For all of you who’ve followed our journey through 2017, I wanted to provide an update and let you know what’s happening now in our lives. We’ve felt so incredibly supported and uplifted by so many people, and in return we want to share our happiness and gratitude – but also our challenges, with transparency.
First, and most important, Dempsey is healthy and getting stronger all the time. During our October visit back to Cancer Treatment Center in Phoenix, his medical team unanimously agreed his prognosis is excellent. At five months post-treatment, there is no sign of cancer. We’ll be returning every two months for a thorough scope of his throat, and then he’ll have a PET scan in May, at the one-year mark. Most recurrences, if they occur, happen within the first year. After that, they will watch him closely through the three-year mark.
In August, after I wrote my last post, Dempsey woke in the middle of the night with acute chest pain. We were staying in a friend’s guesthouse in a little town in New Mexico. Although the local hospital was small, the team there managed to keep him alive and stabilize him, even as his heart rate fell to nineteen beats a minute and he had a seizure. Once stabilized, he was transported by life-flight to El Paso. The cardiologist there said he’d had a mild heart attack and he believed a bigger one was on the way, so they inserted three stents.
We returned to Austin in September, and I think I slept most of the next five weeks. I did not realize how utterly exhausted I had been until the stress of constantly caring for Dempsey was behind me.
Except for two week-long visits to see our family, we had been living out-of-state for nine months, and coming home felt strange. Because of the way the lease on our apartment was structured, it was too costly to cancel, so we were paying rent and utilities in Austin, as well as a car payment and insurance on a second car sitting in the parking lot outside our front door.
The one thing I haven’t written about previously is the cost of fighting a long illness. Finances fade into the background when lives are at stake, but most of the families we have met on this journey have felt the financial drain. It doesn’t take long to burn through money set aside for life’s other necessities.
We have been extremely fortunate in that Cancer Treatment Centers of America accepted our insurance in-network. They also provided air travel and when we drove, reimbursed us for car travel. They provided discounted housing and excellent, affordable meals during treatment.
Unfortunately, Dempsey’s response to the arduous treatment regimen involved a number of trips by ambulance and four other hospitalizations, as well as treatment by many medical professionals who were not in our insurance network. Part of what faced us when we got home was a huge stack of medical bills (I just opened one for $57,000), and we know there are more to come.
Dempsey is now going to Cardiac Rehab three times weekly, and that will continue through January. In addition, he is working in physical therapy to strengthen his right side, which was weakened when the surgeon removed a large tumor that had invaded the muscle in his neck. The physical therapy is costly, but important. The radiation necessitated extensive dental work, which will continue over the next several years.
On the plus side, Dempsey’s wonderful co-workers donated hundreds of hours of comp time to him, which allowed him to continue to draw a paycheck through September. We also had some support from family, which has made all the difference.
I have done some writing and a little work with clients this year, but as you can imagine, not much. I am looking forward to getting back to my own work, to being productive and making money.
As I write this, I’m sitting surrounded by boxes. Some of them are labeled and set aside in the pile headed to the storage room we’ve rented. Others are filled with items to be given to Goodwill. The sunroom is stacked with furniture claimed by grandchildren who’ve recently set up housekeeping on their own.
The pieces we cherish: the mahogany china cabinet, my grandmother’s dressing table, the grandfather clock, our comfy armchairs and our paintings will be stored, along with a wall of bookshelves we had built twenty years ago. As we do with every move, we’ve pared down our books and Dempsey’s vinyl, but when we settle again someplace new, our books, music and art will as always line the walls and make it home.
The lease on our lovely Austin apartment was renewable at the end of November. This is a strong rental market, and our rent was set to increase. Dempsey doesn’t have the option of returning to his job at the State Hospital now, as a matter of liability. So opting out of the lease was an easy decision. He also applied for and has received disability. We do not yet know when or if he will be cleared to return to work.
We’re not quite sure what we’ll do next. First up, we’re house sitting for a friend while Dempsey finishes his rehab. Later, we may do some RV traveling. We may head back to New Mexico, or south of the border for a while. Happily, my work is portable. We do eventually want to buy another house, perhaps in a small town outside of Austin.
Our kids have set up a crowd-funding site for us, to help with Dempsey’s medical bills and attendant expenses. We’re also posting updates there. Small contributions add up, and sharing the page is key to getting the word out, everybody says. Thanks for taking a look: