Saturday, June 25, 2016

I left the room and the next thing I know ...

First, let's see if you've been paying attention. Last time I wrote about Kappa and Lambda light chain proteins.

At my clinic visit this week, I found out that the light chains are going back up; this time from 18 point something to 21 point something else. Now, light chain proteins going up are a) Good; b) Bad); c) What's a light chain protein?; d) I went out with a Kappa Lambda in college.

I know most of you got it right. The number going up is bad, especially since the medical regimen I'm on right now is making me feel poorly, as my Aunt Jessie used to say. I mean, it's one thing to feel tired and kinda nauseous all the time when you are having some success, but another thing entirely when what you're doing isn't even working.

So, we had something of a group meeting about it when we were at the clinic. Interestingly enough, I missed it. Sheri had arranged to talk to our oncologist in Augusta alone for a few minutes at the end of our session. During the visit, we had discussed a number of options and agreed our doctor would contact the Boston oncologist who is really the big dog that oversees my care.

Well, I left so Sheri and the doctor could talk. Never being one to let things wait, though, after I had gone out to the car to sit and wait, our Augusta doc got on the phone with our Boston doc and the two of them, and Sheri, were able to discuss what to do next.

Do you think I should have felt indignant at having been left out? Remember, these are the three people in my life who know as much, and in some cases way more, about my multiple myeloma than I do. So, why would I feel indignant? I was just impressed that no time was being wasted and we had a solution in place while I was sitting sipping Sheri's cold coffee in the car while working on lies to tell her about how I actually hadn't been drinking her coffee. She does not like ANYONE messing with her beverages.

So, here's where we are now. I'll continue to take the chemo and dexamethasone as I have been, but we are going to add another piece to the puzzle: Velcade, which is the first therapeutic proteasome inhibitor to have been tested on humans, an explanation which certainly comes from the “aren't you glad you asked” department.

I have actually been treated with Velcade previously. Before my stem cell transplant, it was added to the mix I was taking at the time. At that time I took it through an IV, but this time it is going to be in some sort of capsule form. I prefer the capsule, mostly because an IV means sitting in the treatment chair for about two hours, between getting it set up, getting me set up, administering the Velcade and detaching after we're done. The other way, I just take a pill, Jill, and I'm done.

I won't start the new protocol for another week, so we'll see how it goes.

In the midst of all this, I found myself thinking about my daughters, Jennifer, 47, and Alison, 44. They live quite a distance from here, so most communication is by Facebook, email, or phone.

When I first found out I had cancer, one of the tougher things to be done was to get on the phone and tell the girls (don't care how old they are, girls is what they will always be to me) to tell them. At that point, I said I would never evade the truth (also known as lying) as far as my health goes. Good or bad, I would let them know.

And that's what's happened, But Sheri noticed that as I was avoiding whining and complaining about my health, I wasn't painting a totally accurate picture for Jennifer and Alison.

I thought about that, and saw she was right, as she so often is. So, when we talked on Father's Day, I took the time to tell them that I hadn't been feeling good and that I was tired all the time. I also broached the subject about quality of life. Look, I'm not on death's door by any means, but I do have to make decisions like the one we just made about the latest treatment plan.

We had a really good conversation and I think they probably have a better handle on how I'm doing: good, but not great.

So, now we all head into this new round of treatment aware of the situation that we are fighting and what to look for in the results. Remember... light chain proteins up... what is it brothers and sisters? That's right, bad. Now you have all you need to know to track our progress. Good job.

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere

Thursday, June 16, 2016

Speak American, would ya!?

Two months after my 18th birthday, a college friend helped me land a job working for a very, very, very rich woman at her sometimes summer home in New York's Adirondack Mountains.

My principal job there was as a houseboy. Yeah. Really. Myself and another 18-year old worked seven days a week; both of us in the morning, alternating afternoon and evening shifts the rest of the time. The two of us were part of a very large staff, most of whom traveled with the woman to her homes throughout the world.

The staff was comprised of other people from Scotland, as well as England, France, Ireland, Germany and Norway. When we all sat down for supper, an interpreter was needed to help the conversation flow. Well, we didn't have one, but, at least back then, my French was pretty good, so the job often fell to me. The fact that I had only been in the country for about four years, also meant I was used to working hard to have people understand what I was saying.

On the plus side, everyone tried to talk at the same time and no one really cared what anyone else had to say, so I didn't have to be too accurate in my interpretations.

I got to thinking about this the other day when I realized that having cancer meant understanding the language of medicine as it applied to my disease. Multiple myeloma was my own particular dialect.

There are so many terms and names that I have had to develop an at least passing understanding of, so that I might converse with the medical staff in a manner helpful to us all.

First off... I had never heard of multiple myeloma until I had it. As I've said here before, cancer is an almost universal disease with very few families untouched by it's reach. Still, only one per cent of cancer sufferers have multiple myeloma, so there was work to be done before I even knew what it was I was suffering from.

Then there was all the new medicines I was given, over a dozen of them, some of them designed to help me tolerate some of the others. The biggest challenge was in ordering refills. Normally, faced with a situation like that, I would approach the glass the item I needed was kept behind and point. Not an option in this case, obviously. I did learn that most of them had common names, or “other” names, which were easier to use, which is what I did. I also learned to order refills by the number on the bottle. Dead simple.

As part of the stem cell transplant process, I was treated with a number of chemotherapy solutions. Since they were each designed to kill my immune system, I was less worried with what the names were than what, exactly, kill my immune system meant. Well, it meant... kill my immune system. Rather than worry about the names, each time one came up as a topic of discussion, I just asked, “Will this one make my hair fall out?” Eventually, the answer became yes.

Then there was the apheresis machine which took the blood out of my system, removed the healthy white cells and then put it all back. Well, put the healthy cells where we needed them and put the rest of the blood back in my system.

And the Hickman line, which was surgically placed into a large vein near/in my neck and was used to draw blood and give fluids or medications. It came to be one of my favorite things (though impossible to work into the song) because it saved me from having countless numbers of IVs put in. Since there were times when I had upwards of five lines attached at one time, you can, perhaps, see why I loved it.

The surgery to put that line in was the only actual operation I've had and it provided one of the unintentionally funnier moments of the entire journey. As I was recovering from the mild anesthetic, I heard someone say, “Great. You really killed that one.” Though I quickly realized it was a surgeon talking to a would-be surgeon who was learning the process, it did give me the chance to make suggestions on improving operating theater verbiage.

The bottom line, I guess, is that I have become fluent in speaking cancer, or at least the multiple myeloma dialect. Wow. My mother was always touting what I could have been if I'd only applied myself. Well, she should see me now.

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere

Friday, June 10, 2016

A cat of nine tales



There are times, as I know you know, when I just become sick and tired. Sick and tired of feeling nauseous. Sick and tired of being unable to be all that I can be. Sick and tired... of having cancer.

Yeah, and here we are again. I had a bad day yesterday which turned into a bad evening. It was one of those times when I can't even explain what the problem is. I know there is a problem because I feel wretched. Is it mental, though? Physical? Both? Something I haven't even put words too yet? I do not know.

What I do know is that I feel... defeated, is as good a word as any. I reach for one of my tools to adjust the feeling, but it's... it's like the problem is metric and I have a box of standard tools. They can come close to fitting the problem, but in cancer, close isn't nearly enough.

The problem was made worse by the fact that Sheri was out of the house fulfilling a commitment she made to a social group we belong to. That left just me and our cat Wolfie to fend for ourselves. He quickly realized I wasn't going to be any fun and trotted off upstairs to take a nap.

So, there I was, alone, trying to find some way to occupy myself since that's the only way I can get relief when I feel the way I did. Most of the time, watching soccer on television will do it, but the only game of any interest at all was Brazil v. Haiti. Which was pretty much like watching the opening scenes of “Jaws” with Brazil as the Shark and Haiti as the Girl Who Goes Swimming.

On top of everything else, I was cold. Now, cold is an almost constant state for me since I got sick, but usually I am able to warm myself up. Not last night. I could not get warm until... One of my periodic hot flashes decided to take the stage. But even that didn't help much. It certainly didn't last.

I did pick up a book I'd nearly finished and that helped some and then Sheri got home.

As I watched her shuck off the bits of her day in the outside world and settle into the comfort of our home, I felt gratitude flood over me. Yes, at first I thought it was another hot flash, but it wasn't. It was gratitude. I was grateful that I had someone to be connected to through all of this. I thought about people I've talked to and heard from who have to face their challenges, be they cancer or something else, alone. Yes, they have doctors and others, but when the demons come to fill the empty spaces in your day, when it becomes a case of you against them, being alone must leave you totally over matched.

I have learned that sometimes going to bed is the best solution, especially if you're as tired as I was. So, that's what I did. It was barely dark outside, but I didn't care. I just wanted to not feel like I did any more.

It worked as I quickly fell asleep and didn't wake up till about 6:45 am. As is my custom, I took a quick inventory of how I was feeling. Gggggrrrrr. No change. In fact, if anything, I felt worse. The pain in my stomach was horrible. I tried to look past the pain to see what the rest of the day could bring. Nothing. The time in front of me seemed completely empty. And, in truth, that scared me more than anything in a long time. Empty is bad. Worse than that, as I lay there, it seemed unfillable. I had my pain and a whole lot of nothing. Before I could get my self pity in high gear though...

The first sad, longing, needful meow of the day came from the doorway to the bedroom. Wolfie was back and ready to have his breakfast served to him. Here's the thing- That cat has come to rely on us to take care of him, and not just when we feel up to it. So, I got up and gave him his breakfast and went back to bed.

A few minutes later... He wanted the side door opened so he could look at and see the critters in the yard. Done. Another few minutes later... I needed to put out bird seed on our feeding table so that the squirrel, chipmunks, birds et al would come to feed and he could watch them coming and going.

Well, by this time I figured I might as well get up. I realized that the day ahead was no longer empty. It had already been filled with quite a bit of activity. Saved by the cat.

Life, huh? You never know where the light is going to come from, do you?

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere

Thursday, June 2, 2016

Ups bad, downs good, kappas rule

The story's in the past with nothin' to recall
I've got my life to live and I don't need you at all
The roller coaster ride we took is nearly at an end
I bought my ticket with my tears, that's all I'm gonna spend

The Cyrkle

I had been in this country only a few months and I didn't really know what a roller coaster was. It was sort of like when I took my first spelling test in an English class in this country and was asked to spell sophomore. Spell it? I had to ask what it was, much to the amusement of my classmates especially since we were all in tenth grade at the time.

So, just a few months later, the opportunity came to ride a roller coaster, I wasn't about to ask questions. I mean, this was 1964, so it wasn't much compared to what a roller coaster is today, but still... It was very high and looked scary. Questions might have been good, and I might even have asked one or two despite the sophomore fiasco, but, just a day or two after the spelling test, we had a quiz in health class and were asked to name a poisonous American snake. I knew it was cotton something, but classmates' laughter told me it wasn't cottontail. Oy.

The roller coaster... My friends said I should sit in the very front of the very first car because it would be less scary. Right. That wasn't true and the ride I took explains why the sum total of all the roller coaster rides I have taken in my 67 years is one.

It's ironic, then, that I've been thinking of my experience with cancer as being a roller coaster ride. How would I know, right? One experience does not an apt analogy make. Well, I've never been to Hell, but when people use it as a measure of how hot it is, I get the idea.

I suppose it's egocentric to talk about my cancer as a roller coaster ride. How often have you found yourself in situations where you're on top of things one minute and at the bottom shortly thereafter. I mean, that's life, that's what all the people say, riding high in August...

I hope you'll indulge me, though, in my use of the analogy. It's just so apt. If I were to chart the peaks and valleys of my nearly three years with multiple myeloma, joining the dots would create a pattern that has been typical of roller coasters since the country's first roller coaster ride opened in Coney Island in June of 1884. (I actually looked this up. It went six miles an hour and even I may have been tempted to pony up another nickel to ride it a second time.)

As I've mentioned before, one of the key measurements of the state of my cancer is something called kappa light chain proteins. Since December mine have been going up. The increments have been small, but consistently higher than the month before and, in this case, up is bad.

Let me pause for another bit of irony. In college, I did not pledge a fraternity nor did my academics earn magna cum laude nor summa cum laude status. Greek letters were nowhere to be found, though, as I think I've mentioned here before, I did graduate laude how cum. But I don't think that counts.

And, now, here I am tracking my kappas like my life depends upon it, which I suppose it does,

The last time I was at the clinic, the people who care for me and I were discussing changing my treatment because it wasn't knocking the kappas down. So... roller coaster alert... it came as yet another surprise that my latest blood work shows they actually have gone down. Granted, it was only from 20.5 to 18.3, but still... down is good. Eighteen point three whats? I don't quite know, but like so much of all this, I don't have to. I just need to know that up is bad and down is good and there you are.

So, are we going to change my treatment plan? Don't know. It is having a positive impact, but the chemo leaves me feeling really tired and often nauseous and the question becomes - is the latest impact enough to make feeling ill worth it?

Don't know that either. It's a roller coaster ride for another day, I guess.

There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere