Learning New Words

When I look back at the last two months, I can’t quite wrap my head around the journey we began on January 26. Sami and I had just returned home from a great trip to New Mexico (which for me, also included a brief time at the American Sheep Industry conference in Texas). While we’d had a few hints that something wasn’t quite right with Sami, we were both ready to dive back into work. By the last Saturday of January, our world was upside down. Sami had had a craniotomy to remove what was at that point an unidentified mass on her brain. She was in the neuro intensive care unit at Sutter Roseville Medical Center. I didn’t work for most of February; after bringing Sami home from the first surgery, we went back for a second craniotomy in mid February.

The first new word I earned was anaplastic astrocytoma. The surgeon who performed the first craniotomy taught me this word when he gave us Sami’s preliminary pathology report on the day she was discharged from her first hospital stay.

Sami’s second surgery was a huge blow to us both. We assumed - and the doctors made it sound like - that Sami’s tumor had regrown significantly in the two weeks following her first surgery. I will forever remember the body language of the second neurosurgeon when we told him Sami’s first surgery was just two weeks prior. Dr. Shahi also taught me the second new word on this journey: glioblastoma - the fastest growing and most aggressive of primary brain tumors (another new term for me - primary brain tumors are isolated to the brain).

Sami’s second diagnosis - and the assumption that her tumor had already regrown - put us both in a very dark place. For some reason, the first surgeon had not ordered a postoperative MRI (another new term), so Sami’s radiation oncologist (again, new term) couldn’t begin treatment until an MRI had been done. I felt like we were trapped in a cycle of trying - and failing - to get ahead of Sami’s tumor far enough that treatment could begin. And of course both of us googled “glioblastoma” and learned that nobody gets ahead of this kind of tumor forever.

Sami’s second hospital stay felt like we’d descended into the hospital-insurance industry matrix. Doctors and case workers seemed to be making assumptions about what was best for our family based on their ability to maximize revenue from our insurance company. And so we began to use terms like social worker, rehabilitation, neuro critical care doctor, home health services, skilled nursing facility, hospital quality assurance office, patient advocate.

As I was struggling to understand all of these new terms, however, Sami began the process of recovering from a second resection (new term) of her left frontal lobe. Immediately following the second surgery, Sami was very weak on her entire right side. Through work with physical and occupational therapists (which I now know are two different specialties), but mostly through her own determination, she recovered most of her coordination and was strong enough to come home on February 20. Through work with several speech therapists (new term) at home, her cognitive function began to recover as quickly as her physical ability.

The process of beginning the first round of treatment has taught me even more new words. I now know the difference (at least on a basic level) between a radiation oncologist and a medical oncologist. I have learned that I retain the names of drugs about as well as I retain the scientific names of plants (which is to say not very well). The pocket notebook I keep to track what the doctors and therapists tell us is filled with humorously misspelled medical terms! I’ve learned about the possibility of clinical trials (and much of the terminology that goes with them). I’ve begun to learn that clinical trials give brain tumor patients and their families some hope for a positive outcome AND a sense that our participation will ultimately help doctors improve survival rates and quality of life for future glioblastoma patients.

During our trip to UCSF to meet with a neuro oncologist (another new term), we learned that without an initial postoperative MRI, nobody could really know whether Sami’s tumor had regrown or if the first surgeon had failed to remove as much of the tumor as he’d hoped. This new doctor said the pathology report indicated a proliferation rate (new term) of 20 percent - in other words, the tumor was reasonably slow growing. We also learned that our doctor here in Auburn had ordered several genetic tests of the tumor tissue (a NextGen test and an MGMT test - again, new terms) to help better target treatments. We all came home from San Francisco reassured.

Today - just over a month since Sami came home from the hospital - we’re busy learning insurance terminology. New words like “medically necessary,” “maximum out-of-pocket payments,” “peer-to-peer review of ordered procedures,” appear alongside terms I know, like “past due,” “balance owed,” and “payment received.” I am beginning to realize how fortunate we are to have excellent insurance through my job.

As an aside, when I’ve taught farm and ranch business planning courses, I’ve always pushed our students to think about health care and retirement planning. But for me - and I suspect for the younger farmers and ranchers in our classes - the need for catastrophic healthcare and retirement benefits has always been theoretical and well over the horizon. Even through this past January, as I approached my 56th birthday, I couldn’t foresee needing anything beyond my annual physical for the next several decades. And while Sami was contemplating her retirement in the next 5-8 years, I figured I’d be able to work for another 12-15 years. I still might, but seeing a health insurance summary this week showing that Sami’s total cost of care since January 26 has exceeded a half million dollars was staggering. I suspect my future presentations to farmers and ranchers about these topics will take on a new intensity.

Finally, I continue to learn what the term “caregiver” means. We are so happy that Sami is home and that she continues to recover physically and cognitively. Having both of our daughters share in this new role has been so incredibly helpful for both Sami and me.

To some degree, being a caregiver is like being a parent. The girls and I were very concerned early on that Sami might fall, or drop something, or forget something, and injure herself. We were concerned that we might miss a household or veterinary business bill. We have learned, largely through trial and error, that we need to let Sami do things - that we can’t hover over her all the time. Sami needs to be in control of some things - and we need to step back when we can.

Being a caregiver is also like being a business owner and an advocate. Keeping track of bills, payments, tests, prescriptions, and appointments is essentially a full-time job (one that I’ve thankfully been able to share with our daughters). One of Sami’s friends has reminded me to be “politely persistent” when it comes to dealing with doctors and the insurance company. I’m getting good at the persistence part - my frustration, I’m afraid, makes me less than polite at times. But I’m working on this, too.

The nature of trying to live through something like this with a one-day-at-a-time is that some days will be good, others will be difficult. This week has been difficult for me - not because of what anyone else has done, but because I’m exhausted physically and emotionally. But I have the most wonderful friends - friends who have stepped in and invited me to lunch, or offered to take care of the sheep for a couple of days. Friends and family from across town and across the country who’ve sent food and flowers and positive thoughts. Friends who I only know through social media who have reached out and offered support. Friends and family who’ve simply checked in. And so in this period of learning so many new words, it’s the familiar terms like the names of friends and family, like “how are you doing,” like “what do you need” that have carried us through.