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…

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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!

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Ethan keeping it clean in the kitchen

Oh, how I love that young man…

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.

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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…🤔

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“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.

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!

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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10 Responses to Red Devil, Doubts and Departures

  1. Linda Squires says:

    Jill,
    We will miss you at Thanksgiving! We are all greatly rooting for you to beat cancer. I know you’re giving it your best effort. You are very brave. You have already endured so much. I hope the days, weeks, and months ahead come quickly and you continue to get better. You have already made so many sacrifices – keep fighting!
    Love, Linda

    Liked by 1 person

    • Jill Flyer says:

      The thought you put into your words, Linda, really strikes a chord with me. It’s comforting to know I have you all in my corner, holding me up, and believing in my recovery. Coping with the passage of time is like riding waves…up and down I go…But, there are so many more positives than negatives. I meet tremendous people at MDACC from all over the world who endure far more than me. And, of course having my sisters, brothers, nieces, nephews, friends, etc to help has been a gift, and made it possible for me to be “home” in Texas.

      Like

  2. Cheryl De Bari says:

    Hi Jill,
    You are so brave and strong. Sending you and your family love.

    Liked by 1 person

  3. Debbie Roderick-Herder says:

    You are never far from my thoughts, and always in my heart. My mind drifts to you often over the course of my days. I love you Jill, be being brave and keep on making cancer your bitch.
    Fight on warrior woman.

    Liked by 1 person

    • Jill Flyer says:

      Love you too, friend! I often think of you…and Tex…Wonder how you’re all doing…Wonder if the ever-conscientious caregiver is taking good care of herself…Guessing Tex is keeping you on your toes, as usual…Just don’t neglect to soak your feet in some warm water, and request a foot rub now and then…❤️

      Like

  4. Della says:

    Rest up girl. And get your strength back. You’ll get there but try not to overdo it. I’m glad Neal and Ethan were there to help.
    Love you much ❌⭕️😘

    Liked by 1 person

  5. Beverly Carman says:

    With all my love to you, and my own experience with my personal journey with breast cancer my best advice I can give you is what my surgeon told me before I did Chemotherapy. He said to me, “Beverly, we all have options”. You have options too. He specifically mentioned that I may want to look into other treatment facilities than MD Anderson to suite my decisions for treatment. I decided to do my state of the art radiation treatment with MD but I chose to do my Chemo treatment with Texas Oncology……. Go with your heart Jill. In the meantime my heart will be with yours. I thank you for the up dates about your heath. I think and pray for you every single day. All my love!! Beverly Carman

    Liked by 1 person

    • Jill Flyer says:

      Thank you, Beverly. I appreciate your feedback. Yes, I do have some options… they’re just not necessarily in my best interest! Were this another type of breast cancer, I would definitely have more options. Triple negative Inflammatory Breast Cancer is far too serious to mess around with…It requires very specialized expertise, aggressive treatment, and experienced doctors who know and understand well this disease. Because it’s so rare, I don’t want to take a chance with doctors who’ve treated only a few cases. It was my husband and sons who said, “We want you to stay there and get the best treatment available.” I knew that was the right thing to do…It’s just hard to do. I’m more grateful than anything that I am able to be treated at MDACC. Expressing all my conflicts is just my way of reconciling a lot of mixed emotions…

      I look forward to seeing you sometime! ❤️

      Like

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