Saturday, April 26, 2014

Hon... I think that's a bear out there

So, this is the last “We're going to Boston” piece; we do leave in less than 12 hours, after all.



We've said our goodbyes and all that remains is to pack the car with stuff we'll both need for the first week and then for Sheri the three weeks I'll be in the hospital. We've even remembered to get keys to our friends who will be staying at the house while we're gone.



The actual transplant process starts on Monday afternoon when I go to Brigham and Women's Hospital to have my central line put in. Then we harvest the sea monkeys (stem cells) and on Saturday I go into the hospital for chemo and the actual reintroduction of stem cells, which is the transplant part.



Of course, all this waiting and finally taking action reminds me of a story.



For some reason, back in the day, I recall a big kerfuffle over what type of person you are when faced with some mildly scary choice, like, say, a sudden noise in the basement. Do you immediately move toward it, determined to solve the mystery, or do you sit back to see what happens.



Why was this a big deal? Who knows. I just remember that it was.



I was always one to charge ahead. I couldn't stand being nervous or scared, so I would set out to find the answer, no matter what it involved. I realize now it was more about control issues than anything else, but that's for another day.



The only time charging into things instead of waiting really became much of a deal was in the summer between my freshman and sophomore years at college when a friend got me a job at a private estate in New York's Adirondack Mountains. About 40 miles back in the woods, it was owned by a fabulously wealthy woman. How wealthy? Well, I was almost fired because I spoke to her before I was spoken to. Not kidding. The stories I could tell.



We were far enough into the wilderness that bears were occasionally a problem; big bears wandering into the estate. Another thing about this place, it was far enough back in the woods that when it got dark, it got dark. Pitch black, unless the moon was shining, otherwise it was starlight only.



One of the women my age and I struck up a romance, which on the night in question found us sitting in a friend's car near some of the estate buildings. I didn't know how to drive and she couldn't drive a manual transmission. But, who cared. We were just there kissin' and huggin'.



As involved in that as we were, we were soon distracted by a scratching noise, followed by what sounded like low growls. Still, kissin' and huggin' continued until the growling and scratching outside got much louder and much closer. Remember I said how dark it as? Well, it eventually got loud enough and close enough that we didn't have to see. It was a bear, and it wanted, in our minds, to open the car like a tin can to get at the Spam inside, us being the Spam.



We locked the doors, because, hey, everyone knows how good bears are with door handles, and clung together. Remember again, neither of us could drive that particular car, so I started to blow the horn. We also did considerable yelling and screaming from inside the car. The bear seemed unimpressed because it started to scratch its way up the driver's side door (mine) and to really go to work on the window.



This is where the whole “what would you do” question popped up. I could sit there and, I guess, wait for help, which, at 65 years old, seems like a pretty OK choice. But at the time I was 18, so I decided to go outside and fight the bear. I figured, at the very least, while I was being mauled, my girlfriend could get away. I'm serious. I find it hard to believe that I could ever been so noble, but I was British after all.



So, I fight the door open and... the bear starts to laugh. I don't mean, like a bear laugh. I mean a human laugh. Seems the guy who was letting us use his car had taken one of the rich lady's priceless bear skin rugs, wrapped himself up in and pulled off this stunt. I was so mad at him, yet so relieved not to be bear Spam, that I just collapsed on top of him.



That wasn't quite end of it, though. We had made so much noise that the rich lady asked our boss what had happened. Oye. We were pretty sure we were all going to get fired, but, somehow, he must have spun a good enough story that we kept out jobs.



It seems fairly natural, then, for the transplant process to remind me of the bear story. Like the bear I thought I was facing, the transplant is big and scary and aggressive, but in the end, I finally get to go toe to toe with it at last. It's been hard, frankly, to sit for weeks and weeks with the doors locked.



As we enter the next bit, my plan is to continue to write as often as I can. I just don't really know how often that will be. Just know that Sheri and I will both do what we can. Also, we are both on Facebook and Sheri will be posting regularly on what's going on.



We will have your prayers and best wishes with us at all times. They have made a big difference to us on this journey and please feel free to continue to add to them. Cheerio for now.



Thank You note: We wanted to thank all of you who have shared and/or donated to the Go Fund Me site our daughters, Alison, Jennifer and Kristie, have established. We're much more used to helping others than being helped, so it's been hard for us to allow even our kids to reach out like this. However, this isn't really the time for pride to guide our decision making. If you would like to see photos of us and our family- and maybe even make a donation :)- visit www.gofundme.com, and enter my name or Finding the Pony in the search box.





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.”




Tuesday, April 22, 2014

Sea monkey see, sea monkey do


I'm fortunate to be one of those people who have little trouble swallowing pills. Then too, I have no particular aversion to needles, as in hypodermic needles. I take a handful of pills everyday and I've had countless needles stuck in my arms for countless procedures over the months I've had cancer. No muss, no fuss.



I don't know how people typically develop a fear of needles, but I would imagine some sort of traumatic experience was usually involved.



Looking back perhaps I should have an aversion to needles since I did have something of a traumatic experience when I was about 12 and still living in Scotland. In truth though, I think it was far more traumatic for the kid in front of me in line.



In the early Sixties, the polio vaccine had just been approved for use and authorities wasted no time inoculating children. In my memory, none of us had been vaccinated before, or at least not en masse. So there was the sense of adventure as we all trooped out of class into the inoculation area. Of course, girls formed one line and boys formed the other. It would take more than the fight against a terrible disease to disturb that bit of decorum.



The lines weren't separated by much, so there was a certain amount of posturing up and down the boys line. The ladies would see no shoddy examples of faint heart in the male ranks; not British, you know.



From my spot in the line, I wasn't completely sure that there wasn't some faintheartedness afoot, but it was hard to tell. The pushing, shoving and posturing generally seen when boys our age were made to line up for anything were present, but, to me, seemed subdued.



Before I continue, let me just say something about hypodermic needles of the day. I'm sure they weren't the knitting needle-sized jabbers that I remember, but nor were they the hair-thin pokers of today. It also seems like a needle could be used more than once, though sterilized in between uses, and word was that some were, therefore, duller than others.



This gave an added level of post-inoculation bravado with the common claim: “Och aye. Ye should have seen the size o the thing; like ma mum's knittin' needles. And ah saw them use it on at least a dozen lads beforrrre they used it on me.”



Still, the John Neilson Institution's polio vaccination day was going along just fine. Most of the boys still wore short pants as part of our uniform. For this occasion, we had taken off our white shirts, school ties and blazers, This state of atypical undress, outside of the gymnasium, caused enough discomfort for the volume of chatter to fade into the general soundtrack of the event.



One of the interesting things was that most of the noise was coming from the back of the lines, where the jab was still something of a promise. As we got closer to the nurses, we seemed to focus most of our attention on the needle, hoping for a sharp one, little used, bragging rights be damned.



Finally, my turn was near, only one kid in front of me in fact. I don't remember his name, but he seemed small for his age and was known as a quiet child. He stepped up to the nurse, as he'd seen so many do, and almost immediately dropped to the floor like he'd been hit with a cricket bat. I mean, one minute the kid is standing and the next minute he's unconscious, bringing the conveyor-like efficiency of the vaccinations to a complete halt.



Nobody laughed or made fun of the kid. That would come later. I can tell you this, though. The nurses wasted no time getting rid of the body. I mean, the kid was still alive, but his laying there was going to have a negative impact on efficiency. I'm not sure what they did with him, but I did see him later in the day and he was fine.



They also didn't waste anytime dragging the next boy, me, into position. Slam, bam, thank you ma'am, Take that polio! Next!



I would guess this story came to mind because I just started a course of 18 self-injected doses of a medicine designed to stimulate the growth of my baby stem cells, or, as a friend of ours calls them, Jim's sea monkeys.



Now, Sheri is an insulin dependent diabetic and has been for 20 years. I have watched her insert countless needles into herself over the years. Our beloved cat Samantha was insulin dependent the last few years of her life, and we gave her twice-daily shots. So, I got to see a lot of nice needlework over the years.



Of course, almost all those shots were pretty painless to me. I'm not saying I was all scaredy-cat about injecting myself, but... In the end it was a case of no guts, no glory, no choice. It did help to remember that a healthy sea monkey is a happy sea monkey.



Thank You note: We wanted to thank all of you who have shared and/or donated to the Go Fund Me site our daughters, Alison, Jennifer and Kristie, have established. We're much more used to helping others than being helped, so it's been hard for us to allow even our kids to reach out like this. However, this isn't really the time for pride to guide our decision making. If you would like to see photos of us and our family- and maybe even make a donation :)- visit www.gofundme.com, and enter my name or Finding the Pony in the search box.





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.”

Sunday, April 20, 2014

Huh. That didn't completely suck


Well. That went better than any of us could have hoped.



We had our ten-hour chemo session on Friday and came through it with no problem. Maybe I should say so far, but of course so far is all we've got, so...



There's a scene in one of my favorite movies (sue me), “Field of Dreams.” Young Archie Graham has just been knocked down by the pitcher because Archie winked at him. Shoeless Joe Jackson takes the kid aside and asks him what the location of the next pitch is likely to be. The kid says low and outside “or in my ear.” Joe pats him on the back and tells him to to be ready for low and outside, “But watch out for in your ear.”


That dialogue kept running through my head as my treatment progressed. The staff at the clinic had done a really good job preparing us for a long, difficult day, which it was, I guess. We left home at 7 am. and got back at about 5:30 pm, so it certainly used up a lot of hours. Of that, I spent almost eight hours attached to my IV as a variety of medicines were introduced, including the Cytoxan which was the chemotherapy itself. As well as massive doses of fluids (and I did you-know-what like a racehorse), there were a number of anti-nausea medicines and other cool-sounding stuff. At one point I thought I saw eye of newt, but I probably didn't.


With the amount of Cytoxan I had to take, the general feeling was that I would end up nauseous. But I guess the staff didn't know their own strength because I didn't feel nauseous at all; low and outside, if you will. Hey, I was as surprised as anyone that it wasn't “in your ear.” 


I would have thought that sitting there all day, attached to a pole, would have been bad, very bad. Maybe my attitude is as good as you all keep telling me it is, because it just didn't seem that bad. Time went by. It wasn't as if I had anyplace to go and the chair I was in was nice and comfy.


I was glad to be at the clinic here because at least I knew some of the staff and we were able to chat. Some friends came and visited before taking Sheri to lunch. Well, they only went as far as the cafeteria, but you know what I mean.


I dozed a little. It may sound slightly daft, but the sound of the IV machines dispensing medicine was incredibly soothing.


I kept wondering why the whole thing wasn't more... painful... more unpleasant. I know, I just should have been happy it was what it was. But, let's face it: you sit in a chair- any chair- for eight hours and see where you mind takes you. I was happy, by the way; amazed, really. Though, in truth, we've have had so many people praying for me and Sheri, that I shouldn't really have been surprised.


I did find myself revisiting my PacMan theory of cancer. As many of you know, before I got it, I always sort of imagined that you would sense the cancer cells working through your body like PacMan. Well, that was a gyp. Cancer cells are actually creepy, cunning little bastards that you'd hardly know were there if they didn't hurt.


On Friday, then, I thought maybe I'd sense the chemo moving through my system; that each area it left would feel different than the one it went into. Nope. With all the fluids that accompanied the chemo, all I felt was the never-ending need to go to the bathroom.


Being first in and last out for the day, we got the chance to see the entire clinic staff at work for the whole day. Of course, I hope you never get cancer, but if you do, I also hope you have a staff like this working on your behalf. They take a lot of the fear and dread out of what is happening to you.


So, now little remains to be done up here. We've arranged for house sitters, started packing, and borrowed our friend's GPS again. It seems like this trip has been part of our lives for a lot longer than three months: When we go to Boston. When we're in Boston. While I'm in the hospital. And so on. It seemed like it would never get any closer. And now here we are. Ain't time just a pisser, though?



Thank You note: We wanted to thank all of you who have shared and/or donated to the Go Fund Me site our daughters, Jennifer, Alison and Kristie, have established. We're much more used to helping others than being helped, so it's been hard for us to allow even our kids to reach out like this. However, this isn't really the time for pride to guide our decision making. If you would like to see photos of us and our family- and maybe even make a donation :)- visit www.gofundme.com, and enter my name or Finding the Pony in the search box.







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.”

Wednesday, April 16, 2014

The word of the day is... glum. Glum


“I think I'm feeling glum today,” Sheri said early one morning this week.


“Really,” I said. I was sorry she was feeling sad, which I was, but I was fascinated by her word choice. Who says “glum” anymore? Yet, by the look on her face, it was the perfect word.


I weighed and considered the tone and words of my response and decided on an old favorite- sarcasm.


“I can't imagine why you would feel glum,” I said. “After weeks of waiting, on Friday I'm going to be given a massive dose of chemotherapy that is guaranteed to make me feel bad. Bad enough, in fact, that I'm taking pain relievers during the process and, according to someone who should know, absorbing enough fluids to ensure that I pee like a racehorse. One of the medicines is so that my bladder doesn't bleed. I need to keep chewing ice and taking something that is basically artificial spit to avoid mouth and/or esophageal sores, and we have to be at the clinic for at least 10 hours.”


“I know. I just don't like the feeling.” I knew that, of course, but I also knew she needed to feel it and deal with it as she has so many other things. It sucks to realize that, by the way. But, she has her own support system, including God, so I could just butt out.


Truth is, I feel pretty glum myself. I'm sitting here with this major event hanging over my head which, mind you, is only the first step in a long, arduous procedure. And do you know what I find myself thinking about? Pregnant women. Not any particular pregnant women, just pregnant women in general. Weird, right?


The pain women go through to have a child? Yeah, I pass. And they have nine months to consider it, be aware of it. Yes, they don't know the specifics, maybe, but they know it will hurt. But here's the wondrous thing to me... many of them choose to do it again! I've asked many women about this and the common answer is that they forget about the pain and remember holding the baby. I'm pretty sure that when I'm done with this my stem cell transplant, I'm not going to go all soft and gooey over my baby stem cells and want to do it again.


So, as I sit pondering this procedure, I realize, once again, I'm far from unique. Sometimes I like to think I am, but I know all of you have had something major hanging over your head that you had to wait to deal with; maybe you're doing it right now. I know my fellow cancer sufferers have, and are, for sure. But not being unique doesn't really make me feel any less... glum.


I've been trying to figure out what's going on with me. Am I scared? I don't think so. Maybe. Probably. Well, a little. There's certainly trepidation over the chemotherapy, which is what I am focused on right now. The other steps in the transplant are down the road, and I'll get to them when I must.


But the chemo is only a few hours away. I've known the date for weeks, so you would think I might have done some work around how I would feel. De-nial is not just a river in Egypt, my friend.


At the same time, I'm anxious to get started. So far our strategy has been the medical equivalent of the rope-a-dope; absorbing blow after blow. Now we get off the ropes and start punching back.


Of course, the other side gets to keep punching, throwing some major side effects at me: nausea, vomiting, bone marrow depression, hair loss, mouth soreness, bleeding in the bladder. Ouch.

On the positive side: While reading about all the things I needed to know about Cyclophosphamide (Cytoxan), I didn't even need to skim the section labeled “Sexual Problems and Reproductive Concerns.” I turn 65 the night before my chemo, and Sheri will be 65 in a couple of weeks. I don't have to spell it out for you, do I? Didn't think so.



When this chemo is done, most of my immune system will have been destroyed. Hence, avoiding infection becomes our full-time job. I'll be taking a couple of new drugs: one to fight infection and one to encourage any healthy stem cells to grow. It means I won't be leaving the house or hanging around with people for about four months, other than going to the clinic and hospital.



Still, both Sheri and I feel better already. We're pretty much de-glummed, and moving on. The big thing about all this stuff we are going to be going through, is why we're willing to go through it: to get me healthy, or at least much healthier. That's what we focus on and that's why hope and faith always trump whatever demons may pop up. A long time ago someone shared this simple truth with me: “When you're going through hell, don't stop.” True then, true now.




Jim's note: Our daughters, Jennifer, Alison and Kristie, have established a site through Go Fund Me to allow people to make donations to help Sheri and I with the costs of fighting my cancer. If you would like to see photos of us and our family- and maybe even make a donation :)- visit www.gofundme.com, and enter my name or Finding the Pony in the search box.



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, April 11, 2014

Shipping up to Boston II


Stop me if you've heard this one.



A guy walks into a doctor's office. He's been sick and is seeing this doctor for the final discussion on a treatment that will dramatically affect his health.



The doctor, as always, is pleasant, professional and encouraging. “We're going to go ahead with the stem cell transplant. Things look really good!”



The guy, of course, is very happy.



The doctor continues: “I know your treatment so far has caused you a few problems, but what comes next is going to be much harder. I don't want you to be shocked when it isn't as comfortable for you as it has been. In fact it will be quite uncomfortable.”



The doctor is so positive in his manner; is so focused on the outcome rather than the bumps along the way, the guy says, with no trace of sarcasm, “Uncomfortable? That's great doc. Let's get started!”



Okay. The guy is me and the doctor is my Boston oncologist. You got me. The rest of it's true, though.



Sheri and I had a 14-hour day when we went to Boston, including travel time. As if that wasn't challenge enough, Wednesdays are the days after I take my steroids, which means they are the days I CANNOT stop talking... at all. I try, but fail. So, Sheri had that going for her all the way there. Also, I drove. I guess I don't drive too well on steroids. Who knew?



Prior to going to the hospital, I had a bunch of tests done at the clinic here in Augusta that were sent down ahead of time. While I was in Boston, they drew 15 (!) vials of blood. I also had a pulmonary test. I got 100 on that one, but it was hard. It involved deep breathing, which is not my strong point right now.



We met with one of the charge nurses for my transplant who covered a lot of the details about the procedure. They had us talk to a social worker to make sure we had everything we needed to be in Boston for a month, and to make sure I was dealing okay with the mental aspect of all this, which we agreed I am. And finally we met with the oncologist who drew all of it together and told us everything looked really good!



I'm not kidding about the oncologist, by the way. He cares about me getting well. That's what he thinks about and, though he doesn't minimize the bumps, he knows they're worth it because of how much better I will feel and makes me and Sheri believe it too.



Now. Let's face it, the “bumps” include: doses of chemotherapy strong enough to kill me without having healthy cells to put back;severe nausea; possible mouth and esophagus sores; hair loss; exhaustion; and living in semi-isolation for about four months. Well, that's why we focus on the end result. Focus too much on the bumps, and I'd have to go back to the social worker and tell her I'd changed my mind.



Throughout this process, I've often felt that other people were more worried about what I was going through than I was. Yes, it had its challenges, but they were manageable. Well, guess what.... Yeah. Beginning in about a week, that won't be quite the case.



We start with a massive dose of chemo aimed at killing the myeloma, which also will destroy much of my immune system. During my education on this part of it, the nurse was perfectly frank- “Some people become nauseous during this. With the dosage you're taking, you will absolutely be nauseous.” I love that openness. Look, I can handle most things when I know they're coming- becoming nauseous is bad enough. Becoming nauseous when you'd been hoping you wouldn't? Priceless. No, not priceless. I mean terrible. Sorry. Damn you Master Card.



Again, I won't bore you with the endless details. Suffice to say, I guess, that we'll be doing a lot of knocking down and building back up, followed by months of caring and feeding my new baby stem cells.



Since the stem cell transplant will finish killing off what might be left of my immune system, we have to be meticulous in avoiding infections. There are many, many rules and directions around this. Usually, I'm not too good at rules, following of, but even I get how important it is.



So, here we are on the brink of another big adventure. Am I ready? Kinda. Is Sheri ready? Kinda. In this situation, though, I think two “kindas” equals one “you bet.” So, in the immortal words of David Bowie: “Let's dance.”





Jim's note: Our daughters, Jennifer, Alison and Kristie, have established a site through Go Fund Me to allow people to make donations to help Sheri and I with the costs of fighting my cancer. If you would like to see photos of us and our family- and maybe even make a donation :)- visit www.gofundme.com, and enter my name or Finding the Pony in the search box.



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.”




Tuesday, April 8, 2014

Happiness is a warm puppy? Maybe


'Happiness is a warm puppy'

Peanuts

'Happiness is a warm gun'

John Lennon

Well I'm a runnin' down the road , tryin' to loosen my load, I've got seven women on my mind...

Wait a minute. That's the Eagles...That's not right. I'm runnin down the road... Oh right. I saw a sign, which happened to be in front of a church, that said “The chase for happiness is endless,” or words to that effect.

My initial reaction: well, that seems a little defeatist. What about life, liberty and the pursuit of happiness? What about all the beer commercials that promise we'll be happy if we just drink the right beer? And they don't call them Happy Meals for nothing, now do they?

I didn't think about it much at first, mainly because driving around here in the spring involves constant vigilance to avoid potholes that vary in size from “Now there's a real tire-shredder” to “Is that a motorcycle down there?”

Once I reached home safe and relatively sound, the thought came back to me. Could that be true? Maybe. But I'm happier now than I've been in a long, long time... possibly ever. So what's up with that?

Let's review. Looking back, there is no doubt that I was terrible at relationships. At the time, of course, I thought I was all that and more. The problem was this: in order for the relationship to work, and for me to be, therefore, happy, the other person had to change to fit what I wanted. Seriously. Also, to make any of the changes I wanted, they had to be able to read my mind because I wouldn't talk about it.

I guess it would be fair to say I was emotionally broken; which might actually be an understatement. I read that until you love yourself, you couldn't love someone else. I figured they meant other people. I just needed people to change.

Now, if you asked me what I wanted to be when I was a kid in Scotland, I didn't really know. My dad had worked for a short time driving a double-decker bus and that seemed like as good a thing to do as any. When we came to this country, the only job I wanted was as a rock and roll disc jockey. AM radio was king and I loved it. Cousin Brucie, Murray the K, Wolfman Jack... yeah baby. My Scottish accent was a drawback at the time, so I ditched it and got a job at a 1,000 watt radio station in the Fingerlakes region of New York.

I was fired from the radio station for a remark I made at the company Christmas party that, looking back on it, probably could have gone unsaid for all time. It was funny though. Even the people who subsequently fired me laughed.

After that, I really just worked at jobs that made me happy and went on to something else when they didn't. I guess I had a career in newspapers, because I kept going back to them after trying something different. I really loved newspaper work and I was good at it. But, it always seemed that there had to be something more. Being emotionally broken isn't for weenies, my friends.

As for money... I can honestly say that it just didn't matter that much. Right now it matterss because of my illness. I have to take some really expensive medications and, though we have pretty good insurance, it, too, is costly. We know we'll be alright, we just don't know how yet. Not much point in worrying about it.

“The chase for happiness is endless?” My own chase for it has hurt people because I thought my happiness was worth hurting people for. At one time I was a human do-ing, rather than a human be-ing. Any success was dismissed quickly because it didn't bring me what I was looking for. I had to keep do-ing because... well, there had to be something better. Right?

In the end, the solution was simple. Once I quit the chase, happiness found me. Corny, I know, but I think that's what the sign was referring to. It was by no means instantaneous, nor was it always easy. Simple and easy aren't synonyms after all. The biggest thing was becoming less self-centered and more honest with myself, especially about myself. It also meant discovering that I am responsible for my own happiness; no one else.

So, I choose to be happy. I have an incurable, but treatable, rare type of cancer. I have an incurable and even rarer, genetic disorder. I'm facing a stem cell transplant even my doctors tell me will be arduous. But all that will be true whether I'm happy or miserable. And in my experience, you meet much nicer people when you're happy.

Jim's note: Our daughters, Jennifer, Alison and Kristie, have established a site through Go Fund Me to allow people to make donations to help Sheri and I with the costs of fighting my cancer. If you would like to see photos of us and our family- and maybe even make a donation :)- visit www.gofundme.com, and enter my name or Finding the Pony in the search box.



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.”

























.

Wednesday, April 2, 2014

Ch-ch-ch-changes

I was walking from the kitchen to the living room the other night when I was struck with the thought:
“I will never go back to being the person I was before I was diagnosed with cancer.”

I'm not saying it's a great revelation. It's certainly no “Eureka!,” as Archimedes is supposed to have
yelled upon discovering the principal of displacement. It probably isn't even as grand as finding out that Doublemint gum is “Two... (clack) Two... (clack) two mints in one.”

Still, it gave me cause to pause. Too many things have happened in the past seven months for me to
have any chance at being the person formerly known as Jim Arnold. Well the name's the same, but you know what I mean.

First off- being struck with multiple myeloma. There seemed to be no rhyme or reason why it  happened. Maybe if I had smoked like my father and my sister Moira, developing lung cancer, while
still a shock, would have been not completely unexpected. Or if I had been a sun worshiper who
worked on my tan until my skin became a color you normally didn't find in nature, and I developed
skin cancer...

But, no, my cancer I have is rare, incurable, and only about 100,000 people in the country have it.

Then, on traveling to Boston to meet with my oncologist there, I find out I also have an even rarer
condition: a genetic disorder called chromosome deletion 17p. Normally a person's chromosome 17 has two bits sticking out of it, while mine has only one bit sticking out. I hope that I doesn't sound like a kid trying to answer a question from his biology teacher when he hasn't read the appropriate chapter. It's just how I've come to think of it. Suffice to say that the damage to the chromosome is serious and will reduce the effectiveness of my stem cell transplant.

I'm sure you understand when I say being struck with two rare condition changes a person. I'm certainly not as confident about my health after my system has delivered two huge surprises and that has made me jumpy around doctors. As I was completing my radiation treatment today, I learned my
radiology oncologist wanted to see me. Ro ro; that was something new. I immediately figured he
wanted to tell me my radiation treatments had gone horribly wrong and ask if, you know, I'd ever seen that movie about the 50-foot tall man. In actual fact, he just wanted to assure me everything looked good and I should be okay to have my transplant on schedule.

There have also been plenty of somewhat superficial changes. I can't carry as many grocery bags into the house at one time because I just don't have the strength There are days when I cannot drive myself
places because fatigue takes away the focus I need to safely drive. Since I broke my right collarbone, I'm not supposed to lift anything over two pounds with my right hand and arm. Normally, I'd blow that one off, but I have my own, personal Nurse Ratched watching and making sure I don't do something stupid... something else stupid. When it comes to my health, Sheri lets nothing slide.

I answer my phone now, when I can. That's big change for me. After working in customer service at a
credit card company for years, the last thing I wanted to do when I got home was take phone calls. So I didn't.

Now most of the calls are from the clinic, or the hospital, or the hospital in Boston, or one of our
medical insurance carriers, and on and on and on. For example, the phone rang at 8:01 am this
morning. It was my hospital here changing the time of my bone marrow biopsy the next day. I also got dietary instructions and directions to where the biopsy would be performed and what to do when I got there.

As the date of the transplant gets closer (May 2), things are really picking up speed. In addition to the
bone marrow biopsy, this week I had two radiation treatments, my regular chemotherapy, a bone survey (involving 21 x-rays) and another, solo, x-ray and an echocardiogram. All the results will be shipped to Boston to be reviewed with us when we go there April 9 for a number of review sessions. I get the feeling, since we meet with the oncologist last, that the idea is to be sure I'm in good shape, physically and mentally, to proceed with the transplant.

So, with Sheri's help, I take care of these things. That's good, right? But I used to love being
irresponsible. Not all the time, but once in a while. Seriously. Knowing the right thing to do but
refusing to do it? What's not to love about that?

When people ask me how many grandchildren I have, I usually get a hundred on that one- five. Names too- Jacob, Matthew, Emma, Sam, Josh. That's five, right? But ask me their ages and you get a lot of -ish. And the dates of their birthdays? Mnemonics help with Jacob, Matthew and Sam. Emma and Josh? -Ish. But we love them a lot and I always knew we would be proud to see them graduate from high school and move on to whatever was next. Now, frankly, I wonder if I will see any of their
graduations, except Jacob's which will be next year.

Please don't consider that a morbid thought, or even sad. It's part of what has changed me. Hundreds
and hundreds of cancer-related thoughts whirl around in my brain, edging out many other things that
used to share the ride. I don't spend any great amount of time thinking about any of them, positive or not. That just happens to be the one that popped out this time. It could just as easily have been: Sheri has never seen me without a beard and it seems the pre-transplant chemo will take care of that. If she looks at my face, she'll notice. What will she think? Ditto anyone in Maine who knows me. Is it sick to think that I'll look so crappy otherwise that she might not notice? Hey, a fella can hope, right?

I think the changes in me generally come down to the difference between being Jim Arnold, person,
and the person formerly known as Jim Arnold now James Arnold, cancer patient. Being the cancer
patient has let me change some to the things I didn't much care for in being Jim Arnold. And yet having been Jim Arnold, person, has added strength to my journey that wouldn't have been possible if I didn't have him to draw from.

And despite all the changes, I love the fact that the amalgamated me still loves with all his heart, finds a way to laugh through the darkest times, cries at adorable videos on YouTube, uses optimism as a stick to beat on cancer's crap, and knows enough to value the people around him who refuse to let him reject their love and support.
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.