Mystery and miracles: Part II

"I have seen many storms in my life. Most storms have caught me by surprise, so I had to learn very quickly to look further and understand that I am not capable of controlling the weather, to exercise the art of patience, and to respect the fury of nature." - Paulo Coelho

Wearing my new amethyst necklace from
my cousin Meagan

After the crazy week of tests and scans in early September, I finally was cleared to start the chemo pills. We didn't want to waste another minute, so I took my first dose of capecitabine on September 18. The regimen was fairly straightforward - I took 4 pills in the morning after a meal and with a full glass of water, and repeated the same drill in the evening. The pills aren't the kind of thing you run to Walgreens to pick up; they were delivered to our house by a specialty pharmacy in a bag labeled "CAUTION: Chemotherapy material" with biohazard symbols emblazoned on it. So, yeah... I don't touch the pills. I pour one at a time into the medicine bottle cap and then transfer it to my mouth. For about 10 days, I followed that routine easily and without complications.

In the meantime, we needed to tackle the inflammation issue that *might* have contributed to my elevated CA-125. After all the traveling to and around Alaska (10 flights in 8 days!), I had some swelling in my upper left arm and breast. Unfortunately, for breast cancer patients, developing this condition - called lymphedema - isn't uncommon. During my surgery, several lymph nodes under my left arm were removed, and then the whole area of my underarm and breast was irradiated for six weeks this summer. Lymphedema occurs when your lymph system has trouble draining properly. All the damage to the lymph nodes and channels in my breast and underarm caused lymphatic fluid to pool in several areas, created edema, swelling, and tenderness.

Inexperienced with post-surgery and post-radiation healing, I didn't know this was all happening! My bras fit less comfortably, but I just blamed it on weight gain. I thought the swelling was just part of the healing process. Oops. We were four days into the scariest week of my life before the oncologist realized that I had developed lymphedema. Of course, we cannot wholly attribute the elevated CA-125 to this inflammation, but it may have exacerbated it.

So... I guess I wasn't seeing enough specialists, and now I have new friends in the Cancer Center's Wellness Place. About once a week, I go in for physical therapy for my breast/arm and to get a lymphatic drainage massage. I also get to do a daily manual lymph drainage self-massage (We just taught Sean how to do the massage for me, too. He's not the slightest bit upset about that 😉). Oh! And, no more cute strappy bras with underwire. I'm to live in garments that have compression to keep the lymph fluid from pooling in any one place, even when I sleep. Hello to a lifetime of Playtex and sports bras.

Morning routine - chemo pills and lotion

Anyway, back to that new chemo... I was to continue taking the pills for 14 days, and then slated to have one week off the pills before beginning a second cycle. On day 11, I started having redness and minor pain in my hands and feet. A less-than-delightful side effect of capecitabine is Hand-Foot Syndrome, which happens as small amounts of the chemo leak into the capillaries in one's hands and feet. There's no way to stop it, and the best tactics for minimizing the issue include using boatloads of lotion - specifically Udderly Smooth Cream - and reducing use of your hands and feet. Also, no really hot water, no baths, no long showers, no dishwashing (bummer...). By day 12 or so, I could barely walk around the house. And, then the nausea and diarrhea started in earnest, coupled with a few bouts of vomiting. By the time I finished the last dose, I was a shell of myself, unable to complete basic tasks or keep any food in my body. On Wednesday of the off-week, Sean called the nurses at the Cancer Center, and they had us come in for blood work and to see a PA. I basically had to lay down the entire time; I had no energy. Believe me, in my experience, this chemo pill was way worse than the chemo infusion treatments I had last winter and spring.

Because I was feeling so horrible, the PA recommended we get an IV bag of fluids pumped into me ASAP. I headed up to the infusion center - a place I hadn't visited since March - for the IV. It took about an hour, and we headed home to rest.

I started feeling a bit better throughout Thursday, and by Friday I was ready to run some errands. But... my right arm felt strangely achy and full. I tried convincing myself I'd just slept on it funny, but even my addled and exhausted brain couldn't be fooled. It felt like when I was diagnosed with a blood clot last January. Since I'd had an IV in my arm just two days prior, we suspected that might have caused a new clot. Sean and I spent our Friday night (woo!) at the imaging center, where it was confirmed that we would be resuming the twice-daily blood thinner shots of yore.

We'd really had enough at this point. What more could we possibly take? We survived the weekend and the side effects largely dissipated. On Sunday night, we popped over to the UCHealth lab to have my blood work drawn; we would be seeing the oncologist the next day and then starting the next round of chemo pills. (I'd already determined I'd request a reduced dose for the pills!) With lymphedema in one arm and a clot in the other, the poor phlebotomist had to use a baby needle to draw a vial of blood from my hand. Once again, we got good results for the metabolic and blood count panels. And, we waited for the CA-125.

It came back almost two and a half times HIGHER than the last result for it three weeks prior.

After feeling physically ill for over a week, I transitioned to being emotionally destroyed. Sean and I were zombies until the next day's appointment with our oncologist. Let me tell you - it does not help when your trusted, whip-smart, highly-credentialed doctor is baffled. We talked through my chemo experience, agreed it was extremely awful, and determined that we'd reduce the pills by 25% for round two.

My peeling hands and thumbs - a side effect of this chemo

But, the CA-125 posed a whole other dilemma. In one breath, the doctor said we shouldn't place too much weight on a single blood test. And, yet, since it corresponded with being high during my diagnosis last fall, we can't ignore it. I had clean scans just a few weeks ago, so where is the antigen coming from? Real talk, friends... the doc believes there is cancer somewhere in my body right now. It may just be floating in my bloodstream, seeking a place to build a tumor. Another (hoped for) possibility is that these elusive cancer cells are being killed by the chemo and releasing the antigen into my blood as they expire. Or, the number could be related to inflammation in my body; I did have those horrible side effects from the chemo blowing up my digestive tract, menstrual cycle, hands, and feet. Bottom line, we need this current round of chemo - the one I complete today - to help us know more. At this point, our plan is that (a) if the CA-125 comes down after next week's test, we'll continue on the current course or (b) if the CA-125 goes up - whether it be by a little or a lot - I'll be getting new tests and scans as well as going to get a second opinion. My doctor did her residency at Memorial Sloan Kettering Cancer Center, so she'd like us to go there or to MD Anderson Cancer Center to get a fresh perspective on my case.

This is all a lot to deal with, and I am so blessed to have my husband Sean supporting me every step of the way. My prayer game is also on point - I'd be lost and hopeless without my faith in God's love, Word, will, and plan. And, I have the most amazing and selfless parents ever. They dropped everything and came out here for a week to keep me company, give me shots, and help around the house and yard. With my wonderful sisters supporting me from afar and my family/friends rallying around me, I am holding it together. Seeing a counselor at the Cancer Center helps, too!

Thank you to all of you reaching out to me. I'm sorry that in the midst of this struggle, I don't have much energy with which to reach back to you. The messages and gifts I've received are wonderful reminders of how much people care. Keep sending your prayers, healing vibes, and love - they matter a lot 💞

For the coming week, as we wait for our next decision point, I'm trying to keep a sense of humor and hope about how the chemo is working in my body. (We know it's doing something, since it's giving me side effects. Fortunately, we're managing these better so far this round!) I picture the chemo like a little Pac-Man making it's way through my bloodstream, chomping any and all cancer cells it encounters. Root for Pac-Man, friends!