The End Creeps Closer - UPDATED
Part One: The Medical
For more than two years, I had occasionally suffered with a brief but intense pain in the lower abdomen. Fifteen on a scale of ten, at minimum. It started with eating a sourdough sandwich. It was a new loaf and after making me hurt, I threw the whole thing out. The next time I’d just had a chicken and broccoli supper. I stopped eating broccoli and limited the poultry. Then it happened after breakfast oatmeal and coffee.
Oh no, please, not my coffee!! Yep, bye bye to that, too.
As time went by the incidents started lasting longer and coming more frequently. Being still an intermittent occurrence that I hadn’t been able to associate with any specific food, I ate less and less every day, hoping to give my gut time to heal on its own.
According to Dr. Google, my symptoms fit signs of diverticulitis and / or IBS so I sought out natural supplements for treating those. One protocol using turmeric, ashwagandha, artemisia absinthium, and probiotics combined with really bland foods sounded promising. And that helped for a while, as long as I ate almost nothing.
Ultimately that strategy didn’t work. Even with just ten wheat crackers spread with butter as my only daily meal, the pain eventually lasted hours and hours more days than not.
By November 2023 I was spending more time in bed trying to sleep my way through it, in between liberally taking over-the-counter pain killers. I didn’t know why I was occasionally vomiting, too. Nonetheless, I was still trying to work on writing a new novel and updating a previously published self-health ebook.
If I can still work, I reasoned, I can wait out the pain. HA! That was not the best logic. The pain failed to cooperate. I started to take seriously whatever it was that was going on.
When I finally complained about not having any energy anymore and having this pain, my primary care doc urged me to go to the ER. Dr. E is a solo practitioner. She doesn’t even have a nurse. I chose her because her business model is something like a concierge doc. She takes no insurance and when I first started seeing her I didn’t have insurance so her quarterly subscription plan for unlimited office visits along with telemedicine calls, emails, and text messages worked for me.
But without the equipment to do x-rays or CT scans her ability to deal with urgent matters like this pain is limited. Even blood tests have to be sent out for analysis. Going to the ER was the only solution she could offer.
I was surprised that she was so concerned, but an hour after talking to her, my son called. He had a feeling, he said, that something was wrong with me. After I disclosed what I had been keeping from him, not wanting him to worry, Chris strongly encouraged me to go to the hospital, or at least call the 24/7 crisis line. He is a former wilderness EMT trained to know when a health problem really needs immediate treatment. Hoping for some home remedy to employ, I called the hot line. The nurse there repeated what my doc and son had already told me.
Believing in the principle that when I hear the same thing three times I should take the hint, it finally got through my pig-headedness that I really needed to call for an ambulance. I had no family or friends nearby enough who could get me to an ER any faster. Chris lived in the Midwest. My daughter lived near the Idaho border. There was no way I was in any shape to even walk out to my condo’s parking lot, let alone drive myself to the hospital.
Before I called 911, I had enough clarity of mind to anticipate being admitted as an inpatient. While I heard the siren coming down the street, I packed a bag with clothes, toiletries and electronics. Then I sat on a bench near my front door.
As if testing me, the pain was almost gone before the EMT rang the bell. As I opened the door, I told him, “I was having extreme pain in my lower abdomen when I called 911, but I’m feeling better now. I’m so sorry.” In that moment I felt like I had called for help under false pretenses.
Within a few minutes a second EMT arrived with a gurney. They checked my vitals, asked some questions, and decided a trip to the hospital was really needed. Apparently it wasn’t urgent, though. They didn’t run the lights and siren, and stopped for all six red lights on the way to the ER.
It didn’t take long before the whole situation began to feel like the theater of the absurd. I’d come in complaining of having had intense pain, except by the time I got there it had stopped. I may have been the only one in that moment who saw the humor in that because there was increasing concern from various people that the CT scan they had done soon after I arrived showed an abscess on an ovary, an intestinal mass, and several as yet undefined “spots” on my liver.
A hospitalist came in to get my history and interpret the initial scan results. She said it looked like I had diverticulitis. That was the likely cause of the pain. I felt like my self-diagnosis of that issue had just been validated.
The ovarian abscess surprised me as it was on the opposite side from where the pain always initially manifested. The hospitalist called in an infectious disease doc, being most concerned about the abscess. The next day I had another CT scan so that they could insert a drain. The transparent bag hanging down the right side of my gut gave a disgusting view of all the gunk getting sucked out of me. I felt embarrassed, and sorry for the nurses who had to empty the drain twice a day.
That device remained in my abdomen for the week I was in hospital on IV antibiotics and opioids, and two more weeks after I got out.
My daughter Dania travelled across the state when I was discharged to help me clean out the drain every day and make sure I ate. Having been a nanny for a child who had a feeding tube, emptying the drain didn’t gross her out like it did me. Then my son came out from the Midwest to give her a break, and she taught him how to take care of the device.
When I apologized to Chris for having to deal with it, he shrugged it off. He’d had to deal with a lot worse as an EMT, he told me. I imagined that meant profuse bleeding, broken bones penetrating the skin, ankles crushed in bear traps, and worse. Thank goodness I didn’t have those problems.
Three weeks after first going to the ER, the nausea persisted and I still was barely eating, but the pain was decreasing with the aid of the drugs. Soon all I could tolerate was milkshakes and donuts. I knew all that sugar was a bad idea, but I couldn’t feel guilty for getting some temporary relief from constantly feeling sick.
When Chris went back home, I had hopes that more rest would help me feel relatively stable enough to be on my own again. But I remained fairly weak, and often too dizzy to even walk my trash out to the condo complex garbage and recycling receptacles. It didn’t seem smart at that point to try to drive. Dania came back to be with me for a few days to take me to the hospital for finally getting the drain removed.
The infectious disease guy, Dr. R, had ordered a new drain be put in the intestinal mass and left there another week or two. That had to be done during another CT scan. And he wanted that mass cultured to ensure the antibiotics he intended to give would be the most effective.
After removing the ovarian drain I stayed on the scan table while a radiologist reviewed the condition of the intestinal mass. When a nurse asked me to roll over, I instantly got alarmed. “Why?” I asked, none too happy with what I suspected.
“The radiologist is going to put the drain in through the back,” she said.
“What? No. I won’t be able to reach it. I live alone.” My daughter had to get back to Spokane. “I don’t have anyone to help me,” I said as panic began to rise.
The radiologist came out to tell me what he saw that made a back entry for the drain necessary. “The intestines have repositioned enough that I have no clear access to the mass through your abdomen. It’s the only way to do it,” he said.
I lost it. My fear was at a 20 out of 10. My heart pounded. I started sobbing and couldn’t get myself under control. “I can’t. That won’t work. I won’t be able to reach it. I can’t do this,” I said through the hyperventilation, sobbing, and shaking.
“We can try putting an extension on the tubing,” the nurse said, “but that’s not guaranteed you’d be able to see or reach it to empty the drain.”
Without a guarantee, I couldn’t risk it. “No. I can’t do it if you don’t know for sure that I can reach it.” And how would I be able to sit anywhere? Or sleep? Impossible.
“Do you want to refuse the procedure then?” the radiologist asked.
I panicked more, this time feeling guilty about being a recalcitrant patient. Irrational thoughts raced through my head. This is what I get for waiting too long to get help, I scolded myself. This is what happens when I don’t make friends with my neighbors, I heaped on more blame.
If I had known this kind of thing was a possibility, I would have hired someone to help me. But coming up on the spur of the moment, I didn’t have time to interview anyone I could afford, and make arrangements. My daughter couldn’t stay as long as would be needed. I couldn’t move across the state to be with her and be that far from my medical care.
I felt stuck and more scared than I ever remembered feeling in my whole life. More sobbing and gasping for breath came before I could find my rational mind.
“I’m sorry. I have to refuse. I just can’t manage a drain inserted in my back.” Finally, I began to calm down, catch my breath, and stop crying. Fifteen minutes later as I was getting dressed I remembered that Dr. R had wanted a culture, and I asked the nurse if that could still be done.
“I’ll ask, she said and went to check with the radiologist. “No, the radiologist says it’s too dangerous,” was the answer. I went home feeling like I was disappointing Dr. R.
Around New Year’s Eve the pain was increasing again. Worse, I was quite dizzy and very wobbly on my feet, in large part due to the oxycodone I was still taking. To save my kids from making another trip back to me, I took a Lyft to the ER. If I had known the holidays were such popular times for people going to the ER I probably would have tried to wait a week or so. But it was good that I didn’t delay because my blood pressure was very high and potassium was extremely low, which can create cardiac problems. So I was admitted again almost immediately.
It was two nights in an overflow room with no private bathroom before a regular room was available. Then, for a full month I had more IV antibiotics, and twice daily infusions of liquid potassium, which eventually wore out the veins they were using. Big lumps of swelling under the skin and large ugly bruises developed around the IV insertion site and every drug they gave me stung going in. The meds were going into my tissues. The midline catheter was no longer in my vein.
Twice a specialist came with an ultrasound machine to locate another vein to use. The opioids and anti-nausea meds continued. By the end of the month I began refusing the potassium and antibiotics that seemed to have reached their limit of helpfulness.
At some point during the month I got a visit from an oncology physician. Despite no one yet having told me I had cancer, he spoke in generic terms about two kinds of chemotherapy, and gave out a lot of abstract statistical information that didn’t make much sense to me. His bedside manner was robotic. He barely made eye contact and I wondered if he had autism. He had a multi-sheet summary of my treatments to date in his hand, and wrote all over the back of one of the pages. He left after telling me I could take my time deciding what to do.
Looking at his notes, they were filled with unpronounceable names of chemicals and arrows meant to connect things that remained incomprehensible to me. He dropped by the next day expecting me to have taken my time quickly and had made a decision to start chemo the following week. The only decision I had made was that I didn’t want him as my doctor. I needed someone who could communicate on a human level.
A second cancer specialist, Dr. V, came by on the weekend and put things in more personal terms. Despite my blood work for cancer markers having been in the normal / don’t worry range, the intestinal mass was highly suspicious for cancer, she made plain, and it had spread to my liver. This was already a stage four, terminal condition.
“Without chemo, you may have six months,” she said. “With chemo, most people have about two years when this situation is discovered so late in the process.” She recommended that chemo start soon. Or, I could go on hospice. That meant I would get no curative treatment, only comfort care. She had a very kind but matter-of-fact affect with this prognosis and I took it in objectively like just more information to make sense of.
Okay, I thought. Well, I had never wanted to live into my 80s and I was already 74. The notion of having a relatively predictable end of life seemed reasonable. Although friends and family members along with my primary care physician, Dr E – who I had kept informed by email of everything I was going through -- all told me that they wanted for me whatever I wanted, I felt an obligation to do chemo and see what difference that might make. Even though I was not in the least enthusiastic about chemotherapy, it seemed logical to try it and see how bad it would be before deciding it destroyed more quality of life than it saved.
Chemo infusions happened every other week times four. I spent three hours in a chair, getting the toxic chemicals. Five if I was dehydrated or had low potassium again and needed additional saline or electrolytes. Then an additional amount of chemo came home with me in a portable drip contraption I called Worf that was removed 48 hours later. After that I got a week off before doing it all again.
The side effects significantly reduced my quality of life. I was constantly nauseous, weak, fatigued, cognitively out of it, and cold sensitive. Pulling anything out of the freezer or fridge required wearing gloves so my fingers didn’t feel like they were burning. Drinking cold water put that burning sensation in my throat, and the first time for a few seconds I felt like I was going into anaphylactic shock. My throat felt like it was rapidly closing -- a very scary feeling.
With the chemo I had no more pain in my gut, and was told I could eat anything I wanted, but nothing tasted good. Everything had a metallic flavor, even water. I was losing a lot of weight. Clothes that had been tight were now two or three sizes too big.
An introvert anyway, being around people all the time usually sucked my energy dry. The parade of clinic visits, home health nurses, occupational and physical therapists, family visits, and calls or text messages from friends while ultimately good for me, left me with very little stamina. When not engaged with other humans, I slept my way through Spring. I didn’t feel depressed, just exhausted.
Finally in late May I was done with chemo. Another CT scan showed the tumor had reduced about thirty percent. It was a workable size now that surgery could take it out. But surgery could not deal with the metastases to the liver. Surgery gave me a third hospital stay in six months but successfully removed what was left of the tumor.
Again I got another set of home health professionals to work with. We set a goal of not just recovering from the surgery, but also of improving my endurance and stability, and gaining the ability to get myself up off the floor if I had fallen again.
The last time I fell – alone, in the middle of the night, with my phone in another room – it had taken me 45 minutes to get back on my feet. The bathroom counter was too high to use to pull myself up, and I couldn’t get up on my knees nor get my feet under me. Even though I wasn’t physically hurt, nothing broken or even bruised, it was a traumatic incident, one that forced me to admit I really should consider more safety measures like strategically located grab bars and an Apple Watch that would alert 911 if I needed assistance.
Home health physical therapy gave me a set of isometric exercises I could do on my bed. That eliminated my fear of falling, and helped strengthen my core, which allowed me a greater sense of safety.
Sadly home health came to a sudden disappointing end when in casual conversation I mentioned that I had felt very weak and wobbly the last time I’d gone to the grocery store. Being able to drive myself classified me as no longer homebound, making me ineligible for further assistance. Now I was suddenly on my own to keep up with those exercises when I would so much more prefer to sit with my laptop and write.
In early July I met with Dr. Q, an oncologist replacing Dr. V who had retired in May. Once more I had to decide whether to put myself through more chemo to address the spots on the liver or go on hospice. She suggested getting one or two more CT scans then consulting a second surgeon who could review the scans and see if I’d be a candidate for ablation, which could burn out the liver metastases.
Why hadn’t this been done earlier? Because the spots were too small for any kind of treatment. More chemo might reduce them entirely. Without chemo, those spots might grow, but then be more responsive to ablation. But chemo side effects are cumulative. They get worse and worse, even after having a break for several months.
By August, I was feeling pretty good. Energy was coming back. Appetite was making up for lost meals. I regained ten pounds in two weeks. I began to regret giving away all my jeans. I really didn’t want to put myself through feeling sick again and all the other chemo side effects.
Another CT showed the liver spots had enlarged. Again I was in limbo, waiting to see what the liver surgeon said about ablation. Meanwhile, I have the same prognosis – two years at most. Given that it’s already been eight months since the initial diagnosis, that may mean just seventeen months.
I don’t feel like I’m dying.
Next in this tale of The End Creeps Closer comes part two: The Mental / Emotional.
And do read The Dilemma of Writing The End Creeps Closer.
© 2024 Deah Curry. All Rights Reserved. No part of this digital mini-memoir published as a blog post may be reproduced or transmitted in any form or by any means, except for sharing the link to it on social media. Thank you for reading. Watch for parts two and three to be published on this blog only. Cover designed at Snappa.
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