CN: Visually painful, descriptive, and jarring memories from severe hospital ineptitude mentioned. Starting/ending of that section is marked. (Text only, no photos, btw.)
Nine Months Alone.
I feel all hollowed out inside.
I do things, and see friends, and enjoy it all on a surface level, but it so often feels like there is nothing receptive below the surface. All of it, I would have shared with you, and I can’t. Our future, my future, it evaporated with your death.
The memories we had, many of which you remembered for both of us, are simply gone. There is no one who can help me remember them. Ever.
The loss left hollowness in its wake.
It is physically painful. All the time.
I wander around my house, wondering what on earth to do with myself.
Barbra Streisand’s song The Way We Were, from the film of the same name, says:
May be beautiful and yet
What’s too painful to remember
We simply choose to forget
But it’s reversed. So many of our wonderful times are lost to me, and I remember the pain. The agony. How the hospital tortured you. How the doctors were too incompetent to help, and too incompetent, or uncaring, or both, to find you surgeons who could have helped you. What put you into the hospital last November was really nothing more than an exaggerated version of what happened August 23, 2017. But that week there was a surgeon who cared more about taking a chance and saving your life than anything else. His loss via retirement left devastation behind for us.
Your electrolytes were worse — because even though you were allowed 150 home health visits a year, BCBS kept denying them, so your weekly bloodwork kept getting pushed off.
The specialists seemed all too afraid of having their numbers drop if surgery didn’t go well. They based decisions on how other patients fared with surgery, refusing to acknowledge how quickly you bounced back from surgery – even your huge one on 8/25/17. (This isn’t me speculating, this is me saying — surgeons said this to us — “Well other patients…”.) Even the “minor” surgeries to open up your ureters with stents when you were incredibly weak in November and they didn’t think you’d make it past a few days, you bounced right back from that operation.
But real, full surgery? Tumor removal? You wanted it so badly. Even if it had not been a survivable surgery, you would have gotten what you wanted, and you wouldn’t have been tortured and drugged beyond all reason, for 2 ½ months if just one surgeon had given a damn. You had no quality of end of life because of everyone’s refusal to operate based on crap reasons.
**CN applicable starting here**
I remember what is too painful.
I remember your pain.
I remember how they skinned your legs. SKINNED. Peeled. Layers upon layers. To “treat” your lymphedema. There wasn’t a single person certified to care for lymphedema there. They said they had no one they could bring in. I have photos.
You’d started to have lymphedema in August 2017. Taking the tumor out reversed it completely. The tumor was the only reason you had lymphedema.
You couldn’t get out of bed. The hospital didn’t turn you enough. So you got incredibly painful bed sores. They didn’t do a damn thing for you until they were stage 4, and even then, their “treatment” seemed minimal and ineffective. And excruciating. Even without the photos (which I’m still surprised the nurses let me take), I will never forget how deeply I could see inside.
The images, the smells, are things I will never forget.
My love, you were tortured for no good reason. And then they gave you so much pain medication you couldn’t focus. And the “specialty” hospital forced you to have morphine which you didn’t react well to; and then the seriously bad move with the Ativan that you had trouble waking up from.
You wanted so badly to be wheeled outside to get fresh air, and get away from the hallucinations that happen after being in a hospital room for a long time.
You wanted to be treated like a real person.
You wanted to matter.
Every single person refused. They wouldn’t even try to find a way to help you.
And I still have bills to pay for it. I am still paying them for ruining our lives. Hospital torture isn’t cheap.
Did you know there’s a collection agency for the deceased? It makes me think of Beetlejuice and the Handbook for the Recently Deceased (or diseased as the line went). Remember how we actually had a book (well, I still have it) called “The Beginner’s Guide for the Recently Deceased”? Maybe I should find what bag it got packed into, and put it with your urn on my nightstand…
You’d remember, I’m sure, how any loud noise made me jump, but that was nothing compared to hearing emergency vehicles ever since you were admitted to the hospital on November 14, 2018. I have terrible memories, disturbing dreams, like it’s all happening again and we know what we need to do but it’s like screaming into a void — or sometimes, someone helps, but then I wake up, and you are still gone. I rarely talk about it, except when I write, because I hate to cry in front of people, even people I am close to; it makes me feel awkward and uncomfortable. The entire time, from 8/23/17 onward, is an all encompassing stressful experience that has still not ended. 11/14/18 – 1/23/19 being some of the worst of it. Times after that …. many are also some of the worst, in other ways.
Remembering makes my heart race, and I cry until I cannot breathe. It’s like being held together by patchwork. Except for the photo on the swings (I think there were no others?) I only save the “on this day” memories privately to a collection, but I don’t usually share them, so that when I go to write the book you wanted me to write, I don’t have to go searching for what I need. It will all be together. But I save them in a quick, cursory, vacant manner, and try not to think about the actual memories.
Avoidance is easier than the alternative.
I know several of you reading these posts have told me I did everything I could, and I shouldn’t feel guilty, but . . . it doesn’t take away the feelings of guilt. Or anger. Or shame. There’s background information only Teresa and I knew, which happened well before her diagnosis, that maybe if it hadn’t, …. it’s not something I can talk about right now. It’s too painful. And having anyone read it and say things like, “you two couldn’t have known” won’t make me feel any better. It actually hurts to hear those kinds of platitudes.
I vacillate between on edge and emptiness; as if The Nothing had visited. Worse than Artax and the swamp of sadness. I know some of you will understand the reference.
The FB posts about how awful Chick-Fil-A is are popping with regularity again, and seeing them just adds to my stress. Yes, obviously we didn’t agree with their politics, or where they spend their money . . . but . . .even before Teresa got sick, we ate there anyway, especially on road trips. Their fry fryers are dedicated gluten free. I’ve gone to CFA’s up and down the east coast, and out in CA or AZ, and I’ve never, ever gotten sick. If you don’t have to avoid gluten, you may not know how remarkable that feat is, especially in fast food, but it is. Then when T was on chemo, CFA was often the only place she COULD stand to eat. And when she was in the hospital, it was the only place near the hospital that I could get something fast.
Fries don’t make a terribly filling meal, but it was better than getting candy out of the hospital drugstore. And then, in the after, sometimes the fries are the only thing I can get down. Some days, 1 trip to CFA for a large sweet tea and a large fry are ALL I eat. I wish they still sold their carrot & raisin salad. I’ve swapped out regular popsicles for mango pops (made with actual mango).
And anyway, I see these posts, lambasting people who eat at CFA, and I ponder if I have the emotional energy to address why some of us who are liberal may still eat there anyway. Sometimes I just unfollow people for awhile, because I have no spoons. (https://autisticmama.com/what-is-spoon-theory/)
Even thing things I could normally focus on for hours (ex: The Sims 4, reading, music), it’s very hard. And I still have terrible insomnia. Some nights I go to bed at 5, 6, or 7am. Some nights, I don’t sleep at all. You’ll probably have no idea upon seeing me, even in person, if it was a sleep-sort-of-normal- hours, sleep a little bit, or not sleep at all, kind of night. I tend to mask it as best as I can if I have to go out, because if I don’t, then I might end up having to talk about it. If I do talk about it, I try to avoid doing so in public, and I may tell you everything in a quick burst, and then I’m done, and more often than not, I don’t want to have a huge discussion about it.
And it’s just getting worse.
Would the cancer have taken your life eventually? Probably. But could we have had more quality time together if someone had operated before you were so fragile. I’m sure of it. If that surgeon in Buffalo hadn’t lied to us (Feb 2018) that he’d operate if it was a quality of life issue later on? Certainly. We wouldn’t have tried to hard to go back to see him; we wouldn’t have waited on and counted on him; we would have looked elsewhere – and much sooner. Maybe we would have found the general surgeons who do the kind of operation you needed, the kind the specialists were too scared to try, before it was too late.
If surgeons would have acknowledged you had a ******* aggressive, chemo-resistant cancer, and had just given you what is listed as the *gold standard* treatment for leiomyosarcoma: SURGERY. Before you died, and after, I read about people getting so many surgeries, and you couldn’t even get a second one. It is infuriating you couldn’t get the help you needed.
There is zero reason for what you went through. None. What we both went through, in a way.
You got me a keychain that said You Are My Person. The line we loved from Grey’s Anatomy.
You were my person.
You are my person.
Always and forever and ever.