I had some time to myself this weekend and mustered the brain power to sort through some of Dan’s things. I had already disposed of and divided out various clothing articles and a few special items that I gave to family and friends, but I felt brave and decided to open up the file cabinet. As I read through the contents, I was surprised at my sentiment. What struck me was, of course, some sadness and loneliness, but mostly, it was a sense of accomplishment. Those files contained our triumphs and failures of the last five years, right down to the hospice explanation of benefits from our insurance.
1. clinical trial consent forms
2. medical bills/prescriptions and receipts
3. transplant education class notes (including food safety, everyday living guidelines, personal hygiene guidelines)
4. major medical insurance claims
5. chemo, lumbar puncture, bone marrow biopsy and aspirate consents and precautions
6. family medical leave paperwork
7. chemo protocol consents and schedules
8. social security disability paperwork
9. specialist files (including pulmonology, cardiology, urology, neurology, ophthalmology, dermatology, and infectious disease)
There is a tiny bit of room left in the back of the file drawer for regular files, but, geez, cancer consumed our life. Metaphorically, those files are a diary of our marriage—our life together. To be honest, most of the files are still there. I didn’t have the heart to get rid of them quite yet. They were my life for almost five years. Those guidelines helped me take care of Dan, those consents saved his life, and those files helped us stay organized. I’m not ready to let go. It’s only been a few months since leaving that life behind, and already, I can hardly believe it was mine.
How did we do it?
People often ask how Dan and I stayed positive when, so many times, our life didn’t go as planned. One way we did it was to set small, achievable, goals for ourselves instead of looking at the big, scary, daunting picture. If we looked at the day instead of the week or the month, or even the year, we found that keeping our spirits up was more possible. We could have a string of successful days if we set ourselves up for success. We could also better cope with a string of scary days riding on the strength from the previous positive ones. Some nights we remarked, “wow, today really sucked” or “if we had known what today was going to be like when we woke up, we never would have gotten out of bed.” But, we celebrated any accomplishment we could find, even if it was “we made it to this bed and you’re not in the hospital.” We validated the completion of the simplest things, like getting all of the dishes cleaned up or getting caught up on bills (and, of course, logging/filing them).
When Dan was unable to work or even drive and was too sick to be much of a “contributing member to society”, as he often said, he found himself feeling helpless, yet overwhelmed at what lay ahead of him in terms of his recovery and rehab. So, each day, I left a to-do list on his medication log sheet (yes, we had one of those, too), which turned out to be a very helpful tool to support Dan’s sense of self. The tasks could be as simple as call your grandmother or drop the Georgetown bill in the mailbox. The tasks were simple, yet meaningful. At the end of the day, we had accomplished goals as a team. Dan appreciated the to-do list and knew I was lovingly nudging him to keep his chin up. When Dan felt happier about himself, I felt happier about myself, and our marriage felt happier in turn. It was a productive cycle of trial and error as we experimented with ways to cope with the daunting events that continued to disrupt our life. It was a one-day-at-a-time approach that turned in to five years worth of files in a drawer.
My file drawer, in a way, is a reflection of quite a lengthy to do list. It holds the tragic details of setbacks and the glaring reminders that our life was less-than-ideal at times. Instead of maternity leaves and mortgages it holds medical leaves and fundraiser details. That file drawer is overwhelming, but, in a way, gratifying. My 30th birthday is fast approaching, and, as I prepare to say goodbye to my 20’s, I know that what fills those files made me who I am today. Dan and I took each setback, each trauma, each catastrophe, and each success, each triumph, one day at a time. We set goals, both big and small. We met them. We congratulated ourselves on every single little victory. We stayed strong and remembered that ALL will be well.