After almost seven years of living with his diagnosis, M is gone.
I thought we were ready. We weren’t.
Blog
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October 29, 2022 – The Word Hospice Carries a Lot of Baggage.
Because hospice comes with so much baggage I struggled with how to discuss it with M. Then I was lucky in that Dr. M had the new doctor in the clinic suggest it. I’m pretty sure Dr. M was motivated by never wanting to have to deal with M again, but however we got here, I’ll take it.
We met with the paperwork person Thursday, the nurse came Friday morning, they delivered a portable oxygen concentrater Friday afternoon, then today the pharmacy delivered the emergency pain comfort kit. M said if he’d known this would be the care level he’d have signed on months ago.
He’s still the healthiest sick person I know but we’re definitely seeing progression in pain levels, the struggle to keep weight on, and weaknesses. It’s good to know the support system is now in place if / when things get worse.
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September 29, 2022 – Amazingly, We’re Still Out Here
Just in case there’s a single soul out there wondering – M is still plodding along! Amost six an a half years.
He didn’t have his last CT scan that was supposed to happen in October 2021. Dr. M retired before it was supposed to happen. Then, the doctor’s office screwed up the insurance authorization. They forgot to submit the paperwork at all until two days before it was scheduled so it had to be cancelled. They said they’d get a new date once the authorization came in and call us back. Well, we got the authorization letter from insurance and never heard back from the office.
That was it for M. He said he was done. Doesn’t want a new dr, doesn’t want the scan, done.
His choice.
Then, at the beginning of last month he had his MRI scheduled with Dr L. He got sick 1/2 way through (before the contrast) and refused to finish the test and said that was it, never having another. Dr. L wasn’t as pleasant as he has been previously. “Nothing of concern as much as can be seen without contrast.” No further follow-up appointments discussed.
So that’s where we are (or aren’t) as far as tests. M is done with it all.
The pain is increasing, I see it in him continuously, and then especially hard hitting in spasms – one of the worst spots is right over where the known lung tumor is. We can only assume it is growing but without tests it’s impossible to really know.
He won’t complain or tell the doctor just how bad it is… His original palliative care doctor, Dr. M, treated him as if he was a drug seeking junkie when he’d try to explain all the pains, rather than someone with metastatic lung cancer with chemo-induced peripheral neuropathy.
Honestly, it’s disgusting that a palliative care doctor should exhibit such a lack of empathy for his patients with a terminal illness.
It has been better since he’s been seeing Dr. Y, he feels like she listens to what he says, but he still puts up a “it’s not that bad” front. Unfortunately, she’s leaving, and Dr. M is the actual head of that department.
I’ve considered seeing about switching him to a different palliative group but the other option geographically is an hour away & M doesn’t like that. (Currently it’s 45 minutes to the doctor & Dr. Y was letting him have televisits except the yearly requirement to come in for the urine drug test.)
I also wonder if he’d be eligible for hospice but don’t want to (or know how to) have that conversation with him: “Well ya know, it’s looking like you might not make it six months, so…”
My apologies, I know that’s crude but it’s where I am.
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March 14, 2021 – Just Out Here, in Isolation
Next Saturday, Shot #2
The Saturday after that? Lowe’s, in a mask. M has been a model in lockdown.
Then, during the week after that he has a CT scan & Dr K.
We’re almost at five full years!
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My first meal kit service
I was such a bitch about these at first… why pay such a premium for a recipe and its ingredients. After all, I’m a good cook. But then, life has happened, and I was in a serious processed food rut. Basic, bland, and likely frozen.
My review after four weeks of Hello Fresh with three meals a week? Overall, I really like the concept. There’s about ten decent sized versions out there and so I’m thinking of trying Marley Spoon next – after all, I like Martha Stewart, lol. I’m sure I’ll try Hello Fresh again, for now we’re doing one more week of them… to use up my credits for missing ingredients in the second and this past week – I only ended up having to buy a bell pepper this last week, I was able to work around week two’s missing cheese (had some) and this past week’s missing sour cream (used 1/2 from another meal this week that had sour cream.) Nothing that will stop me from using them again in the future if I don’t try another I like better.
It worked so well for me because I like to try different recipes & flavors… and pre-cancer M did too. He tries a bit of almost all of them after I make them, then takes more if it tastes okay to his ever limited food palate. I’d say he’s eaten a half serving of a third of them, a quarter serving of another third of them, and been a pass on the remainder. I then eat the leftovers as lunch so it’s actually working perfect for me. M then eats cereal, ramen, or hot dogs. If he gets real ambitious he’ll make chicken nuggets and/or french fries in the air fryer. Mac & cheese used to be in the fallback list, but it’s moved to the no column too, as have most things with cheese.I would look at a recipe, but the effort of making a list of meals, compile the shopping list, go shopping, just to make a meal that M would probably not like? Nope. Frozen nuggets or a pot pie is fine… But the convenience of clicking on a picture & description I like and all the ingredients just show up in a box? Perfect. The meal kit helps me to eat stuff I like & not give in and eat like a 10 yr old boy which is where M’s stomach is at.
Hey, at least he’s still eating. We’re at quantity, not quality, stage for M. However, if I focus on quality, not quantity, perhaps I can have at least twenty-five healthy years more.
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July 3, 2020 – Better is Better than Nothing
So M is nowhere near 100% <–understatement. But, he is decidedly better than he was on my last post. He’s napping at the moment, he’s definitely more easily fatigued.
I don’t think it was Covid-19. Though that is continually a fear. M has a lot of co-morbidities.
He’s scheduled to go see Dr. K at the end of July, and Dr. L at the beginning of August. I won’t go to the Dr. K appointment, there’s nothing to be gained by doing so – there’s no testing and Dr. K never seems to have anything worthwhile to discuss when there’s been no testing. I’ll definitely go to the Dr. L appointment, the idea that all this weirdness recently could be a new tumor is not lost on me.
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A blue dot in a sea of red
Why has the health & safety of our society become a partisan issue? What happened to believing in science?
Around here there is a large percentage of people who think the virus is gone now. After all, their dear leader says so. Normally I can go about my world and not have to interact with that type, but this past week has had a few interactions.
Today, I go into the local market to get chicken for dinner from their hot foods. I push in a buggy from outside, about 12 people in the store that I could see, one with a mask. I get to hot foods. The woman behind the deli? Oh, she had a mask, it was protecting her chin. Mouth and nose? Breathing all over things, unfettered. Then she reached into the pan of chicken, no gloves, & dug her fingers into the piece she pulled out to rip it in half to fit it in the bag she was packing for a customer. That’s the point where I “noped the fuck out of there” & drove to KFC where their corporate asses all had on masks & gloves.
It isn’t necessarily due to the virus, that would have disgusted me pre-covid… Aren’t there health department standards?
Every day at work I hear at least one thing that disgusts me. I was told last week by a co-worker that they thought there should be a question on the company’s application for political party. I said that was fine, as I was going to judge companies based on the tv station playing in their lobby.
I’m really getting to the point in my life where I am just fed up with being silent and silenced. I’m trying to find my voice.
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June 20, 2020 – Something Just Isn’t Right
Last Monday, M woke up really nauseous. This has happened a few times here and there over this journey but something felt different this time. I’m not sure what made if feel that way. He was really weak, cold & clammy, no fever… Dr. Google says heart attack. M swears he doesn’t have chest pains. Well, dear reader, we all know you don’t have to have chest pain to be having a heart attack.
I had to go to work. I was scared but, as I’ve said before, I can’t stay home every time M is sick. As an extra added stressor, due to some poor career choices in the past eight months, I have no available time off.
M never replied to my texts after lunch and I was getting concerned, but he did answer my call on the way home. Sounded weak as all hell. Tuesday, a small bit better, then a small improvement each day. Yesterday, Friday, he ate more than he’s eaten all week. This morning? Boom, back to how he was Monday.
Again, I don’t know what is making this feel different, but it does seem so. Nausea, weak, occasionally sweating & clammy, and he can’t sit for 30 seconds without nodding off. I got him to eat a little chicken noodle soup this evening and he fell asleep between spoonfuls.
I’ve told M my concerns. I’ve been pooh-pooh’d. And there it is. He’s an adult and I’m not his mother. He’ll let it get out of control bad before he’ll agree to be seen by a dr. It has been 15 years since his first heart attack. That one gave warning signs for at least a month that he refused to acknowledge.
Something just isn’t right.
(edited in July to note – the Dr. L appointment that was to happen in May? Postponed. M did not want to go into a hospital in the midst of the pandemic)
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June 11, 2020 – So Far, So Good
M’s CT scan had no changes to the cancer. However, it also shows extensive emphysema so add another top 10 killer to M’s health record.
We cancelled his MRI. We really didn’t need to, but M wanted to. We’re rescheduled for July.
He’s getting weaker. I just sort of really been noticing this last week. I know he’s lost a bit more weight, I don’t know how much, I’m trying not to nag.
Still keeping him mostly out of stores and the public. Masks if he needs to go. I try to be careful coming home from work / errands to wash my hands and change my clothes immediately.
We’re at four years and one month. The man has nine lives, there is no doubt.
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What’s next? Locusts?
The world is spinning out of control. The US is spinning out of control. Honestly, I’m scared – for so many crazy different reasons.
When I was in middle school, I had a not-quite-right teacher. His name was Mr. Domen as best I can recall. Being 14, he seemed ancient – who knows how old he really was. He was a football coach and taught social studies. You’d learn quickly to be really careful how you passed by his room between classes. He wore his whistle around his neck and stood at the doorway, bellowing and blowing his whistle for the least little thing.
One day, I don’t remember the reason, but he grabbed a kid walking by, slammed him by his neck into the lockers, screamed in his face, and then let him go on his way. It was 1986 and that was just barely considered unacceptable.
Anyway, I remember we were discussing the history of countries and governments and he told us that the US would probably dissolve in the next few decades, that it wouldn’t make it to 250. I remember everyone basically laughing and not taking it serious. Now, I’m not so sure that he wasn’t really perceptive.
Speaking of perceptive, in a weird sort of pivot… I am not a religious person, at all. I’m not 100% atheist but damn close. M, the husband, is 110% atheist without a doubt. I also love to read, it used to be books but nowadays it’s pretty much only audio books. I read a lot of different genres and a while back, over 10+ years at this point I’m sure, I got hooked on the “Left Behind” series. The first one was captivating and I kept reading them until I reached the point where the book club I got my CDs from didn’t carry the next book and there I stopped. They got rather whacked out & unbelievable – even more batshit nuts then when, in the first one, half the world disappears – Poof!
Back to the point. I would not be shocked at all to discover that the current leader here in the US is, in fact, the Anti-Christ. And this from a near total atheist.
Next related pivot. My current job is smack in the middle of the most backwoods & racist areas of Pennsylvania. With Covid, the department of 8 had six working at home, with the supervisor and me the only ones in the department coming in. Visitors to the department, coming in to talk to the supervisor, speak in such a way as their political and religious views aren’t hard to guess.
These are the people that think it’s a hoax. Somehow, the entire world conspired together to assemble a giant conspiracy, whose purpose was to hurt their dear leader’s campaign for re-election. My husband has been yelled at while pumping gas, for wearing a mask.
Now another has come back, the one that I’m training so that I can leave this place. I’m a contracted employee, but not a temp… though they don’t understand the difference. I’m supposed to be done on July 3, but there’s discussion of extending me… I hope not. He and the supervisor are on the same side of the fence. I try to speak up against the constant flow of conspiracy theories and xenophobic, racist statements but it’s a struggle.
It is so disgusting, that in 2020 there is still so much racism, both blatant and subtle. What makes people think that your skin color determines your worth? How do we fix this? The world is boiling oil, one little pop of oil into the fire and it could blow. Every country has a group of people that get treated like shit and it’s not okay anymore.