The Choices Others Make

--By Sebastian H

30 years ago my mother was in a car accident.  She was stopped in the left hand turn lane of a major intersection.  Someone blew through the light, T-boned another car, which spun around the intersection so violently it was able to hit my mother's van on three different sides.  She got a broken arm out of that accident, and spine injuries just under severe enough to do surgery, but more than enough to cause pain all sorts of times later in her life.  We've long had a kind of dark humor about how being someone who drove her children around got her nothing but pain.  

She's over 70 now, so when I heard that she had back pain again I wasn't surprised.  That isn't the kind of thing that ever really heals.  She had jokingly complained about how her back was hurting her more and more for about a year.  But I was surprised to hear that it was so bad she had trouble walking and that her friends had insisted she go to the hospital for it.  Historically the problems had always been in her upper spine, but the doctors were now reporting something serious going on in her lower spine.  Old problems aren't exactly welcome, but new ones are definitely unwelcome.  She lives on her own, so we started talking about helping her move into a retirement care home near my brother in Grand Rapids, Michigan.  She was a bit concerned that her money wouldn't pay for that for the next ten or more years, but we started the research.  Meanwhile she was still in intense pain in the hospital.  This worried me because she has always had a very high pain threshold, so if she was in that much pain, something was seriously wrong.  

About a week later word came back that there was some sort of mass in her spine which had grown in between the vertebrae and caused fractures in one of them.  A few days after that, a biopsy came back--it was cancer--Multiple Myeloma to be precise.  A blood plasma cancer that was very rare, but that I oddly knew about because a friend also has it.  Blood cancers can be especially nasty because they end up circulating throughout the body.  This particular one appeared to have been caught rather late, so the untreated prognosis was 6-18 months.  The treatment outlook was immediate radiation on the mass followed by chemotherapy.  The treatment success likelihood was about 50%.  This is a little misleading as either the chemotherapy works really well, or it tends not work much at all.  It is also a bit misleading because younger patients tend to do much better than older ones.  In any case they did the radiation right away and counseled follow up chemotherapy in about two months after her body recovered from the radiation.  

By then we had found a good graduated care retirement home and had arranged for her to be able to get into it.  (This is glossing over a lot about how crazy that process is, but this post is already going to be very long).  So we had an aunt travel with her and fly her out, while my brother drove to her apartment to pack things up, and I met her at the new facility after a few days.  My brother's wife has been AMAZING in helping.  I honestly can't imagine how this would have worked out without her.  I talked with my mom a lot, and she was in intense pain.  In the past 10 years she had been getting increasingly skeptical of doctors.  This was tied to the fact that she had a serious thyroid problem her 40s which ended up in it being removed.  Ever since then she has been through countless fights with doctors and insurance companies about trying to get her thyroxin levels to a livable point.  (Especially early in the process, most of the doctors wanted to target it to the very lowest point that counted as normal.  This unfortunately made her feel lethargic, depressed, and sometimes suicidal so her unfavorable reaction to the process is understandable). We scheduled an appoint with an oncologist in Grand Rapids, and I flew out again to help with the stuff around the first appointment though I had to fly home before the actual appointment.  But already something in my heart was troubled because she was talking a lot about how one of her college friends earlier in the year had gone through cancer treatments and been miserable only to die anyway.  After the appointment she focused on how the doctor talked about getting Medicare to pay for oncology treatments by enrolling her in a study.  She didn't think of it as a strategy to avoid having out of pocket expenses (my take) so much as the doctor focusing more on getting paid than worrying about her.  We talked about that at great length.  

By January she hadn't scheduled the chemo, nor had she followed up on the tests to see how the cancer was progressing.  She kept talking to my siblings about chemo, but I wasn't convinced that she was going to do it.  For both good and ill, I'm not a particularly subtle person.  So I broached the question directly.  I told her that I would support any choice she truly made, but that I wasn't comfortable with her just slipping into a default choice by not doing anything or tracking anything until it just happened.  We talked and cried for a few days, when she finally said that she would rather have the full control of her faculties and enjoy the time she has left with her grandchildren and children without "chemo brain".  Since the chemo outcomes are so binary, I really wanted her to try once and then if it wasn't working stop.  But her feeling was the opposite--if there was a 50% chance of it destroying nearly all the time she had left without making it better, she didn't want it.  So we moved out of 'treatment' mindset and into 'management' mindset.  That was a very difficult thing for me to emotionally comprehend because I'm a bit tenacious, even stubborn from time to time so it cut against my nature.  

I arranged to fly out to see her again in early March with the intention of being careful to treat it like it could be the last time.  The visit was strangely a combination of very deep and deeply surface.  Lots of little quirks.  Like she had me go to Starbucks and get a chai latte with 8 pumps of chai.  I thought that would be sickeningly sweet, but I figured what the heck? When I got it to her she revealed that since she couldn't always send someone to Starbucks that we would divide it into 6 cups that would then be mixed with milk to make it last almost a week.  Very problem solver practical!  We also had an interesting discussion where I pulled and twisted her hair as a kind of massage which she used to have me do when I was in my teens if she had a migraine.  She said "where did you learn to twist and ground the energy like that" which led to a surprising talk about spiritual knowledge not available under most types of Christianity nowadays.  I said goodbye to her and we both affirmed that we hoped it wasn't the last goodbye, but that we should be mindful that it might be.  I told her that I would try to schedule a trip every 6 weeks or so.  

I flew back home and two days later California was shut down because of the corona virus.  Simultaneously Michigan had closed any retirement homes to outside visitors, so even though my brother lived 2 miles away, he couldn't visit.  My mom took the immensely healthy attitude about that last bit "I'm pretending that I hadn't moved from Colorado yet, so of course he can't see me all the time".  I scheduled a flight for late April.  I told her that I knew I couldn't get in even if I flew out to Grand Rapids, but that I'd move the flight every two weeks until I could. She felt cared for by that, which was the best I could do.  I moved the flight to mid May.  I moved the flight to early June.  Right before I moved the flight again I was told that I could get on the family caregiver list and get inside.  So I forced my doctor to give me a corona virus test despite having no symptoms so I wouldn't make her sick.  (The results didn't come back till I was already in the air even though I gave 5 days, but at least I found out at a stop that I was negative).  So I visited again.  This time I experienced full corona craziness--flights rescheduled multiple times.  Travel telescoping from 5 to 12 hours and from 1 stop to 4.  I had the oddest experience of being in a nearly empty Minneapolis airport for 5 hours.  Once there I had another good time with her.  A lot of focus on the day to day comfort techniques.  We had a very touching moment where she wanted to try to stand up to give me a "proper" hug.  She isn't really tracking the cancer so it is hard to tell how she is doing.  The course of it is that it degrades a bunch of organs until one of them eventually fails.  So I suspect it is going to look mostly fine, mostly fine, mostly fine, terrible.  She seems more and more mentally together and physically weaker.  Which is the tradeoff she chose.  

This was already going to be very hard, but you can imagine my anger about how the poor corona virus response makes it even worse.  Ugh.  

Comments

[sapient]

I'm so sorry that your family is going through this, Sebastian. She probably feels incredibly lucky to have you all though.

[bluefoot]

All good thoughts and strength to you and your family. I just went through this with my mother.

She had been having persistent back pain for over a year, but was essentially fine otherwise. Then she fell ill in January, and in Feb had a diagnosis of Stage IV cancer. She considered treatment but then decided it was too far advanced and she didn't want to bother.
Her health rapidly declined as NY state went into lockdown. Not all of her children could travel to see her, none of her friends could visit because of the virus. Some family were on the list to be tested for COVID-19 because of possible exposure, but there were no tests available. So they were in self-isolation while my mother was dying a few miles away, with no way to get tested so they could come say goodbye if negative. It was so frustrating.

Even so, we were lucky because she was at home and some of us could take time off to take care of her.
She passed away in April, on her own terms, tough to the end.

[russell]

So sorry you have this going on, Sebastian. I'm very glad you got to see your mother, and I'm glad she has you and your siblings and in-laws to help her.

As something of an aside, I'm curious about this:

"where did you learn to twist and ground the energy like that" which led to a surprising talk about spiritual knowledge not available under most types of Christianity nowadays.

But there is no urgency about replying about it.

Take care of yourself, stay well, and I hope you have more time with your mother.

All the best to you.

[Ugh]

what russell said

[byomtov]

Yes. wrs.

Very sorry you are facing this.

[Lewis Carroll]

Very sorry to hear this Sebastian. You are a great son and a mensch. Praying for your mom.

[Girl from the North Country]

How difficult and upsetting this must be for all of you, but she is lucky you are all being so supportive of her choice. The fact that it is happening in the year of Covid-19 certainly adds insult to injury.

That was a very difficult thing for me to emotionally comprehend because I'm a bit tenacious, even stubborn from time to time so it cut against my nature.

I completely understood (and identified with) this. Which makes it all the more impressive that you have subordinated your natural reaction to her needs. Strength to you all.

[liberal japonicus]

When I started reading, I thought we would be reading about your mom's passing. It's good that you are writing in the middle, we read the story afterwards and it doesn't really prepare us. I hope writing this was also helpful to you and please write again if you feel it would help.

[nous]

Hope you and your mother hold up well, Sebastian. Grief is hard, even when paid ahead in installments.

My sister has lost both her second husband (cancer) and our father (long-expected heart failure at 92) over the last few months. She had been turned out of the hospital at the end of her husband's time due to Coronavirus restrictions. It made her situation much harder, but what can you do?

I truly suck at this sort of public discussion about grief, so anyone who is going through this has my deepest sympathy, even if not my public acknowledgement.

[Pro Bono]

My late wife, after some thought, chose to have palliative chemotherapy for her angiosarcoma, for the sake of our young children. I hope it extended her life for a few months, because it was brutal.

Your mother's priorities are different. She's made the choice which is right for her, and you have done very well to accept it.

It takes time and grief truly to accept mortality. And then things look not quite the same.

[Marty]

Somehow a hug seems the most appropriate response, I wish I could do it. Be assured I am in my heart.

[CaseyL]

Oh, Sebastian. I'm so sorry.

I'm impressed with your Mom's choosing quality over quantity in her time remaining, and suspect the stubbornness is a family character trait. It's very good to hear the whole family is working together to get through a supremely difficult situation. You're a good kid.

Blessings and best wishes.

[hairshirthedonist]

I’m struggling to find the words, so I’m going with what Marty said.

[cleek]

what hsh said.

[wj]

Yeah, Marty nailed it.

[rdldot]

As nous said, I am no good at this type of thing because, what can be said? Cherish the time you have and virtual hugs to all.

[John Thullen]

Sebastian, thank you for this post.

It is difficult, beyond the capacity of language.

We do what we can for our parents, as they did for us, and we come to realize they make their choices, pretty much on their own terms, as they came to realize the same about us while raising and listening to us.

It is all we can do, and one day, you will reach a personal peace because you and your sibling(s) did your best within the constraints life imposes.

I related my mother's long decline and death here a few years ago. Talk about stubborn, but it was self-aimed, as she was an incredibly kind person when it came to others.

I miss her terribly and think of her daily, as I do all of my beloved relatives who have passed.

If I were to adopt a religion, it would be ancestor worship.

Everything is a letting go.

[hairshirthedonist]

Everything is a letting go.

One way I dealt with the grief from my father's death was to think of that grief as being overwhelmed by love.

[Girl from the North Country]

One way I dealt with the grief from my father's death was to think of that grief as being overwhelmed by love.

This is a subtle and profound approach. Thank you, hsh, for the moment when that dropped beautifully into my mind.

[Nigel]

I’ve not been around for a few days, so just now responding.
What John says reflects my feelings (and my Dad was stubborn like that, too).

I feel your anger, too, Sebastian. I hope you are able to let it go in time.

[Lurker]

What Marty and Ugh said.