I’d like to do some minor house cleaning and a load of laundry today. I need to make some phone calls. I could certainly use some exercise. I want to expeditiously complete this blog entry so I can move on to the necessary chores and activities that formerly defined “normal” daily life. I clearly and unmistakably sense, however, the utter futility of my aspirations. Efficient writing today would require immediate disentanglement from the bulky blanket of fatigue and foggy thought that currently enwraps me. Despite numerous resolutions to stand up and shake it off, I’m powerless to climb out from beneath its cover. So here I sit searching for words, drinking Commonweal tea, listening to Fleetwood Mac’s song, “Future Games,” and wondering if and when I’ll muster the moxie to tackle more mundane tasks, despite how I feel…Probably not today. Definitely not today. The forecast, it appears, calls for a stalled stationary front between my brain’s prefrontal cortex demand to, “Just do it, already!” and more dominant limbic system’s goad to, “Just chill out,” remain blanketed, and keep playing future games with my routine responsibilities.
The fact is, I’m tired. I’m always tired. And today my bones, muscles and joints hurt – a side-effect of the Neupogen injections to stimulate neutrophil production, a type of white blood cell, which have fallen too low in past weeks. The Neupogen is necessary to protect me from infection, and to keep me on track for weekly chemotherapy treatments. It’s a mixed blessing, to be sure. It’s still undetermined how well my dosing schedule is working. When I showed up for chemo last Sunday, the infusion nurse called me to the phone to speak with the doctor covering for my oncologist that weekend. My numbers were low again despite the fact I’d received 2 Neupogen injections earlier that week.
The doctor, however, cleared me to receive chemo given the Neupogen injections to follow. This Sunday’s blood draw (Aug 20) will reveal how well I rebounded this week with the drug’s neutrophil boosting assistance.
Dyspepsia has taken up permanent residence in my stomach despite all eviction attempts. Miralax makes a difference, but is not a cure. Sleep is an ongoing problem. Yes, steroids promote wakefulness even in the face of extraordinary fatigue. But, knowing Neal will not be there should I awaken in the middle of the night is unsettling on so many levels. It is only in marriage that I’ve experienced the type of deep, restorative sleep engendered by trust, safety and security. We have never been separated this long. It is simply abnormal for me to sleep alone after so many years, and I’ve not yet adjusted. While I don’t necessarily miss his “geyser man” snoring, vampire nightmares, sleep-talking, and blanket stealing, I could not have anticipated the profound loss I feel by my husband’s absence from the other side of the bed. His upcoming trip to Houston, August 29th-September 4th, will be of tremendous comfort.
Ethan’s visit this past week was far too short. He is very busy with his renewable energy work and graduate school applications, so longer trips are not currently possible. I’ll take whatever time together we can get. Ethan and I just hung out the first couple of days, watching tv, talking, and walking to Rice University. He prepared breakfast for me, washed dishes and closely monitored my well-being.
Ethan is sensitive, thoughtful, intelligent, responsible, fiercely independent, and kind-hearted. And, might I say, very handsome! I am exceedingly proud of the man he is becoming, and I am grateful he possesses the age and maturity to cope well with this family crises. I think of all the young women whose child-bearing ability is forever changed by cancer, or who are parenting very young children through their illness. Out of state separation in order to seek the best possible medical care imposes quite another level of burden and hardship on families with young children. My sons may still be on the long and winding road to complete adulthood, but there are more miles behind than ahead of them.
We spent Friday night at Jenny and Clay’s home in Katy, where Patrick, Gerrit, Daley and Brax joined us. Jenny baked a cake to belatedly celebrate Gerrit’s and Ethan’s late July birthdays. I had missed Ethan’s 24th birthday in California, so it was sweet to honor it here in Houston.
When we made the requisite stop at H-E-B on our way to Jenny and Clay’s, I spotted a Supercuts in the adjoining parking lot. I asked Jenny to let me run in and inquire about getting the rest of my hair shaved off. MD Anderson’s salon provides the service as a courtesy to patients, but I didn’t want to wait until Monday. “Hi! I’m a chemo patient, and I’m sick of my hair falling out all over the place,” I said to the stylist as I removed my cap. “How much would you charge me to shave off the rest of my hair?” She just looked at me for a couple of moments. Then, she shook her head. I was a little confused until the stylist next to her said, “We got you. Don’t worry about it. We’ll take care of you.” I teared up, and kept saying, “Thank you, thank you.” My head quickly and expertly shaved, Kim, the stylist, said, “I’m going to wash your head for you, too. Come over here to the sink.”
Kim refused to accept a tip, hugged me deeply, and sent me off with prayers and best wishes for a complete recovery. This is the Texas I grew up in. No matter how big, bustling and busy it’s become, I still find friendly, big-hearted, helpful people everywhere I go.
I am very happy to be shed of the shedding! But, if there were any question before, I really look like a cancer patient now. I think I could easily get a part as an extra on an apocalyptic-themed movie or television show. 😉 I barely recognize myself any more.
On Saturday we had lunch at Mia’s Table with about 15 family members. I was a little nervous about eating out due to my infection risk. But I banked on the Neupogen doing its job. However, my count was low the following day despite the drug, so now I’m being more cautious about restaurant dining.
And, I’m once more wearing gloves and a mask when in public. My fingertips began splitting open, a chemo side-effect that makes the skin rough, dry and raw. Jenny concocted a mix of antibiotic ointment and baby oil gel, smeared my fingers with it, and encased them in surgical gloves. I slept in the gloves, and it really helped.
After lunch, Ethan, Patrick and I returned to the apartment. I like to be nearby the hospital the night prior to chemo so I can organize and pack my hospital necessities: Wonder Woman water cup (a gift from my pal Debbie Herder), iPad, iPhone, socks, hat, scarf, lemon candies to use during saline port flushes to cover metallic taste, snacks, a book, wallet, sunglasses, and reading glasses.
Sunday’s chemotherapy session went very quickly and smoothly. Port accessed and blood drawn, Ethan, Patrick and I had breakfast in the cafeteria while we awaited my infusion. After a few hours we were taken to my suite early, where I was tucked into bed with warm blankets and hooked up to my IV. Jenny joined us later.
Niece MaryAnna Nagorski (brother Carl’s daughter) had graciously and enthusiastically offered at lunch the day prior to drive Ethan to Hobby Airport for his 2 pm flight on Sunday. When MaryAnna arrived at MD Anderson to pick Ethan up, I knew saying goodbye would elicit strong feelings in us both. A few tears for me, a strong and stoic demeanor for Ethan, we shared a long, deep hug and multiple expressions of “I love you!”
I’m almost never the one who first releases a hug with my sons. I long for their loving embrace. Their arms around me, I am once again Mommy; that childlike, mother-son connection momentarily restored. Our abiding bond fills me with an indescribable sense of value and purpose.
Cancer sure as hell isn’t going to force me to let go of those I love any time soon.