I have had several people reach out as I have not posted anything in a while … well, that would be because I basically have nothing to report, but since I am here typing, here is my latest:
A – Side effects are worse on some days than others. Kinda funny, while I was so happy that I was not experiencing the fingernails / cuticles bleeding / cracking / etc. About a month ago, both of my ring fingers started having issues. But happy to report these side effects have gotten much better.
B. The good ol’ D-Word continues to be a challenge some days. The last 2 days, 7x per day. This really sucks as it totally zaps my energy. But given the patterns I am trying to determine, I am hoping and believing that today will be a much better day.
C. I need to call tomorrow to schedule my next Contrast CT Scan … hoping they can get me in on July 17. I meet with my Oncologist on July 18. This is smack in between a couple of vacations. I get home from Alisal Ranch on July 16 and then fly to Louisville, KY for Logan’s baseball tournament, we leave for that on July 20. I should have more to report after this next Oncologist appt. … or then again, maybe I won’t.
D. A question I have been asked repeatedly, is are the results I have been experiencing as far as the Afatinib killing the cancer, is this what was expected by my team. This is my NP’s response:
Not a silly question. We expect the drug to work and it is working perfectly. You are responding exactly how we would want. If you were not responding then we would say its not as good, but since you are still doing so well on it – we are happy. There is no better than expected because we expect. That’s not to say this is not good, it is perfect. You are doing so well and we are so happy for it. Don’t short change yourself or let this make you feel disappointed, if the drug wasn’t working these past few months then it wouldn’t be as expected. You keep doing everything you are doing because its working, we couldn’t be more happy.
E. Good days vs. bad days … I mostly have good days. Every once in a while, I have days where I think about death … those are not fun days at all. I don’t believe we as humans are wired to think about the end. We are wired to believe we will always be around. Luckily, I have only gone to this dark place once over the past several months.
F. Summer is here … had a great trip with my family to San Juan Island, Washington. Soon off to the Alisal Ranch. Then off to Louisville, KY followed by Nashville. Just trying to have great times with my family. Making great memories! After all, isn’t that what it is all about?
G. Did I mention I hate Diarrhea? Ya, I did, ok, good. Cause I do.
Well, I think that covers it for now, I will try to make my next post more exciting. Thanks for checking in on me. Much love to you all! And of course, F’Cancer!