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Running on Empty

Post #8 in the series "Reprocessing Chronic Pain"


I hit a wall yesterday - physically, emotionally and energetically. The demands on my system had exceeded the available supply of energy. There's a name for this.


Depletion.


Depletion is miles beyond fatigue. It's hitting fatigue, then pushing through it, past it, over it, and around it, until all the dashboard lights go on. Depletion is like debt – the longer you run in the red, the deeper the hole you dig yourself, and the harder it is to recover. It's also a sneaky sucker. I wasn't aware of it until I was deep in the hole.


But guess what? This time around, depletion didn't trigger a pain flare. That's big for me.


There's a cliché that we treat our cars better than we treat ourselves. If the fuel light goes on in your car, do you go to the gas station or do you keep driving until the car stalls on the side of road? Most of us will stop to fill the tank - even at one of those skanky rest-stops on the Turnpike. So why is it so hard to do that for ourselves? Why are we willing to risk having to get out and push the (proverbial) car rather than stop to refuel?


Depletion is cumulative, which is part of the reason its so sneaky. The 7 days before the holiday - as we were both working and trying to find time to shop for a turkey dinner and 5-day-weekend for four - we had something medical pretty much every day. Thursday was our first official visit to the Abramson Cancer Center. Boy did it start to feel real when we walked through that archway. You know that feeling you get when you do something for the first time - and you know it's something you will be doing over and over again in the future? We didn't look at each other, but I know we were both feeling the gravity. We met with the medical oncology team - the nurse practitioner and doctor responsible for chemo. We absorbed another disturbing set of warnings and side effects - maybe temporary, maybe not. For seven weeks, he'll have a four-hour infusion once a week, and a two-hour infusion the next day. Along with the daily radiation treatments. "Patients usually hit a wall around week 5," said Beth, the NP. That lodged in my brain with some considerable dread.


Friday: appointment with his new PCP. We decided he should have one in the Penn system. An 8am appointment meant leaving the house at 7:00. My husband is most emphatically NOT a morning person - and he's one of the only people I've ever met who is immune to the effects of caffeine. The doctor was kind, attentive, and extremely thorough. She will be great to have on the team. And, it took a lot of energy to get there, to figure out where to park, navigate the building. Then, as with every visit - weight, blood pressure, blood oxygen, pulse. Then running through all the questions and answers for an initial PCP appointment. And, of course, the cancer conversation. That afternoon, at home, a phone call about a dental clinical trial - more information to process, more decisions to make. A notification that the insurance wouldn't cover one of the prescriptions. Multiple emails to figure out which member of team would handle that (the answer was none. We had to call the insurance company). An email exchange with the social worker and then the dietician. All really valuable and helpful. All - also - adding to the pile-up.


Saturday, a COVID test in preparation for a procedure the following Tuesday. He had to do this at a Penn facility, 1/2 hour away. That trip he took solo.


Monday of Thanksgiving week was a whole day of appointments, staring at 8am (7am bleary-eyed departure). First an oral surgeon to establish that his baseline dental health was good enough to withstand radiation. Radiation affects the jaw bones and the salivary glands. There's a cascade of consequences of reduced saliva. The doctor ran through a LONG list of new preventive oral health protocols that my husband will have to do for life. Talk about something we take for granted. Never take your saliva for granted, people. Seriously. It has so many jobs!


Next came a 2.5 hour appointment with the radiation oncology team. First the nurse, who led us through a long questionnaire. Then the resident, who repeated the same questionnaire. (It didn't seem like a good idea to say, "dude, all due respect but the nurse already asked these questions AND typed all the answers into your computer.") Next came show and tell with the plastic mesh mask they use to hold your head still during treatment. Creepy. A long discussion of side effects. And then the actual doctor in charge of his case came in and ran through a lot of the same information. And he and my husband bonded over their mutual love of basketball, which was sweet. It's not that I don't understand and appreciate the value of a teaching hospital, of division of labor, and even of repetition of information. They were all great - and we left feeling like we were in excellent hands. It was just a LOT to experience, absorb, and process.


A break for lunch (easier said than done in COVID-world when it's 32 degrees outside) was followed by an audiology exam. Chemo can affect the hearing, so they get a baseline. I had to sit that one out - it was my first long wait alone in a waiting room. Not surprisingly, I suddenly became aware of the discomfort in my back. But - and this is crazy good news - it didn't escalate and it was gone as soon as I stood up. This would not have been true two months ago. It didn't scare me. It didn't make me angry. It didn't take charge. It came, it went. Yay.


Tuesday was a hospital procedure - at yet another facility with another unfamiliar multi-level parking garage - that had us leaving the house at 4:30am and not returning until afternoon. (Here's another thing I am learning about cancer. We don't get to decide much of anything. They say show up - at this place and time - and we show up. So 5:30am? Sure thing. Can you imagine any other service that you use where you'd be told to show up at 5:30am and you wouldn't question it? An accountant? A lawyer? A hairdresser? It's crazy when you frame it that way, isn't it?)


More good news on the pain front. I spent 5 hours in the waiting lounge - sitting - and only had a few minor pain flickers. And this was not a comfy lounge. It probably was, once. But it had clearly been redecorated for COVID with wipe-clean vinyl furniture with hard surfaces and straight backs. No pillows or cushions. They did have coffee, juice, and snacks though, which I appreciated. And the staff were helpful and kind. Then, another hour and a half in recovery/discharge. It was a jarring experience for me to be the caregiver to him, the patient. We had a lot of experience doing it the other way around, but he's never been in a hospital or had anesthesia. He looked so vulnerable. We were both freaked out by the whole thing.


Later that day my kids arrived home for Thanksgiving - my son, 20, from college, and my daughter, 23 from her home in Brooklyn. We were really excited to see them and to have some down-time together. We were thankful that the holiday week would give us a break from the medical stuff. And, it takes energy - a full house, a holiday meal, a 5-day weekend, family dynamics. That's the thing about depletion - even GOOD things can contribute to it. Good, happy, fun experiences still take energy. And we did not have a lot of energy to spare.

I have always had a complicated relationship with holidays. There was a lot of under-the-surface tension in my family growing up, and it was at its worst on holidays. I wasn't able to name this until I was grown with kids of my own, but what exhausted me was the pretending. Everyone put on their cheery faces with each other, and with all the relatives who'd descend on our home for Thanksgiving. But then there would be so much complaining behind the scenes. Year after year my mother put out the exact same meal (to this day, at age 83, she still makes the orange-pineapple Jello mold in the Bundt pan, complete with orange sherbet and Mandarin orange slices. It's actually pretty tasty). But it was also a lot of work, and she never felt supported enough. My sisters and I, even into our 30s, would revert to our adolescent roles, dynamics, and resentments even as we tried to make it nice for my mom, who desperately wanted us to get along. And my dad - other than managing the wine selections and martini-mixing - managed to be mostly oblivious to the whole thing.


When my dad died suddenly in 2000, and my mom sold the house we grew up in, those Thanksgiving holidays came to an end. It then became a negotiation - we live in Philly and my mom and sisters are in New England. So it was always on us to travel, even with little kids, dogs, and my pain condition. Some years we'd resist - we had some really wonderful friends-givings here in Philly. But the pressure was really strong to show up with my happy face. In my family, showing up (with food and drink) is how you prove you care. COVID relieved the pressure for 2020 but then I had to negotiate it all over again this year. This was before The Diagnosis, but I just couldn't face a trek to Vermont this year, where they were all gathering at my sister's place. After all these years I finally just told my mom and sisters the truth. I hate traveling on Thanksgiving and we are just not going to do it anymore. I thought I'd feel relieved, and I did, but they would still all be together, and it's sad and a little lonely to always been the only one left out of the pack. You can feel hurt being left out of a party even if it's one you won't enjoy. Old wounds can be especially depleting, I've found.


It turned out that we had a really sweet time, just the four of us, this year. We all shared responsibility for the cooking and cleaning (the benefit of having your kids grow up!) and there is genuine joy and ease in our relationships. No fake happy faces and plenty of spaces to retreat to when any one of us was overstimulated. Still, by the time I had my second plate of reheated leftovers, I was toast. Depletion shows up for me - in it's sneaky way - as irritation/irritability. I took about 24 hours for me to recognize that I was just really overcooked. Too much in too short a period, without my usual tools for replenishment.


BUT, but, but I didn't have a pain flare. I had an emotional melt-down, but no pain flare. I had some moments of discomfort and mild pain, but no escalation. Yeah. Crazy. My brain really has rewired. Pain is no longer my only - or even my primary - stress response. And, it's no longer the only way I get to say NO. Saying no is still hard and I still get depleted. But I have other tools to get my needs met, and other tools to recover. I still collapse sometimes - we all do (!) but I don't have to collapse in physical pain. They are still here sometimes, the discomfort, the tingling, aching, poking, burning in the back, hips, legs. Today I woke up with it again. I still use heat, ice, rest, medicines. But it's background noise - a side show rather than the main event. It comes and it goes, without taking over. Even with all the current stress and distress, this process really does work. So that's one of the blessings I am most thankful for this year.

 

In case you missed them, you can read the previous posts in this series here. You can also explore my earlier blog posts on chronic pain and food and body image, going back to 2019. To be notified when a new post is published, please subscribe. You can learn more about me on my website. And you can reach me at dana@danabarronphd.com. I'm also on Facebook and Instagram. And please forward this to anyone else you know who is dealing with chronic symptoms of any kind.