Some of you have asked whether you can share this blog with others. Others of you went ahead and shared. Please feel free to do so without asking — I would be delighted if it would be helpful to others, and as I mentioned before, because this is a rare cancer I’ve decided to be very public with it, which has been helpful to me in getting to the right specialists.
And side note: I mentioned that I get chemo brain after my infusions, and my portable infuser just finished piping some drugs into me a few minutes ago, so please know that we are heading into the dumb days again and forgive any typos, errors, conspiracy theories, etc.
You could probably tell from my last post that I was ready to get rid of the pixie.
My hair started coming out in clumps in the shower. At first it was a like a little game — I would run my fingers through my hair and see how much hair come out with each round. But there was always more hair, and I could have stayed in the shower for hours, so I got out and then as an experiment, blow-dried it — dandelion fuzz everywhere. I knew it was time.
I ate a last snack with hair — these beet puffs are really good if you’re looking for something crunchy — and then headed up for the shearing.
I had a debate as to how to approach it — do I make it public, and invite friends? Or do I keep it private? I decided on the latter. I wasn’t sure how it would go, or if I would (as I deeply suspected) have a deformed head, and as it turned out, it felt like an intensely personal experience.
I thought I was ready. But when we started shaving it, I got really sad. Not because of the hair — I was really ready to let that go — but because of everything else: that my husband had to shave his wife’s head (though he is uniquely qualified in that regard); that I would now for sure look like a cancer patient — sick, vulnerable and exposed; that my kids would be embarrassed to have me around their friends (then again, they’re teenaged girls so that could equally happen with hair). I thought of our wedding vows — all that in sickness and health stuff — but I always assumed it would be more like, you know, the flu.
I was pretty upset about the shearing all night. But the next day, I got up, put in contacts, brought out my arsenal of makeup, and took a good look in the mirror. I’m happy to report that my head is in actuality not deformed. And you know what? I think I actually look better with my head shaved than with a pixie, and I feel kind of fierce!
I answer the door all the time now with my shaved head. A sweet friend sent me a collection of her grandmother’s scarves, so I’ve been having fun with those too, and with my killer collection of hats from friends around the country. Balds have more fun! (That thing on my neck is the tube of my chemo port, in case you’re wondering.)
I had my second infusion yesterday, and it was rougher than the first — to be expected. The infusion process itself was kind of fun since I had two of my guardian angel friends visiting (which is more than recommended, but it wasn’t that crowded that day at the center and we had a nice time!), but once I left, I started getting stabbing pains in my hands, as if someone where knifing me repeatedly. I went back inside to talk to the team and they told me to monitor. Afterwards, I noticed that my palms were covered in dark purple capillaries — just like in the movies where some guy ingests a magic potion and turns into either a superhero or a monster. I’m hoping for superhero.
I’m definitely more tired this time around, slept most of today, and didn’t feel so great last night. But two infusions done!
My mom is still in the hospital with a lung that leaks. As I write the doctors are conferring about what to do. More surgery? Other options? She’s been in the hospital now for two weeks, so if you’re the praying type, please keep her in your prayers.
Her pathology also came back as a Stage 2, so once she’s released from the hospital, we’ll get some opinions on any follow-on therapies that might be recommended. But for now, I’d love for her to be able to recover and to go home, where I think recovery happens best.
The bright side
On Sunday, we made a pit stop and dropped our knives off at a farmer’s market, where there is a Japanese guy who is the only one to whom I trust my Japanese knives (and is also a small enough market there weren’t too many people around, so I was able to take a quick wander). As we arrived, a woman handed me a sunflower bouquet. The sunflower is the official sarcoma flower. Of all the bouquets she had, she handed me this one!
I was also able to pick up a few fresh flowers, since this is an ok-for-flowers week, and I got some sweet peas and ranunculus which I love.
Earlier in the week, I dropped my car off for its 45K mile service. And guess what — it was right at 45,000 miles as I pulled into the service area! I was pretty proud of that, though no one else seemed quite as impressed.
May unexpected coincidences bring brightness to your day.