Fast facts (if you don’t have time to read the full post): I know, I know. I did not write when I said I would write. I have noticed that as I continue to gain energy and mobility in my chest, the more I seem to add to my social calendar, the more I realize that adding more makes me tired. I am on the hamster wheel of exhaustion! Last Thursday I met with my oncologist and had labs. That was an interesting appointment, one that I wish I had not gone alone. Friday, I met with my surgeon to do the four week post op appointment. Today, I had a call from radiation. Friday I have a follow up appointment followed by a simulation test. Not sure what that means? Me either! Let’s dig in!

TO THE LONG VERSION!

Since losing my hair, I’ve had this pre-planned speech in my head of what I would say if anyone dared to make a comment about me that I didn’t know or that was negative. It would be something to this effect: “First off, that is RUDE for you to comment on anyone’s physical appearance in a negative way. Period. Secondly, I have FUCKING BREAST CANCER YOU IDIOT.” Okay, depending how angry I am I might drop the idiot part since it is not nice to call people names but I figured I could use the cancer card here. I am sure it is a better name than some of the other ones I might be thinking of in that moment of rage. Now, this speech is something I’ve always fantasized about and have been pretty thankful I have not needed to use it but today… today was the day.

I was walking with my co-worker in the park. Lunch was out for the Kennewick High School students and they were doing dumb high schooler things: clogging the pathways, creating smoke clouds with their black market joints, and laughing at each other. Normal park day. We were almost back to the library and were passing a four way intersection pathway. I saw high schoolers pass us from behind but I was too busy talking to my co-worker about whatever we were talking about. Suddenly, she whips around and yells, “Well that is really rude. Seriously?!” I stop talking and asked her what she was talking about. I didn’t hear what they said, but I had a dark feeling that my speech was about to be activated.

“They were talking shit about your hair,” she said. There was anger in her eyes. I turned around and looked at who was behind us: three boys. One had a really dumb looking mullet. “Really? I HAVE FUCKING BREAST CANCER,” I yelled. Then my co-worker kept talking and told them to grow up as they walked away. I kind of was stunned. I was already having a tough emotional day and that was just the cherry on top. I didn’t know what they had said about me. She wouldn’t tell me, but it hurt all the same. I had to release the speech I had hoped I would never have to do. Granted, it was half the speech but still. I was grateful she was there with me but it hurt. She hugged me and told me she loved me. It was a bandaid on my broken cancer heart.

I wish I could have said, “You wouldn’t be talking shit about me if you could feel how soft my hair is or if you knew how much poison has been pumped into my body.” Who knows if it would have mattered to them as much as it mattered to me. I feel so vulnerable walking around with my short awkward hair and my breastless chest. I feel exposed. They are my cancer scars for everyone to see, even if they don’t know it was cancer. People can make up their own narrative and sometimes that bugs me. I want them to know that my spring chicken hair is new and growing in dorky because I refuse to trim it. I want to see the chaos. My shirt sits weird on my chest because my genetics are strong and the cancer came early. It left me feeling raw in the strangest of ways. It didn’t matter that I didn’t hear what they said. They said something loud enough and mean enough that my friend defended me and my honor. She gets a friend of the month award.

I started the day not feeling well and that just tipped me over the edge so I left work early but I love Wednesdays because I have a new routine: restorative yoga at Lifted Lotus! A friend invited me a couple weeks ago and now I am addicted. This class is aimed to restore your mind and body through gentle practices like Restorative yoga, Mayo-Fascial Release, Pranayama/Breathwork, Sound therapy, Yoga Nidra and Meditation. It is a full hour dedicated to healing in a way that is nearly impossible for me to do at home. And it is by donation, so that is really great too! I look forward to my hour of peace and healing every Wednesday from 6-7 pm. If you’d like to join, click the underlined name link above. I promise it will be the highlight of your day, if not your week. After an emotional day, I feel a lot better and less intensely raging against the idiots who dared to comment on my virgin hairs. Assholes.

Okay, but you might also want to know why I am not feeling well. Last Thursday I had my Zoladex injection and visit with my oncologist. First off, Harry Porter and the Prisoner of the Cancerban would not give up the goods for my labs. I was flushed I don’t know how many times… at least 30 if not more. I was THIS CLOSE for having to walk across the hallway to give labs out of my arm, but luckily my nurse called my oncologist and asked her if they could TPA my port (give it a special “medicine” to dissolve anything blocking the blood flow) and try before my injection. We got the okay, in went the medicine, and off I went.

Note to self: I should always bring a person with me to my appointments because you literally never know what kind of news you are going to get. I was excited to see my oncologist and we did our normal small talk: hello’s, going over meds, and asking if I have any questions. I requested some gabapentin to help with my hot flashes and night sweats (and let me tell you I finally can sleep through the night without waking up sweaty and confused.) After the pleasantries she got very serious, more serious than normal.

“You only had a partial response to chemotherapy and I gave you the most aggressive chemo I could. This means you will need to be on the PARP inhibitor for at least 5 years, if not longer. I am worried if I let you stop taking it to get pregnant, your cancer will return.”

So reminder that my cancer is ER+, meaning estrogen fuels cancer growth. Because I am BRCA1 positive, this mutation dramatically increases my risk for breast and ovarian cancers. Our conversations have always been that I would be on the PARP inhibitor for at least 3 years, a small window to get pregnant if I wanted to have children, and then hysterectomy by the time I am 40. The older I get, the higher risk I have of ovarian cancer, especially if I am off the PARP inhibitor. That window of time has gotten smaller, so small that she mentioned that I should talk with my loved ones about me possibly never having children.

Deep breaths.

Okay, so I do not know if I want to have biological children but having the choice taken away is enough to set me off. Add that to the fact we do not know the state of my fertility after chemo and that just leaves me as a sad potato. I cried leaving her office. It is just another painful reminder of the sacrifices I have to make to save my life and at this point I really hope those sacrifices mean I get to live and are not in vain. I will save this conversation for another post since I am still struggling with it and need more time with it.

After the appointment, I went to have my Zoladex injection and try to give labs again. The TPA normally takes an hour to kick in and this time it took me two hours! Meanwhile, I ate chemocuterie and rejoiced because they finally had hummus and pretzels!!! Oh and I got to see so many of my favorite nurses. The hugs comforted my bad news and it made me realize how much I missed chemo. I don’t miss the poison, but I do miss the routine and support and love. *Sigh*

The next day I saw my surgeon and he said I was doing 90% better than most mastectomy patients four weeks post op. He was pleased with the healing and the people pleaser in me was pleased to have been pleasing. I am such a nerd. Now I won’t see him until reconstruction which won’t be until winter 2023 / spring 2024. I am a little sad about that since I really like him, but I guess it is nice to cross one more thing off my list of “things to do to defeat cancer” list.

Next up in the never-ending list is radiation. Friday I will meet with my radiologist to do a follow-up and a simulation. I heard this is when I will get my dope radiation tattoos. Yup! We get tattoos! They are just little dots that look like black heads for targeted therapy. Fancy. I wonder how many I will get… I am guessing I will start radiation next week or the week after. It will be 28 days of daily radiation. Bring on the sun burns, suckers!

Today’s song lyrics of the day are brought to you by The Killers.

“I wanna stand up, I wanna let go
You know, you know; no, you don’t, you don’t
I wanna shine on in the hearts of man
I want a meaning from the back of my broken hand”

– All These Things I’ve Done, The Killers