Grieving

You might think that as the husband of someone who spent four years living with a brain tumor, I would somehow be ready for her death. Of course, I’m not shocked like someone who meets the policeman at the door and learns that his spouse has wrapped the CBR around a tree, but I am still sort of… well… shocked.

It’s been a more than week, and at this point it’s still weird. I don’t look at her things and break down into tears. Most of her stuff I still just ignore like when she was here. Her pajamas still hang on the hooks in the bathroom. Her hair products are in the shower. I have no urge to remove these things, but when I pause to think about them, I remember her, and I am sad. I don’t know why it seems odd to me that I am so affected. Of course I am affected, my wife of 30 years, the person who I spent over 60% of my life with is gone, but somehow thought I was ready. I thought it was time.

The next lots of paragraphs try to explain what happened and why I thought I was ready for this, and when I realized I wasn’t. If you don’t care, or if you were following the blog describing our journey as it happened the last few years, you might skip past all this and go to the last couple of paragraphs.

She was initially diagnosed over four years ago. When you hear the words “malignant brain tumor,” the hairs prick up on the back of your neck. When you research it you realize just how grim a diagnosis it is. We started that research late on a cold rainy night on Easter in 2016, in a CVS parking lot off Union Deposit Road outside Hershey, PA. I had gone in to collect the dexamethasone she was prescribed to control symptoms pending surgery, and furtively read the wiki on my phone, not wanting her to know what it said. Of course, while she waited in the car, she did the same. When I got back in the car, it rained inside too.

Over time, we learned that the published statistics don’t predict to the otherwise young and healthy. We both started to believe that the tumor might be gone after first one year, then two years, and finally three years came without symptoms. I was worried though, because despite the lack of evidence of a tumor on the imaging, she was slowly declining in subtle ways. A distant cousin, had told me about his wife who survived a cancerous brain tumor but was now wheelchair bound following more than a decade of progressive decline after treatment.

We had begun what seemed that it would be a long-term effort to chase down the myriad complications that result from irradiation of the brain. Her energy levels had declined slowly, and she started taking thyroid hormones. Following bouts of nausea and strange unexplained smells, she had gone on anti-seizure medications. Over a period of several months, her energy levels continued to drop, and we raised her thyroid hormone dosage. She also became muddled enough that we agreed she should no longer drive. After hunting around for causes, we eventually took her off the seizure medications and she enjoyed a brief period of renewed energy and clarity. She completed some physical therapy, and her motor control improved.

We were sort of settling into a new life. It wasn’t a life of unrestrained joy, frankly. She wanted everything to be normal, and medicines and physical therapy reminded her that they were not. She wanted to be able to drive, and work, and not forget things and she couldn’t. She wanted things to get better, not worse. It frustrated her, and I was often side-swiped by her anger. Likewise, I was not always cheerful about the prospect of being the supportive spouse of someone slowly deteriorating. For a brief period, I felt trapped and was suicidal.

In the big sense it felt like we were no longer staring death in the face. Rather we were now on a quasi-stable path of continuously trouble-shooting changes that resulted from the progressive long-term effects of radiation, and seeking interventions to compensate as best we could. Nevertheless, she could garden and do crafts, and we could all cook together, and watch movies together, and drink together, and even travel together. It wasn’t awesome, but there was plenty of happiness to be had.

When we traveled to Hershey for her routine bi-monthly check in November of 2019, we were focused nailing down some sort of assessment of her endocrine system. The original tumor was near enough to her hypothalamus and pituitary glands that radiation had damaged them. These glands are the controllers for all the major hormones in the body, and hormonal imbalances can cause a whole host of symptoms including fatigue, confusion, and memory issues. She had a morning appointment with the radiologist who indicated that the radiation could have damaged those areas. She then had an MRI, and following lunch we met with the oncologist.

Her principal oncologist wasn’t there. This had never happened before, and we surmised the meeting with his nurse and physician’s assistant to be a sort of fill-in meeting. All the circumstances for the year prior, as well as those of the day itself, had us in a mindset that this visit was perfunctory. We had been talking about making them less frequent, and when the doctor no-showed, we assumed he was just too busy to be bothered with someone who wasn’t really a cancer patient anymore.

We were accustomed to the pattern of these visits. They took from one to two hours, much of which involved discussion of recent activity, problems, and a neurological evaluation. We went through those topics without much enthusiasm, and then got to the final event, the review of the scans. This had typically been fairly perfunctory, a quick survey and a statement that everything looked normal. This time, it was the same, except there was a small region that was now enhancing… more tumor.

The physician’s assistant kept talking and talking. We were mostly not listening. I tried to remain engaged and find out what the next steps were, but we were totally unprepared. A couple of days later, we went back for an meeting with her original surgeon, who told us surgery wasn’t recommended. We felt adrift and without a plan but a couple of days later the oncologist intervened and she was set up for surgery.

Surgery took place right before Christmas break, and while she took an extra day to recover in the hospital, she got out in time to see Haley graduate from Penn State. She recovered at home over Christmas break, and early in the new year she started treatment guided by a clinical trial that identified the drug most effective against her tumor ex situ. Her next bi-monthly appointment was scheduled for mid-March. It wasn’t back to where we were, but somehow getting back on a bi-monthly oncology schedule meant normal to us.

We went to Belize in early March. She was visibly declining. Her walking was more of a struggle, and she slept a lot. Forty months of living with the threat of cancer and watching slow decline had sort of desensitized us. We had stopped regarding every change as a sign of tumor. She was back on heavy chemo. She had just had brain surgery. There were long-term effects of anesthesia. These things didn’t have to be cancer. It’s not like we were in denial, but we probably kept an open mind when we should have been more realistic.

The follow-up visit after Belize showed even more tumor, despite the chemotherapy. She had another surgery to implant (she prefers that to install) a catheter in her brain, and started direct infusions of chemotherapy drugs into the cerebro-spinal fluid surrounding her brain. After three weekly infusions, she was still declining.

The rest becomes a blur. There was the day she fell, and we got her a walker. We ordered a chair lift so she didn’t have to go up and down the stairs on her butt. By the time it was installed a week later she needed a wheelchair. We went to the emergency room to look for infection or bleeding, but found none. From there she progressed to being bed ridden, to paralyzed, to not waking up until she died on May 2. The whole thing took maybe a month.

In a way, it was incredibly fast. In another way, that was the longest month of my life. There were a few weeks where her every trip back and forth to the bathroom was an event requiring four lifts, and there were often three bathroom trips a night. That was followed almost two weeks of her lying in bed, completely paralyzed, and medicated with haldol and morphine. We shifted our efforts into caring of her body as her brain slowly shut everything down. We rotated her every several hours for a few days and successfully avoided the formation of bedsores. We also tried to keep her favorite playlists on a steady rotation.

Then, early on the morning of Saturday, May 2, her breathing, which had been irregular, became very raspy. I gave her morphine and it calmed. I went back to sleep. When I woke up, around 0430 I didn’t think she was breathing. I went back to sleep, and at 0530 woke again, and decided she wasn’t breathing. I took a shower and went downstairs and made coffee. I figured everything was about to get crazy and I wanted to be prepared.

She had been lying on her side when she died, and I re-positioned her to her back put some of her favorite stuffed animals around her, so she looked kind of peaceful. I think I kissed her, but I’m not sure. I’m not religious or even spiritual, and I knew her dead body wasn’t her. I woke the kids and told them mom had died, and they came down and saw her and said goodbye. I called her folks and my mom who came over and said their goodbyes.

Once things had settled, I called hospice. I left a message with the answering service as it was outside of normal hours. After I hadn’t heard anything for more than an hour, I called back. About fifteen minutes later I got a call from the head nurse who said she was out in Ebensburg, and was trying to raise a local nurse. Another half hour and I got a call from the local nurse, and some time around 0930 she came over. She checked her, declared her dead, and after checking with us, called the mortuary. The mortuary took another hour or so but eventually came over.

It was something about seeing her come out of the bed and go into the body bag that jarred me. Though I had been looking at her death as a relief (both for her and for the rest of us) for weeks, and had started to become irritated with the pace at which people were moving to get a dead body out of the house that morning, I was suddenly overwhelmed by a feeling of loss.

Once they zipped that body bag shut, I would never see her again. She was really gone. The difference between her being virtually gone, because she couldn’t interact, and physically gone was real, and it wasn’t a relief. I followed the stretcher out to the van and almost asked them to open the bag again so I could see her one more time, but I didn’t. I thought about going down to the morgue to see her, but I didn’t. It took until Friday for her ashes to come back. I put them reverently in her favorite room, in a spot that will get plenty of sun, because she likes sunshine.

Other than a few things I moved and now regret, most of her belongings still sit where she put them. I am still annoyed by the clutter of tchochkes on nearly every surface, but now my annoyance is tempered by my desire to hang onto these very tangible reminders of her presence. Not, I have realized, the individual objects, but the very clutter of her arrangements, which once disturbed can never be restored.

I have read some about grieving, and what I have read about it says that we all do it in our own way at our own time, and that you should do whatever feels right. I would like to say fuck people who give that advice. They may be right, but I don’t give a shit. That is not good enough. I want someone to affirm my decisions for how to grieve without knowing what I want. I want someone to tell me to buy a $4,000 laptop and a Porsche and take a month off to drive to Yellowstone and solo hike over the Tetons, because tetons means boobs and that’s fucking funny. Don’t try and tell me to go do that shit now, it’s too late. I already decided those were bad ideas, and crushed my own dreams and they cannot be resurrected any more than my wife can.

If you got here because you are grieving and you’re looking for a recipe for how to do it, I’ll give you one. First, go ahead and drink for a couple of days. Tell everyone that you love them in the way that only alcohol will let you. After that, sober up and do something small and constructive and also something kind of fun. Maybe pay your bills and go on a day trip. Or do some laundry and then go get some ice cream. Repeat that a few times. Start exercising. Do something creative or something that helps you grow as a person: learn something, write a song, work in your garden. After you drink too much again when you didn’t mean to or spend a day lying in bed and feeling sorry for yourself, forgive yourself, and go back to it: do something productive, something fun, something healthy, and something to grow. That’s the right answer. Just fucking do it. I’m trying.