…and then, unbeknownst to us, an 82 day clocking starting ticking on his life.
April 12th, 2017 was diagnosis day…I knew John was visiting with a surgeon down at Penn Medicine to talk about having a small bump removed from the side of his neck. He had already been assured it was not cancer, but the doctors were nervous. I hadn’t heard from him so, just before lunch checked in to see how he was doing. He texted me back:
“I have Anaplastic Thyroid Cancer.”
WHAT?!?!?! My first thoughts floated around the following statements “John, are you kidding me – like we need this? We are both just settled into our new homes in PA. I just got married and Dave and I travel all the time. This is my time to build my business and start my new life!!” I know – this was a little selfish – ok, really selfish.
I then thought of my dear friend. I know how scary just hearing the word cancer can be, even when everyone reassures you. But really, this is just Thyroid Cancer and I knew a number of people who survived. He would have it removed, probably have some uncomfortable radiation, but he would be fine. I felt bad it would probably ruin his summer. John loved summer.
I then looked back at his text and I wondered, “what is this Anaplastic part of the diagnosis.” I looked it up on my phone, and tears filled my eyes as I read…rare…aggressive, deadly.” I felt like I had just entered the Twilight Zone…there was no way this was happening. I learned that ATC is always considered Stage 4 and that everyone dies quickly – on average about 6 months. Was he even going to make it through summer?
Emotionally I was swinging between sheer panic and “oh give me a break, he’ll be fine.” Between the reality and the hope – and it had only been about 5 minutes.
I did not share my findings with John. We started rapid fire texting about what he was learning, how I could support him…and the care of our three daughters. He asked me if it was ok if the girls stayed with me a few extra days the following week because he had to have surgery – he also let me know that even though they didn’t have a date the doctors wanted it done quickly. He let me know he would be staying at the hospital for the rest of Day 1, and was already scheduled to go back for the entire following day – drs appoints, scans and planning with his team that was already assembled. I thought to myself, “John, they don’t clear scanners, schedules and operating rooms for regular cancer.” And is it “ok” if the girls stayed with me? Ok? John…whatever you need at all…..and “yes, I agree, you should lie to the girls for now.”
What are we in for?
I was trying to pick-up on his optimism even thought the internet and his schedule were all telling me something very different.
I jumped on a train home and called my people. I texted my husband to let him know. I called MFB because that woman knows how to weather a storm – she told me I was going to start living in 15 minute intervals (more about that later). I asked Denise to enlist the help of her prayer circle. I let Susan and Dannielle know the news and they each, in their own way, through their own relationships with their ex-husbands – well, they were able to understand my pain and fear. They each knew John, our relationship, and why I was scared to death.
Looking back at diagnosis day I realize now that there were certain lines of reasoning and action that would run through each day of the 82 day battle.
- John was so optimistic about his recovery because he did not have the details. In fact, he would not look up what he actually had for weeks. And, even after learning how serious it was his optimism remained unwavering. John didn’t ask a whole lot of questions of his medical team. He blindly trusted that the doctors were making the right moves and went along like he was walking down their carefully laid out path to his inevitable full recovery. There were no second opinions…and looking back, I’m not sure he had time.
- Almost every day he would talk to me about when he was coming home. This was from his room in ICU after his first surgery even though he had a trach and a feeding tube – (“I’ll be home this weekend, the girls can stay with me”) – his room in rehab, and even up to the weekend before he told me about hospice. I would hear from him via text and through the girls of his plans to return home and would just hope and pray it was true – he never did come again after that first surgery – the girls were never able to spend another night with him at his home after that first surgery.
- John continually apologized for being a burden to Dave and I. “Hey, I have to have surgery next Tuesday, can the girls stay with you for a few extra days? I’m really sorry and will give you a break as soon as I can” were his constant messages to me. My message to him was equally clear “stop apologizing and just get better.” Over the 82 days I showed him in ways big and small that I would do absolutely anything to get us all through this. A burden? No, this was just life – and if I worked hard enough he would get better – or at least he would never die. – even though that always seemed like the reality that was racing towards us.
- Day by day I would carefully follow what John was telling me – results of tests, how he was feeling, courses of treatment, long stays in the hospital, complications, back to a rehab center…and I would research and compare his whereabouts and specifics to the stories of the few survivors who had shared online…nothing ever added up. I read the sophisticated medical journals on ATC and deciphered stats that indicated things were not going well. Even after the first surgery the trach and feeding tube so early on was highly unusual – usually people didn’t “need” those until later on.
On day 1 our lives came to a screeching halt while at the same time we jumped on a train headed for disaster that we had no control over, at all. That day, and every single day of the 82 I cried…a whole lot.