End of Beginning?

I try and walk several times a week. I have my walk walks, and I have my foto walks. Foto walks mean I am on my hands and knees, belly, whatever it takes to get a foto. The last 2 foto walks I have barely been able to walk home. My legs are rubber, no strength. I look like a drunk. I think the Neuropathy caused by chemo has finally caught up with me though I need to do a few tests. How do I feel? Shit cause fotos were the final part of what I was hoping could bring back the creative life I had before MM.

More later.

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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

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.

gofundme.com/srcbennett-funding