When I was a kid, I would often almost get what I wanted for Christmas. You know, if I asked for Barbie, I got “Darcy”. Or if a Monchichi, I’d get some other simian derivation. So when I heard that when we went on a family trip to Taiwan that my uncle was going to get one of the cousins a Cabbage Patch doll, I was beyond thrilled.
On the much-anticipated doll-distributing day, true to my life story, I arrived to find that instead of said Cabbage Patch dolls we were each given a life-sized, realistic Prince William doll. Luckily for us Prince William was a newborn (an adult-sized Prince William doll would have been infinitely more disturbing). I soldiered on cheerfully carrying my infant Prince William doll with me everywhere I went, until his blinking eyes were no longer in synch and, one-eyed, would stare at me whenever I entered my room, contributing significantly to my lifelong battle with insomnia. (I know my audience — please do not suddenly flood my mailbox with Cabbage Patch kids 🙂 ).
All this to say that I can’t believe his little brother just got married.
In 1981, I woke my brother at the crack of dawn and we ventured into the basement to watch coverage of the wedding of Charles and Diana. In 2018, I didn’t do that (but one of my kids did). Instead, I scrubbed through video footage afterwards pretending to be a royal wedding guest while in actuality wearing my “I only like NY as a friend” t-shirt, and cried (probably poisonous chemo tears) every time Harry cried or was about to cry. Sometimes, you just need a good love story with pretty dresses, inventive headwear and flowers to keep you going.
For the past few weeks, I hadn’t felt like writing about cancer. So I’ve been doing other things, like watching the royal wedding, celebrating our own 17th wedding anniversary, running errands when I could, and work got really busy — it was nice to do normal people things for a while.
That’s what I’ve been telling people how I’m feeling since I got my fourth infusion. It has definitely gotten harder with each one — more symptoms, and even the infusions themselves are a little harder to stomach — but I think of all the little kids with cancer who just go in and get the job done — and they push me along. I can taste and smell the drugs as they go in, and it stays with me for a week, seeping out of my pores and my very being. With the loss of every eyelash I feel a bit of my humanity is pecked away, and some days, it’s hard to remember that I had a life outside of chemo. Such is the price of shrinking a tumor.
I am getting better at it. This time I brought a cold compress and held onto it when the dacarbazine went in. I’d hypothesized that the stabbing pains I got afterward were due to the drugs circulating into my hands…and the cold compress experiment worked. No stabbing pains this time! Sucking on ice chips during the Red Devil infusion seems to prevent getting mouth sores. And I eat lots of probiotic yogurt during the first week, which seems to help with the digestive tract issues.
As my friend Alison, who was captain of the first American’ women’s Everest expedition, posts about her climbing experience: “I would love to be one of those people who could say that the climb ‘wasn’t that hard for me’ and that ‘I felt strong the entire time’ and that ‘I knew I would make it.’ But I doubted myself constantly, was never very fast and was never very strong. But here’s the thing you guys: You don’t have to be the best, fastest, strongest climber to get to the top of that mountain. You just have to be absolutely relentless about putting one foot in front of the other.”
That pretty much sums it up. Next scan: June 11.
Some people tell me that they don’t know what to say to me, or do to support me. I get it. I wouldn’t know either. And it’s so personal — I read about folks who give advice like “just show up!” and that would actually be my own personal nightmare — please do not just show up. I want to have eyebrows on when you get here. A friend suggested it would be helpful for me to share some information on what would be helpful. Feel free to comment with any other questions too.
What do you wish I knew?
This is a really strange time for me — a time where I am uncomfortably amassing a huge social debt that I know I can ever repay. I want you to know that in whatever way you are dealing with my diagnosis, I appreciate it. The depth of my gratitude is in no way reflected in the length of my response or the frequency of my contact. Know that I receive and value your messages even if I don’t respond right away. Give me a pass if it slips my mind and I don’t respond at all. And if your way of dealing with my diagnosis is that you just can’t engage right now, that’s ok too.
Best thing to do is to have low expectations of me. I might cancel plans if I’m feeling crappy. I might not respond if I’m too exhausted. I’m basically going to be the worst friend ever while I’m going through this.
What’s the best way to contact you?
Short form communication is great. If you write a comment on my blog, I see it and know you’re thinking of me — and that gives me great encouragement without requiring a lot of energy on my part (when I “like” your comment, I really mean it!). Texts are good, but know that sometime I fall behind on them, so please don’t be offended if I don’t respond right away. Emails work, but again, it can take me longer to get through all of them and to respond.
Phone is the mode that requires the most energy from me. I’m not opposed to talking on the phone, but it is definitely the most taxing of the modes of communication…and I need to be in the right mindset to be able to do it. But know that I listen to your voicemails!
Basically, reach out any way that you’d like, but if you can be generous about allowing me time to respond, that gives me time to rest and recover.
What do you want to talk / hear / read about?
I get out so little nowadays that I want to engage with anything that helps me feel like I’m still a part of the world. I want to hear about your everyday life. I want to know what delicious new thing you found at the grocery store, or the best new comfy pants you’ve found on the market. I want to see the details of Meghan Markle’s dress and flowers, or know what people with hair are doing with it nowadays.
I want to look at beautiful things. I want to hear about astonishing developments in technology. I want to see the worst memes on the internet. I want to laugh.
I’m not clamoring to snuggle up with books about death, or mortality, or suffering. I don’t want to talk about cancer all the time, or even talk about me all the time. I’m not ready to hear about your courageous friend or relative who lost their battle with cancer.
Can I visit you?
Yes, but see above. I may not have the energy to be engaged for very long. Here’s a proposal that some lovely friends put together that’s perfect in so many ways:
The bright side
I’m about to post some pictures, and I must divulge that most of them involved drag queen levels of makeup. Most days I look like crap, and I don’t have the energy to put in the effort to either put mascara on my two remaining eyelashes, or put fake ones on.
These arrived on my doorstep a couple of weeks ago:
I don’t know what it says about me, but I feel most like myself in the blue and pink wigs — more so than in wigs that are supposed to look like real hair. I wore the blue one for a work videoconference, which amused me (and only me) greatly.
One of the moms on our volleyball team is a photographer and kindly offered to come take some family pictures for us. This is great because just recently one of the kids asked me to send her pictures of the two of us together, and I realized that there really aren’t that many — because I’m usually the person behind the camera. For that photo shoot I decided it would be fun to have hair, and eyelashes, and even though by the end of the shoot my fake eyelashes were falling off and part of my eyebrow was erased, it felt good to look like a normal person again. But the blonde wig is really hot and sticks to my face, so not really practical for me on a daily basis.
Which brings me to this: there are a category of wigs called halo wigs, which have hair just along the sides — like so:
I have one of these wigs which we dubbed the “Benjamin Franklin” — and obviously, you have to wear a scarf or hat on top for it to look like you have a full head of hair.
I have this fantasy that I’m going to wear the Benjamin Franklin the next time I fly, and when I go through security TSA will invariably ask me to remove my hat or scarf, at which point I’ll just have to say, “Well, okay…!”
Actually I don’t even have to wait for that. I wore this wig for a couple of hours when we went out to breakfast one day, and put a straw hat over the scarf to keep the sun off my face. When I got in the car, I took the hat off, and didn’t even notice that the scarf came off too. For about 30 minutes, a small but fortunate sliver of the San Diego population got a rare glimpse of an Asian-American Benjamin Franklin on the 5 freeway.
Enjoy the little things.