Where it truly started

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Continuing story in the hope some small part may be useful to others.

62 yr m. MM4yrs. BMT. Dazzled protocol maintenance.

Not chronological. Not sequential. Sometimes informational. Not always personal. Always truthful.

Encounters: Beginning

Cancer. A diagnosis is like getting the worst job you never applied for. Career of last choice. It’s the job you take cause there’s no other. It’s the job you hate and you know nothing about. It’s the job you take so you don’t end up under the overpass. It’s the job that wears out the snooze button cause you want nothing more than to sleep. The payoff is huge but the work sucks. It’s one of those dirty jobs, like on TV. And no one tells you Overtime is required.

The first year is full time, on call, with lots of waiting. Appts can be anytime, 24/7. And can last for hours. It has to start somewhere. For us, it really started at UU Hospital, Neurology Center. I had an appt (don’t remember why?). Probably for some kind of MM related scan.

I was in such severe pain my son in law had called ahead to let people know we were headed up and could they be ready. In the car. All I could do was lean into the crook of my elbow while my daughter sped to the hospital, crying, moaning at every bump and turn. In the miasma of pain all I could do was wait and suffer the ride.

Protocol dictates that intake has to happen before any medical procedure takes place other than vitals. I was not just in tears I was bawling like a newborn due to pain. Not sure how I can describe it. Never have I felt this pain. A blowtorch under the shoulder while someone else is pounding spikes through it. It was immobilizing pain. I was Heads down, not moving. My daughter was running up and down the hallway yelling for help. Literally. My body was cracked crystal. Move? I’d be shattered into millions of pieces, each one screaming.

I was asked to move. Can’t you see I’m dead here? I’m not moving at all until someone removes the pain. All this was in a shower of tears and screams. This was a universe where pain had gone to a level unknown. Finally after 3-4 hits of Demerol I could move. So much pain meds I had to be reminded to breathe. Slowly. Carefully I started to move. Still in intense pain but relatively speaking finally present and immediately conscious.

Cancer seems to have made a pact with Pain. Talking to people inevitably it’s like nothing else. In addition, it’s all too often chronic. Fortunately doctors and regulators understand this so pain management is a high priority. That’s the upside. Downside: now your fighting chronic pain under the influence. This in itself is a whole management issue. It’s a tricky issue and can take months to resolve. For many, this aspect of MM is something unseen by others but quietly affecting you. Fogginess. Fatigue. Can’t think. Constipation. Sleepiness. Clumsiness. You have to add a whole slew of medications just to deal with this. Being under the influence has a whole new meaning. And still the pain resides.

Back to the story. Apparently, and I just then found this out, an MM lesson the size of a tennis ball had split my right shoulder blade in two! Split! Never have I had a broken bone. Then and there I started wondering if this was going to be life from then on. Over the months I was in pain constant, sometimes severe and immobilizing. (When I saw gofundme.com/srcbennett-funding

Encounters: Beginning – 5 posted

A Cancer diagnosis is like getting the worst job that you never applied for. Career of last choice. It’s the job you take cause there’s no other. It’s the job you hate and you know nothing about. It’s the job you take so you don’t end up under the overpass. It’s the job that wears out the snooze button cause you want nothing more than to sleep. The payoff is huge but the work sucks. It’s one of those dirty jobs, like on TV. And no one tells you Overtime is required.

The first year is full time, on call, with lots of waiting. Appts can be anytime, 24/7. And can last for hours. It has to start somewhere. For us, it really started at UU Hospital, Neurology Center. I had an appt (don’t remember why?). Probably for some kind of MM related scan.

I was in such severe pain my son in law had called ahead to let people know we were headed up and could they be ready. In the car. All I could do is lean into the crook of my elbow while my daughter sped to the hospital, crying, moaning at every bump and turn. In the miasma of pain all I could do was wait and suffer the ride.

Protocol dictates that intake has to happen before any medical procedure takes place other than vitals. I was not just in tears I was bawling like a newborn due to pain. Not sure how I can describe it. Never have I felt this pain. A blowtorch under the shoulder while someone else is pounding spikes through it. It was immobilizing pain. I was Heads down, not moving. My daughter was running up and down the hallway yelling for help. Literally. My body was cracked crystal. Move? I’d be shattered into millions of pieces, each one screaming.

I was asked to move. Can’t you see I’m dead here? I’m not moving at all until someone removes the pain. All this was in a shower of tears and screams. This was a universe where pain had been gone to a level unknown. Finally after 3-4 hits of Demerol I could move. So much pain needs I had to be reminded to breathe. Slowly. Carefully I started to move. Still in intense pain but relatively speaking finally present and immediately conscious.

Cancer seems to have made a pact with Pain. Talking to people inevitably it’s like nothing else. In addition, it’s all too often chronic. Fortunately doctors and regulators understand this so pain management is a high priority. That’s the upside. Downside: now your fighting chronic pain under the influence. This in itself is a whole management issue. It’s a tricky issue and can take months to resolve. For many, this aspect of MM is something unseen by others but quietly affecting you. Fogginess. Fatigue. Can’t think. Constipation. Sleepiness. Clumsiness. You have to add a whole slew of medications just to deal with this. Being under the influence has a whole new meaning.

Back to the story. Apparently, and I just then found this out, an MM lesson the size of a tennis ball had split my right shoulder blade on two! Split! Never have I had a broken bone. Then and there I started wondering if this was going to be life from then on. Over the months I was in pain constant, sometimes severe and immobilizing. (When I saw the oncologist outside 6 months later he actually remembered me. Why? Because even he had never seen someone in such pain!!!!). Fortunately, Huntsman knows how to handles pain. They understand pain needs to be managed so one’s life can go on. From day one, I never once had to fight for pain management. MM eats your bones. Bone pain is the worst. It has to be handled.

Grace and love

Sam

First impressions

gofundme.com/srcbennett-funding

Continuing story in the hope some small part may be useful to others.

62 yr m. MM4yrs. BMT. Dazzled protocol maintenance.

Not chronological. Not sequential. Sometimes informational. Not always personal. Always truthful.

First impressions – posted

NOTE: Since these posts started suddenly I have not organized them. I’m not sure if I could at this point. So I hope the disarray you may find here doesn’t keep you from the first of the writings. In many ways these reflect the stream of consciousness nature of my last 4 years.

What was is no more when Cancer is found. Coming to that realization has been slow and fraught with fear, depression, denial, and occasionally hope as MM progress. I tend towards the optimistic which can keep me from understanding as quickly as others.

Cancer Care is at the forefront of Integrative Health Care. If you’re fortunate to have access to a Cancer center, though it can be overwhelming, consider your self fortunate to have all the resources made available to you and yours.

One could almost think you’re on vacation. Almost. Huntsman offers 6 floors of massage, acupuncture, exercise equipment, library, tables of puzzles and magazines. Private corners. Gourmet restaurant. Beautiful stone work. Hospital floor. Everything seems to have been done to make Cancer secondary. It’s not and you and hundreds other know it. Despite all this, going there is not something I relish.

I start prepping for appts a day or two prior. Long infusions require me to bring food and things to do. I wear and bring clothes for infusions. It’s often to cold. The 5 hrs. of Daratumamab mean I’m going to feel like I have the Flu for 1-2 days. Not to mention my discombobulated thermostat and all the sweating I do. I can change clothes 3 times in a half hour cause of the sweat soaked garments.

Anxiety. Something always lurking now. On Huntsman days and prior, it can be unbearable. Up early. Ready to go way too early. Labs (blood draws) to make sure I’m still of a piece. Then 30 mins waiting anxiously to see if anything changed. Fortune seems to be with me so far as, except during BMT, all my bloodwork has stayed normal throughout. This fact is probably the one thing I am always glad to be reassured about. MM’s insidiousness doesn’t stop at the bone level. As disease progresses, organs, struggling to keep going, start to wear out in t the struggle. I’m not sure how that looks to a patient, but it is something I hope to avoid.

Sam

Shared Pain is Lessened

Shared Joy is increased