Fast facts (if you don’t have time to read the full post): Tomorrow I have shit ton of appointments. In total, I have five appointments and four of those are at the cancer center. I will do labs, go over consent paperwork for the oral chemo, see my oncologist, and get injected with my hormone blocker. I get a couple hours off before I have to go to the eye doctor. Thinking about tomorrow makes me tired. And anxious. I am not looking forward to starting oral chemo Tuesday.
Yuck yuck yuck.
TO THE LONG VERSION!
On February 11, 2022 I was sitting at work adjusting my sweater over my bra when my fingers grazed my right breast. I felt something hard. Confused, I adjusted my bra once more thinking my mind was playing tricks on me, confusing the firmness of the bra for something more sinister. But the mass was not my bra. It was a lump in my breast.
It was Friday so there were not many people at work but luckily one of my friends was working. I ran to her office, closed the door as tears rolled down my cheeks. “Please tell me what I am feeling is not real,” I begged. She performed a breast exam and firmly told me to call my gynecologist’s office to see if you can get in for a more formal exam. I had my yearly exam scheduled and was a few weeks out from my appointment, but I knew I couldn’t wait that long to get answers.
I called the office and a provider was available to see me an hour later. It was a full on appointment so I had to strip down and get poked and prodded at all over my body in the name of women’s health. The breast exam part left me in a fit of anxiety as she empathetically explained to me that she wanted to refer me to get an ultrasound. She attempted to comfort me with the potential idea that it could be nothing, but her eyes told me another story: I should be worried.
It was a Friday so I did not get a call to schedule an appointment until Monday, February 14. I took the earliest appointment I could: 7:45 am on February 15. Little did I know that my life was about to change forever.
How cliché. But it did!
I thought these ten days leading up to my cancerversary would be some sort of build up to a day I could honor and make dark jokes on but they are actually weirdly triggering and painful. I think I have a lot of healing work left to do in regards to forgiving myself for not finding the mass sooner and for not doing a self breast exam more regularly. Maybe if I had caught it sooner I wouldn’t be stage IV. Or maybe I wouldn’t have done chemo. Or get my boobs chopped off.
Or maybe… none of those scenarios exist. I don’t believe cancer was my “destiny” or “meant to be” because fuck that shit. Not every fucking adversity has to be a teaching moment or has good things that spring out of it like froyo out of a soft serve machine. Somethings things just fucking suck and they don’t make sense and it just hurts.
These memories fucking hurt. One year later and I am alive but I keep looking at the new oral chemo bottle full of dusty olive colored pills I have to start on Tuesday and the only question that pops into my mind is, “I am alive but at what cost?” I want to be alive. I am so eternally grateful that I am still here but how I got here meant sacrificing everything about myself. And some parts of my sacrificed self are for forever. I will be on hormone blockers and oral chemo basically indefinitely. I am at the mercy of good insurance, medical advances, and my BRCA1 mutation. Hope is a prerequisite for my survival.
I am so nervous to start oral chemo on Tuesday. I’ve been in contact with the pharmacy that will be sending me my medication. I am SO FUCKING LUCKY that my insurance is covering 100% of my expenses for this medication (yes… this is incredible and I guess very uncommon for this particular drug.) I do not even have a copay for it which makes me laugh because I have a 30 cent copay for my anxiety medication. The only downside is that the pharmacy will have to call me every 15 days to make me answer questions because insurance only approved 15 day cycles for the drug. The pharmacy said that eventually insurance will most likely move it to every 30 days, which honestly I don’t care. Call me every day if you want. Not paying $200 out of pocket for a drug to keep cancer from growing is a fucking blessing.
But what is NOT a fucking blessing are the side effects that oral chemo comes with and how many I have to take a day. I will be taking two pills twice a day called Lynparza. According to the website, “As gBRCAm tumor cells proliferate, they accumulate DNA damage. Tumor cells survive by repairing their damaged DNA via the PARP enzyme, among other cellular processes. Disrupting the DNA-repair process with a PARPi may help drive tumor-cell death.” Okay, so I know this is a lot so let me break it down since it has been a minute since I have done a science 101 lesson for you all.
BRCA1 and BRCA2 are genes that produce proteins that help repair damaged DNA. Sometimes these genes are called tumor suppressor genes. Everyone has BRCA1 and BRCA1 genes in their bodies. One copy is inherited from each parent. When you have a harmful variant (or mutation), cancer can develop and is markedly increased. According to Cancer.gov, “About 13% of women in the general population will develop breast cancer sometime during their lives. By contrast, 55%–72% of women who inherit a harmful BRCA1 variant and 45%–69% of women who inherit a harmful BRCA2 variant will develop breast cancer by 70–80 years of age. The risk for any one woman depends on a number of factors, some of which have not been fully characterized.”
When I was diagnosed, I was immediately tested for a mutation because of my family’s history with cancer. I tested positive for a BRCA1 mutation and this mutation comes from the paternal side of my family. Several of us are BRCA1 positive (our specific mutation is c.1953_1956del.) I am the youngest in my family to test positive.
Basically this drug is going to induce cell death. What is funny is that I have known I would be taking this drug since three days after I was diagnosed. I think my providers definitely downplayed it and made it seem like taking it was no big deal, but it kind of is. IT IS FUCKING ORAL CHEMO. On the Lynparza website it says, “Lynparza may also affect healthy cells and tissues in the body. The exact mechanism of action of Lynparza remains a subject of research.” So like it helps but we aren’t exactly sure why it helps but it also will attack more than just cells fucking up. Which brings me back to side effects!
I meet with a nurse tomorrow to sign a consent form and I know my oncologist and I will have an awkward conversation about this drug. She will basically tell me, “If you are sick, let me know how sick and if you aren’t that sick keep going.” The pharmacist who called me to approve the medication said I basically will be really nauseous for a couple of months, I will feel really tired, might throw up a bit, and definitely will have a low immune system. Cool cool cool. The side effects on the website based on a recent study listed the following percentage of patients that experienced the following side effects: Nausea (58%), anemia (40%), fatigue (including asthenia) (37%), vomiting (30%), neutropenia (27%), respiratory tract infection (27%), leukopenia (25%), diarrhea (21%), and headache (20%).
I didn’t read too deep into it so I am not sure for how long. I was told that it would be a few months and that my body would eventually level out. BUT WHAT IF I DON’T? I will ask more questions tomorrow. Will I always be immunocompromised due to this drug? How long does she want me on it? Forever? Do I ever get to not take drugs??? These are not even fun drugs!
Big sigh.
In the meantime, I feel like I am in a 10 day mourning period. I thought it would be less triggering, but I am triggered. I hate cancer. It just never seems to end. My next milestone will come on February 15, the day I had my ultrasound and surprise first mammogram. February 18 I will celebrate (weird word choice but I am going to leave it) my first encounter with needles I didn’t ask for or appreciate in the form of a biopsy. And of course February 21 is the day that will live in infamy: Cancerversary. But one day at a time, am I right?
I know I have been really negative, but I have also felt so loved. Yesterday I went to a friend’s house for Galentines breakfast and she made little pink ribbon pins for us all to wear in honor of Discovery Day. I cried. I was so touched that it was acknowledged as a painful day for me and a day that has deeply impacted not only just me but those closest to me. Sometimes I forget that I am not alone in this experience. There are many around me (including you, dear reader) who have chosen to ride with me on this never ending journey in solidarity. You have expressed at times feeling my pain or feeling touched by what I have shared. I know I do not say it enough but you are part of the the prerequisite for survival, too.
And in a fun surprise, an old coworker came by my house today and dropped off the most lovely gift basket of goodies in acknowledgement of how hard this month is for me. In my darkest and deepest holes of pain, you all seem to throw me ropes to climb. I don’t know how I got so lucky to be loved by so many of you.
So let’s end this on a bright note. I ate a shit ton of chicken wings today during the Superbowl and now it is time for me to prepare for slumber and a long day tomorrow.
Today’s song lyrics of the day are brought to you by Blasterjaxx.
“Survive, we’ll meet in the night
We won’t die
And I know that it’s hard to fight
It’s do or die
It’s do or die
It’s do or die”
madisonhatescancer 