Red Devil, Doubts and Departures

I wish chemotherapy side-effects came with an expiration date. Or, alternatively, that patients received a post-infusion “Best By” sticker. Under these scenarios, I would know my worst side effects “expire” after 12 days, or that I will recover and be my “best by” some date soon thereafter. Perhaps then I could make plans and actually stick to them. Even some small amount of predictability would be positively peachy…🍑 The pre-infusion anxiety of knowing I’ll experience side-effects pales only in comparison to the unknowingness of how long they will last, and how punishing they will be.

In my last post I mentioned an expected 3-5 day Red Devil side-effects period, because that’s the norm. Mine, however, lingered for a solid 12 days. The first two days post AC treatment were not all that bad, as nausea and vomiting were controlled with the highly effective combination of Aloxi and Emend, anti-nausea drugs formulated specifically for chemotherapy patients. Oh, the marvels of modern medicine. My thoughts always turn to patients past who suffered through distressing and debilitating side effects without the benefit of such effective inhibitors. On day 2, as advised, I began taking oral Zofran every 8 hours. Fatigue, as always, was pronounced, and my appetite was non-existent. If I didn’t eat, I felt sick. And, if I did eat…I felt sicker. It is a stomach discomfort like none other I have ever experienced. I can only describe it as a burning emptiness, often accompanied by dyspepsia, nausea and gastroesophageal reflux. I feel no familiar hunger pangs, nor do I experience any ordinary abdominal or bowel sounds. When I do eat, I quickly feel satiated, then full for an inordinately long time. By day 5 I began to feel as if I might be recovering. But, new side-effects were looming.

When #1 son, Ethan, arrived for a visit on day 6, a heavy blanket of exhaustion had returned, and I was coping with stomach issues. I recommenced the Zofran, which definitely helped. But again, I broke out in a rash on my face, neck and head, which began to clear up in a few days with the application of Clindamycin lotion. My fingertips split open, making it hard to use my hands. My nail beds became bruised, and my toenails turned black. On day 8 an eruption of mouth sores made eating, and even sleeping, impossible. The pain and swelling were dreadful. I began interchangeable use of oral Carafate and a baking soda with salt mouthwash. I was advised to begin immediate prophylactic use of these rinse agents throughout my next post treatment period, as mouth sores are easier to prevent than to heal. I will definitely follow that prescription after this Thursday’s AC infusion…

Miserable w/mouth sores

Ethan and I spent some time with family and went to see the movie, Only the Brave. But, mostly we just hung out together, as his trip was limited to a few days. Ethan took good care of me, making certain I ate and stayed hydrated. And, he prohibited me from doing any dishes…a definitive expression of his support and devotion to my recovery!

Ethan keeping it clean in the kitchen

Oh, how I love that young man…

#1 son, Ethan

USC game day w/Ethan

The despair I felt as Ethan departed was only slightly diminished by the thought of Neal’s impending arrival just a few days later. Every departure feels like another loss; I just can’t entirely release regret over being deprived of valuable time with my husband and sons. Most days I am filled with faith, confidence and optimism. But, when anger and grief gang up on me, I fold into the fetal position.

This is just my process. I can be brave and strong, but I also cannot completely ignore or forget the fact that a rare, aggressive and triple negative breast cancer associated with a particularly poor prognosis and high risk of early recurrence is working hard to take me from my family.

It already has.

How do I ignore the fact that despite improvements in treatment, and the vigilant efforts of my MD Anderson team to interrupt this sinister plot, the survival rate for patients with IBC remains significantly worse compared with women with non-inflammatory, locally advanced breast cancer (LABC)? How do I reconcile my fears about persistent, recurring breast pain and a “limited” response to chemotherapy so far? My fears are not groundless. Being in limbo until the mastectomy pathology report undermines whatever equilibrium I manage to muster. How could I not be conflicted over where to spend my precious time? While, there has been a growing and gradual acceptance of my situation, I fantasize about returning to California and taking the risk that I will find Inflammatory Breast Cancer care as competent and experienced as MD Anderson’s. I know that’s not really an option, as MD Anderson’s IBC clinic is unparalleled in California. But that doesn’t stop me from considering and reconsidering it from time to time. And, then there’s also the fantasy of relocating my husband, sons and pets to Houston.

Buddy the Beagle would absolutely love the food and family attention.

Buddy Hefner

But poor, old Tootsie would likely become so disoriented she’d have to be medicated. Here she is trying to find something she “lost” in the pantry…🤔

“Maybe I left my treat in here?”

Fella, in true cat fashion, couldn’t give a damn where he lives, as long as there’s plenty of tuna, chicken, a personal heater and his bff, Maverick…who’s fine anywhere his dad, Ethan, and a comfy sofa are available.

🎶Baby, it’s cold outside

Fella and bff, Maverick

Neal’s visit was painfully short, but productive. He put me to work on several new projects that required a great deal of time and focused attention, but distracted me from the occasional bout of nausea, dyspepsia and vomiting.

Brother Patrick drove in from Austin on Saturday am. We watched a lot of college football, then met some family at Hugo’s for an early dinner. Always a good sport, Neal agreed to dinner plans that would interrupt his USC Trojans football game viewing. Thank goodness for cell phone Internet access!

Heading out to dinner

Hugo’s with some family

By the time Neal was departing, the fatigue and stomach upset had begun to dissipate, making neighborhood walks and a bowl of Blue Bell ice cream possible. I refrained from constantly counting our remaining days and hours together. So, that’s progress! I squashed all my sorrow until the night prior to, and the morning of, his departure. That’s when his calming presence began to remind me of his approaching absence. It is indescribable how just being in the same room, a quiet comfortability between us, produces in me such a sense of safety, peaceful contentment and repose. He’ll be back 12/20-12/28, along with Ben and Erica.

As my mother would say about my own upcoming visits: “I’ll be counting the days.” And, I may or may not sleep on his side of the bed tonight…

 

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