The ACS paired me up with a single client, a 67-year old woman with recurrence of colorectal cancer. The cancer is kept in check by chemotherapy, but will not cure it. Initially, I thought driving for one person might not occupy the amount of time I’d hoped. My volunteer coordinator advised that she would let me know if anything else came up, but I’m now aware that she knew Ms M would take more time than I thought.
Working with Ms M, I learned her treatment plan for colorectal cancer and new initiatives in treating liver metastasis (which she had). Every Monday, she had chemo and oncology appointments. Other days, she often had appointments with her primary care physician, general surgeon and orthopedic surgeon as well as MRI and lab tests. She’d had a colostomy that needed constant attention as the chemo prevents it from healing. I sat in on most of her meetings with doctors, took notes when needed and asked questions to make sure the doctor elaborated on important points.
It was interesting to note the differences between Bradley’s treatments and hers. It gave me a new perspective as to what cancer treatment is usually like. Bradley’s treatments were extremely harsh and ran on a three-week cycle which formed the basis of what I call the Ewing’s Lifestyle.
Chemo week. During this week, B would have chemo in sessions lasting 4-6 hours daily for 2-5 days depending on which cycle it was. Managing the immediate side effects caused by the chemo was very tricky and required someone to be home with him all the time.
This is a dangerous week, in which the following counts can drop to zero. The impact of chemo on blood components:
WBC White blood cell count. When this is low, he is susceptible to infection. Our orders were to take him directly to the hospital if his fever hit 100.2 and plan on staying a few days.
RBC Red blood cell count. Red blood cells deliver oxygen to the rest of the body. When these were low, he was extremely tired due to the lack of oxygen being delivered to his organs and limbs.
Platelets Responsible for clotting. When platelets were low, he had to be very careful of injuries that cause bleeding, including internal bleeding. He’s not supposed to even floss his teeth then.
Mucositis can also become a problem. It’s sometimes referred to simply as “mouth sores”, but the inflammation and lesions encompass the entire digestive tract all the way from the mouth to the anus. It’s very painful and accompanied by high fevers as well as increased risk of infection.
The Happy Week. With any luck, counts have rebounded and side effects diminished. This was a good week to travel, eat out and have people over, although we’d been warned to keep him away from old people and babies as they’re prime carriers of bacteria.
Ms M’s chemo didn’t have the same drastic effects on her. She did have chemo every week, which made extended travel impossible, but otherwise, she would only feel tired and sometimes nauseous for a day or two and wasn’t restricted due to issues with blood counts. On the other hand, her surgery was more debilitating in the long term than Bradley’s and she had problems managing on-going issues with her colostomy.
It was frustrating to watch as she experienced delays due to miscommunications between her surgeon, oncologist and herself. Through the course of Bradley’s treatment at the University of Maryland Medical Center, his care was managed by an interdisciplinary team and overseen by a tumor board. We quickly grew accustomed to a routine in which we would get phone calls telling us what to do, who to see and when to do it, and sometimes appointments were even grouped for us to limit the number of days we had to go to the hospital. Ms M was treated through a local cancer center that doesn’t normally coordinate patient care or sharing of medical records unless there was “a situation” and she was too confused or sick to manage it herself. It was left to her to schedule all her own appointments, make sure everything was done in the right order and keep her several doctors informed of the latest developments.
One necessary procedure was delayed by 3-4 weeks due in part to insurance red tape, but mainly because Ms M was not feeling well and didn’t realize that the doctors were waiting for her to make phone calls, whereas she had expected them to call her after test results were all in. She has no self-sufficient local family and the terms of her federal aid do not allow for family members to move in as caregivers, even temporarily. She had to quit working after her surgery because she was unable to maintain a regular work schedule and was unhappy about her inability to work.
My role as driver included limited direct patient advocacy. I was mainly expected to keep my ears open and update the volunteer coordinator. She would then follow up with Ms M to offer additional ACS services as needed.
As my sabbatical ended, I’m sorry to say that things weren’t looking so good for Ms M. She’s scheduled to have a new procedure at the Univ of MD Medical Center in which chemo will be delivered via a tube threaded directly to the tumors in her liver. The expectation is that this will eliminate those tumors. Then, she would be able to stop receiving the weekly chemo which would allow her surgical wounds to heal. On the surface it all sounds good; however, at her last oncology visit, it was decided to forego chemo for two weeks because of new side effects indicating that her body isn’t tolerating the chemo so well anymore. Every time chemo is skipped, there’s an opportunity for the cancer to spread. So, the question is whether she’ll be sufficiently healthy to have the procedure. I may never know the answer to that question. Or, I may follow up with her and visit her in the hospital! I’ll cross that bridge when we come to it. It was an honor to serve her while I could.
Thanks for reading my blog!