Fast facts (if you don’t have time to read the full post): Fuck. You guys, I think this is a day where you should skip the fast facts and actually read the fucking post because I feel like the fast facts need context. But if you’re only in the mood for a teaser, here is what the last four months have been like: Green light for surgery, red light for surgery, DVT diagnosis, physical and emotional pain, calf swelling, lots of leg ultrasounds (four to be exact), bullshit from my oncologist about my ovaries and an oral chemo life sentence, and as of four days ago, the blood clots are… gone???

What the actual fuck?! And also to be clear, this post is not to garner pity. I just want to provide some context, clarity, and explanation for why you, dear reader, might have been personally victimized by me ghosting you. (I feel really bad about that, by the way.)

Countdown to last day of Verzenio: 13 days????

Countdown to Tokyo, Japan: 38 days

TO THE LONG VERSION!

In the front of my house, tucked into a corner, drapes a Japanese maple tree. In late spring, summer, and early fall, you can watch it transform from bright crisp green leaves into hues of orange and yellow. The colors are almost like a fall sunset, blazing and gasping on the last breaths of summer.

But in early spring, before the tree even wakes up, you will find long green leaves extending into the rocks next to what I suspect is an old sprinkler box right under the tree. In a matter of a week or two, a little shoot will appear and not long after that, a single tulip will bloom. I love tulips. I love how sweetly romantic they are and how they are always a true indication of spring being on its way. But what I love even more is that I have no idea where this resilient perennial came from. I’ve thought so many times about digging it up and transplanting it somewhere that provides more sun and water, but for what? Every year despite the conditions that it lives in, I get to enjoy my tulip. Why should I ruin that?

This spring, I feel like a tulip. I don’t know how got I placed into the life that I did, why I am next to a shitty old box (cancer), or why I couldn’t be somewhere for everyone to see. Yet, I bloom. I endure. And I ask myself, “What would you be willing to do to survive?” The answer keeps surprising me. Just when I thought I’ve hit my threshold of what I can handle, I reach a new limit, but not without consequence or sacrifice. Every choice of self-preservation requires me to drop something else: prioritizing friendships, keeping the house clean, responding to texts, showing up as close to 100% as I can. I had to let go of a lot this winter to really pour into myself and my health because it was required of me to make it out of this season of life alive.

Here is a little general timeline of what has been going on lately (in a nutshell because it would take up your whole night time routine to cover):

January 13: I was cleared for breast reconstructive surgery despite .06 positive Signatera ctDNA test in November. However, I did have a CT scan at the end of December and it also came back clean. My oncologist basically said that we have to see trends in my blood work in order to determine that treatment has failed and to not worry because everything else was looking great. I walked away relieved and ready to get foobs (aka fake boobs aka reconstruction).

January 15/16: I landed in the ER for extreme calf pain and swelling, only to be diagnosed with a deep vein thrombosis (DVT) and a superficial blood clot on my left calf. Surgery was cancelled, with instructions to call in six months once the DVT cleared. My world fell apart.

January 20: Booked a trip to Japan for the first week of May of this year because fuck being sick. I’ve got life to live.

~Intermission~ Went a whole fucking month as if nothing was wrong. It was absolutely wild. And honestly nice. I really thought things were on the up and up!

Beginning of February: Jose and I separated. Big ooof. I am leaving this descriptionless because I am not quite ready to talk about it.

February 21: Celebrated (Honored? What is the right word here??) my three-year cancerversary. Not dead yet… yay?

February 27: Ended up in the ER once again for swelling and pain in my left leg. Despite being on blood thinners, my DVT was unchanged. Was told not to return unless my chest hurt and/or I had shortness of breath as this could be a sign of a pulmonary embolism, very unlikely on blood thinners but definitely a possibility. How reassuring.

March 8: I made a bold visit to urgent care because I acquired some sort of upper respiratory infection while in the ER. Literally worst cough of my life. Tested negative for COVID at home. Received an x-ray of my lungs while I was there, but no resolution was met despite how sick I had been for over a week at that point. Urgent care defaulted to my oncologist for follow up care. Oncologist defaulted to urgent care. Both decisions resulted in nothing and raw dogging an infection. Cool cool cool.

March 10: One of the worst appointments I have had in the last three years, maybe the worst? My oncologist told me that I was being so anxious about all of my health stuff based on the fact that I had been to the ER several times and have been sick. She feels like being stage IV is making me anxious. (No shit? But also, I am having real health issues??? I normally operate as if I don’t have something inside of me trying to kill me.) And then went on to tell me that she wants me to remove my ovaries this year because I am so high risk (this whole time our agreement was ovaries out by the time I am 40 or if something happens and FYI NOTHING HAS HAPPENED) and she sentenced me to a lifetime of oral chemo (which the plan was after next spring I could stop or at least have a fucking break.) Oh, and she wants to switch my oral chemo back to what I was on initially because this one “isn’t working.” Ironic because in January she said the fucking opposite? She was like well you’re on Verzenio and it is working so go off, get foobs, be free little cancer patient! (Not a direct quote!) I left the appointment in tears and now very determined to get a second opinion. To top it all off, fucking Harry Porter and the Prisoner of Cancerban refused to give blood. I was sent home with blood clotting medicine overnight in my port and instruction to return the next day. Sleeping with your port accessed is super uncomfortable, for the record.

March 11: Returned to the cancer center to have my labs drawn once more. Results showed my initial two tumor markers remained stable and I was (surprise, surprise!) neutropenic. Labs were also collected for my big tumor marker test to compare to my November results. Cue panic.  

~Continues to raw dog upper respiratory infection, but was starting to somewhat improve~

March 18: I established care with a PCP! This is a huge positive milestone to hopefully alleviate me having to go through my oncologist for certain things. In a recap, my provider asked me if I was okay based on the appointment notes with my oncologist. I cried because it was so nice to be seen and cared for emotionally about my physical health. I generally do not receive that level of care during my oncology appointments. I am there to be kept alive, not to be kept alive well. For the first time in three years, I felt like an actual patient, not just a body needing saving.

March 19: New swelling and pain began once more in my left calf; an ultrasound was ordered courtesy of my PCP. This also was accompanied with mystery lower chest pain.  

March 20: ctDNA results came back: I am still no evidence of active disease (NEAD) despite the .06 positive test in November. However, my chart with my oncologist reflects that my treatment failed, but I am not 100% sure that it actually did. But I am not a doctor, so what do I know?  

March 21: I had my ultrasound of my leg at 4 pm on a Friday. An hour later I had results saying the blood clots had cleared but chest pain remained. I ended up going to the ER for a suspected pulmonary embolism (PE). CT scan came back negative for a PE. Left the ER with chest pain (my pain was about a 7!) and no answers other than acute kidney injury on my chart and potential lung inflammation.

March 25: I met with my gyno to have my annual wellness exam. I have not had one since 2022, the day I had an emergency wellness visit due to a large mass in my breast. February 11, 2022 will live rent free in my head forever. It was an emotional visit once more, with my provider kindly emphasizing she wants to help me as much as she can in navigating towards finding a new comfortable normal in my new body. I once again felt emotional and seen by a provider. Jesus. I need a fucking second opinion.

Present day: Although tests show that I am NEAD and I no longer have blood clots, I am still having abdominal discomfort and random nausea. I pride myself on rarely having nausea, so this for me is slightly concerning and I will continue to monitor my symptoms and advocate for myself.

Future plans: On Monday, April 7, I meet with my oncologist in the morning for labs and to be reminded of my indentured servitude to oral chemo and then see my PCP in the afternoon. Double whammy! I will begin Lynparza, a PARP inhibitor, for the second time and tentatively forever. We all know how that went the first time (REMEMBER THE SHINGLES ON MY VAGINA?!) However, I will say that I am absolutely looking forward to not having random life-changing diarrhea. That is my fucking silver lining in my life now: a lack of fucking diarrhea.

Fuck me.

Also, this ~should~ be my final year of Zometa infusions. I have two left in the books. But with my oncologist, you just never know!

Phew. That was a lot.

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John Mayer once wrote, “Your body is a wonderland” and I certainly feel like it was written about me, except less sexy, more perplexing, and way less fun. I can laugh and swear and write about the last four months as if it was nothing, but this year truly broke me.

In the darkest points of the night, I greet my grief with open arms. I thought three years in, I would feel farther and farther away from the bomb that blew up my life, but these four months have truly reminded me how fragile my health can be and I can’t help but wonder if I will still make it out alive.

I really fucking hope so.

Today’s song lyrics of the day are brought to you by Lady Gaga.

“You’re so tortured when you sleep
Plagued with all your memories
You reach out and no one’s there
Like a god without a prayer (yeah)”

– Disease, Lady Gaga