Mar 14, 2021
Reporting Back
Hi friends! I know folks have been wondering how I’m doing, so I wanted to give you a quick update. I‘m almost halfway through my first round of chemo, and boy does it feel like a lot has happened.
Perhaps most importantly: I have a mohawk now, and I fucking love it.
The Reality of Chemo
The reality of chemotherapy is finally settling in, and it’s challenging. I’ll need 6 cycles of chemo (some before surgery and some after), and each cycle is 21 days long. The breakdown of a chemotherapy cycle for me is supposed to look something like this:
- Days 1–3: Six to seven hours each day in the infusion unit getting IV chemo meds and anti-nausea meds, plus some home meds
- Days 4–11: Oral and self-injected meds to help with nausea and to boost my white blood cell counts
- Days 6–16: Radiation on weekdays (*though this hasn’t happened yet — insurance has been a shit show)
- Days 17–21: Recovery until the next round
It’s been hard, even without radiation (and I’ll explain the delay to radiation in a few moments). I feel some amount of nausea all the time. I’m on tons of meds to manage that nausea, and those meds all have their own fun side effects. I had somewhat braced for the nausea, but the constant nature of it along with the compilation of the other side effects — slow digestion, heartburn, headaches, constipation, lethargy, grogginess, heart palpitations, body aches — add up and have changed my baseline of what a “good day” feels like.
I got sick on day 4 of my first round of chemo (naturally at midnight). It came on fast — full projectile, no time to get to the bathroom. Thank god my closet doors were closed, otherwise cleanup would’ve been even more of a nightmare. I wish you could hear me laughing as I write this, because I can definitely laugh about it. I don’t think I could keep my sanity otherwise.
My care team (family, Simone and Scott, and doctors) jumped into action in an amazing way. Mass General Hospital (MGH) has an outpatient infusion unit open on the weekends, so I got through the night at home with the guidance of a medical oncologist over the phone, went to the infusion unit in the morning for fluids, and worked with an oncology nurse to adjust my anti-nausea meds.
Literally no one told me this was going to be easy. Everyone said it was going to be difficult. They were right. But they also said there would be good days, good moments, and there have been.
I try to walk at least 20 minutes every day. Most days I can do light yoga and physical therapy. I’m meditating daily, though I’m practicing different techniques than normal. Given that my body doesn’t feel great, I’m practicing meditating on objects that are very neutral — a painting in my apartment for example — and only moving into my body when it feels safe to do so, starting with whatever feels neutral or even good in my body, before trying to work with the more challenging sensations.
And I’m laughing and smiling often. I try to eat 6 small meals a day, which feels like a full time job. Truly, I feel like I’m eating all the time! I mostly crave Thai food, but even if I’m not hungry, I’m still managing to eat.
My hair will fall out in the next few days, but I won’t let that keep me from rocking my mohawk (a huge source of laughter and joy) for as long as I can.
Neutropenia & Nadir
One of the things I’ve been most scared of with chemo is “nadir”— when my white blood cell (WBC) counts drop and I’m prone to infection but have no immune system to fight it.
Most people who I’ve talked to haven’t had much of a problem with nadir (and granted, I haven’t talked to a lot of cancer survivors — in truth, I’m not super ready for those conversations. They’re a special kind of challenging).
My doctors told me that nadir normally occurs between days 10–14, and then your WBC count rises again. Rinse and repeat every round of chemo.
On day 9 of my first round of chemo, I woke up with a sore throat. No fever or anything, but I monitored myself throughout the day, and my temperature was slowly rising. By 9 pm my temp was 99. By 10 pm it was 100.2. Time to call the hospital.
They told me to go to the MGH ER, where they’d draw blood and evaluate if I was in nadir. If I was and I had a fever, I’d need to be transferred to the MGH inpatient chemo unit until my WBC counts went up again.
I won’t lie, the ER was a shit show. Even though it was at MGH, I felt like no one knew how to deal with an oncology patient. I asked countless times for a blood draw, but they didn’t draw my blood until 3 am. No one knew how to use a port. By 4 am, my fever was 101.6 and my WBC had dropped very low. I was neutropenic — fighting an infection without an immune system — and transferred to the inpatient chemo unit.
The inpatient chemo unit was like a total 180 from the ER. The nurses were amazing. They started me on antibiotics, and we still haven’t determined the cause of the fever. I guess that happens in about 40% of these situations — they never find out the cause of the fever.
The room I was transferred to was gorgeous (side note: I’m not sure everyone gets transferred to this inpatient unit — I think I just got lucky that this bed was open, but god damn am I thankful). The food was delicious, and again, the nurses were amazing. Positive, informative, caring, attentive. It made me thankful to be here.
I was released from the inpatient chemo unit today (Sunday 3/14) — my WBC counts have returned to a safe level and my fever broke — and I feel a little less anxious about my next nadir knowing that if I do have to come back for an issue, it will (hopefully) be there.
Insurance Sucks
So about the delay to radiation. I could write a whole post about this saga, but I’ll keep it brief. There are 3 types of radiation that I could get:
- 3D radiation: I don’t know a ton about this method because literally no doctor I spoke to (and I spoke to 4 different radiation oncologists) thought it was the right method for me. It’s used for breast and lung cancer patients, and if I got it, it would unnecessarily expose my breast and lung tissues (as well as the nerves in my brachial plexus) to radiation, which puts me at a higher risk of secondary cancers down the road.
- Photon therapy: This is what most doctors recommended. It provides pretty even entry and exit doses of radiation, but they can better mold the beam to spare more of my lungs, breast, and brachial nerves. It seems to be standard protocol for my type of sarcoma.
- Proton therapy: This is the most cutting edge — only MGH could offer it. It provides a higher entry dose but a lower exit dose of radiation. It does the best job of protecting my lungs, breast tissue, and brachial plexus nerves from unnecessary radiation. From what I’ve been told, it’s the best type of radiation for me, but it’s expensive, difficult to get covered, and in very high demand.
My doctors initially requested from insurance that I get photon therapy… but that got denied. My insurance wants to me to get 3D radiation. “If it’s good enough for a breast or lung cancer patient, it should be good enough for you,” was basically their rationale.
I cannot, however, stress enough that I do not have breast or lung cancer.
My whole family is working to fight insurance, and it’s pretty incredible to see their collective power in action. MGH is also advocating for me, and they’ve recently changed their recommendation to request proton therapy over photon therapy. I may not get radiation started until my second round of chemo, and there is still a chance that I will have to pay out of pocket for radiation if insurance holds the line that 3D radiation is good enough.
And, that brings me to my final point.
Stronger Than Sarcoma
If we need to pay for radiation, we will figure out how to. It is still incredibly stressful thinking about the the financial burden on my family if we do have to pay, but I know in my heart that I will not get 3D radiation unless something medically changes to prove it is not inferior to alternatives.
I’ve been blown away by your response to the Stronger than Sarcoma fundraiser so far. In just a few days, you’ve raised an additional $12,000 dollars for this fundraiser. I even got to work with the fundraising team at MGH to adjust the scope of the fundraiser to include research on my type of sarcoma, and the lead researchers told me that we could use some of the money to help others in need pay for medical bills.
Thank you, from the bottom of my heart, to everyone who has donated what you can to this fundraiser. If you’re looking for a way to help me out throughout my treatment, I humbly ask that you donate what you can to the Stronger than Sarcoma fundraiser.
Donate here: Stronger than Sarcoma
That’s all for now. I’ll keep writing when I can — there’s so much more I want to share with you. For now, here are a few of the mantras that I have held especially close in these past few days:
- Hope. Every time there is fear, let there also be hope.
- Breathe. Plain and simple.
- Flip the script. Nadir just means that chemo is working.
- There has to be room for more. Like mohawks.
- Everything changes. That’s apparent from just one round of chemo.
- Put the weight down. Take each moment as it comes.
I love you all, and a huge shout-out to my community who has played online games with me while I’m in the hospital, bought me a Nintendo Switch and taught me how to play it, bought and cooked me meals, walked with me, and just generally been down to show up whenever, no matter the context, and treat me like a normal-ass person who is just going through a difficult time.
I love you all,
Liz
