How can I put this in a spreadsheet? or My attempt (and failure) of quelling the uncertainty of cancer through lists, outlines, charts and grafts
Guest blogger: Sharon Rivers (Girlfriend)
This is how I remember the blur of events that was Dave’s diagnosis of Stage III testicular cancer and his subsequent five-day hospitalization:
(Disclaimer: In the following timeline, some individual’s names have been excluded and replaced with vague, possibly incorrect job titles; statements attributed to individuals are not necessarily what was said by that person but how my brain “heard” them (although I’m pretty certain about the Surgeon’s quote); the chronology of the statements is accurate but the time periods between events varies.)
Dave [via phone message]: I’m having chest pains. I’m on my way to the Emergency Room.
Female Doctor in the ER: We see masses in his lungs and have deduced it may be testicular cancer. We are admitting him to the hospital for more tests. In the meantime, you and his parents can step outside while I do a quick testicular exam.
Hot Female Doctor #1 and Hot Female Doctor #2: We heard of the possible diagnosis. We will need to do a testicular exam on Dave. You and his parents are welcome to remain in the room and watch awkwardly.
Hot Female Doctor #3: We are sure that this is Stage 3 Testicular Cancer that has metastasized to the abdomen and lungs. Dave will have surgery in two hours and will start chemotherapy tomorrow morning. [There may have been a testicular exam at this point; the shock of the news had me not paying particular attention.]
Oncologist: Have you thought about going to a sperm bank? Sperm bank, sperm bank, sperm bank. [Awkward glances between Dave, myself, and the doctor.]
Surgeon [entering the surgery waiting room after successfully removing Dave’s left testicle]: That was one abnormal testicle.
Various health professionals over the next five days: Chemotherapy…Hair loss… Fatigue…Prognosis…Tumor markers…Masses…Nausea…PICC line…Possible Post-chemo surgery…Biopsy…Medications…Out-patient…Recovery time…Bills…Insurance.
My inner dialogue: How can I put this all in a spreadsheet?
My brain works in bullet-point lists. It’s default attempt at processing this chaotic world is to find keywords and tag lines; to sort and re-sort it’s findings; to type up the data, spellcheck, re-draft, proofread, filter, deduce, and then finally arrive at definitive conclusions and plans of actions. When time becomes too rushed, or emotions become too high, or too many other people are involved, all with varying opinions and feelings, it feels like I have a system overload. And then this happens:
Dave’s stay in the hospital turned into the perfect petri dish to illustrate my grasping for control of the uncontrollable and my submission to the inevitable emotions that always follow this impossible task.
When everything first started unraveling, it seemed like I might be able to maintain order. I kicked into what I call “manic auto-pilot”. With the first doctor walking into the ER cubicle, I reached into my purse, retrieved my notebook and pen that I keep for just such occasions and began my note-taking. I had no shame in interrupting any health professional’s flow of medical-speak. I’d ask them to restate their name, to spell it for me, to clarify their job title, to repeat difficult to understand concepts, or to explain their plan of action in more detail. After each doctor or nurse left, I would find some way to re-transcribe my scrawled short-hand into typed, legible journal entries, usually in the form of emails to family members. During “down time” between doctors, I’d race to our apartment or to drug stores or grocery stores. When I’d find myself in one place for longer than a five minute period, I’d fill the time with texts, emails, or phone calls to Dave and my network of friends and family. While nurses detailed chemo treatments and at-home medication schedules, spreadsheets would start to form in my head. I felt that I could create a blueprint of Dave’s illness and his path back to health. Cancer was to bow down to my arsenal of organizational tools.
And then it seemed the tides turned. I began to realize the impossibility of being available for all of the medical information that was coming my way — not to mention the wave of emotions that would hit when I’d stop to let that information sink in. I’m amazed now to think that, during Dave’s first day in the hospital, I actually thought I could pull off being present for all doctor/nurse/financial counselor/social worker visits. Realizing the impossibility of this task, I started to focus on the Oncologist’s visits. I just needed to make sure that I’d be present for her all-important rounds each morning. But the attempt of tracking down this one doctor — trying to accurately time her visits and still keep regular work hours, combined with having little sleep and an emotional cloud that sat just over my shoulder but that I was determined to not acknowledge — all of this seems to have built up and exploded into the me that has been present this last week. A crying, tired me.
I have certainty that Dave is going to beat this. But I’m afraid of the next three months. I’m afraid that whatever I’m afraid of is going to last longer than three months. I feel like maybe I’d even calm down a bit if someone or something could assure me a definite amount of time that we’d be going through this. If someone/something could just say “On November so-and-such, Dave’s life will resume it’s regular activities, as it was on September 1st, minus the sleeping cancer” then I’d grow some balls for the both of us, buckle down and stomp through the next couple of months. But there is so much uncertainty. I’ve heard scary things about chemotherapy and what it does to people. I’m not scared that I won’t make it through this with Dave. I have certainty that I will go through this with him until he is 100% cancer free. But I am afraid that I won’t do it right. I can’t think of a spreadsheet that can outline, or filter, or sort, or auto-correct, or create the just-right formula to be the perfect companion through this scary time for Dave.