Fast facts (if you don’t have time to read the full post): Yeah, yeah, yeah. It has been a minute. If you don’t already follow me elsewhere, you might have thought I was dead! Ha! I’m not dead YET! But my soul is tired. My body is tired. Oral chemo sucks and all the side effects that come with it suck. Like being sick with shingles. Yup. Let’s talk about that.

Countdown to last day of oral chemo: 332 days

TO THE LONG VERSION!

Writing has been hard lately. What do I say that I have not already said? My existence is free from the constraints that came with chemo and radiation. A year ago, I was a prisoner trying to survive the things that were made to help me survive. Now I am busy supporting myself while my body adapts to the oral chemo meant to prolong NED. It is its own kind of battle, one riddled with life land mines disguised as shingles, salty tears, and a deep need to get closer to getting my boobs reconstructed.

I take two chemo pills in the morning and two at night. This “magic” medicine forces cancer cells to kill themselves. Sometimes other cells that are minding their own business might die too, but they are less likely with this medication than chemo infusions thank goodness. But these pills still induce pangs of PTSD and have resulted in me getting really sick twice, and in ways I did not expect.

The first three weeks of oral chemo I fought a tough battle against a brutal cold. It took me FOREVER to shake off, which left me perplexed because I kicked COVID’s ass twice (TWICE!!!!) while I was on chemo and doing radiation. But a cold beat me up and spit me out on the streets. I went to the express care clinic because I was worried about my lungs. They were clear by the way. That was my first cold in three years and it was awful. I was so snotty, exhausted, and coughing up a lung. I had initially convinced myself it was a side effect of the oral chemo, but it turned out to just be a virus.

The moment I started to get better, I developed pain in my lower right hip and back. I thought maybe I had tweaked it while exercising, but the pain would not go away no matter how long I laid on a heating pad or pounded it with the handheld massage gun. Of course my mind then went to mets and cancer in my hips. How fucking terrifying, but definitely not outside the realm of possibility. But even though my panicking self drifted into nightmare territory, something in me felt like something else might actually be wrong…

I began to develop little white zit-like dots all over my vagina and my hip. A cluster of red dots had formed where I had originally felt pain in my lower hip/back. In a matter of hours after noticing the white dots, I was in excruciating pain. It felt like my vagina was being stabbed over and over again with a hot needle. A couple of Google searches resulted in the short and simple answer of shingles, but I was shocked. Shingles?! Seriously????

Sure enough, a late night ER visit due to the inability to sleep through the pain resulted in the official confirmation of shingles. I learned that shingles (a form of the herpes virus) can be triggered by a stressed immune system or sometimes certain cancer medications, both of which I was/am experiencing. I was prescribed some antivirals and told to watch out for infection as the pustules pop and scab over on my lady bits, avoid immunocompromised people and babies, and warned that my symptoms could last for months.

Cool cool cool cool.

I am not sure if it was the universe wanting to toss me a bone or was over torturing me, but the antivirals kicked in after the first couple of doses. I had to take 800 mg five times a day for seven days. By the end of the first day, I already felt some relief. Although antivirals are not a cure (your body basically has to fight it off) they helped reduce the pain and advance the war my body was enduring to bring it to a close. I have been lucky to not experience any more pain since then and the shingles are all scabbed over. But holy fuck, if you qualify for the vaccine I would recommend you get it. Shingles are fucking stupid. They hurt!

So my body was wrecked from starting chemo, knocked down more with a cold, and hit a high note with shingles. The antivirals made me feel shitty. I am finally back to my normal medication schedule and I feel like my body is finally leveling out on oral chemo. I still hate it (thus the countdown to when I can be off these meds) but it may just be more tolerable as I was told to expect the longer I take them.

I saw my oncologist this past Monday and had some bones to pick because I had heard that I could end up taking this oral chemo forever. And I literally do NOT want that. I confronted her about it and learned that because my cancer is still marked curative in nature, I only have to complete a year of oral chemo. Now if my mets were to spread or had been worse than the three tiny lesions in my spine that eventually responded to chemo, then I would have to take them forever. And the plan is to scan me early summer to see how cancer-free my body looks. I plan to take those scans and get a second opinion on my case from the Seattle Cancer Institute. I trust my doctor. I think she is great. But I also just want to double check in regards to my long-term plans of care and ask questions about fertility.

I want to be positive. I need this hope. I am hanging on to it for dear life. The estrogen blockers don’t bug me as much. But the oral chemo does. I have noticed since starting it my hair growth has slowed down. I struggle with muscle recovery post-workout more. I am fatigued again like I was during chemo. I sleep more. That gap between ending radiation and starting chemo was a glimpse of who I can be this time next year and I want to hurry the fuck up and get to that point. Granted, I am SO grateful I get to be a somewhat normal human this year and enjoy my summer. I look forward to gardening and swimming and making friends with the bugs in the soil. But imagine how much more I can do next year!

But life has been more than tending to the woes of chemoland. I’ve been kind of mum about the status of my marriage mainly because I blasted the crime of infidelity everywhere and now we have chosen to try marriage counseling together in hopes of repairing what has been broken. Oops? I guess I share this to normalize the messiness of relationships. Like most things in my life, not everything is black and white or as simple as I thought it would be for me. I don’t know if therapy is enough to repair, reconcile, and rebuild, but I guess we will find out. In true fashion, all aspects of my life must be lived on hard mode, my relationship being no exception.

In better news, I have found space to celebrate life with those around me through attending birthday parties, dinners, and trying to be better at responding to texts. I am still pretty awful, but I am acutely aware of my shortcomings. That is the first part of recovery, right?? I think some of it is tied into exhaustion. My body is tired. Hell, my brain is tired. The last year has been a mind fuck. I am not showing up in all of the ways people deserve right now or rather all of the ways I want to show up for people. I feel like I am still failing in a lot of ways. But I will keep trying.

Oh! I got my eyebrows microbladed again. Something about having eyebrows just makes me feel more with it, you know? I am in a season of trying to find ways to care for myself and my soul. My life is still a dumpster fire, but it is less out of control flames and more like slow burning embers. We still need to keep the fire extinguisher nearby, but we could make s’mores.

Here is what I sort of have been up to:

Today’s song lyrics of the day are brought to you by The Be Good Tanyas.

“Sometimes I don’t know where this dirty road is taking me
Sometimes I don’t know the reason why
So I guess i’ll keep gamblin’
lots of booze and lots of ramblin’
It’s easier than just waitin’ around to die”

– Waiting Around to Die, The Be Good Tanyas