Truth in Advertising: Side effects of chemotherapy

Baldness. Puking. Fatigue. These miseries likely come to mind when you think of chemotherapy. At my first oncology consultation in August, I was given a folder full of teaching materials, which I mentally retitled “Welcome to Cancer.” The information inside, however, did not hit with warmth nor welcome. Neither did it bode well that each of the infusions I was to receive merited a three- or four-page summary of possible side effects, warnings and precautions, and when to call your doctor.

You know I had to do the math. Taxotere, 19 possible side effects.  Carboplatin, 8. Herceptin, 17. Perjeta, 10. All four of these medications promised to serve up bone marrow suppression, nausea and vomiting, and peripheral neuropathy. Side effect commonalities of two and three of the four drugs included such things as hair loss, fever, headache, weakness and tiredness, congestive heart failure, pain, constipation, diarrhea, sores in the mouth, change in taste and/or smell of food, rash. Additionally, there are unique side effects to each medication that can be extremely severe. This is not an exhaustive list because I fear I may have already exhausted you with just this much.

The oncology nurse carefully reviewed the worksheet “When to Call for Help” and placed it prominently in the front of the folder. Round one was for learning how my body would react to chemo, she said, and stomping out the side effect fires as best we could when they arose. For round two, we could work preemptively to get ahead of the side effects and have greater success in treating them.

Unfortunately for me, I have a condition called congenital long QT that makes it unsafe for me to receive medications that are known to prolong the heart’s QT interval. Unsafe, in this case, means an abnormal heart rhythm that can lead to sudden death. My oncology team decided I could safely receive IV Emend (aprepitant) as part of the pre-chemo medications. This medication prevents nausea for three days, and it did exactly that. Whew, truth in advertising.

For the first three days of cycle one, I was thinking that if steroid-related insomnia, low energy, a new cold sore, and a smattering of mouth ulcers was all there was going to be, I could handle it. Yeah, no. Greater truth in advertising struck on day four and lasted until day 19.

Welcome to cancer.

The mouth ulcers multiplied exponentially, insomnia persisted, I started having headaches. Deep bone pain resulted from the bone marrow-stimulating injection I received on day 2 of the cycle. Nausea, belly pain, and lack of appetite were constant companions, as was diarrhea—the kind that scoffs at the maximum dose of Imodium. If you could imagine the insanity of doing a colonoscopy prep every single day for for two weeks in a row, you’re on the right track. Combined with the upper GI disturbances I was having, dehydration inevitably resulted.

On Labor Day I went to the ED to receive fluid and electrolyte replacement. I felt better for several hours, and then it was all back again, as bad as before. Two more visit for fluids occurred that week at the infusion center in Wyoming. Another dose of IV steroid was given. A modest amount of Lomotil, a stronger antidiarrheal medication, was prescribed.

I’ll spare you more of the diarrhea monologue, as I can’t omit the tale of the chemo acne that first dusted my face, scalp, ears, neck, and chest with whiteheads, then proliferated into the worst mess of lesions I’ve ever had in my life. They were painful, they itched, they bled and scabbed and peeled, and I felt grotesque. My ear piercings swelled and filled with pus as well. I whined to my friend Barb that I was starting to look like Wade Wilson without the Deadpool mask and just wanted to put a bag over my head. She let a beat pass before counseling, “Don’t use plastic.”

Because I’ve had two early-stage melanomas in the past four years, I still have quarterly full-body skin exams at the dermatologist. This already scheduled derm appointment was a twofer: in addition to hunting for anything suspicious for melanoma—good news, nothing found, the provider prescribed an antibiotic lotion for the acne. She mentioned I was also susceptible to fungal skin infections and prescribed another treatment to prevent that. Fungal skin infections? Good Lord, that wasn’t on any of the welcome to cancer lists.

Round two of chemo was Monday morning, September 16. The visit started with port access and labs, followed by a provider visit with oncology NP Cara, then the infusions. Those of you who know Sandra Hoffman know that I had an excellent chemo companion for the day. I’d prepared written notes for the visit, and Cara studied them carefully, as if she had all the time in the world. She said that she and Dr. Beckwith had discussed my case last week and were thinking of reducing my carboplatin dose, as it was probably the main culprit for my side effects.

Carboplatin dosing was indeed reduced, and I was reassured that the lower dose would still be effective. My hemoglobin and hematocrit have tumbled significantly, though platelets, white cells, kidney and liver function, and other chemistries remain in normal ranges. Now I know why walking causes me to breathe a lot harder than before; I thought it was dehydration and hot weather. Cara said blood transfusions may be in my future.

The three of us brainstormed collaboratively through other adjustments and are going to start with home IV hydration infusions three days a week. “Magic mouthwash” was also added to the arsenal for mouth ulcers. I requested—and received—a prescription for more therapeutic dosing of Lomotil, to be given in greater quantity and more often. One tablet twice a day made no difference at all. You may correctly assume that I adjusted the dosing upward on my own and discovered it was more effective. Nurses are both good patients and bad. Cara would like me to try using lorazepam for nausea, and if further nausea treatment is needed, she would be willing to try a small bedtime dose of Zyprexa (olanzapine). Oral Compazine was a fail.

The best news of the day came when Cara pulled out her tape measure and measured the . . . I’ll just call it the tumor glob. Three weeks ago, the mass of three connected tumors was hard and slightly raised and externally measured 9 x 6 cm. On Monday, it was no longer raised and felt much softer, and measured 6 x 4 cm. I was told this treatment could drastically shrink the tumors and how exciting that it is doing just that. I’ll have another breast MRI after the third round of chemo for more detailed information on that front. Pun intended.

My infusion nurse was young and sharp, efficient, and had a great sense of humor. Like the infusion nurse I had three weeks ago, her nursing soul is alive and well and promises great hope for the future. It made me and Sandy reminisce on excellence in nursing care, which was always a shared priority of ours. Given the present climate of healthcare, we understand that a lot of caregivers are not okay. Sadly, this means that many patients are not getting the best care they possibly could.

Did you know that “whelm” is a word? It means to submerge, cover, engulf, overpower, and crush. I wonder why we say “overwhelm” when “whelm” would do? Probably because it sounds weird. Anyway, I am both whelmed and overwhelmed by the greetings and well wishes and heartfelt words you have shared with me in the wake of publishing my blog. And for those who have sent meals, messages, cards, gifts and packages? I cannot adequately explain how much my heart and spirit are nourished by each of your kindnesses. Thank you.