I’m about to undergo my fourth and final infusion of oxaliplatin. This is hardcore stuff. It’s a “platinum agent” that goes directly into my arteries through a medical implant called a “port”, like I’m some kind of electronic device. What does ox do? Well, aside from making me feel awful–anemic, fatigued, nauseas, and sick–it kills fast-growing cells in my body. Those cells might all be benign cells, such as bone marrow, digestive tract cells, and hair follicles. Or they might be evil cancerous tumor cells. This aggressive chemo treatment is meant to reduce the chances of the cancer taking root elsewhere in my body.
I’ve learned a lot on this journey. To catch you up: I had concerns for more than a year before I was diagnosed with cancer. I thought I was having sudden and severe food allergies, severe enough for me to make multiple visits to my primary care physician. She assured me “It’s not cancer.” Her reasoning was that my white blood cell count was normal, so therefore, I guess she thought the pain was all in my head. I am still angry about that misdiagnosis. The takeaway: Pain is not something to be dismissed, even if your doctor tells you it’s nothing. Always pay attention to random pain. It means something.
The pains became worse and more frequent. Intestinal cancer is hard to find or diagnose, and I was misdiagnosed at two different Urgent Care centers. When it became unbearable for a week in December, my husband figured we should skip the medical centers and go straight to the ER at the nearest major hospital, Baylor Scott & White. The staff there kept me overnight, ran scans and so forth, and within a day, I was told that I had a cancerous tumor and needed emergency surgery to get rid of it. That was shocking. A colectomy is major surgery with risks, and I was asked to agree to it ASAP. I was otherwise healthy–no co-mormidities, I exercised daily–and I am relatively young. I never expected anything like this. But I am grateful to the gastroenterologist and surgeon at that hospital. They gave me the news straight without any sugar-coating.
So. The tumor was removed, along with 21 lymph nodes in order to stage the cancer. Recovery from that surgery was very painful and rough. But within two months, I was more or less back to normal. I went to an oncologist, who strongly recommended this “cap-ox” chemotherapy regimen, which is standard for colon cancer beyond stage 1. I sought a second opinion from an expert at MD Anderson, which is a major cancer center in Houston. The oncologist at MD Anderson strongly recommended the same thing.
Which brings me to now. I began the cap-ox treatment in April. It’s really no joke, as far as side effects go. And the effects are cumulative. They get a little worse each time. I am astounded that some people endure this chemo regimen for years, or even for their entire lives. I am very, very lucky in that my cancer has not metasticized. Otherwise I would need to be on chemo for much longer.
What side effects, you ask?
Well, right now I have a rash on the soles of my feet which makes walking difficult. It gets worse if I walk any distance. That’s an effect from the capecitabine pills, which are the “cap” part of the cap-ox regimen. So never mind my daily walks. I can’t do those. Nor can I go swimming, because chlorine will exacerbate the rash. I’m not exercising much these days. Also, I’m anemic. I feel weaker than usual. There are gastro effects which are somewhat mitigated with pills. I’m immunocompromised. So I’m not traveling. My hair? Every time I brush it, the brush comes away with a bird’s nest of hair. So it’s falling out a lot more than usual, yet no one can tell, because it was so thick in the first place! I guess it might all be gone if I was on this chemo for 2+ years. But that isn’t the plan.
The worst part of chemotherapy happens 2-5 days after each oxaliplatin infusion. That’s when the mitigating drugs wear off while the ox infusion is still working its cell-killing magic. On those days, I get so weak and exhausted, I can barely walk up stairs. I have to stop and rest every few steps. It’s really a pronounced effect. Keep in mind that I am a person who typically goes for brisk hour-long walks on a daily basis.
Oxaliplatin also causes sensitivity to cold. That means no ice water, no smoothies, no reaching into the freezer, no running my hands under cold tap water. If I do those things, I feel an electric shock sensation. Also, it worsens the neuropathy in my fingers and toes and lips, which is another terrible side effect. So far, the neuropathy has been temporary. It goes away after 8-10 days. I really hope it never comes back. I’m an artist and writer who needs to be able to type. But I have learned that it is permanent for some random unlucky patients.
Okay! That’s enough complaining. I just wanted to de-mystify what chemotherapy entails. There are different chemo regimens for different types of cancer; my experience is not universal to all cancer patients. But it is standard for colon cancer. It is also known as an aggressive treatment. There are slightly gentler treatments for patients with health complications.
On the happier side, this will be my final infusion! I expect to feel fully healthy and back to normal by mid-July. It takes a while for all this stuff to wear off.
And yes, the medical professionals will scan me and check up on me for 2 years on a regular basis. It’s important to monitor me, because cancer is evil and can be sneaky and recur. I am told that the chances of recurrences are 10%. I really hope I am a lucky one who never sees it again.
I’ve learned that cancer runs in one side of my family. My grandparents on that side both died from intestinal cancer–but they were in their 80s and 90s. Same with at least one of their siblings. One of my aunts on that side has defeated lung cancer and breast cancer. My parent on that side also has signs of blood cancer, and has defeated skin cancer. So… yeah. It lurks in genetics. I hadn’t known how widespread it was on that side of the family until this happened, and the family stories came out.
Wishing you all a healthy and cancer-free life!