Last Thursday morning my Dad and I both were given decisions to make. Decisions with a deadline. Life altering decisions. Dad said yes; I said no.
My dad visited Woodhaven, a senior community with all levels of housing and care. He and my mom had looked at moving to assisted living in November, but the decision had been postponed by mom’s final illness and Dad’s sense that he could manage for awhile in their condo. On Thursday my brother, sister-in-law and Dad re-visted the issue and the facility, checking out the independent living apartments that fit my Dad’s current level of need. They were told there was a 1-bedroom apartment available by March 1st. That was a little sooner than Dad planned on moving, but since there are only four such apartments in the complex, it is unknown when another might be available. He had until Monday to decide.
At my Thursday appointment with the oncologist, I was once again encouraged to sign up for a trial of a medication called Everolimus. It is currently given to patients with kidney cancer that has metastasized but is being researched as an adjunctive medication for breast cancer patients with increased risk of recurrence. We weren’t even sure that I still qualified for the study. My doctor said she’d figure that out and let me know before I spent any time agonizing over the decision.
While I was writing my last blog, a report of my appointment, I received an email from Dr. Cobleigh stating that I was no longer eligible. My response was glee! I really didn’t want to do the study and I was happy not to have to decide.
Just before I went to bed, I got another email from her telling me to disregard the first email because I was, after all, still eligible. (I won’t tell you what I said when I read that.) I asked more questions about the statistics and more details about the timing. It turns out that I would be eligible until this Wednesday, so I too had a deadline for making my decision. If I were to participate in the study, I needed to be seen downtown by Wednesday to sign the consent forms and have labs drawn. About a week or two later I would begin the trial with a first examination and medications. I would need to record taking the medications, side effects, etc, and talk weekly with the coordinator as well as continue to have appointments at Rush throughout the year.
The next morning I printed the consent forms and spent awhile reading over the 21 page document, writing notes and questions in the margins. I asked for more details about the follow up visits and mapped out the year to see if the visits could fit with baby, travel and wedding plans. They most likely could.
So I spent the weekend weighing the pros and cons. There was really one big PRO and one big CON, plus a few additional points in favor of either option. The PRO, of course, would be the potential benefit of decreasing my risk factors. In numbers, it could decrease my current 42% to 20% but those were only potential numbers. They needed to be modulated by 1) the fact that the researchers only hope that the study proves this benefit, and 2) the 50% chance I would have of being given a placebo. I never took statistics, but that seemed like it moved the numbers down to something closer to 10%. (And interestingly enough, the initial risk somehow started out at 88% before treatment, which meant 12% chance of no recurrence before chemo and radiation.) Another pro would be increased surveillance over the next year. Another valid (though not high on my list at this particular juncture) pro would be contributing to breast cancer research.
The big CON, though, is side effects. I’d showed the study earlier to my primary care doctor and to the pharmacist at work. Both had commented on the “high side effect profile.” My oncologist kept reminding me that they could “manage” the side effects, by decreasing the dosage or discontinuing my participation in the trial, but I kept thinking that the side effects would have to be experienced before they could be managed. I wasn’t sure I was willing to even risk the experience. I’d gone through all that chemo without getting dreaded mouth sores, did I want to risk that now? Anemia, increased risk of infections, diarrhea, nausea, fatigue, bruising, electrolyte imbalance, hyperglycemia, hyperlipidemia, etc. And these weren’t just potential side effects, they were listed under the heading of “Likely.” (All the other side effect lists had either 1-2 or a handful of ones under the heading of “Likely” and most under “Less Likely.” Everolimus had 25 side effects listed in the “Likely” category.)
Smaller cons were the mirror image of the smaller pros. Yes, I’d have more surveillance, but it would also mean more appointments, more trips downtown. I’d just spent one year aggressively treating the cancer. Did I want to spend the next one in a similar way?
I went back and forth all weekend, but what it finally boiled down to was that THIS year is already full of some pretty special events. I’ve got a new grandbaby waiting to make his appearance in March and a ticket to New Zealand in April. I can see the light at the end of the tunnel (though I have two more surgeries to go.) I’m finally feeling good. I’d come up to the brink of making a “yes” decision (kicking and fighting all the way) and then I’d think of having to deal with any of the side effects in the next 2 months. The pros just couldn’t push me over that hurdle.
So I wrote an email to my oncologist and the trial coordinator declining to participate in the study. I told them that I’d struggled with the decision and gave them my final reasons. I was happy and relieved when my oncologist shot back “It makes perfect sense, Chris.”
I debated whether to include my faith arguments in that email. Because that was also a large part of my decision making process. In all the numbers, no one can calculate how prayer effects the outcome. People have prayed for my complete healing through the chemo and radiation treatments. Though I can’t claim to know that those prayers have been answered, I believe in the power of God and in prayer at least enough to assume that it is very possible. I am willing to believe so until proven otherwise. I do think that I could have chosen either option (trial or no trial) and still have been trusting God for the final outcome, but there was a small part of me that wanted to demonstrate faith in this way. (It was probably the same small part of me that hesitated to do the trial in the first place.)
When Dad and I were faced with out decisions on Thursday, I began praying for peace. I could tell my Dad was nervous about the decision and I knew I would struggle back and forth until I’d decided. I’m still struggling a bit with his decision, and I imagine that he will struggle a bit with mine. I also think we’re both experiencing some relief at having made our decisions.