Control

January 11, 2019. One thing that I’ve noticed since the beginning of this journey is my desire to have some control over the direction my life is taking. Especially when I feel so completely out of control over the direction my life is taking. So what can I control? My diet—no sugar, no alcohol, no processed foods. All my choice. That’s one.

What else? To work or retire. I chose retire. Happy dance. That’s two.

Hmmmmm. Whether to get chemo or not. I chose, reluctantly, chemo. That’s three.

Well, now that I’ve chosen chemo, I have another choice. Let chemo take control of my hair or…

No. I didn’t shave my head, but the closest thing to it. I just wanted to control something about myself, even if only for a brief period of time. And you know what, I like it. I like this short, easy, carefree cut. I’m hoping that when those little follicles do start dropping into my hand, I’ll feel a little less like a victim of circumstance.

Monday, January 7. Steve and I drove to UCSF for a blood draw and a pre-chemo appointment with Dr. Rugo at 4:00p which got moved to 4:30p and then she arrived at about 5:30p. SSDD. She said “they” were thrilled I had opted in for the chemo. Thrilled? Really? Okay. She confirmed with me that I would be infused the next day and that all my future appointments were set. She did imply she would like me to do 16 treatments rather than 12. That 12 was the minimum, really. I’m thinking we’ll have that conversation if I make it to number 12. She prescribed three different nausea medications to take, and she gave me a form to take to DMV for a disabled parking placard so I don’t have to pay for parking during my treatments. Nice. Weird. But nice. Parking is between $28-$32/day.

More control. One more thing I decided I could control—a 24-hour fast prior to chemo which has been shown to lessen the side affects from the poison. Two friends on separate occasions had brought up the idea of fasting. Given my recent loss of weight, it didn’t seem like a good idea. But once I started reading more about it, I thought I could easily handle a 24-hour fast. So I quit eating and only had water beginning at 2p on January 7.

On a side note, on December 10 the Mayo Clinic completed a clinical trial “Short Term Fasting Before Chemotherapy in Treating Patients with Cancer” https://clinicaltrials.gov/ct2/show/NCT01175837 where participants fasted 48-hours prior to treatment. The results are not yet known, but the science behind it makes sense. In the April 20, 2018 issue of US News and World Report an article “Can Fasting Improve Chemotherapy’s Effects? Feed a cold, starve a cancer?” Valter Longo, professor and director of the USC Longevity Institute at the USC Leonard Davis School of Gerontology stated, “In all organisms starting from bacteria, starvation makes the organism go into a protective mode.” It seems a lack of nutrients coming into the organism changes the way normal cells function. But cancer cells are apparently exempt from this protective-mode response because of genetic mutations that cause the cells to get “stuck” in an overactive growth process. When cells become cancerous, they become “constantly active,” Longo says. “They basically prevent entry into the protective mode, so now you have a way to distinguish all cancer cells from all non-cancer cells because all non-cancer cells respond to fasting by becoming protected, and the cancer cells by definition ignore this order and they continue to grow.”

January 8. Chemo Day. I wake up fully and overwhelmingly aware of what the day will bring. Right now, crying seems like my only good option. So, I quietly cry so as not to wake Steve. Then I drink some water, grab my tablet and respond to some text messages and emails from well-wishers. It’s comforting. Before leaving for my Chemo Teach appointment, we shower, and then Steve leaves to enjoy some breakfast and coffee. While he is out, I sip water and read the chapter entitled, “The Beauty of Discipline” from the book Mindfulness for Beginners – reclaiming the present moment—and your life by Jon Kabat-Zinn. June gave me this book at Christmas. Today this one chapter especially resonates with me.

“We can experiment with non-doing. If we are willing to encounter our old habits in this way, without turning non-distraction and non-doing into unattainable ideals, and if we can bring gentleness and kindness to the process over and over again for even the briefest of moments, then we might test the very real possibility of being at home and at peace with things exactly as they are without having to try to change or fix anything in this moment. When it comes right down to it, this orientation constitutes not only a gentle and healing discipline. It is a radical act of love…and of sanity.” —Jon Kabat-Zinn.

So for today, on my first chemo day, I’m going to practice a radical act of love. I’m going to try to embrace being at home and at peace with things exactly as they are. I’m giving myself the gift of sanity in what is clearly an insane situation.

Oncology Nurse Robin. Chemo teach for me was really chemo refresher. Robin’s best advice was to stay ahead of the nausea by taking medication before you need it. Because there will be nausea. She gave me a folder with critical numbers to call for whatever questions or experiences might arise including when to call 911. We like Robin. She wrote notes on all the papers in the folder as she talked, and crossed things out she didn’t think applied. We talked about side effects for both the Taxol and Carboplatin. Then she gave me some really good news. They will only give me Carboplatin every third treatment. So rather than a 3-hour infusion, it will be closer to a 2-hour infusion. She mapped it all out on a calendar, marking my Tuesdays with TC or T. Here are my No’s: no dentist, no mani/pedi, no raw fish or meat, no alcohol, no supplements (except for calcium, D3, Turmeric, B12, strontium). She reminded me that my fatigue would be cumulative, my hair (when it falls out) will grow back, and the nausea I experience will be the same every time…not cumulative.

Chemo Time. When I checked in at the infusion center, they wrapped a paper wristband around my arm that is scanned during the remainder of the day for identification, although they asked my name and date of birth every time just to confirm it was true. Steve got a visitor’s badge. They took my vitals and weight. Soon my name was called and a sweet, young, smiling oncology nurse named Angie (I think that was her name) told me how the rest of the day would unfold. She let me choose an infusion chair (one next to a window), inspected my left arm, put some heating packs around it to plump the veins and soon after I was being poked and hooked up to an IV. They started with the anti-nausea meds which took a good hour, then Benadryl (to help prevent any allergic reaction)—about half an hour, followed by the Taxol—another hour, and finally the Carboplatin—about half an hour. The anti-nausea and Benadryl made me sleepy, but the Benadryl also causes restless leg syndrome, so it was a twitchy sleep.

For part of the time, there were two other patients in the room with me, but both finished before me. One was getting immunotherapy and the other chemo, but neither were weekly infusions, so I may or may not see them again. I asked Angie how many infusions they did a day, and she said around 80. Eighty? That’s just not right.

Once the infusion was done, they removed the tape and needle and I was free to go. I didn’t feel too bad. Really. The drive home was easy. We made one stop in Sebastopol to pick up a supply of bone broth my dear friend Patty had made that is supposed to not only be comforting but help support my immune system.

I feel surrounded by angels on earth. Sometimes I’m overwhelmed by the love, the kindness, the endless caring and offers of support, but I’m always grateful. Deeply appreciative. Completely humbled. Although speechless at times, my heart explodes from the tenderness. You all nourish my soul and give me super-human strength on the inside even when I look tiny and wimpy on the outside.

“Hope is the only bee that makes honey without flowers.” —Robert Ingersoll