferes with my sleep. I am dealing by taking every pain med I can safely take together, timing things so I get the biggest help overnight when it hurts the most and I need sleep. It is frustrating to once again be in so much pain, especially when I don’t know what caused it, just that it’s related to my ongoing chronic pain in my ribs, and that I can just set it off and then spend months suffering. I’m back at PT which has historically been my most effective treatment, but that will take a while to kick in and fix things.
I have also been spending this week going through the resources I brought back from CancerCon. I knew that would be my most valuable asset from the trip, and it is good to go through it and find programs that I think could be helpful. One recurring theme is that there are opportunities to write and share more of my story in other venues and it’s something that is feeling really appealing right now. I’d like to be braver and go deeper into what is happening – not just report the highlights but really share more of the true and ugly. So I am pondering topics for different venues and trying to work up the courage to start contacting people.