An Open Letter to My Late Husband's Oncologist

Dear Dr. A- :

Of course you know by now that Mr. Simply died November 2 -- you signed the death certificate. You had been his doctor for about 18 months by that point, and I have no complaints whatsoever about his medical care. Neither did he. I am convinced that he got as good a care at N--- Center as he could have gotten anywhere else in the country. We discussed this more than once, particularly when his treatments failed and we briefly considered getting a consultation elsewhere, so I know that he agreed. And he liked you personally, trusted you, was grateful to you for everything you did, not only for him, but for his friend Donnie as well.

But we do need to talk about your compliance -- or lack of it -- with the Americans With Disabilities Act (ADA). Every time I brought him up there, and over an 18-month period that adds up to a lot of visits, I had to struggle to overcome obstacles from the minute I rolled off the elevator.

Parking always seemed adequate, wheelchair lanes were plentiful and wide, and the curb cuts were easy to locate and use. But once I rolled off the elevator into your suite, everything changed. In the first place, there's that sofa directly across from the doors, and the unused wheelchairs parked there, and the unnecessary silk trees in giant pots. Add in any foot traffic at all, and of course there's always bound to be some, and there was no longer enough room for me to exit the elevator on my scooter!

The reception counters are too high for someone in a wheelchair to use comfortably, as are the computerized sign-in kiosks. There are rules, with the force of law, I might add, about this.

The in-house pharmacy around the corner is nearly impossible for a wheelchair user to access, as it is off on a narrow, dead-end corridor which is partially blocked, one again, by waiting chairs.

Speaking of chairs, there are way too many chairs in the waiting room: The rows are too long, and too close together to meet ADA rules. There are rules about how wide travel lanes need to be between rows: You probably need to remove at least one full pair of back-to-back rows in order to make the spaces in between wide enough. Keep in mind that those rows look great when you first arrive in the morning to open up. But when you put people in them, of course their legs and feet stick out, and the lanes become too narrow for a wheel-chair user to navigate without inconveniencing and annoying everyone. And let me tell you, it is no fun, no fun at all, to get the side-eye from a dozen people, coming and going, every single time I had to visit your practice.

You also have rows that are too long. Not only is there nowhere for me to sit in my scooter except out in the middle of the room, but the rows run too close to the walls at each end, and I can't get around them if I need to get to the water fountain in the back corner. You probably need to remove at least one chair from each end of each row, not only to allow travel around the ends, but also to allow us to sit in a row like every one else does. You could probably easily afford to remove chairs: I was there on some pretty busy days, but I never saw them all filled.

That's a key phrase, by the way, "like everyone else". The ADA is about civil rights, about being able to have the same access to businesses and facilities that every other citizen has. It is federal law. But I digress.

Once we left the waiting room, there was the issue of blocked corridors. The ADA specifies that hallways need to be a certain minimum width, and that they can't be cluttered with furniture and storage items. Yours are, beginning with the lab waiting chairs in that first hallway. Once people sit in them, their legs and feet and purses close off enough of the corridor so that it no longer meets federal standards. It is virtually impossible to navigate without everyone having to shift as I come by in order to give me room to pass. And again with the side-eyes, you know?

Once there, there was nowhere for me to park while I waited for Mr. Simply to get his labs drawn except smack in the middle of the hallway, rendering it impassable for staff and other patients. If you are going to have rows of chairs out there, I would suggest at least having the rows short enough that a wheelchair user could back his chair in alongside, or that someone in a scooter like mine could at least pull out of traffic onto the shoulder, as it were.

The back hallways are even worse, given that they are not only narrower but also cluttered with computer carts and such. The examining rooms are so small that there is barely room for me to back my scooter in so that I could participate in Mr. Simply's consultations with you. And then you acted irritated that I was in your way whenever you had to reach past me for a blood pressure cuff or something out of one of the cabinets over the sink. At least one of the rooms was so small that even backing in was not an option. Whenever we met you in there, I had to leave the scooter in the hallway -- adding to the illegal clutter.

Then there's the treatment rooms. I understand the need for every possible square foot of this area to be making money for you, but as many people as I observed coming to chemo unaccompanied, I think you could remove some of those guest chairs so that I could have backed my scooter in next to Mr. Simply's treatment chair. Instead, I sometimes had to park my scooter in a storage area (or yet another hallway) and leave it there for an hour or two while he got his infusion. This was an option, however troublesome, for me but is obviously not for a patient or family member with para- or quadriplegia. Once I was instructed to leave it in the walkway at the exit door to the waiting area, blocking that path for everyone else.

It is not beyond the realm of possibility that I myself might one day need your services. But what all of this tells me is that you and your colleagues have not given any thought or care at all to making me welcome there or enabling me to use your services with any degree of comfort. Possibly you do not even care about my needs: I certainly could interpret my experiences there over the last year and a half in just that light.

The thought of having to overcome all those obstacles on a several-times-weekly basis while sick, weak, in pain, and dying is overwhelming even to think about. I personally would be grateful if you would avail yourself of one of the consultants who specialize in bringing practices into compliance with the ADA, and getting your facility cleaned up so that people like me can use it. We make up 20% of the population -- 32% in the over-65 age bracket, which I bet is where you get most of your patients -- and you would more than make your money back if you invested in these small improvements.

I can find another practice if I have to, but I would not want to. So how about it?

Simply,

These are the good old days

. . .  tomorrow we might not be together
I'm no prophet, I don't know nature's way
So I'll try to see into your eyes right now
And stay right here, 'cause these are the good old days. --Carly Simon

When I was young, what I heard was a song about anticipation. Specifically, I heard that anticipating good things was a pleasant experience. I completely missed the message. Completely.

Fast-forward 43 years.

I've been engaging in a fair amount of bitching lately about the rigors of maintaining a household while trying to work and care for two animals and a sick Mr. Simply, all while my own health steadily declines. It started one night when I crashed into my reading chair after dinner and forgot to clean up the kitchen until it was already late, I was tired, and. . .

This.

Over the last couple of days I've been paying careful attention to what, each day, threatens to overwhelm me. The complicated pet-feeding ritual each morning, which includes preparing special drinking-water mixes for each. The dishes, of course. The trash. The laundry.

And then last night it hit me: These are the good old days! I wanted a husband, a house, a dog, a bird to care for. There are aspects of each experience that I did not exactly anticipate but on the whole, I like having a house, Diana, the bird. I like being married. I like what I do for a living, and I like the people I do it for. These are the good old days, when I have a house, a bird, a dog, and a husband to take care of, when I have a job to retire from, when my body is in better shape than it's ever likely to be again. 

So I think I'll stay right here.

Back in '71, I thought that meant that if you were having a pleasant experience, you tried to hold on to it. I understand now that Simon meant something entirely different by this -- now is all we have, and it is good. I might as well stay in it. 

Simply,

Je Suis Prest

Like any good scout, I'm prepared.

I learned the hard way.

Today, we needed to call the after-hours service about a disturbing symptom Mr. Simply was having (on a Saturday, of course -- when else?) and my cell phone would not dial out. Would. Not. I had zero bars, and for whatever reason, Wi-Fi calling wasn't working either. I had 4G -- too bad I can't communicate with Mr. Simply's oncologist via Facebook.

No problem, right? I'll just use the house phone! So I did, and left my message and our number, and waited. And waited. And waited.

It seems we have Call Blocking. Who knew?

So I turned it off, and called back and left another message. And it was at that point that I believe the battery must have died (because I left the phone laying out on the coffee table last night). We only have the one wireless. So of course we didn't hear back. I plugged it in, then couldn't leave the room because as we all know, I can't run to the phone if it rings. But it was too late.

In the meantime, the symptom went away. We decided to have dinner. And I re-booted my cell phone. It took two tries, but it does work now.

Last time I was at the hospital, Tillie (my scooter) started stopping randomly -- usually in the middle of electronically-operated doors. And so I had meant to break her down and see if there was a loose connection somewhere, which is what happened once before. Except I was frigging exhausted and never got around to doing it. So here we are, on a rainy Saturday afternoon, with phones that won't work and  a sick man and a scooter I can't trust. . . Can't you just see the bitch quitting on me while I'm crossing the street in front of the ER??

So out I go, unload her from the van, tear her down, fortunately it's not raining right this two seconds, find the loose connection (exactly the same one as last time), repair it (I hope), put her back together, load her back in the van. Hopefully now if we do wind up going to the hospital tonight, she'll run.

But that's not all!

I really like to have what I call Pajama Days, in which I do not get dressed. At all. All day. And this has been such a difficult week what with Mr. Simply being in the hospital and all, that I had planned a Pajama Weekend. My pjs, all freshly washed and fluffy and soft, were laid out on the bed before I turned out the lights last night, and my plan was to put them on this morning and not take them off again until I had to go back to work on Monday.

Hah.

Here's the new rule: Get showered and get dressed. 'Cause you never know.

Simply,

I wrote this in my personal diary on June 18, 2014, the summer that Mr. Simply was dying. I found it on the morning of June 18, 2018 and thought I would post it here. I should have written about it before, but somehow never did:

He asked me last night to tell him again why we didn't just move to Oregon. Not recalling having spoken about that previously, I inquired further. "Um, whut?" His reply: "Because they let your doctors kill you there."

So I told him I was doing this here, where my friends and home are, because I have an "after" I have to consider. I also told him not to worry about it, because we could ease him out ourselves without anyone being any the wiser, and that I would do that for him.

It is the first time we've talked about that. But I have thought about it briefly, and knew that I would risk it for him rather than see him in the kind of pain he's in now -- only worse. I don't think it much risk, though, as he will be on massive painkillers, and an "accidental" OD, on his own hook, would be easy to arrange if and when he gets to the point that he wants that. And because he's under a doctor's care, and would be obviously dying anyway by that point, there would be no autopsy as long as no one suspected foul play. And he's filled out all the legal papers necessary to keep them from making him hang on, suffering, beyond any rational point of return. I have them on file, I have a copy in my phone, and I'm not afraid to use them.

It would be hard, but I would do it for him.

I'm hoping, though, that it won't come to that. They say they can control the pain, and that they will. I think he's worried now because the pain isn't currently under control (they're titrating him up to the big guns as we speak), and because I think both of us are secretly afraid that the radiation isn't working. That does not, of course, mean that it won't in the coming days and weeks, or that the chemo won't work. It's just that it doesn't look real good right this two seconds.

He looks like an old man, moving as slowly and carefully as someone 30 years older. And I don't care what the scales say, the man is losing weight. His jeans are literally hanging off of him: I could not see that there were hips or legs in there at all yesterday as I watched him walk up the driveway from the car.

My heart is breaking. Anything that makes me think of him and what he's going through, or about losing him, makes me cry. I am reading, for example, Written In My Own Heart's Blood, and as Claire and Jamie and most of the other main characters are in the middle of a war, death and loss and love are very much the subject. So I keep marking quotes and crying.

I think of things we will never do. Someone randomly posted a beautiful photograph from a national monument and said, "You have to go there" if you've never been, and it of course instantly popped into my mind that when we were young, we'd wanted to move out West after school. We never did. We wanted to travel. We never did. Something as simple as getting back to Hatteras, where we honeymooned, or just going to the beach next week for our anniversary -- will never happen. I got an invitation to the family reunion, and sent regrets, with an explanation. I almost said, "Maybe next year" but did not, and thought to myself that if I did it might well be without him. Which led to thoughts of whether I'd ever have another Christmas or Thanksgiving, at home or anywhere else, with him. This goes on all the time.

I think of more mundane, things, too -- seeing to the yard and house, schlepping the dog or bird to the vet, all the little daily things I'll be doing without him. And it's already starting: He's suggested I start getting food delivered from Schwan's again, and I'm thinking I'm going to have to shop for the new stove this weekend by myself, make my own decision and place my own order. Which leads me to thinking of how he's always been there, how solid he's always been. Even if he's the worry-wart in any big deal in our lives (and not a few not-so-big deals--my therapist used to joke that he had Pre-traumatic Stress Disorder), he's been there, and he's been a trouper. This morning, for some reason, I was thinking about his personal fortitude, remembering that he was the one who took Sam and Lucky to the vet for the last time when I couldn't. I realize now that I could have, and should have, have in fact long known this, but at the time I really believed I just couldn't. And so he did.

He may not have been my soul mate (I think I'm so warped that there is no one who could have) but I'm pretty sure he thinks I'm his. He has always treated me that well. He deserved better in a wife and lover, but I'm getting better every day and I swear by God (yeah, I know) that I am going to be as good to him as I possibly can for every minute of every day he has left.

Simply,

The Little Bastard

As in, Mr. Simply was diagnosed last year with lung cancer. As in, he lost the lower right lobe of his lung in an attempt to excise it all, followed that up with a couple of months of chemo, and we hoped that would be the last of The Little Bastard.

Not so quick, kids.

It's back: There are now Little Bastards on his bones, and a Little Bastard on his liver.

Simply,

Dear Finger-pointing Neighbor:

I saw you. I was sitting in my favorite chair in my favorite window, reading Evernote for Dummies, if you must know, and concentrating on recovering from a cold so I could go back to work Monday. You see, I don't get paid if I don't work, and I've already had to cancel half a day for this bug.

You were walking past with your wife and your stick and your dog, and you pointed. And you said something to her -- I assume about the condition our yard is in. I mean, you could have been saying something nice about our bird feeders and nest boxes and stuff, but. As Mr. Simply put it so bluntly, when he saw you go by and point, "It's in the worst condition of any yard in the neighborhood." So what are the odds?

What you don't know is that Mr. Simply has, in the last six years, been through radiation, hormone therapy, surgery, and chemo for two different cancers. Because of his illness, he was forced out of his company, made to retire ten years early on half pay. We're a lot better off than many people who were losing their jobs and their homes in the recession that was coming on about that time, but still. He lost half his income and all of his get-up-and-go.

As for me, I have a life-long disability that has been getting steadily worse. Unlike Mr. Simply, I'm still working, but my little business went belly-up the year after he "retired", and since then I've had to cut back on my hours a little more every year so that I'm making now probably about half what I was then. 

We can't walk our dog together any more. Nor can we get out and clean up the yard like we'd like to, and we can't afford to hire it done either. Our neighbor mows the part of our yard he can get to when he mows his, and I can't tell you how mortified we are every time we see him drive over here on his little John Deere.

There are plenty of other streets you can walk down if it offends you so much to pass our place. So take your judgmental, bourgeois, ableist self on down the block -- unless, of course, you're thinking of offering to help us out a little here. In which case, sit down. Pull a weed. I'll make iced tea.

Simply,