Thought everyone might appreciate an update. It’s really a nothing-much-has-changed kind of update.
- Things generally remain good
- Side effects like muscle and joint pain make me cranky and have led to some not-so-good days; I’m allowed to take Tylenol but am reluctant to do so or do so very limitedly as both tylenol and palbociclib metabolize through the liver
- Fatigue from the radiation is real; I was telling my medical oncologist last week that it’s hard to know if the fatigue I’m experiencing is from the medication, the radiation or the insomnia, or all three; the doctor confirmed radiation fatigue very likely
- Insomnia had gotten really bad; medical oncologist recommended melatonin; and it’s working!
- Had my eyes checked on Friday; I have the start of cataracts and they are only visible to my optometrist (in other words, very negligible at this point) and they won’t progress all that quickly (so she told me); caught me by surprise, as did learning that my vision has improved! So I absolutely had to replace lenses as what I have are too strong and are not working well for me anymore (I’m still the master of understatement!)
- I swear I have more appointments and tests (bloodwork, CT scan, bone scan, MRI) than I think I had the first time around; next appointments are—
- Mid-cycle palbociclib bloodwork on Monday (= needle)
- End-cycle palbociclib bloodwork in two weeks (= needle)
- Whole body bone scan (= needle) and medical oncologist follow-up July 28
- Brain MRI brain scan with contrast August 16 (= IV needle)
- Radiation oncologist appointment August 17
- Chest/Abdomen/Pelvis/Head CT scan with contrast (= IV needle) August 22
- This an image of my bullet journal (what I use to track everything going on as well as other stuff)
- I asked how often I would have scans (as they help determine if the drugs are working, slowing growth and even shrinking it); the answer is every 3 or 4 months [August is the first 3 month mark]
- Bloodwork monitors platelets, white blood cell count, and tumour markers level; I have to be more cautious about interacting with people during weeks 2 and 3 in the palbociclib cycle, when my immune system is CRAP; I’m told after a few cycles of palbociclib that the mid-cycle bloodwork will stop
- I have serious scanxiety right now; what if I have progression? FLUFF, what if there’s progression?!
- I’ve gone through every conceivable emotion possible
- I’m so mad that I made it so long, that I thought I’d beaten this fluffing disease and here I am fighting against it again
- Why bother doing anything…EVER?
- I’m okay if I die; we all die
- No, I’m not okay with dying
- I’m so scared and I don’t want to do this anymore
- I might as well live each day at a time and be part of life rather than waiting
- I will say that I’ve come a long way; right now I feel a sense of freedom; my life has been so simplied as a result; time is precious
- The only real things that matter are love, time together and being kind
- My most emotional day recently was going in to the office and cleaning out my personal items, as I turned to shut the door I started to get emotional but other than watery eyes, I held myself together
- The only reason I want to mention the office is because of how weird and eerie it was to walk into a place devoid of life, no noises and absolutely no sense of activity (though there was one co-worker in the office on the other side working on a scanning project, I found out as I was leaving)
- It was seriously like walking into a building in an apocolyptic world; I have watched WAY TOO MANY zombie apocolypse shows/movies
- My “hug” offers great comfort, around my shoulders almost every single day as I wind down before bed
- As you can clearly see, hair loss is happening; my time frame for hair loss apparently wasn’t in the first 4 or 5 weeks after all (the second picture was taken after a shower and before I combed out my hair)
- Vince informed me that I also have patches at the back (at my crown)
- My current hair style actually lends itself to hiding the gaps; still not rushing to shave my head
- I’m not sure why I’m determined to watch myself go bald. Is it denial? Curiosity? Both? Something else entirely? It’s tiring psychoanalyzing yourself.
- It just is what it is
- And oh yes, hats are now being worn in public
Live. Laugh. Thrive.❣