It’s been an eventful past few days. Here’s the latest.
Visiting my Grandma for the last time
I was feeling great early last week and was doing a lot of visits with folks, went into the office and saw my colleagues (felt normal for a few hours) and was able to catch up with others. I really thought I was over the hump. Starting Tuesday afternoon though I was back in bed feeling weak and tired. Wednesday, more of the same. By Thursday I was sure I was coming down with something. I had gotten news that my grandmother was slipping and that it was now a matter of days or weeks. I booked a last minute ticket to the east coast. But a few hours before the flight I really wasn’t feeling strong and thought it unwise to fly (to be clear it was not wise regardless but I decided the tradeoff worth it). So I delayed it a day in hopes that a good night sleep would help. I definitely came down with whatever everyone has now but I think my body is fighting it well enough (no fever).
On the way to seeing her I jotted down the memories, talking point bullets in my notebook: the warm feeling from sitting on the carpet as a kid, the smell of spaghetti and meatballs permeating the air on a random weeknight; coming over for breakfast across the driveway for Kasha; etc. I wanted to sit with her and share those memories, I knew by this point she wasn’t likely to be lucid but still, maybe she could hear/recognize my voice. And I could remember. I must say that I didn’t have that flood of memory that sometimes happens. I really had to dig to get those neurons firing – it had been a long time since they were active. I find that as time passes my ability to remember childhood events becomes harder.
On the way to Rhode Island from the Boston Airport I stopped to buy nice shoes. It was kind of a weird idea but I realized that showing up with sneakers to see her (perhaps the last time) was simply unacceptable, disrespectful even. What kind of an example had she set when her oldest grandson visits in sneakers? She was that kind of lady – elegant, dignified and poised. And she was always ready for action – feisty, decisive. As a younger lady (maybe late 60’s/70’s) she would give the RI mayor’s office a piece of her mind (in impeccable handwriting) about all the litter on the street. And when after the third attempt they didn’t clean up that grungy intersection on Allens avenue, she literally parked her car, got out, picked up the litter and put it in a trash bag herself. That’s how she operated. One day, years after my grandfather had died, she just decided to sell the house she lived in for something like 50 years because, “why do I need all this?”. Once she decided a thing then it was done. “Ari, when you make a promise it’s a strike of lightning” she told me as a kid, and that always stuck. She would also tell me things when I was a bit older, like, “you cannot squire a lady like Michelle dressed like a THAT“. Yeah, sneakers wasn’t going to cut it.
I arrived in her tiny Rhode Island apartment nestled in an assisted living home. She was always one of the most energetic and awake people there, light in a drab place. Several family members were there as I arrived: aunt, nephew, etc. They told me she was in her room and that I could go in and see her. As I walked into her sunny room overlooking the Seekonk river I was struck by the transformation, the delta against my last memory of her. Her skull is tiny and motionless in the large bed.
I closed the door gently behind me. I wanted to be alone with her for a few minutes unencumbered by social norms, expectations, or frankly, even words. Just to be with her and provide some comfort (if possible) to a dying woman who to me personifies quiet dignity. She is also the person who has been the most stable fixture in my life. But she is no longer the woman I’ve known.
I walk to the bed and orient myself to this reality. Here lies death. Wisps of white hair are still on her head. Her face is tilted 45 degrees left and up, as if reaching for something. Her mouth is awkwardly open. I suspect her head has been in roughly this position for some time. I sit down on a basic chair beside her medical-grade bed (the kind with adjustable settings to go up/down etc). A blanket is pulled to several inches below her chin. She is roughly facing me as I sit. I study her face. The only hint of the rest of her body is the skeletal collar bone I can see just below the blanket. Her body is so emaciated that her jawline sharply protrudes against her wrinkled neck like a fossil against striated rock. She must weigh 70 pounds. She is pale as plaster and her eyes are closed. Her body has it’s own agenda to live despite the lack of movement. The mechanical workings of breath and pulse form a somewhat jarring backdrop to her stillness: the jugular vein pumps like a locomotive; her breath is steady, though labored and involuntary. It’s musical. For a while I marvel at the machinery underlying my grandmother.
My eyes drift. I notice the scene outside the window. A carpet of yellow leaves below barren winter trees and branches. The river is calm and I think for a minute what old age and dying was like for the Native American tribes that were here first. The room is a mixture of sculptures, family pictures, paintings and small accumulations from the years. These things don’t matter so I come back to present.
I was dumb to think I would talk about memories and good times etc. That’s the last thing I want to do. Instead this is visceral. Instinctively, as with a child, I reach over to stroke her hair. I tell her that it’s me; that it’s ok and that we’re all here for her; that we love her; that my kids send their love to her. I tell her it’s ok to relax. I don’t say much more. Just stroke her hair and try to be present. At one point I quietly said the שְׁמַע יִשְׂרָאֵל (Shema Yisroel, one of the most important Jewish prayers). Maybe I didn’t notice it at the outset but as I looked at her face again I noticed moisture – yes, a tear – in one eye. That single, nascent tear was welled up, trapped in the folds of her eye. I was sure I’d have noticed it from the start. Perhaps it was just what happens. But I took this as a sign that she, or some part of her, was still there with me and perhaps she was more aware than her appearance would suggest.
She would not want this. She would have ended it years ago if she could have. She would have taken a pill and ended it on her own terms, as she lived her life. She even told me she wished she had this option several times. That’s how she did things, decisively. She decided she didn’t want to live years ago. The problem is her body was too strong. All I can do in this situation is to provide comfort to the dying. I wish for her to go calmly, painlessly and peacefully. And quickly. There is nothing to hold onto.
I left the apartment with my aunt and uncle as the hospice nurse stayed behind. We got dinner. I said my goodbyes and felt like I had done what I came to do. There was nothing left. I shifted my focus on the living and what would come next for the family. This is the family matriarch and the glue holding things together. We went to dinner and discussed logistics – what the first 30 days look like after she passes, e.g., funeral prep, selling her place, etc. It was kind of cathartic to discuss all these things openly. And yet kind of strange to mix the mundane with the biological.
I spent that night with my uncle in Portsmouth RI (beautiful place if you haven’t been). The next morning he told me that she passed last night. I was both sad and relieved. More relieved actually. I was pleased to have had the opportunity for a brief yet meaningful goodbye and to be there for her in some tiny way. The next morning I went to see her for the last time. Her face had changed dramatically. It was no longer positioned in an awkward way. Her lips were closed and I swear there was a slight smile on her face. Certainly there was a peacefulness about her. It was amazing to see. If my presence in any way helped then taking a two day trip when not fully recovered from my last chemo infusion, then it was completely worth it and I wouldn’t trade it for a thing.
Yesterday I went in for back to back scans. These are the ones that tell me if the cancer is gone or not. The CT scan will look at the anatomical part – is there still a mass there. The combo PET/CT scan will answer if there’s any activity/active cancer cells. I’m somewhat surprised at how I’m not too emotional about these tests. Perhaps it’s because I don’t control the outcome. Not sure but I’m not complaining. Now I wait.
I should amend that last statement. While I’m managing to stay reasonably calm about the results I am frustrated with Kaiser about the small things. In this case I showed up for the PET drinking green tea. They had to call the doc to ask if it was ok (it is). That amounted to 10 minutes of uncertainty that I didn’t need – the thought of rescheduling the appointment was too much. The issue is the Kaiser appointment reminder provides no instructions for these tests – never mind the green tea – they don’t even tell you to fast – and therein lies the rub. The tech told me that this kind of issue happens all the time in some variant or another. Really how hard would it be to write up a single description of do’s/don’ts and put it in the calendar reminder? AARGH! More feedback is on the way. Again, the medical technology is amazing, but the practice of medicine – riddled with poor human judgment – or more likely lack of thought/diligence/attention to detail – can be infuriating.
The PET administrator was great. We had a lively discussion about the effects of radiation on the body. He was less pessimistic about the negative effects than me. He cited some studies suggesting low-dose radiation may have positive effects, on rats anyway. To which I responded that I’d be inclined to think about the problem differently. First, ionizing radiation introduces double strand breaks on DNA. Those are either repaired properly (with incredible repair proteins). Or they are improperly fixed which can introduce issues, say in the case that a gene was hit directly. Either way it’s a bad thing, and to think the body gets better at it by increased exposure seems unlikely and certainly like it would require some convincing data. Second, it might make sense to study sun worshipers, astronauts, Nuclear plant workers, etc to test the claim in real-life – I don’t think you’ll find it’s a good thing. Anyway we’re not talking about low-dose exposure here. Spying the geiger counter in the corner I wanted to see just how much radiation I was getting with the radioactive tracer. He let me check – results in the pic above.
The basic way this test works is you fast overnight. As the body is starved for glucose (apparently) the active/cancer cells preferentially uptake the injection which consists of glucose and radioactive tracer (it’s actually F-18 fluorodeoxyglucose, which from a metabolic standpoint acts like glucose). You wait in a dark room for 45 minutes while the cells do their work. The idea is to keep as many non-cancer cells from firing as possible. Then they put you in a large tube for 15 minutes that images the radioactivity in the body. The concern with caffeine or other activity like walking is that you could get false-positive results because other firing cell types might uptake the glucose. In case you’re curious the PET/CT carries about a third of the radiation of a full CT scan. A full CT is on the order of hundreds of times that of a routine chest x-ray (about 600 from conversations I’ve had). For reference a dental X-ray, or TSA scan is not even on the same scale.
I’ve been having this recurring dream and it’s always variations on the same theme. I’m in Hawaii or some watery part of the world. I’m surrounded by the giant waves. I surf them or I swim in them. And sometimes I prefer to stand on some exposed piece of rock as I’m scared of them because a) they are big, b) there are pterodactyl-like monsters in them with triangular teeth like a 5 year old might draw on a dinosaur. The dream is both exhilarating and scary. Why? Because I’m a great swimmer, I have a surfboard and I do know how to surf. But I’ve only mastered smaller waves. These waves are building size, huge. And they are inconsistent – coming this way one minute and from another direction the next. The landscape is always shifting and evolving. There is no clear orientation (e.g., my house is here, west is that way). All is flux. There is nothing stable except my ability to navigate the waves. And that really seems about right. Taking it one wave, one problem at a time.
This week I’ve seen the full cycle of things. It’s felt like months crammed into 4 days. I’ve got my own cancer front and center in my mind. I said goodbye to my 92 year old grandmother and experienced death up close for the first time. The next day I was snuggling with my 1, 4, 6 year old kids.
My circle of concerns has shrunk considerably. There is just so much less that I care about – my tolerance for drama, B.S. and the generally unimportant was low before but it’s now virtually gone. And I care so much about those things that are within my circle on concern. All of these things are imperfect works in progress, and constantly presenting problems to solve. If you think one day there will be life without problems, or you don’t enjoy solving those problems then, well, you’re in for a hard time. We get to roughly choose the space of problems we can handle: if you’re going to complain about winter then don’t live in New England or figure out a way to make it work; if you don’t like changing diapers, then don’t have babies or figure out a way to make it work, etc. Other problems are handed to us as the price of doing business (cancer). But the alternative is no problems, which is less fun, because you’re probably dead. So embrace life, one problem, at a time. It’s all a gift. It sounds trite but it’s so fragile and precious – and it can all go away quickly.
So, on with it. Test results will be in by this Friday.