Personal cancer update

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This is late night stream of consciousness, so if it’s a bit discombobulated, that’s why. My apologies.

It’s been awhile for an update. If you’re reading this I’ll assume you know the drill about our current and future financial needs. But thought to keep you updated as to my current status.

This may sound a bit out there, but when I was young, 5-6 our so, I had a vision of what my life would be like. Not in specific details, but in several major cycles. Teaching, Married, Kids, Being involved in Creative startups. (Just one of which could have been fortunate in a life) Natural History. I’m sure we all have at some point inklings of what our lives will be like so nothing really new in this. What always stuck me was the age, 5-6yrs old). These aren’t wishes our desires etc. They were the path, our at least the concrete steps along the way. I saw these cycles and the clarity with which they appeared and then kept reappearing and became true. For the most part, they’ve been successful.

Working through all this Cancer stuff, I’ve realized all those visions stopped, literally, at 50. I’ve done things of course but if predetermination exists, for me, at least in the knowing of such a thing, pre50 was laid out, post50, tabula rasa. Half a life left and no clear path. By design as well? It’s the blankness part of it all? Who knows!

Then Cancer comes along. To fill vacancy? Give me cause? (No one ever said ones way is always positive). Perusing through all this, (one thing Cancer gives is plenty of think time), I have found one thing I have always loved but had to put on hold through this. Photography.

Without being fatalistic and having been up down and all-around about how to deal with this chronic disease and the multitudinous and constantly changing side effects, which in reality has been far more loss than I would have ever expected, for sanity sake, I need to find a creative outlet if I am going to keep on keeping on. Finally after all this time it’s photography. For many other reasons which I’ll leave to another time.

Photography. It’s the one outlet I’ve always loved and was starting to make a run for when I came down with MM. If I didn’t see where I could go with it, it would be a loss. And having reason keeps me centered.

That’s the update. Not specifically about money. But this is what I am going with.

Random thoughts

Random thoughts on finding out – 6

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

62 yr m. MM4yrs. BMT. Darzalex/Pomalidamide/Steroids protocol maintenance.

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

Okay. Finally. You’ve found out you have MM. Perhaps you thought this would be a relief. This is no relief. You might be angry. Fragile. Breakable. Pain all over. Unlike anything you’ve known. Suddenly scary tales bubble up about Cancer. Horror stories. You’re Scared. Pissed. Teary eyed. Flailing away for a handle. Or any combination of these. What you need is hope.

Doctors are hopeful. They’ve seen enough to understand and what happens. You’re condition is normal’ to them in the sense this is what they do. Like plumbers. They’ve experienced this. You haven’t. It’s brand spanking new. And since it’s CANCER loaded with more baggage than you think you can bear. Don’t get ahead of yourself. Stay present. It will be hard. You may wonder where all the tears come from. If you’ll ever be able to walk up stairs instead of crawling up them again.

Friends and family are sure you’re going to be okay. And of course everyone is sorry for you. Truth is Cancer SUCKS. Nothing can change that. And it sucks in ways you have yet to find out. Cancer is tricky that way. Just when you think it’s stable Voila! It mutates.

What you really need now is HOPE. Not platitudes. Not ignorant words. You’re the one with MM and finding hope in this condition is a place you never thought you’d be. There is hope. Little bits of hope are flying around everywhere, yet to be found by you, one more MM case. But your MM case.

MM is treatable. You’ll find that out over time. Until you’ve gathered all those pieces of hope up, now is your starting gate. You could almost say this is the time of your life. Because it is your life.

Depending on the stage of Cancer you’re in, treatment may start immediately or there may be some time. No matter what, you have much to do and you’re going to need all of yourself to do it. Don’t pretend about yourself. Honesty, though it can be scary, esp since the issues MM reveals often are new as well as deep, can actually be a source of strength.

Cry when you need to. Sleep if you want. And ask for help if you need it. Caregivers want to be involved. Think of things for folks to do. This involves them and helps them feel a part of your struggle. If it doesn’t feel like a struggle now, chances are it won’t be long till it does. This is no time to downplay. And you’re going to want and need help. Tasks as simple as walking to the car may mean you stumble more than walk. You’ll need a hand. When you can’t make the BR, having help cleaning up can turn an embarrassing situation into a comedy of errors. Who thought you’d ever wear diapers again?

How others respond to you can be shocking as well as revealing. It’s not up to you to protect them. Not only are there groups for patients, there are groups for caregivers. Many think being a caregiver is harder than being a patient. Every situation is different but you are not responsible for their feelings. Avail yourself of the resources available.

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

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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.

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

A decision I made

Multiple Myeloma revealed in hiding

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.

After 3 years of dealing with Cancer, Multiple Myeloma, I have been reading posts about others experiences and questions, I finally decided to start writing about my life with Cancer. To the best of my ability, I will NOT pull punches. Cancer is bad enough without flooding over true facts.

This is the first of what I will try and make a series of posts. May they be useful or at least interesting.

My MM experience

I have MM and have had for 4 years. I’ve been through the horror of the lightning bolt diagnosis and all that followed. I am incredibly fortunate to live in SLC and be near Huntsman Cancer Institute. As well as one of the countries top MM doctors.

The table was cold. Deborah, my wife had gone to get food as we had been in the ER for hours. A hand pulled the curtain aside and then with his back to me, slid it shut. He grabbed a chair, flipped it around, sat down, handed me the plain white paper he held out, saying, Sorry to be the bringer of bad news.

We had originally gone to the ER due to the incredible, intense, abnormal pain in my right shoulder. MRI, Scan, X-Ray, 4 shots of morphine later, doc says, We can keep you here and watch you overnight, send you home to come back if things worsen. Or we can do a scan of your thoracic spine. The only thing we see unusual is the elevated sediment in your blood. Which could be anything.

I inherited the genetic heritage of bad backs from my Father. Over the last 15 years I had 2 cervical fusions, 2 lumbar laminectomies. If that had been ALL I inherited, I would have rejoiced.

If you have a bad back, and we all do, your thoracic spine is NEVER scanned cause problems arise in your ass from sitting, or your neck from whatever. No one had ever asked me about this scan though over the last several months I had considered asking. The scan was choice 2 out of the 3 given.

So the doctor was returning with the results of that 2nd choice. The thoracic scan.

Sorry but it looks like you have Cancer. MM I think. He was a great doc with a shitty job to do.

Deb knew something was horribly wrong as soon as she shoved the curtain aside.

He says I have Cancer. 58. Always in excellent health. Almost retired. Cancer??? How???

The world, once wide open now narrowed down to 2 small blurry holes. Speech disappeared. What does one say on hearing those words?

We hear them all the time. On TV. From others dealing with Cancer. Fundraising. But Cancer is a malady for others. Not you. Everythings been done right. All your life. Where? How? You need to double-check the results.

I read folks questions, stories, hopelessness, misunderstandings, etc. I was surprised at the low level of info, the lack of hope in response, the turning around of the question so responder could have their own personal say. I think I can say I understand all this, but what people need, in my experience, is solid info and hope. They’re scared. In one ear. Out the other. Initial Diagnosis is NOT a good time to throw out technical info to a patient. All suddenly falls apart. Cancer, hidden and suddenly found, has sliced through ones life. As well as those surrounding them.

So given my situation and experience, I decided to respond with this essay in the hopes some small bit can be helpful. Part of my situation is perhaps a bit different. My son in law works at UU Hospital and my daughter works as a lab manager in Tucson. Therefore, I have access to ALL the info my doctors do. I can refer to the very same reports, studies my doctors use. No room for BS here.

Sam

Give me time

I’m in the process of adding artwork to WP. I’ma bit confused as to how to link a graphics page to my political page so I get better hits.

Don’t forget to check the Go Fund Me page to help us out. We’re not looking for a house or a car we’re looking for assistance to become more settled so we don’t have to deal with CANCER SUCKS as well as our living situation.

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