Tuesday, May 27, 2014

Good thing we're all adults here


Here's an interesting thing... interesting in so many ways. I pour my heart into my writing about fighting cancer- the ups the downs, the challenges, all of it. So what has generated more fascination than anything else? Pigeons having sex outside my hospital room window.



Seriously. Emails, Facebook comments, personal comments... So what happened with the pigeons? I hate to tell you this, but I have no first-hand knowledge of what happened to the pigeons. They sure looked like they were about to have sex. But then the treatment for my cancer interfered with my observations somehow and when I was able to pay attention again, they were gone.



Oh- before you go getting all depressed and everything, one of my nurses told me that the man in the room next door had also been observing sex in the city and was able to confirm a successful coupling. You're welcome.



Now, let me tell you something else that happened that will surely divert you from your pigeon obsession, while at the same time putting pictures in your head you will regret. You may even have trouble sleeping at night. If you do- call me. I'm awake all the time anyway.



Part of the check-in procedure at the hospital is for a nurse to explain all the medical geegaws and doodads that are in your room and what they would be used for. You then get a tour of the pod where the nurses work. My intake nurse was very thorough and professional. Fine. I hear “blah blah blah masks, blah blah blah gloves, blah blah blah isolated.” Good. We seem to be on the same page. She also has a great sense of humor.



We return to the room where I will spend the next 17 days in air-purified isolation. She explains that the air filtration system in my room is much noisier than most. That's okay with me. It runs 24/7 and provided genuine white noise to keep out most of the sounds on the other side of the barbed wire, where freedom waited, thumbing its nose at me.



Anyway, the nurse continued to explain what's going, or will be going on. Again, absolutely no disrespect, but she might as well have been explaining about using my cushion as a flotation device. I was distracted and nervous. Suddenly, though, there was an almost indiscernible change in her tone. It wasn't much, but it got me to pay attention.



“One of the things we need to do quickly is takes swabs of your nose and your rectum.” At that point rectum seemed like such a big-boy word, but I continued to listen. “That way we know, if you get sick, whether or not it was something you brought in with you.”



Right. Cuts down on the finger-pointing later. Makes sense, let's swab away. Now, by this time in my treatment, I've become pretty okay with showing any of my body parts to any of the medical team, or even a casual observer if it brings them joy. The fact that most of the people I am showing my parts to are young women perhaps late-20s to mid-30s is neither here nor there. What the heck am I going to show them they haven't already seen? They're terrific nurses, for heaven's sake.



So. The nurse swabs my nose and before you could say, “My name is Jim and I'll be your patient this evening,” I've dropped my pants and underwear, and a long thin stick with a cotton swab on the end is up my butt and out and in its little carrying case.



“We'll being doing this again midweek,” my Saturday nurse said. Excellent. I got the routine set in my mind: nose swab, expose butt, stick stuck, pull up pants. Easy peasy.



A couple of days later a new nurse comes in, one who fits the same demographic. Time for my nose and rectum swabs. “Yes. I'm ready. Let's get it done.”



The nurse swabs my nose, I lay stomach down on the bed, butt exposed, feeling somewhat proud of myself for being such an adult about the whole thing. And before you could say. “My name is Jim and...”



But wait a minute. Something wasn't right. A cold breeze was blowing over my butt which seemed to have been hanging out, if you will, for a couple of seconds too long.



I was just about to say something when I heard a sweet, bemused, non-judgmental voice behind me say, “Oh. I was just going to give you the kit so you could do itself yourself the next time you went to the bathroom.”



Here's what went through my head in the next two seconds: 1) Give an explanation that is vaguely correct- “Darn these pajamas. They just won't stay up since I lost weight.” Lame; 2) Start singing the National Anthem as both a distraction and way to stand up and pull my pajamas up in one fell swoop. Probably not; 3) Tell the truth. “Actually the first nurse wanted to do it in the room so I thought I might save us some time.”



It was all very adult and stuff, but I did feel a little creepy. It became the source of some humor over my stay, sort of like Sheri saying that I looked like Uncle Fester from “The Addams Family,” once my hair fell out. Oh how we laughed!



So, I had my first post-transplant doctor visit and it went very well. All the numbers are where they should be and the side effects I'm having are exactly what was expected. The biggest thing is feeling nauseous and tired most of the time. Also, everything I eat tastes like wood shavings. Considering what I'm fighting and what I've already been through, that doesn't seem so bad.



I will admit, though, that not seeing the pigeon romance through to the end was something of a major disappointment. Wait. You don't suppose dropping my pants with the blinds open chased them away, 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, May 22, 2014

Invoke the Slaughter Rule? Hmmm. Not just yet


I've been going through this whole cancer treating process focusing, as much as possible, on simply getting through each day, one at a time, facing the challenges as they come up, and trying to find the funny in decidedly unfunny situations.



I think, by and large, that I've been successful. There have been plenty of days, plenty of specific parts of my treatment that were difficult to face and difficult to get through. But I have gotten through and moved on, getting ready for whatever comes next.



We came home the other day after almost a month in Boston. in which we took the final steps preparing for, going through, and beginning recovery from my bone marrow transplant. All of which happened and all of which we got through day by day.



But this was different in a way that took me completely by surprise. Yes, we got through each day and moved on to the next. The whole thing sucked, don't get me wrong. I was nauseous every day, and still am. I was so tired, but couldn't sleep and still can't. I went days without eating hardly anything. But, I knew I could endure anything for a day, which all I was really being asked to do. And I did.



It wasn't until we got home that I was able to look at the almost-30 days as a whole. It was.... a very difficult process to go through. Physically? Yeah, it was hard physically. Constant fatigue and nausea were difficult for me to endure. Mentally? Aye, there's the rub. I can't think of anything I've gone through that was a tougher mental battle than this.



When my Boston oncologist was first talking to me about a stem cell transplant, one of the things he said was that it was going to be hard to endure, on every level. He said there were going to be good days and bad days and days where I would want to give up. But, he added, as long as I was able to see each day as just one day, I would be very successful.



Both my daughters and my grandkids have played, and in some cases still play, youth-level sports. Regardless of what the particular sport may have been, in each they had the equivalent of a Slaughter Rule. I doubt that it was ever called that; more likely, good sportsmanship rule, or if we don't have a rule like this we're going to be here all night rule. The point was, of course, after you're being beaten badly enough, there's little left to learn. Your ass can only be kicked so bad, before it becomes abusive. So when one team got far enough ahead, they were usually ruled the winner and the game was called.



I confess there were times after my transplant that I wanted to invoke the Slaughter Rule. It's not that I wanted to give up, but my ass had been kicked enough. I was in the same room for 17 days, isolated from just about everyone. The masks the staff, Sheri, and later my daughter Alison and friend Donna, had to wear added to the feeling of being cut off.



Every day seemed endless, just like the one before it. It would begin around 6 am with a check of my vital signs. (The first of about half-a-dozen such checks throughout the day.) Then there'd be my early morning medication, followed by a sporadic stream of nurses, staff and members of my transplant team doing the same things and asking the same questions.



I had plenty of toys with me. I had my laptop, my Nook, my iPod and the hospital provided some sort of ersatz cable television. I had a terrific book Alison had given me for my birthdayabout Leonard Cohen, Jeff Buckley and the song “Hallelujah.” But none of it was much use. I simply couldn't focus long enough to become engaged with any of it.



I was given a variety of drugs to help me sleep and with the nausea, including low doses of morphine. I still couldn't sleep. After the two doses of chemo that killed off the remainder of my immune system, I had a difficult time maintaining a level of potassium in my system that would meet the doctors' standards. So there were many nights where the nurses had to administer bags of potassium by IV just about every hour.



God bless those nurses. They would creep into my room like ninjas in an effort to let me sleep, but I was invariably awake. There were times when they were able to stay and chat with me for a while, and those times were great. I was going to be awake anyway.



As the days ground on, surprisingly, invoking the Slaughter Rule become less of an option. Why? My wife and kids were there with me every day, in the room or by phone, encouraging and supporting. There were my friends and all of you: people I either don't know or barely know, who have been encouraging since day one.



Then there was my friend Cindy. I've never met her, but I don't need to. She is in a situation similar to mine, only about six months further down the road. Neither of us are crazy about using the phone, so we email a lot. When I was hardest on myself for not being strong enough, admiring her strength, she reminded me that she had been exactly where I was. The strength and courage I was seeing in her was because she had gotten through the things I was struggling with and come out the other side. She was also able to convince me that I would too.



As I looked back over the months I've had cancer, I realized that faith has allowed me to face my fears and that courage was the reward for having done so; faith always came first.



So, Sheri and I are home and loving it. If you see her, ask her about the Boston drivers and Boston traffic she had to fight, twice a day, every day. Just make sure there are no children nearby. I feel crappy a lot of the time. I still can't really sleep very well. Mentally, I feel like I could put my brain in a scratch and dent sale, but I continue to work on that as well.



I have my first doctor's appointment since leaving the hospital in a couple of days. It will be in Augusta, rather than Boston, back with my team there that has been with me since the beginning. Obviously, I'm hoping that everything is fine, but here's the truth: the thought of getting outside, taking a ride in the car and actually being around people who, except me, aren't wearing masks and gloves... pretty exciting, boy.



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. 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.”















Saturday, May 10, 2014

Huh. That didn't suck so bad II


The sun isn't yellow,
It's chicken.”




Bob Dylan


So, it's been just about a week since I entered the hospital, and what a week it's been.

Sunday and Monday I had the doses of chemotherapy that would completely destroy my immune system. Again, that is something you would think would register psychically, where you'd think, “Wow. So this is what it feels to be completely vulnerable to any sort of infection.?” Again, you'd be wrong. Other than a slight increase of nausea... bupkus.

Tuesday was what they call around here my new birthday. My stem cells were reintroduced to my system, through an IV drip. For such a major event in my life, it didn't seem like much. But, of course, it was. It really meant turning the corner and getting back to being healthier. I felt bad for my day nurse who had to stand- no sitting allowed- and study the IV... just in case, for over an hour. But all went well, and he finally got to sit down, I assume. No one here seems to sit down much, at least not that I get to see.

I am isolated, other than staff, and Sheri, who come in. They are always masked, so you see their eyes, forehead and hair. At times it looks like bank robbers left their convention early to avoid traffic. The last couple of days, I've been able to walk around the pod outside the door, as long as I wear gloves and a mask. Believe me, it's a lot more exciting than it sounds.

Let's see, what else has been going on.. Sheri finally buzzed off the rest of my hair and beard yesterday. It seems okay to me. I have to be careful, though, cause when I take my hand across my head to fix my hair, my hand goes flying off the back of my head. Even that's okay as long as Sheri isn't right behind me and gets a poke in the eye. I'll try to change the photo with my blog, and/or post it on Facebook, for those of you who watch “Hoarders” just so you can look around your house and say, “Hey. This isn't so bad.”

The two pigeons who have been hanging around outside my window for the past couple of days appear to be getting ready to fulfill their part of the “Birds do it, bees do it” equation. They are the only other living creatures I see on any sort of regular basis, so I'm quite happy for them. Hey, don't even think about judging me. If you were watching it on PBS you would be falling all over yourself to get to a phone to renew your subscription or make a pledge.

Right now the biggest enemy is boredom, which you probably could tell. There is a TV; I have my computer, Nook and iPod, but sometimes it's just hard to focus, let alone sit up and do something. Sheri comes every day, for a few hours, and its nice to have her here, but it leaves a lot of other hours The staff stays and talks if they have the time, but... I am getting a bit used to, and try to do little spurts of stuff and then rest.

I talk to my daughters Jennifer and Alison each day. I know it helps them to hear my voice and know that I really am doing quite well. I can write and text anything, but when they hear it in my voice, they know it's real, whatever “it” might be.

There are a couple of difficult stretches yet to come. My white blood cell count continues to drop, which is a good thing because it means the chemo is working, but it also means I will be really, really tired and have some other side issues to deal with, including a high temp. But the allergy team has already been in and determined the best antibiotic to knock down any fever and there are plenty of measures the staff can take to help counter other symptoms. I have really come to see what a chicken I can be around feeling sick. I hate it, but the anti-nausea medications really help.

Still, I feel better than I did, for now, and frankly, at this stage, that's more than good enough. We'll see what happens next. Again, I'm not sure when I would be able to write again, but it helps me a lot so I will do my best.

For now, I have some pigeon watching to do.

We wanted to continue 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. Even if you would just like to see photos of us and our family, please 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.”






Saturday, May 3, 2014

What a long, strange trip it's been




Well, here I am in 4B-31 of Brigham and Women's Hospital in Boston, Mass. Sheri's gone to our temporary home in Medford. It is virtually the first time we'll spend apart since I was diagnosed with multiple myeloma back in September of last year. It feels strange. But she doesn't have to be physically near for the strength she brings me to be present.



This is definitely one of those, “Well, how did I get here?” situations. I mean, on the Saturday of Labor Day weekend, 2013, I decided to do a little help with the gardening; something I am usually loath to do. Next thing I know I'm being attacked by wasps and eight months later I'm sitting in a hospital in Boston, preparing for a stem cell transplant. Whaaaat??



The twists and turns our path has taken in those eight months is remarkable, as are the people we have met. Fellow sufferers, doctors, nurses, hospital staff... You put it all together and it doesn't really seem like so much could have been packed into such a short amount of time. And yet, here I am.



No more tears; I don't need them. I'm losing my gorgeous hair, but my sparkling blue eyes remain sparkling blue, and the hair will grow back.



It just occurred to me, and I hope the metaphor is not too clunky, but it reminds me of almost every home improvement project I've eve been involved with. Mind you, home improvement projects are right up there with gardening in things I'm loath to do, not least of all because they always involve a lot of breaking down, stripping away and so on, so that after you've spent hours, days or weeks, on something, it looks so much worse that you find yourself wondering what the heck you were thinking in the first pace.



But then you start putting it back together and the dream s revived. The fresh paint looks and smells so great; the new wood is straight and strong; and so on. The project is a success.



Well, ain't that just been what's going on here with my cancer? We have spent all this time killing cancer cells and I've felt a little bit worse each day. There's been enough pain to question what the heck I was thinking.



But now, we start to put things back together again. The next two days will destroy the remaining cancer cells, as well as my immune system, unfortunately. But in three days my healthy stem cells are reintroduced and that's when we remember what the dream of the project was: my becoming so much healthier and stronger and returning to something approximating a normal life.



And as I sit here, getting all philosophical and resorting to the use of clanky metaphors, there's something else I can tell you, and I can tell it to you without reservation. From my experience, when I'm faced with something as big as this cancer is, I cannot deal with it by myself. My wife, kids, friends and medical staff have all been wonderful and incredibly supportive.



But you know what? None of them are here right now. All they bring to me every day, remains with me. But there are times I need just a little extra to contain my latest fear. Just a little dash of faith or hope, maybe, to get me through to morning.



For me, it happens to be God. I don't know where you will get yours, but you might want to give it some thought before you find yourself in the position of really needing it. It can be Buddha, Islam, it just has to be yours. I've known people who referred to their celestial navigator. I think it just has to be something you consider more powerful than any thing else in your life.



Anyway, I'm tired and I need to call it a night. I wanted to thank everyone one more time for your support and prayers This phase is, to me, like going to the dark side of the moon. You'll know that I'm there, and thinking of you all, but I won't be able to communicate for while. Remember, Sheri will be posting updates on Facebook, and probably some photos as well.



In the meantime: “God bless us, everyone!”



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. This week has also reminded Sheri and me how important your kind words, prayers and wishes have been . We couldn't have done this without you. 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.”





Thursday, May 1, 2014

Nobody doesn't love apheresis pieces

So, we've been at our friends' home just outside of Boston for a few days now. I'm not going to lie- a couple of those were among the worst since my cancer was diagnosed. The combination of harsh pain, stress, fatigue, fear of the unknown and Boston drivers communicating through some sort of car-horn code that was impossible for non-natives to understand, proved to be too much and I started acting like a person I did not recognize; not did I want to continue to be.


Fortunately, it only lasted a day, and what passes for normal around here these days quickly returned.


It pretty much began when we walked into the home friends were letting us use during our time here. The medicine that I had been taking to stimulate stem cell growth had been causing horrific pain in my spine and ribs all day and there was no real way to get any relief. It was... unpleasant.


So, we walked into this beautiful home that had been so graciously loaned to us, took one look around at all the lovely things that had made this a home, and... I promptly burst into tears. Not little ones, either. We're talking sobs. I'm okay with crying, but the feelings around it sucked.


And that was just the beginning. I thought of our friends' kindness and the support we have received from so many people- sobs. I thought of all that we had gone through and how much more we still had to face- sobs. I thought about the toll this was taking on my wife- sobs. There was a lot more sobbing, but the one thing that came as a complete surprise was how much I missed our home in China (Maine).


Since we left Scotland, it has been hard for me to consider anyplace I lived as a home; not like most people seem to, anyway. When we first came arrived in this country, we lived in nine places in four years, and continued to move every couple of years after that. It was so bad- and as God is my witness, this is true- that during my freshman year in college, my parents moved and didn't tell me! Seriously. I wouldn't kid about a thing like that; well, I would, but I'm not.


I managed to get a ride with someone who was headed that way, so I figured I would surprise my parents. Surprise! I arrived at what I thought was home at 2 am and woke a stranger who did eventually open the door. Surprise! He knew where they had gone, and I quickly tracked them down. Seems they were going to get around to telling me they'd moved. Sure.


With a history like that, then, it truly shocked me to react as I did. We were cut off from our comfort, our friends, from everything that had remained familiar to us in this strange new place called called cancer patient. It probably wouldn't have been so bad if we'd had any idea what we were about to face and where we were about to face it. We knew I was having a Hickman line put in and we were going to be harvesting sea monkeys, but what did that actually entail? No idea.


Putting the Hickman line in involved a surgical procedure to put, what feels to me, like a big, honking thing with tubes coming out of it, into my chest to be used to insert and extract fluids as necessary from my body for the foreseeable future. Okay, next.


The procedure for harvesting stem cells is actually called apheresis. I was hooked up to a pretty cool looking machine and my blood was passed through it, stem cells removed, and then my blood was put back. As we know, my medical knowledge is pretty much limited to what I learned from Marcus Welby, MD, back in the 70s. So once again, I figured I would feel the blood leaving and returning. Pretty cool, right? Nah. I felt nothing. I know, when's he going to learn, right?


Well, that's now quite right. I felt incredibly bored. I had to stay attached to the machine for seven hours. No walking around, no going to the bathroom. Nothing. Fortunately, the person who was conducting the process was wonderful. No surprise he was from Maine. He and Sheri really hit it off and it was nice to see Sheri being able to be comforted. We have a great picture of Sheri sleeping in a chair, covered with a blanket he had gotten and put over her. I'll bet that isn't in the “procedure” book, but it was an incredibly kind, thoughtful thing to do.


We were scheduled for up to four days for harvesting, but were done in two. We needed eight million cells, and ended up with 11.6 million by the end of the second day. Everybody was happy! It gives us two days to actually take our first deep breath in a long time. We have nothing to do and nowhere to be. What???? I hope we remember how to do that.


Every single thing that has been done to help fight my multiple myeloma and my chromosome deletion has brought sparkling results. I'll say again: I have no doubt that your prayers and best wishes have played a large part in those outcomes. I hope to be in touch one more time before I go under the knife...Oh. Wait a minute. There is no under the knife. My stem cells are reintroduced through an IV, presumably using my honking, big chest piece. Nevermind.





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. This week has also reminded Sheri and me how important your kind words, prayers and wishes have been . We couldn't have done this without you. 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.”