Quality of Life (AKA where I’ve been)

I’ve lost so much weight it’s a problem. None of my clothes fit and I need special belts with no notches to make sure my pants stay up. I think I’m back down to my high school weight or even maybe late middle school.

Every since my first brain surgery I’ve notice a “pulse” in my head when I rest against a pillow. It’s like what you might feel in your finger when you have a finger stick at a doctor’s office. I think of Buddy the Elf saying, “My finger has a heartbeat!” It keeps me awake unless I position my head in the exact center of a pillow. Now with the weight loss, I feel my whole body’s heartbeat at night– It’s strong enough that I feel the movement in my chest. I make an art of finding the perfect position where I don’t feel any pulses long enough so I can sleep.   

My evening routine of sitting and building LEGO sets is met by back pain and body aches when I standup to finish for the night. The act of getting down to a hard surface and then trying to sit and then stand back up filled my head with the pain I knew that would come. My upper-body strength is gone. I struggle to pick up Will whenever he asks, most of the time I needed to leave it to Paige.

Mina and me on her 11th birthday. Cake by Paige.

I try to do push-ups like I would do after my treatment, and my body collapses on to the carpet (forget about trying it on a hard surface).

I find myself in a position that many men fear, empty of strength and endurance. I am emasculated.

When I took my last dose of cortisol steroids in November of 2021, and now I feel stiff and uncomfortable all the time.  I was told the feeling would “probably” last about six months. My vegan comfort food is void of all taste (all vegan food really), so I abandon veganism, ironically to become more healthy. When I need it the most I cannot gain a pound of weight despite indulging on all of the food I was avoiding during my time of cortisol steroid bloat and heaviness. I eat cake, milkshakes for lunch, ice-cream for after dinner. The sugar headaches are gone, and the weight is gone. Yet I cannot do the things I desired the most when I was under the control of the steroids. Even sitting down for long periods of time hurt– I have no butt. It was suggested I take a cushion with me where ever I go, but after seeing a co-workers cushion laughed at as a “booster seat,” I decide to live with the pain.

When I’m at doctors’ offices they measure my blood pressure and once its displayed they exclaim and tell me I should go to my doctor or a hospital. They make me take it again when I’m standing up and its marginally better.  The only reason they let me leave, I think, is because Paige is always there with me. My blood pressure is low but I have little trouble in daily life. If I stand up fast, I steady myself and move on. This continues for months. I return to work. The doctors have cleared me for that.

I arrange a part-time schedule. It’s only supposed to be two days a week. It seems like enough to make progress on projects but not get sucked into the inevitable overtime deadlines and crunch. Returning after two years and after the worst of the pandemic, I know my boundaries, and I won’t let work overstep it’s given place in my life.  During working hours the office has the low hum of computers running and mice clicking, but the human interactions are as silent as a monastery. There’s the half-hearted, “How was your weekend?” or technical questions about CAD features. I sit in the cube-farm of the office. It features brand new standing desks and low-profile cube-walls so everyone is visible. There are project discussions about how late somebody can work that night, if a deadline can really be met, or griping about a new county permitting requirement. But when it comes to actual sharing or getting to know a human being, it’s radio silent.

“I’m a stage 4 cancer survivor and that’s why I haven’t been here for two years,” I announce to no-one in particular.

Engineers do not have the tool set to talk about or address cancer, or at least it’s very rare. They are good at laying out a project and finding the resources to execute the issues, but cancer is not a billable client with a deadline.

To their credit the people around me respond and thank me for sharing. I realize then that most of the office knows except the people I’m sitting three feet away from whenever I’m in the office. “I wanted to tell you because everyone else knows except you all.” I realize it’s the truth as I’m saying it. My disease has been a known quantity to the people that were there that Thursday when they found a 2.5cm malignant tumor in my brain. But its been two years and everyone that was there has an office with a door in this new building, and the cube-farm are all new co-workers to me except one person.  I understand that it would be against the law for anyone to discuss my health in the workplace, but it’s still alienating.

My questions about software changes I’ve missed are met with helpful responses and patience. I still find myself heading out to lunch alone, usually grabbing a milkshake and some fries. Despite the junk I put into my body, my weight doesn’t move. I know this isn’t healthy– I want to gain back weight and feel healthy before making myself a diabetic or give myself a heart attack.

My non-work days usually consist of shuttling the kids to school and picking them up. Some of those days are stacked with doctors appointments once the kids are at school. This routine starts during the winter and my body takes in any cold and holds on to it for too long. At several outdoor winter events I attend, I notice my hands turn white and my teeth chatter. I seem to be the only one this cold, everyone else is commenting on how nice it is outside and we should hold these events outdoors on a permanent basis. Even sitting at home I find my hands turning white. I do everything I can to  warm them up, but nothing stops me from being cold. Especially office air-conditioning. I go to the mens’ room just to run my hands through hot-water.

In a sense, I hibernate through the winter. On off-work days I drop off the kids and go back to sleep until lunch. I might do a grocery run or make insurance calls for whatever latest billing errors that I’m going through, and then I nap until it’s time to get the kids.  In this time I don’t do anything I want to do, even though I have the time for it. Even when the weather changes, my habits stay the same. I don’t write, I don’t play guitar, I don’t take walks, I don’t play video games or watch TV. I live 2 seasons like this. I stay working out for 3 months, and then leave in early June.

We try to squeeze all of this into a mid-June 20 minute doctor appointment with my oncologist.  My scans are good, there isn’t much to talk about from a cancer-perspective. He deems this a “quality of life” issue and says he will refer me to an endocrinologist. We spent the summer waiting for a phone call. The phone finally rings in July and offers an appointment in early August– and our hearts sink. That’s so long from now. I’m on a waiting list for cancellations. I sometimes call to just if there happens to be an opening. There is not.

My phone rings in mid-July and they have a cancellation at the end of July– if I’m interested. I was drained and cynical at this point, but this appointment would be more helpful than my body could anticipate .

3 thoughts on “Quality of Life (AKA where I’ve been)”

  1. Thank you for sharing this my friend. At the end of the day we are our life experiences and you sharing yours takes more courage then I will ever know. By the by If you’re ever up for it I’m sure there are good lunch spots in Gaffney, just holla at your boy.

  2. John,
    Wow, it just seems like there is more gunpoint than enlightenment at this point. I am impressed with you and Paige’s resilience and can only imagine how difficult the private moments that you and the family have with all doubts, fears, and pain/weakness that you have. I have know words but know that I think of you often. Prayers my friend.

  3. John, this is heartbreaking. I wish I had practical advice or solutions, but I am at a loss. Please know that I think of you and hope so much for a break through. If you need anything, I’m here. All my love, Dana.

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