I’m at Day 5 now and I suspect this is what it means by your chemo cycles being predictable but also cumulative. I have the same side effects: nausea, loss of appetite (unpredictable taste buds not helping), fatigue, weakness, throat sores, and the never ending cycle of constipation and diarrhea and, of course, bone pain — but in many ways it’s worse probably because I have a little “ptsd”/trauma recall from the first cycle. I am feeling pretty queasy and weak (down 8 lbs since Wednesday which I’m certain I’ll be able to gain back over the next 2 weeks as I recover). In fact I am writing this from my notes app on my phone I’m a bit too tired to be in front of my laptop. I have some text I’d drafted and some I’d already posted on my IG… I’ll add/edit more when I feel a bit better.

Infusion day was Wednesday 9/28. I don’t know why I was stressing about my numbers not being good such that my infusion would have to be delayed. Of course this anxiety was making my blood pressure spike which would have made it even more likely my chemo would have to be postponed if I didn’t pull it together! But I had some good news too: I meet with my medical oncologist the morning before chemo and she does a pretty rudimentary measurement of my tumor and she confirmed what I thought may be the case. The tumor shrank after just one chemo cycle! She had roughly measured it 5×7 cm before chemo started on 9/9 and yesterday it was roughly 5×4.5 cm. Obviously we’ll do actual scans after the 6th chemo cycle, but just knowing there’s a palpable shrinkage makes this all worthwhile. Because chemo really sucks, you guys. I haven’t had a public cry since this whole cancer diagnosis, and this news was worth a public cry. Or better yet a cry on a friend’s shoulder.
This isn’t to say I don’t cry — I certainly did a bit more that night and a little bit here and there since. Everything is feeling a bit overwhelming. Dealing with the side effects of chemo can be exhausting and frustrating. But despite all that, I can’t lose sight of the important: I am very lucky to have all that I have: access to medical care that isn’t just world-class but also at such close proximity to my home, the continued capability to make a living while under treatment for cancer; medical insurance that while can be frustrating to deal with covers a great deal of my treatment; being so fortunate to be fairly healthy as I undergo treatment; and having a strong and growing support system of family, friends, colleagues… I am so grateful to all of you for the words that give me strength, and for those of you who are able to and do make the time to visit and offer help, or those of you who have sent me gifts (esp the ones from my Amazon chemo shopping list)… I see you and I feel you and for that I am so very lucky.

WIGS!

On the evening of my infusion, I shaved my head about as short a buzz as I can after 5 days of contending with so much shedding and scalp pain. So it was time to let go and live. (It’s not quite for public viewing yet. It’s still patches of stubble with patches of lily white bald scalp. It also feels quite sensitive and really cold so my sleep hat — a super soft bamboo material with some spandex— stays on full time.) I purchased some cheap fun wigs and have been gifted a couple (another ombré black and turquoise one not pictured). There’s another one that I did get fitted and ordered at the UCSF cancer center mini wig salon that’s still yet to arrive. That one is a higher price point. I have a wig prescription from my doctor (insurance speak “cranial prosthesis”) but my insurance package does not cover it.
All the wigs are synthetic. I can’t justify to my wallet paying a lot for real hair wig. And besides hats are doing me well right now. So much more comfortable since a wig cap still kinda hurts to put on with the remaining hair.

…And now, some real talk…I know folks mean well, but I do not need any convincing that I should rock my bald head look or it’s an opinion that bald is beautiful. It’s a personal journey and while I’m not seeing my bald head and mourning or hating it (I’m relieved, actually), it can be a challenge to drown out the chatter of how I should be feeling. If you never see my bald head it may or may not mean I’ve not come to terms with showing it. Or if I start “rocking it in public” doesn’t mean I hadn’t felt good about it before. Or it’s brave when I do. I may have said similar things in the past and meant well, but now that I’m living it, I realize how it can feel being on the receiving end. Thank you for understanding!

When in doubt as to what to say, humor works!

But I will end on a loving note to all of you who have been so supportive and positive and sending me so much strength and comfort. I realize it can be tricky to navigate but the bottom line is even when I say this is how I prefer things said/not said there is not a single message I’ve received that I did not receive with the love that was intended.