I haven’t written much here. Actually, save for my typical day of chemo updates on LotsaHelpingHands and my occasional IG story/post, I haven’t written much since the start of chemo #3. I’ve been feeling a bit downtrodden and didn’t feel like sharing my gloomy thoughts. I didn’t feel like writing that I had been feeling despondent because perhaps if I did, I’d feel the obligation to excuse it, the need to forgive it. I’m past first week of chemo #4 which means I’m past the hardest (my sickest) week of every cycle. I woke up today feeling better than I’ve had since infusion last week, so perhaps the bright light of a new day has me feeling a bit more benevolent toward myself and the maelstrom of feelings I have been having. So I’m reading through some of my draft/snippets/thoughts left on notepad, and figure, hey this blog is for posterity, right? It can’t be all upbeat or funny or hopeful. Sometimes, it’s really melancholy with maybe no “oh but I’m so lucky” or “oh but I’m so grateful…” because I am (on both counts) but it isn’t always my overwhelming feeling. Certainly not for the last month.

On draft from last week… Tomorrow is chemo #4 which means I am halfway through chemo. And I’ll continue hanging on to the notion that this is the only time I’ll ever need chemo even as I can’t help but be afraid of the possibility that it isn’t. The past few weeks, nay the past few months contrary to every indication, I just haven’t been feeling strong. I’ve had more down days than hopeful days. I’ve been angry. I’ve been sad. Mostly I’m tired. Not physically tired, though that is true, but mentally. I feel like this period of my life is mostly grappling and waiting. There are days, weeks sometimes after chemo when I’m just sick and there’s not much I have to stamina for than reacting to what my body is demanding. Other days, weeks, in between I try as much as I can to live a fairly normal existence but that’s often when I feel at my darkest, and I’m just waiting…waiting to be done with the treatment, waiting to feel like a normal person, waiting to be able to enjoy food, waiting to feel pretty, waiting to feel like this body belongs to me, waiting to propel my life forward. I don’t know what that forward is, but it isn’t this.

–o0o–

I know that the halfway point can be tough mentally. Sure you’re halfway done but you’re not quite there. The side effects of chemo have been somewhat predictable (except when you discover new ones) but also cumulative. Chemo #3 week was also the first time that I wasn’t just queasy/nauseous all the time — I also was vomiting. And yeah to be blunt, the constipation and diarrhea (yes both) were a constant battle. The weekend following chemo #3 was also the first time I felt the sickest that I collapsed outside the bathroom. (It happened again this weekend after chemo #4.) It wasn’t serious, just a case of vasovagal response: I’d been weak, dehydrated, undernourished, and under emotional distress. It’s when your blood pressure plummets for a bit, you get cold sweats and your heart races. It’s no different than if you were to faint at the sight of blood. But it is scary when it happens because at the moment I think it’s serious. Plus how embarrassing to faint while you’re on the loo! But because I have some idea of what was happening I can level with the experience: I “just” need to calm down, I need some electrolytes, I really need to try to eat, etc, etc.

At my last pre-chemo appointment with my oncologist we grazed over my adjuvant treatment following surgery in January/February. I’d always assumed it was either 9 months of immunotherapy infusions or 9 months of TDM-1 which is a combination of my immunotherapy drug trastuzumab with a chemotherapy drug emtansine if the surgery shows there is still residual disease. But she also mentioned the chemotherapy regimen AC (adriamycin and cyclophosphamide) as a possibility in the latter case. It bothered me thinking that there is a possibility that my next treatment is as bad (if not worse in some cases) as the one I’m on. I know we are just discussing options, as we do, so I should just file that in my brain as information. Realistically, any of these things could be the next best option for me, good, bad or ugly as they may promise to be.

When I talk about next steps, almost overwhelmingly folks tell me to focus on one thing at a time. Makes sense. Truly, it is the most supportive and positive thing to say to someone like me, but it isn’t always possible. Incidentally, I talk about next steps a lot with folks who are going through the same thing I am (i.e. undergoing chemo). It’s a topic in the short chats I have with my neighbors during infusion, or with a colleague of mine who is also undergoing treatment. It’s natural. The same way people naturally talk about their future plans, this is what may be in the cards for us, so we do talk about it. Also, probably my colleague is the only person I can talk about maybe not having the will to go through this again and again, or we can joke about if we lose our job, we lose our insurance, we die .. gallows humor stuff, but it’s at least a conversation I can have with someone. The multitude other conversations I have with others can then be about how I’m focusing on one thing at a time and not thinking too too much about what if chemo doesn’t work. (And by doesn’t work I don’t just mean the tumor shrank but whether I have pathologic complete response (PCR) at the end of this current treatment I am on.

In fairness, I do talk a lot about focusing on my current course as well. In that it is unavoidable to do anything more. The side effects demand so much of your attention to manage and even when they don’t it’s a near impossibility to ignore. I always categorize my side effects into 2: the more immediate, life threatening, really make me sick kind, and the not much you can do but deal with it and hope it goes away when treatment is over (and god forbid you add “unless I have to do more chemo” at the end of that sentence because that’s when it can grate on you). The latter side effect category I think have been responsible for my general despondency the last 2 chemo cycles and there is no way to not make it sound trivial sometimes (this is me not being forgiving to myself sometimes).

Truth is, I miss food. I hate that food tastes bitter, or when it isn’t, tasteless. I hate that I have these sores on my mouth and my tongue has developed sensitivity to food texture that isn’t, you know, like silken tofu. I want to eat sushi. I miss working out, not this workout is walking and maybe climbing your 3rd floor walkup, but workout like Insanity and P90X or SoulCycle. I miss grooming where you’re kinda feeling yourself at the end and you know you look good. Now “grooming” is putting lotion on my extremely dry skin and doing an inventory of the changes to manage and report on like how many new bruises, how is the hyperpigmentation progressing, how many more nail beds have started to turn black. I miss my hair. And not the oh it’ll grow back after chemo hair, but my long hair which will take years to grow back. I miss feeling “clear” in my brain. I feel like I’m thinking through molasses and words are hard. I miss me. Yes I know this is me, too, but this feels like an interloping, temporary me sometimes. This body feels borrowed and I don’t know if/when I’ll get my own back. Maybe someday I’ll be able to fully integrate this strange December form that has gone through cancer. Right now, she feels like someone to be managed, her life being this pinhole focus of just staying healthy, taking in the chemo, managing the side effects, having one good week maybe every 3 weeks, then doing it over again. (How do people who have had recurrence after remission do it? Their willpower is titanic! I’ve only been at this for 2 months! I am nowhere near that league! …This is where my thoughts go when all I do is focus on dealing with what’s in front of me and I just feel…tired.)

So now that I’ve whined and whinged for the last, what, 1400 words? I’m going to share some of my thoughts and feelings when I’m not so blue:

I know that I am lucky. I have met with so much patience and support from every corner of my life: from my care team, to my family, from my friends near and dear, and from long ago, from colleagues, present and those as far as decades back, from surf buddies, dance sisters, former and current neighbors and roommates, from college to high school and grade school friends, from people I’ve met traveling, volunteering, travel-volunteering, from former teachers, former students, former partners, from people whose path I’ve crossed in my past, and those I do now. There are but few moments in a person’s life when one receives so much love and selflessness all at once and I am glad I’m not dead. (Sorry I just made that weird. Told you my humor around cancer is kinda dark.)

As difficult as this experience has been it is also incredibly fascinating. I have learned so much about breast cancer, (some about other cancers as well), about cancer treatment. The chemotherapy world is like one one never wishes to belong to but I’d been curious about. There have been recent cancer deaths in my immediate family, so there was always this emotional connection to it, but now that I am going through it, there is a measure of academic curiosity being satiated. There is so much talent and energy and devotion and rigor and endurance meted this world I’ve been welcomed into. There is something so scholarly satisfying and sacrosanct about this whole experience.

I also know when all of this is done, I’d have survived something big. And I won’t necessarily remember how weak I felt many times during the journey…just that I arrived.

Anyway, next week, week 3 of cycle #4 and days before chemo #5, we’re going to Hawaii for 4 days over Thanksgiving. My oncologist was quite supportive of the idea as long as I stay safe and not get sick. I won’t be able to do much of the usual stuff I have done in the 18 times I’ve visited Hawaii (I haven’t been back in 10 years); certainly no surfing and I’ve to stay away from the sun. So here’s a throwback of me in Hawaii surfing and definitely not staying away from the sun.