But since I have anal cancer, I think and speak about it every single day. And I'm learning all I can so that I can share it with others. As I've said before in my blog, learning is my way of having some control over what's happening inside my body, as well as processing the fear and depression that accompany knowing that I really have zero control on how my body will physically react to the chemoradiation. The lists of side effects and personal accounts of suffering I have read are daunting and sound brutal; but for every horrific experience I read, I know there are others who were able to go to work through their treatment or suffered little. I hope I am one of the latter, but am trying to prepare myself in case I am among the worst. It's not easy.
I began my treatment on Monday, October 5, and I just just completed Week 2 on Friday, October 16. Here are some of the facts.
Week 1:
Day 1: Getting the show on the road.
- Blood draw - First thing I had a blood draw and will continue to have one usually every week to monitor the effects of the chemoradiation on my blood numbers.
- Next, I met with the oncology pharmacist to go over the dosage and side effects of the infusion treatment I was to have later that morning.
- Infusion treatment begins. Because the cancer center pharmacy makes the actual liquid infusion as needed, I was first hooked up with an IV saline solution as I waited the 45 minutes. During that time I looked at FB, had a Starbucks bottled mocha, and checked out all the goodies inside my new goodie bag given to each new patient. Lucky me!
- Facts About Mytomycin C: I was given an initial infusion of this anti-cancer drug which is designed to cure my cancer. (I like that word, cure.) This medication is specifically compounded in the hospital pharmacy under a special air venting hood due to its toxicity. (Now that's a scary word.) This is an anti-cancer chemotherapy drug classified as an antitumor antibiotic. It works by interfering with the function and structure of DNA, which prevents cell division and causes cell death. However, because it is non-discriminatory and because all cells are constantly renewing themselves, healthy non-cancerous cells may also be destroyed. (That's the bad news.) Most importantly, this chemo med is a radiosensitizer that essentially boosts the impact of the radiation, which is the "big horse" in this fight against cancer.
- Possible side effects: The list is rather long of the side effects associated with this powerful drug (think fast-talking disclaimers on TV drug ads), but the pharmacist highlighted only a few for me to be aware of. My plan is to be as proactive as I can to avoid or limit as many of the following side effects:
- Neutropenia - the decrease in white blood cells that can lead to a decrease in my body's ability to fight infection. In that way being in Covid self-isolation is good because the few times I do go out, most people are masked. Also, I was told it can take 4-6 weeks for the full effect of the decreased blood count to register with this medication, which explains why in the weeks after treatment ends side effects can be worse than during treatment.
- Anemia - This is a low red blood cell count and usually manifest itself later in treatment as increased fatigue.
- Mouth sores - This starts with dry mouth or canker sores which if severe can interfere with eating.
- Nausea - A very common side effect, but with prescription meds can be dealt with.
- Hair loss - Unlikely head hair loss, but possibly down below.
- Fatigue - Predicted to have good days and bad days, but I got a big thumbs up for swimming laps everyday as long as I can. I've also met with a physical therapist who is designing a program for me to keep active once I cant swim.
- Localized pain - This is mostly a side effect of radiation to be discussed with my radiation oncologist as there is little I can do proactively to prevent it.
- Facts About Capecitabine, my other cancer drug: This is the oral chemo med that I take every day that I have radiation. Also known as Xeloda, it, too, boosts the effectiveness of radiation and comes with its own set of side effects including Neuropathy/tingling of extremities and Hand and Foot Syndrome, dry, peeling and sensitive skin on palms and soles. So far, I have escaped both, but I am prepared with the right creams and ointments just in case.
- Radiation - After my infusion I was taken to get my first dose of radiation. As a result of the simulation CT scan a week earlier, a form had been made to position my lower body in the exact same way for my daily radiation treatments. So I hopped on the table, dropped my panties to my ankles, and lay still while two radiation therapists adjusted my body this way and that. (There is no such thing as modesty when having anal cancer. Plus, I had two babies in my 30s, and I'm 70 years old now, so who cares?)
- When my position was perfectly aligned with my three dot tattoos, the huge radiation machine started. It emits a high pitched buzz during its three passes around me on the table. And after five minutes max, it was all over. One down, 29 to go.
Week 1, days 2-5 & Week 2, days 6-10:
- With my one and only big blast chemo infusion behind me, my Monday-Friday schedule for six weeks includes twice daily chemo pills (Capecitabine) taken at home with meals, and radiation therapy at the Cancer Center. Saturday and Sunday are my free days. (YAY!) Even though the Cancer Center is right here in Walla Walla, driving to and from the Cancer Center takes longer than the radiation itself.
- Every Thursday I also meet with my radiation oncologist to discuss any new or emerging side effects. In fact, on any day that I meet with her or my medical oncologist, I always bring one of my three patient advocates. They act as my second set of ears as well as my scribe to take notes so that I have a written record of what was said. The record also allows Doug to read what's happening at my appointments and is not dependent on my memory alone.
What a regimen, but your courage and strength will see you through! g
ReplyDeleteThanks, Gene, One day at a time.
DeleteYou have always been an expert at descriptive verse when you write about happy, sad, or everyday experiences. This blog is no different. Thank you for the strength you show as you go through this experience step by step. Cancer beware! There is no wrath as strong and determined as Susan. ❤️💪
ReplyDeleteThanks Suzie. I never dreamed I'd be writing about this kind of an adventure, but here I am. I appreciate your encouragement and kind words.
DeleteSusan, thank you for sharing the details of treatment, as one of us may draw the cancer card next. 2 weeks behind you, so 1/3 done! Feel the positive energy and love from all your friends and family, carrying you along 💨 🌬 to the finish line 💜
ReplyDeleteThe quantity of factual information available to you from scientific research is good. Cancer research is fairly well funded. I have Cerebellar Ataxia, which is less well-known, lightly researched, and seemingly attractive to kooks.
ReplyDeleteNot meaning to be insensitive, but I enjoy reading your posts.
Taa ...
Hi Julie, I wondered what had happened to you, so I'm glad that you are reading my blog, and am certainly not offended that you enjoy it. That's my purpose--to inform since anal cancer is fairly rare and not well talked about nor funded, either. Take care of yourself.
DeleteSusan, you are so great at sharing your journey. It’s meaningful for all of us. I wanted to let you know that I suffer from neuropathy along with my muscle disease. I purchased the Dr. Ho. unit as seen on t v. It’s basically an Electric Stimulation device that lets me place my feet for help with neuropathy and swelling plus circulation, but I can also remove the base and add pads for place on other areas that need pain relief. I have felt that it’s helpful for me.
ReplyDeleteI didn’t sign up on the Meal Train as it looked full until December, but will check back later.
I wish you well and will keep you in my thoughts and prayers. Say “hi” to Wil for me.😊❤️😊. Kaye
Thank you for your kind words and information. I appreciate that you are thinking about me. I am humbled by the meal train and have enjoyed two meals so far. But don't you worry about it because I think it's been covered. Your thoughts and prayers are more than enough. --Susan
DeleteSusan, we are in this battle together. Our regimine is the same, 1 dose of Mitomycin C, oral capicetabine and radiation.... and we are now done with treatment, hallelujah 🙌 though it was brutal, it's now done. At 46 years old, I have so many fears about the efficacy of treatment and the potential for recurrence. I was stage 3A, now we pray.... 🙏
ReplyDeleteYes, it's a battle no one willingly signs up for, but we deal with the best we can. Beginning Week 3 today, so I fear the worst is yet to come. But I'll take it a day at a time. Positive thoughts to you in your recovery.
Delete