October 11, 2020 - Scanxiety
It's been awhile. It has not been for lack of intent or thought, but I will confess my thoughts are all over the place. I promised in the beginning that my posts may not follow a straight path and may prove to wander without purpose. I'm afraid you may be in for curvy ride. Pull up a chair.
To refresh your memory, because I know this cancer speak can be tedious and thrilling, I thought I would offer a quick public service announcement on my chemo cocktail. I am taking Tucatinib (Tukysa), Capecitabine (Xeloda), and Trastuzumab (Herceptin/Hylecta).
TUKYSA is a prescription medicine used with the medicines trastuzumab and capecitabine to treat adults with human epidermal growth factor receptor-2 (HER2) positive breast cancer that has spread to other parts of the body such as the brain(metastatic).
My regiment is simple. I take 2 pills of Tukysa every day, twice a day, which is 4 pills a day. I take Xeloda every other week. On a week with Xeloda, I take 3 pills twice a day, so 6 pills of Xeloda daily. And every three weeks, I have an injection at the Mayo Clinic of Hylecta (which is the injectable version of Herceptin).
Because these chemotherapy drugs cause side effects, I also take Zofran and/or Compazine for nausea throughout the day. In addition, I begin each day with Claritin, because it helps with join/bone pain! Yes, it does! So on a normal day, I could be ingesting up to 13-14 pills daily. (I'm sure I'll have an entry on the craziness of that one day, says the person who rarely took a tylenol when she had a headache).
The possible side effects of both Xeloda and Tukysa are practically identical. They could include:
Low white blood cell count (This can put you at increased risk for infection)
Hand-foot syndrome (Palmar-plantar erythrodysesthesia or PPE) - skin rash, swelling, redness, pain and/or peeling of the skin on the palms of hands and soles of feet. Usually mild, has started as early as 2 weeks after start of treatment. May require reductions in the dose of the medication)
Elevated liver enzymes (increased bilirubin levels) (see liver problems)
As my body is adjusting to this new chemo cocktail, I am figuring out which side effects are visiting most frequently. The laundry list is pretty long, but the ones that like to visit me daily are Nausea, Fatigue, Hand-Foot syndrome, Diarrhea, Mouth Sores, and Headache. I know, it's sexy, right.
My doctor measures my blood counts and liver enzymes with comprehensive blood tests every three weeks, so the jury is out on how impacted I am. The side effects of Chemo drugs are cumulative, so it will be interesting to see how I am week over week.
This past week, I had my first double whammy with both Xeloda and Tukysa. I had the pleasure of the side effects intensifying. I won't sugar coat it, last week pretty much sucked. The nausea was pretty severe. It didn't help that I have had almost zero use of my right arm since last Saturday. (I told you this post would meander.)
Right ARM?? What in the world does that have to do with any of this?? Well, let me tell you. So, last Saturday, October 3rd, I had a night to myself. It was the first time in a long time (a very long time) that I was home alone all night. Jamie and Mason were on a Boy Scout camping trip. I was actually looking forward to the solitude. I had just come off a very stressful end of quarter work week and needed the downtime.
I was looking forward to wildy stretching out and consuming our king-sized bed. Unfortunately, my body doesn't have the contortionist abilities of yesteryear. Since my double mastectomy, I have been plagued with necrosis in my left breast (or what is left of it), so it is painful to lay on my left side. And, since my craniotomy in July, I have been plagued with head pain and tenderness, so it is difficult for me to lay on my right side. AND, who really sleeps on their back??? Seriously, not me. Net net, there is no good sleeping position for me. On that fateful Saturday night, instead of sleeping in a position that works, I was tossing and turning and laying in very weird positions. I had too many pillows. I was stretching in horizontal positions that basically immobilized my entire right arm and shoulder. I have no idea how I did it, but boy did I do it.
On Sunday morning, I called Jamie around 6am in tears. I knew he would be up. 1) he never sleeps late 2) who would sleep late in a tent. Honestly, who would sleep in a tent??!! Thankfully, they were planning on coming home early. I was in PAIN. I could not move my right arm. I couldn't lift anything with my right arm. I couldn't brush my teeth with my right arm. I could not change my clothes without help. I know this sounds so dramatic, but I was down and out!
I am not too proud to say that I was happy (very happy) to have a supply of Oxy remaining from my craniotomy. It was the only thing that cut the pain. On Monday, I went to see a chiropractor. Well, guess what?!? Once a chiropractor finds out you had brain surgery 2 months ago AND you have Stage 4 cancer, they really don't want to touch you. I mean, they WON'T touch you.
He was kind enough to have his massage therapist see me. She has swiftly become my new BFF in Ponte Vedra Beach. I saw her 3 days last week. She spent an hour each time brutally (and I mean brutally - as I have bruises to prove it) working on my shoulder, arm and back. It was painful, but it was the John Cougar kind of pain that made me want to sing "Hurts So Good".
It did not start feeling better until Friday (2 days ago). I still cannot lift anything of any weight with my right arm, but I proudly put deodorant on by myself today without Jamie helping. Winning! I told you that I was oversharing!!
So, on top of a bum arm, which we are guessing is Bursitis. I enjoyed my double whammy of chemo side effects. On the bright side, the pain in the arm was so intense, I didn't think about the other as much. There really is no bright side. It sucked. It all sucked.
Bursitis. I have never had Bursitis. I have no idea if it is Bursitis. It sounds good. Let's not forget the elephant in the room. Is it bursitis, or is this cancer rearing it's evil head again? We will find out!
We will find out because this upcoming week is my week of Scans! Happy Happy Joy Joy! On Tuesday, I have both a PET Scan and a Brain MRI. It will be my first since July. I have only been on my new chemo cocktail for a few weeks, so I am anxious for the results. Scanxiety at its highest!
On Wednesday, I meet with my Oncologist, Oncologist Radiologist, and I will see a new Neurosurgeon. I will find out the results of the scans on Wednesday. It will be a big week for me, medically speaking. We are hoping for clean scans and no disease progression. Rick and Jackie are coming to help with Mason. Jamie and I do need their help with Mason, but I think I need them here for me just as much. I do have Scanxiety, but at least it will be over soon.