Unseen signs of Cancer

In looking thru other fundraising posts and sites I noticed the most successful requests seem to be either about children or show people in distressing states of damage. We see children way too young to be dealing with Cancer: bald heads, IV poles following the everywhere, courageous smiles, parents tears, tubes seeming to come out of any orifice available, and all filled with Hope current med technology will pull them from the despicable hold of Cancer they fight day in and day out.

I’m a 62 yr, old male with Cancer, diagnosed in 2015, out of the blue as happens so often. Multiple Myeloma, a currently incurable Cancer, though very manageable if caught in time. We have a fundraising page on GoFundMe to help with the incredible expense Cancer carries. Including inability to work; trying to survive on SS disability; praying health or financial disasters stay at bay.

If you see me, there’s a good chance you wouldn’t realize I had MM. In my case what I have is serious, but almost wholly internal. The only external clue is the infusion port in my upper right chest, covered by my clothes. This is only a small sign for others unless I explain to them my MM.

For example: my right shoulder blade has been split by the more than 100 lesions which have infiltrated and eaten my bones as MM is a blood disease residing in the marrow in order to wreak the havoc from it’s out of control Darwinian mutation.

From my Bone Marrow transplant and the chemo used I have heart damage. I am left with app 65% of my former heart function. I’ve been told it’s gone. Kaput forever. Coming from someone who’s life has always been active, I am no longer able to summon the strength and ability once available to me. Frustration as well as hidden from view.

Chemo has also left me with neuropathy. Nerve damage irreversible. So I can walk ( with a cane ) but biking, hiking, athletics are no longer part of life. Neuropathy has also reduced, really stopped, my guitar playing. Fingers are not only weak but have a mind of their own.

Chemo has also depleted the energy I used to propel me thru athletics, marriage, raising kids, working my ass off to support those who depended on me.

There’s other unseen issues only I am aware of regularly. Chronic pain haunts me in every endeavor I undertake. The energy required to fight this in order to do anything can be immense.

The primary effect of all this is my hope for a retirement with energy to play with grandkids has been reduced greatly. All else pales when I ponder this.

I think that’s enough and hope I was able to make the point that not all diseases or stages of disease are immediately obvious.

If you can please consider donating to our cause, Incrementalism does work, and reduces donaters pain while ensuring we can share what we have with others.

Shared Pain is Lessened. Shared Joy is Increased.

Thank you from Sam & Deborah.

https://www.gofundme.com/srcbennett-funding&rcid=r01-153753518876-9f7e6fa766944c7c&pc=ot_co_campmgmt_w

 

 

Thalidomide? Really???

Those of us elders may recall thalidomide. It was prescribed for morning sickness in late 50s or so. It was discontinued, today perhaps blackboxed because it caused severe, grotesque birth defects.

Similar to most chemo drugs, the derivatives of thalidomode – Revlimid, Polymist, Lenalidomide – are quite toxic. However over the years researchers found there were also anti-cancer qualities to thalidomide. When researchers manipulated the molecules to lessen the toxicity, it became one more choice in the arsenal against Cancer. I believe most MM’rs take or have taken one of these drugs over the course of their treatments.

Other Chemo meds are also very toxic by design. Cancer is a nasty mutation. Among it’s many qualities is survivability. It spits off cells that can hide for years until they metastisize from an unsuspected hiding place. Leukemia can cross the brain/body barrier and sneak into the folds and crevices of ones brain only to reappear in the end game. So it seems best practice is to hammer, pound, cut, chase, burn, do whatever to stop Cancer at first sight. Hence, why the LTS (Long Term Survival rates) are moving up albeit all too slowly for those of us with MM. And also why Cancer patients suffer the way we do.

In a macabre way, the MM demographics fall on folks around 65’ish, after a good part of life has been lived. On the other hand, if you’re like me, thoughts of not seeing Grandkids grow up are the most painful of all. Waterfalls of tears have been shed, still, when I think of this. I make no excuses for MM here. Cancer sucks at any time.

I mention all this because I hope patients ask for, and receive, all the Clarity they can from their oncologists about their therapy. It’s vital patients advocate for themselves. No changes may be made, but without clarity, any changes one might have available can’t be discussed.

It’s your life, not their’s.

Sam

Maze of Memory

Support. When I started this MM series of posts, I did have some goal(s) in mind. I thought, after perusing forums, boards, other Cancer sites I had experiences after 4 yrs of MM others might find useful.

Therapeutic. I have found myself fighting this MM funk and had yet to find a way through it. Each and every step required a reserve of energy, which, other than the doing of a thing, had nothing to do with the thing itself.

Information. I found, what I thought, too many posts & responses to be of a shallow character, not really, to my mind, either answering the question, or answering in a way that would give useful info. ( I am much aware of why this is so) There is so much info about MM available, as well as a lot of BS, I think it important to offer solid info and give others the chance to use as they can.

HOPE. Many inquiries come from folks after initial diagnosis. Surprise!!! You have Cancer!!! I believe a primary need at this point is to  offer HOPE. And there is much HOPE for living with MM. All the info, protocols, etc mean squat without HOPE. The MM is manageable. The Garden of HOPE has to be sown and cultivated.


The chronological order I had tried to impose on my MM experiences very quickly fell apart. Memory is an elusive and tricky adversary. I may start with a specific memory but inevitably I am led through the Neuronal Maze (hence Neuronal Catastrophe) of MM memories, ending far afield from where I thought I would be. I knew this was a game I had little chance, or desire, of playing. I apologize for the randomness of my posts for the 1 or 2 who pay attention. What is written here is the complete truth, at least to the extent mind reveals it as I write.


Shared Pain Lessened

Shared Joy Increased

Sam

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

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.

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