After going through the procedures for over 3 years, I should be used to how the drugs will affect my body and mind. However, reactions have been all over the place, from extreme fatigue, nausea, severe bone pain and neuropathy, to chemo brain that causes confusion, loss of memory, acute stuttering, the use of incorrect words (for example, saying “lion” when I meant to say “car”), depression, and more.
But it was the last chemo appointment, on March 10, 2021, that affected me in ways I couldn’t have imagined. It was a horrifying experience that left a mark in my memory and in my soul. It deeply scarred me, leaving me to endure nightmares, crying sprees, panic attacks, and PTSD.
I was already in a bad way prior to the appointment because chemo wasn’t ridding my body of the cancer as doctors had hoped. That and I’d experienced a bad allergic reaction to the drugs back in February and I worried the same would happen at the next appointment.
I’d also been suffering excruciating pain in my abdomen and back, and in my legs and feet. Chemo has also taken its toll on my gut, causing harshly agonizing issues with my colon. My toenails have begun to fall off and my legs and feet often swell to nearly double their normal size.
Knowing I was approaching the limit on the amount of infusions of the aggressive chemo I’ve received since my diagnosis, I anticipated that my oncologist would alert me to a change in treatment plans, a switch to experimental drugs and/or immunotherapy. But I was scheduled to receive this last infusion of chemo, the one on March 10. The one that nearly killed me.
Before receiving the chemo infusion I met with my oncologist. She indeed informed me that the chemo infusion on that day was to be my last, and that she planned to start me on a round of an extremely expensive immunotherapy.
Instead of having questions about the treatment plan, my thoughts immediately went to, “We have no insurance and no income.”
With the doctor visit behind me I headed to the oncology treatment area to receive my final chemo infusion. The nurses there were prepared for me and for the possibility of another allergic reaction. As chemo patients know, we’re given a cocktail of meds to hopefully ward off those sorts of reactions. This time, though, they also had epinephrine on hand, and a nurse stood watching in the event something went haywire.
The chemo was introduced, and my fears were soon realized. I couldn’t breathe. I couldn’t inhale and I couldn’t exhale. Nor could I speak. I was sweating profusely. My heart fluttered at the pace of an overwound cuckoo clock and felt as if it would pop free of my chest at any moment. This was far worse than the previous anaphylactic reaction. Fortunately, the nurse looked my way, called for help, and came running. I heard a call over the PA system for the Rapid Response team. I’d coded. I’d stopped breathing.
Then I came to, and coded again, and again. The event seemed to go on forever. In reality, the episode lasted only a few very long minutes. Not being able to draw a single breath is absolutely horrific. So is hearing the call for a lifesaving team to revive someone when that someone is you.
As a result, I was not able to continue my final chemo treatment.
It’s particularly frightening to go through something like this when you're alone. Since COVID showed up, I’m not permitted to have anyone with me during these all-day infusion treatments. It’s scary and it’s lonely. My poor husband sits in the parking lot all day, each time I have an appointment. He refuses to leave the hospital grounds in case I need him. We live over an hour away from the cancer center.
When I regained consciousnss that day, my doctor was there gently rubbing my hand while my entire body shook uncontrollably and violently, like a jackhammer, as a result of a shot of epinephrine injected into my belly.
I was able to exchange a few texts with family members but that was the extent of contact with anyone other than medical staff. Sure, they’re good at what they do, but it’s not the same as having a loved one comfort you when you’re facing the hardest circumstances you’ve ever experienced. Not to mention that this time it was life-threatening.
I had to remain at the cancer center until the shaking eventually subsided, and then I was released to go home with not much more than a pat on the back and a “good luck.” They’d be in touch when I was to begin immunotherapy, a treatment that could cost nearly $10,000 every 28 days. With no income, no savings, no health insurance, and no help from the government (they’ve said we’re not eligible), well, it’s daunting to say the least.
The terror of that last day of chemo was far from over, though, because that night was when the gripping panic attacks and bad dreams began. When I woke I was in a full sheet-sheet-drenching sweat, feeling as if I couldn’t breathe. In my dream I was alone and without any means of getting help. I was scared beyond comprehension. And I cried. And I cried.
Between sobs I called out for my husband. Of course, he was there beside me. Actually, he’s never out of earshot and when I need him, he comes running.
Those “I can’t breathe” nightmares are regular now. They also occur when I drift off during the daytime. I sleep a lot these days, waking to eat a few peanut butter crackers or whatever will stay down that day, watch TV or read, take medications, and shower. For pain, doctors have me taking both methadone and oxycontin, and most of the time even that powerful combination does little to ease the terrible discomfort.
Speaking of showers, my equilibrium is not the best in the world these days, and while in the shower a couple of weeks ago I fell completely out of the shower and banged my head super hard on the corner of the vanity. On the way to the floor, I grabbed the shower curtain and away it ripped, hooks, rod and all. My husband heard the commotion and burst through the bathroom door, climbed over me to shut off the water, and then helped me to bed where he dressed and applied and ice pack to my bleeding head wound.
So, this is where I am today, with a PET scan lined up for tomorrow and immunotherapy for Wednesday, providing that my white blood cell count is high enough to permit the infusion. Well, that and a few other things that must meet the criteria.
As always, I’m grateful for all the prayers, good thoughts, well-wishes, and gifts of food, items of comfort and humor, and more.
I’m also deeply appreciative of the financial support. With it, I’ve been able to continue purchasing medication and food, and paying utility bills, all because of your kindness and generosity. I honestly do not know where I’d be today with you.
We desperately need all the help we can get. It causes me great pain to ask for help, and anyone who knows me is acutely aware that I have never been one who asks for anything. Until cancer showed up, that is. And because of cancer, I’m at the end of the road, where asking for help meets going hungry or without medicine.
From the bottom of my heart, I thank you all, and I wish good health and a bright and happy future for you and your families!
By the way, I HATE CANCER!
- Jon Jenkins
- Deborah Boone
- Sharron Houdek
- Melinda Leigh
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