I got an email from Rachelle the geneticist this morning, letting me know the genetic testing was in. She said she had “reassuring news to discuss!” I didn’t want to get my hopes up, but figured at the very least this meant I don’t have the BRCA mutation.
We just had a video call (thankfully she had availability before the weekend!) and I got the best news possible: Everything came back negative! I don’t have any of the possible genes they know of, which means my risk for other cancers is basically the same as the general population.
This also means I didn’t pass anything on to the kids. Samara should start screening at 39 because I was diagnosed at 49 (10 years before first family cancer or 40, whichever is earlier) just to be safe.
Today was a long day. Aaron and I left the house at 7:15, and my parents and I returned just before 6.
First stop was the WCC (Women’s Cancer Center), where I got an IV line put in my arm and bloodwork taken. They need this information for the chemo – to make sure my WBC (white blood cells) are ok and chemo is safe to give, etc.
The next stop was Radiology for the port placement. The nurse did some intake, explained the procedure, and answered questions, and then we met the doctor who did the same.
What is a port, you might be wondering. Unfortunately, this isn’t the alcoholic kind, which would be vastly preferable!
The port is a way to make chemo infusions (and blood draws) easier. The device is placed under the skin. The right side is the default as it’s closer to the heart, but an ultrasound of each side of the neck is done right before to confirm the best side. The National Cancer Institute has a good description of a port.
The first nurse — also named Lisa — ordered a clear mask for Laura, the nurse who would be with me during the procedure. They placed me on what felt like a thin ironing board, attached me to a blood pressure cuff and oxygen monitor. There was an x-ray screen just above me and four TV monitors for them to show the ultrasound images (used to guide the needle) and other readings.
I had been given the option of just feeling the lidocaine needle (which numbs the area) go in — a pinch and burn — or getting some fentanyl (my mind immediately went to Michael Jackson and the street drugs that are being laced with this horrible ingredient) and versed for pain and relaxation. Kind of like a twilight sleep, but not as much as a colonoscopy. I opted for the latter, knowing I have a low pain tolerance. That meant not eating anything after 1:30 am last night.
Laura assured me it would just be a very low dose, and I’d be awake throughout. She also said I would still feel the pinch and burn. Oh, now you tell me? I imagine it did take some edge off.
My head was on the left side, facing Laura for the whole procedure. She gave me a play by play of what was happening and always had her reassuring hand on me. She was a warm presence I really needed and another example of someone who was meant to be a nurse.
After a while of prep, the doctor came in and swabbed me with antiseptic. My chest area is still blue; I need to wipe it off. The first dose of lidocaine felt like it took a long time. After the second dose, I just felt pressure. I did not like when he pushed the catheter through to the right spot — ick. I could tell when he was doing the sutures.
My restrictions include not driving for the next 24 hours, as I’d be considered under the influence. I can’t lift anything heavier than 10 pounds for a week. The dressing has to stay intact for 48 hours and should not get wet. I’m not allowed in a hot tub, tub bath, or swimming pool for two months. I have to keep a gauze pad and band aid on the incision for five days.
After that was done, we went back to the WCC, where we met with one of the nurse practitioners. She took my vitals and checked the tumor, confirming what I suspected — it does appear to have gotten smaller! Operation KCA is off to a good start!
As usual, I had a ton of questions. I complained about the steroids making me ravenously hungry. They’re supposed to help with the side effects, so we can’t rid them completely. They did lower the IV steroid a little. We’ll see if that makes a difference. Next time, I’ll meet with Dr. Brufsky. If he thinks the side effects are too large, they might drop the A/C levels a bit for the last two treatments.
When we were done, we met up with my parents in the waiting room to trade off. Aaron went home and my parents took turns with me during the chemo treatment. Rosann was my nurse again. I was in a different room, and had a bed instead of a chair – which I liked.
The cool thing about the port placement is it can be utilized immediately. They left the needle in after the installation and the area was still numb, so I couldn’t tell/feel anything. For future treatments, I’ll put lidocaine cream on an hour prior.
I was given saline, two anti-nausea meds, and the A/C. We had to wait for my thyroid numbers to come in before administering the Keytruda. Then we found out the machine was broken. Rosann took some more blood to send to a different machine, meaning at least an hour wait.
My number came back a bit low, but a small amount can make a difference. Interestingly, they usually see the opposite with Keytruda — it usually raises thyroid numbers. Thankfully, a low number meant it was safe to get Keytruda, but I messaged my endocrinologist to let her know.
Half an hour later, we were finally done. I won’t see Rosann for my next two treatments (at least). But she highly endorsed her colleagues.
Of course being done after 4:40 meant we were stuck in rush hour traffic, and we stopped at the pharmacy on the way home to pick up my new scripts.
Mom and Dad left shortly after we returned, and they’re already in Buffalo (Dad has an appointment tomorrow he couldn’t miss). I took a two hour nap, because as you probably guessed from the title, the nausea is baaaacccckkkkk!
Rosann said to take Compazine around the clock, and to try taking Xanax as well because that might help with the nausea. I hate this part!
Samara got her monthly Remicade infusion today for her ulcerative colitis around the time I was getting my port placement. While my infusion wasn’t at the same time as hers, it was the same day — definitely picture worthy!
My buzz cut didn’t last long. I kept finding little hairs everywhere. My pillowcase was especially bad! So after Yom Kippur services, Aaron took the rest off. I have to say it actually looks better now!
We discovered I have a scar on my head in addition to my CI scars; it must be from my 2000 accident when I was hit by a truck. Yes, I literally have felt like I was hit by a truck!
The past several days have been much better; little to no nausea and no mouth sores. Thank goodness for the respite! Just fatigue and another side effect I didn’t even know was one: watery eyes. My body is drying up, so that makes sense. What’s depressing is I also found out that contrary to popular opinion, weight loss doesn’t always happen with cancer. Weight gain is more likely. And if I end up menopausal, it’ll be hard to get off. I’m already at my heaviest weight, so that’s just fabulous. I’m trying not to think about it right now; I have to focus on getting through each day. If I’m lucky, my migraines will be better if I go into menopause, which will make it easier to exercise consistently.
Anyway, tomorrow is Round 2 of KCA, or Kick Cancer’s Ass (thanks, Stacey, for the great acronym)! I start bright and early with bloodwork, followed by my port placement. Then I visit with Dr. Brufsky’s team; they’ll check me out and be subjected to a ton of questions. Around noon will be my chemo treatment. It’ll be a long day!
My parents came in Monday to see me for the first time since my diagnosis. It’s been nice having them here for Yom Kippur. Aaron will take me for the morning appointments, and then my parents will tag team for my chemo.
Mom looked through her closets and brought all the hats she could find. I had a fashion show the other night; here are two of the funniest. The one on the left is a headband, not a full hat. Needless to say, they’re going back to Buffalo! Captions are from Doran.
That would have made a beautiful wig! (Alas, Aaron pointed out it’s very thin right now.)
Once my hair starts growing back, it’ll take a while to see the curls again!
SO MUCH HAIR!
We kept a slight buzz cut to keep my head warm and see how the next few days go. It’ll also help ease the transition.
I didn’t bother putting any product in today, so it’s not as curly or styledOff we go!Step 1Step 1, with attitudeStep 2Step 3New lookThe remnants
Doran likes my new look. I’m glad someone does! Aaron said he can get closer to me in bed now without my hair being up his nose. I will definitely enjoy not having to deal with my Medusa look in the mornings or anytime for that matter – like after napping!
I’d be ok going au natural at home, but once it gets colder, I’ll definitely need warmth. And I don’t think I want to go out in public like this. I tried on all the head coverings I ordered, and unfortunately, I hate most of them. Yes, it looks weird and different without any hair, so that’s part of it. But it also just doesn’t look good!
Scarves aren’t horrible; I’ll have to figure out how to style/wear the ones I have. I’ll also look online for some small bucket hats – maybe they’ll be half decent. Why can’t I be one of those hipsters that looks cool in a beanie or slouchy hat?
Anyway. Now it’s done. I just have to figure out this next part!
After my shower this morning, I knew today would be the day. I lost a lot of hair in yesterday’s shower, and even more in today’s. Combing my hair afterwards was basically combing away my hair.
It’s traumatic losing my hair – there’s no way around it. Earlier this week, when I noticed that just putting my fingers through my hair meant coming away with hair, I said maybe it should be shaved this weekend. But then I thought maybe I should try to keep it for as long as possible.
At this point, I think it’s time.
This is the next stage I’ve been dreading. Hair is such a part of our identity. My body has changed throughout the years, and my hair styles have too. But I’ve always had hair. I was born with dirty blonde hair, and now it’s a mix of medium brown and silver. It used to be wavy but for most of my life, it’s been curly. It’s seen some pretty disastrous cuts, starting in kindergarten when supposedly it couldn’t be tamed. Eighth grade, I pulled the front part back with a barrette. After years of a tumultuous relationship with my hair, I found the right cut and product, and have loved it since.
And now it’s time to say good bye.
I recently read a book by Robin Roberts, called Everybody’s Got Something, recommended by my cousin, a breast cancer survivor. This passage was all too relatable:
I know I’m not alone in how punishing it felt to lose my hair. There are studies that show that many women find losing their hair more painful than losing a breast. It’s not all vanity. Hair is how we express ourselves. Our hair frames us. I was drawn to the song India Arie wrote for Melissa Etheridge after she had chemo and would appear on stage with a bald head. And I used that as my anthem:
I am not my hair / I am not this skin / I am a soul that lives within.
I think one reason why this is so difficult is because it makes this breast cancer journey more real. It’s a visible, tangible, constant reminder of what I’m going through. Right now, if you look at me, you can’t tell I’m sick. I notice the bags under my eyes, the constant yawning, the thinning hair, and feel the migraine, nausea, and other side effects. But you wouldn’t notice those.
Once I’m bald, I’ll have that cancer look. And I admit it’s shocking. When seeing other women without hair at Magee, it takes me aback. Now I’ll be one of them, shoving mortality into everyone’s face just by existing.
I have a bunch of head covers I ordered a while back, and hats people have given me, and a couple I already had, but it didn’t make sense to try them on while I still had hair. I couldn’t find any wigs I liked in local stores, so I ordered a couple online. They weren’t expensive, so if I don’t like them, I’ll donate them.
We’re still planning to do some fun styles on the way out. Stay tuned…
In other news, this was definitely a better week compared to last week. I finally got the “magic swizzle” mouthwash for my mouth sores. The taste isn’t great, and the feeling is weird – my whole mouth was numb. But the next day the sores were gone! It sure is magic!
Ironically, the worst symptom this week was the migraine I had every day. I don’t know if it’s from the chemo or just coincidence, since I get migraines. One of my triggers is barometric pressure changes, but I don’t know if I can blame this on Hurricane Ian, because Pittsburgh wasn’t affected until today. The nausea was mostly gone this week, but came back a little yesterday. I’ve been waking up early and needing a daily nap.
It’s a little scary thinking about how much worse I’ll feel the further I get into treatment. One person described the fatigue as having a remote control on a coffee table in front of you and needing an hour just to get it. On the plus side, someone said that Taxol (which I’ll get as weekly chemo in the second phase) is a breeze compared to the A/C.
But now I must take a deep breath and transition into a warrior!
