Today is 3-year Chemo-versary

The date on this is 10-10-14 which means it was taken a couple of weeks after chemo ended. I have very few photos of my bald head! This is one of them. 

The date on this is 10-10-14 which means it was taken a couple of weeks after chemo ended. I have very few photos of my bald head! This is one of them. 

Today is the anniversary of my last day of chemo. It's so strange to me that it was three years ago. I remember being so scared of the chemo, of losing my hair, of what it would feel like.

Now, it feels like a million years ago. I'd shave my head again now. It was kind of fun playing around with different styles. At the time, it was petrifying though! Right now, it feels more scary that my insides are so tangled up with no apparent solution. 

But of course, fear changes and morphs with every new health crisis.

I had 18 weeks of Taxol and 7 weeks of Carboplatin. I had an adverse reaction to the Taxol the first time so that's why I ended up with an extra dose of the Carboplatin. Most ovarian cancer patients get six weeks of each with two week breaks in between.

My doctor wanted to give me 18 weeks of Taxol due to a study that I've never been able to find. I had so much Taxol that my nails nearly fell off. I never told you guys because it was horrifying and gross and I don't know.... I wasn't as comfortable then telling you those sorts of things. I hardly took photos too. Hell, I only have about six pictures of my bald head! I didn't let many people take photos of me at the time. I didn't take my first selfie until a couple of years ago! It's strange to me now that I was so shy then and now I'm so open. But that's been a GOOD change in my life. 

The Taxol not only made my nails almost fall off, but the ends of my fingertips and my toes were very, very sore. It's called neuropathy. It's the kind of side effect you blow off as important until it happens to you. I couldn't button my clothes or open a ziplock for weeks. If it wasn't for my classmate from grad school, Lori, who advised me to take glutamine at high doses, I shudder to think about what the pain would turn into.

I still have it. They don't hurt. But if I press the ends of my fingers hard, I can feel a tenderness. If I stop taking my glutamine powder, it gets worse and my toes hurt when I walk.

They say it lasts forever.

I ignore that.

Doctors love to say that shit. 

They also said I'd have ulcerative colitis forever.

What I worry about more is my immune system and my brain. I keep waiting for my short term memory to come back. I'm not nearly as fuzzy as I was last year and before, but I'm learning to accept that my brain power will never be the same as it was. I know a lot of people say it's aging or they never had good memory.

Imagine having a skill you're really good at taken away by a drug. And knowing it may never come back.

And that's just one thing I lost.

The last few years have been so hectic, trying to keep myself hydrated, fed, alive, that I've never been to a neurologist and had my brain assessed. 

I don't remember much of chemo. But I do remember living in perpetual fog. I had a lot of trouble finding words, completing sentences. 

Sometimes I wonder if my writing has gotten better because so many things were moved out of the way in my brain.

It's as if the chemo and the loss of hormones from insta-menopause swept away things like short term memory - and shit, I can't even remember what I don't remember - so that my writing voice could finally flow through like a rushing river.

The chemo removed my ability to ruminate on daily tasks or people I'm supposed to call - when I have those thoughts now, I have to rush and write them down quickly because my brain likely won't circle back to them.

While I appreciate having this writing voice flowing through without obstacles such as "remember to go to drug store," I worry about the fact that I won't be making many long term memories from this time in my life.

It's one reason I feel so compelled to record more and more of my life online. 

It's gotten to the point where a friend of mine will tell me something a little gossipy and then tell me "you're going to forget this, right?" and I laugh and say "what?? I already forgot."

But it also means I won't have such strong memories of these moments with the kids or with you or on the rare occasions I get to do something fun. It also means I'll forget to write you back or I may look confused when I run into you without recalling the last time I saw you.

Imagine: not being able to make any long term memories.

It's one of the reasons I enjoy telling such vivid stories from my past. When my memory was nearly photographic. 

I don't know how to make peace with losing that. It wasn't getting hazier as I got older, of course. But it was never non-existent. 

I try not to be sad about it. Luckily, I don't spend a lot of time thinking about it! Because I forget! 

Instead, I try to be grateful that I'm no longer in treatment. I no longer have to watch my finger nails loosen from their nail beds. I no longer have to time my drugs carefully in order to not feel seasick for the entire day. I don't have to spend all day curled up in a ball in the hospital or at home, wishing for the hours to pass quickly. I don't have to watch my hair fall out in clumps, or look at the stranger in the mirror wondering who she is.

Instead, I have other worries to think about. But not those at least. 

It's strange, isn't it? We worry so much, so much, SO MUCH about some present problem in our lives. And then it goes away, and the whole thing starts over again about something else.

I wonder what it would be like to truly reach a zen place where we lived in the present and didn't worry about whatever problem is today's struggle. What's the Buddhist saying? Pain is required. Suffering is optional?

I try to remember that now, when I'm eating the same fucking thing day after day and still getting pain. That today's pain will be a distant memory tomorrow. Whether I choose to suffer, and lament, and feel sorry for myself is entirely up to me.

It's not easy to get to a place of acceptance regarding illness and pain! But after....shit, 16 years now of health crap - between the inflammatory bowel disease, melanoma, and these last few years - well, I'm ready to graduate to a new way of dealing.

Whether it's making art out of my pain, or comedy, or stories, or just plain staring it down, I want to live in a place that accepts it's presence. I don't know how I'll do it. But I guess I have chemo to thank for being one of the lessons to teach me.

Hmmmm, I'm surprised I wrote that. In the past, whenever I've been grateful for the illness, it goes away.

Let's hope for that. Here's to three years out of chemo!!!!

Much love,
Jules