Sometimes, to be a good caregiver, we have to put our own needs and opinions aside, so as to support our loved one in making their own choice about their own life. Take the example of my mom deciding to participate in a clinical trial: Three years into her battle with breast cancer, the cancer metastasized to her bones. Initially my mom tried chemotherapy, but it significantly compromised her quality of life; so she decided instead to go with alternative medicine.
I was all for that decision.
My mom subsequently outlived her predicted "death date" by one and a half years. In addition, she was doing quite well and feeling relatively pain-free. In my opinion, if it ain't broke, don't fix it. When a new chemotherapy option was offered as part of a clinical trial, however, my mom jumped at the chance to participate. Somehow, she felt convinced that this chemotherapy option was her one chance, her final shot, of maybe making it out of cancer alive. If she did not survive the trial, she reasoned, perhaps someone else a decade later would survive, in part because of her participation in the trial.
While I disagreed with my mom's decision, it was hers to make. Everyone in the family had voiced their respective opinions, and at the end of the day, it was my mom's life. So as my mom's caregiver, I ultimately supported the participation in the trial, albeit reluctantly. The thing is, we knew very little about the trial and even less about how to assess what we did know about it; so we were poorly informed about it and unprepared for the impact it would have on our lives.
On the day that my mom was to be evaluated for participation in the trial, I drove us three hours into the city, to the clinical trial facility. Unsure of what questions to ask, and feeling overwhelmed, I simply watched as a nurse practitioner, research oncologist and trial facilitator flipped through years of medical records and asked my mom questions. After a final examination, the team decided that my mom could participate in the trial, and they advised us of the protocols:
1. My mom would have an exam once every three weeks, at the clinical trial facility.
2. One hour before each exam, my mom would have blood drawn in the laboratory near that facility.
3. Every six weeks, my mom would have a nuclear bone scan and CAT scan -- one requiring a radioactive tracer injection and the other requiring fasting and drinking an orange-colored contrast liquid.
4. My mom would take the trial medication daily, along with another medication that had been FDA-approved. Aside from these two medications, my mom would not be able to take anything else -- over-the-counter, herbal or prescribed -- without the prior consent of the medical team.
Looking back, I can see the warning signs of how demanding this trial would be on my mom, not to mention on myself; but at the time, the protocol seemed simple enough. What I did not take into consideration, or have the foresight to ask, was the following:
1. What days and times were appointments available, and how long would each appointment take?
2. Would my mom be able to handle the six-hour, round-trip commutes in the car, considering that she had cancer in her spine?
3. Who would pay for the tests every six weeks, and where would they be located?
As it turned out, exam appointments were only on Tuesdays, in the middle of the work week -- leaving me, and me alone, to drive my mom. While these appointments theoretically took just half an hour each, it was only if the lab had the blood work done in time for the scheduled appointment and if the trial clinic team was on time. In reality, the appointments took up to several hours. In addition, if we scheduled late-morning appointments, we could leave the city in time to avoid rush-hour traffic on the way home, but it meant driving out to the city shortly after dawn. If the appointments ran behind, we had to stay in the city until the evening and arrive home late at night, to avoid sitting in traffic.
These trips created a pressure-cooker environment for my mom and me, adding stress to an already-strained relationship with its underlying power struggle: She was the mother, and I was the daughter; but for the sake of her wellbeing, the roles were often reversed. In this case, I was responsible for making sure my mom woke up, did her morning rituals, ate breakfast, and got in the car in time to make it to the clinical trial appointments. My mom's short-term memory was nil, and she often acted like a child -- wanting to stop at a café for tea or get a grilled cheese sandwich along the way, when doing so would compromise our ability to get to our destination on schedule.
That said, my mom always held her head high and never complained about the commute. For me, however, every third Tuesday was torture. For starters, nobody wants to spend six hours on the road, except maybe a truck driver. In addition, I was essentially taxiing a porcelain doll, which left me riddled with anxiety about a potential fender-bender in the city. I was, after all, from a small town with two lanes of traffic total, not five in each direction. Then there were all the what-ifs: What if we arrived late to the appointment and could not get in? What if the test results did not make it to the clinical trial office in time for the appointment - making our drive for naught? What if test results found something I did not want to know, like evidence that the disease was spreading?
Fortunately, our insurance covered the cost of the bone and CAT scans, and my mom was able to get them done locally. Each test, however, was at a different facility. In addition, for whatever reason, my mom always wanted to do both tests on the same day -- which meant fasting all evening, waking up, drinking orange contrast liquid for the CAT scan, driving to hospital and receiving the radioactive tracer, driving to the imaging center and getting the CAT scan, then driving back to hospital for the bone scan. When all was said and done, it was time to eat, but by then, my mom was exhausted and wanted nothing to do with food.
After almost a year on the new chemotherapy, the clinical trial team decided it was not working for my mom in the way they had anticipated. The team advised my mom to stop the chemo immediately, then reconvene with the research oncologist in two months, to discuss other treatment options. Sadly, my mom passed away before the consult date. Still, she never regretted participating in the trial, knowing that others like her could benefit in the future.
By supporting other caregivers through the process of looking after their loved ones, I strive to continue in my mom's footsteps -- honoring and continuing her quest to help out. For this reason, I created The Medical Day Planner - hoping to ease the journey of those in the caregiving role today. Also for this reason, I have been busy interviewing pharmaceutical corporations, university research facilities, clinical trial associations and caregiving organizations, so as to guide caregivers on how to optimize the clinical trial experience for all parties involved. Stay tuned for upcoming articles on this topic -- including how to find clinical trials for various illnesses, what questions to ask clinical trial facilitators, how to do a cost-benefit analysis of a given trial, how to organize information related to a trial and how to support a loved one through the process of a trial.
Meanwhile, Mom, wherever you are, I hope that you are proud of me.