Wednesday, June 25, 2014

I was just thinking...

So, I was sitting out on our back deck today enjoying being outside without a mask.

The weather was cool, but sunny. The birds were making a delightful racket. The grass looked wonderful, with no dandelions, thanks to the neighbor who is mowing our yard this summer.

My recovery is coming along nicely, thank you. I don't have a clinic appointment June 27th, so I can enjoy where I am right now. If there is to be bad news, which seems unlikely, but you never know, I'm days away from hearing it.

There I was feeling quite mellow, thank you very much, when I used the peace and quiet to start thinking about... shoes. I'm not kidding. I didn't think about the wonder of nature; how grateful I am for modern medicine and the medical people who are taking care of me. My mind didn't turn to thoughts of friends, or gratitude for the abundance before me. No. I started thinking about shoes.

Obviously, it could have been worse, this whole random thinking thing. I could have started wondering why corn is so hard for humans to digest; will the circle truly remain unbroken? why people put unsharpened pencils, eraser side up, in their pen and pencil holders. Without a point, there's no... well, point.

I must say, at first it did not seem completely outrageous that this off-road random thinking thing could have been a side effect of one of my new medications. One of the ones I will likely be taking for the rest of my life, lists 63 possible side effects, many, forgive me if I seem crude, having to do with what's happening with my... umm... well... uhhh... s-t-o-o-l. None of the side effects, though, seem to involve thinking or how you go about it.

It seems odd that I would even consider shoes. I don't normally. In recent years, not counting the pair of slippers I've had for over 10 years, I've never owned more than four pairs of footwear at one time: two pair for everyday, a pair of sneakers and a pair of winter boots. That's it. Sometimes I've even gotten by with one pair of everyday shoes.

My wife doesn't have many pairs of shoes, more than me, but at least hers seem to be of different types rather than, say, eight pairs of pumps in different colors. I have friends who love buying shoes, having shoes, coveting shoes; at the risk of contributing to a cliché, they are all women. They don't seem to have shoes in Imelda Marcos numbers, but they do seem to have enough so that they never have to worry about going shoeless. They do, though, do seem to be concerned about not having the right shoes to wear at any given time.

Back in the day, I got one pair of shoes at the beginning of the school year and was darned happy to have them. When walking to school, two miles uphill both ways, with snow even in May, if something on them broke or wore out, my dad just fixed them, or my mother did if she got tired of waiting for my dad to do it.

They would put on new soles and heels, but for anything more complicated we took them to the cobbler. Seriously. The cobbler. No elves, just a guy who look like he'd inhaled a lot of glue fumes in his time. He'd take the shoes, fill out a ticket, and give you the stub. I must say, I loved the smell of that place. No, not because of the glue but because of all that leather. Picking up shoes from the cobbler was one of the few chores I had as a kid I didn't complain about.

My Kilbirnie grandfather actually had a cobbler's last (if you just wondered, last what?, I'm surely showing my age. Oh well, sue me.) though I never saw anyone use it, except maybe to polish their shoes. Sheri assures me people still polish their shoes. I do have some tins of shoe polish somewhere, but whenever they resurface, and I twist that annoying little thing on the side that lifts the lid up, the polish inside is cracked and dry and unusable. Well, it was never the right color anyway. Usually oxblood. As a kid, my mother would sometimes give me oxtail soup. I was always surprised it didn't taste like shoe polish.

Does it bother me that people spend so much money on so many shoes? Why on earth would it; not my feet, not my shoes, not my money. Or, as I saw on Facebook the other day, “Not my circus. Not my monkeys.” Certainly, if the shoe buyers were thinking about shoes and writing about it all, it would be far more interesting than what anything I could write.. I mean, I have a pair of sneakers; they're... sneakery. I couldn't even tell you what color my winter boots are; green, if I had to guess. One pair of my everyday shoes is light brown and the other is dark brown. Not exactly fascinating.

I guess the path my thinking has been taking isn't actually a side effect of any of the medicines I'm taking. In truth it would have been okay if it was. Certainly better than red skin lesions, often with a purple center, or even large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or sex organs, which are among the 63 listed for the one drug. Yikes.

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 19, 2014

At this rate, I could make the dean's list

Well, look who got another A. Did you study this time, you might ask. Look, I would answer, I didn't flunk out of college twice before finally graduating by studying. Though back-to-back A's may confuse those who repeatedly told me I could really become something if I only applied myself. Oh... Wait a minute. Ummm. They've all passed away. Never mind.

We returned to Boston's Dana Farber Cancer Institute this week for the first time since my transplant. My weekly check-ups had been done here in Augusta, but the folks at Dana Farber, naturally, wanted to take a look for themselves.

Again, my blood work numbers brought raves, even receiving an A from the nurse practitioner who saw me on this visit (I heard she never gives A+s. I made that up.) She identified no worries, as everything seemed to be where it was supposed to be.

We again asked about the myeloma and whether it was in remission She said there was no way to really tell at this point. We would need to wait for the 100-day check-up, when they will actually measure the proteins that tell the story. The appointment for that bit of news is Aug. 4. It's probably a measure of how far I've come that the wait doesn't bother me. After all, the story will be what it will be. My goal, in the meantime, is to enjoy each day as best I can, just as it has been for the rest of this journey.

Some things have changed since my transplant.

First, visitors to the house no longer need to wear a mask and gloves, though on the other hand, the staff doesn't want me to have too many visitors, especially at one time.

Most of the diet restrictions have been lifted, though some will remain in place until the 100-day mark, and some even for a year.

I no longer have to wear a mask when I'm sitting outside at home, unless someone nearby is mowing, or chopping down trees. In an interesting piece of timing, only last week the power company, I believe, came down our fire road and cleared out a bunch of trees to protect power lines; considerable chipping was also performed; exactly the sort of thing I think I'm supposed to avoid, so it's good that was done and out of the way.

I still cannot go amongst crowds of people (reading that back, it sounds very Jesus-y, somehow. Sorry.), not even small ones. So, I'll remain somewhat isolated until that decision is looked at again on Aug. 4.

It's funny that I keep trying to “neaten up” my cancer. It's like collecting all the cards after game of gin rummy, or pinochle, or any other card game. You drag them all to you, push them together into a reasonable facsimile of a stack, and then you tap the edges on the table so that you have a nice, neat deck to play the next hand.

One of the reasons for writing and recording the journey, was to be able to look back and see where I was at any given point. Let's face it- our memories aren't really reliable. One of the first times Sheri met my mother, and after the two of them had spent some time together without me in the room, Sheri said my mother told her many of the same stories I had already told her. The difference was that in my case each story was of some horror my mother had perpetrated, while, with exactly the same story, my mother talked about these wonderful things we did together. Seriously.
So, having written so much down about what was happening, and how I felt, it's hard to put the deck back together in a nice, neat useable form, no matter how often I tap the edges.

There have been so many big moments, so many seeming turning points, that my memory would probably insist on saying, “I didn't make a big deal of that;” or, “I thought I handled that really well;” or who knows how many distortions of what happened.

But, I wrote it down. There are no shades of gray in black and white baby!

As each “big” event- my first visit to determine what state my cancer was in, beginning treatment, finding out if the treatment was working, beginning preparations for my stem cell transplant, the cell harvesting, the transplant itself- was met and dealt with, I tried to gather the cards and take some time before the next deal came along.

This was especially true after the transplant. My future treatment seemed to be a long journey, with no particularly notable stops; nice and neat. Well, no. Now there's this 100-day thing, and common sense tells me that there will be plenty to deal with that one cannot foresee.

I have no doubt that the whole “neat” thing has to do with trying to exercise some control in a situation where I have practically none. The only thing I really have much say in is my attitude. You all have helped me tremendously as far as that goes. I guess as long as you continue to help, I will, as the English are so fond of saying, “be able to keep my pecker up!”

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 13, 2014

Arnold girls dish: “The worst thing my dad ever did to me.”

With another Father's Day approaching, or come and gone depending on when you read this, I can't help but reflect, especially this year, on being a father, for better or worse. That sort of thing can be a slippery slope, of course, but what are you going to do? The brain goes where the brain goes. For example...

When my daughters visited earlier this year, we had a terrific time. We remembered old stories, created new memories- this time including Sheri who hadn't come into our lives when the girls were younger- and laughed a lot. I think it was the perfect tonic for all of us. Yes, we addressed my illnesses, but, since that is only a part of what our lives are today, it was given due attention, but kept right-sized.

Interestingly enough, what didn't come up was “The worst thing my dad ever did to me,” probably because it lodges firmer in my mind than it does in theirs.

The whole “worst thing” began when Jennifer was a junior (I think) in college, majoring in theater and psychology. Interesting combination, right” But my best friend in high school set the bar very high for interesting combinations. He was brilliant. He got one question wrong on his SATs and got through the University of North Carolina with flying colors in just three years. His majors? Spanish and religion. He once observed to me: “If the Spanish Inquisition ever returns, I'll be in high demand. Otherwise...”

But, back to Jennifer. At the time, I was the artistic director of a new plays program for a Syracuse theater company. My co-director chose the scripts and arranged for the playwrights to be at staged readings where I would have provided the actors. On one occasion. I arranged for Jennifer and a number of her theater friends to provide the talent.

Since the school was about 30 miles from Syracuse, I drove up to get them and bring them to the reading. On the way down, the other students started talking about their parents and each had a “worst thing my parents ever did to me” segment. Now, I wasn't loving this because, really,;what could I do but ask Jennifer for her contribution.

I confess... the speed with which she came up with her answer was disconcerting. Allow me to offer it here, some paraphrasing is inevitable; it was close to 25 yeas ago, after all. “Oh I know exactly what it was. (I imagined some of the things I thought were terrible and braced myself.) I was about ten and Alison (her sister, who was around eight)) hit me in the eye with a rubber band and I came to you to complain about it. Knowing how you were, I had all the evidence I needed. I had a red mark over my eye, I had the rubber band in my hands. And do you know what you said? (I assumed it was a rhetorical question and just waited.) 'Tell her not to do it again.' Tell her not to do it again? I will never forgive you for that! Never.”

Really? That's the worst thing you remember me doing to you, I thought. Wow, I also thought. Of course, I had no recollection of the “incident.” My guess it was a Sunday night and, if it had been a typical weekend, the two of them had been at each others throats for much of it. I was tired. More to the point, I was tired of them and so my answer would have made perfect sense... to me.

Now Alison had never actually formalized “The worst thing dad ever did to me,” but she didn't have to. We both know what it is.

First, though, you have to realize that Alison is one of the most kind-hearted people I know. Yes, she's my daughter, but I truly believe that. Yet, she also has a mouth on her... She just says things that remind me so much of me that I can't help but feel at least a little responsible. I remember a Saturday morning, 7 am.-ish, when all I wanted to do was go back to sleep. But no, I hear Alison, about five, say to her older and taller sister, “How'd you like a nice Hawaiian Punch? Would that be good? Right in your face.” Since she very well might have meant it, I needed to get up and begin the weekend's refereeing.

But the “worst thing.?” The two of them were old enough that their mother Janice and I could go out for the night and leave them without a babysitter. We told them they could watch TV, but specifically told them they could not watch “Friday the 13th” and they had to turn it off by 10 pm. Good enough.

We got home earlier than anticipated, but still after 10 p.m., and entered the house without them hearing us. They were watching the small black and white TV in one of their rooms and we heard them debating whether or not they should finish watching “Friday the 13th.” Yeah. The movie that should not be watched. Jennifer, always the one (at least at that age) who believed in following the rules and staying out of trouble, said they should stop, otherwise mom and dad would feel the TV was still warm and they'd get in trouble.

Alison- remember I told you about her mouth? Her response was “They're too stupid to feel the back of the TV. Quit worrying.” Yeah again. She said it; we heard it. They still didn't know we were in the house.

So, I went to the kitchen and got this horrific carving knife... just like the kind they used in the movie. Our stairs made a 90 degree, left-hand turn about halfway up, so I took the knife and stood on the lower level and waited... because they were going to have to come down to get ready for bed at some point.

Sure enough, Alison starts to come downstairs and just as she was about to make the turn, I put the knife around the corner where she couldn't help but see it, but where it couldn't actually stab her. OMG. Such screaming and, I think, tears. Did I feel bad? Nah. It was great. Hey, she started it. Too stupid? How do you like me now? And let's not clutter this with the she was a child and I was an adult argument. It was one small victory for the adults in an endless sea of defeats. Cut me some slack.

The thing about those two girls that continues to baffle me every day is how much they love me. Not just that they love me... the Bible tells them they have to do that, and Jennifer is a pastor's wife after all. But how much they love me.

If you had told me, heading into that visit, that the days would have been filled with love and laughter, and that multiple myeloma would have been present and accounted for, but right sized? Hey, I'm one of the ones who was “too stupid to feel the back of the TV.” Remember?

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, June 10, 2014

Look who got an A+

We had another positive clinic visit this week.

I actually got an A-plus from the doctor for the way my blood work has progressed. That's right A-plus, and I didn't even study.

The subject of remission finally came up. I had been reluctant to ask, just in case. I mean, not knowing was better than being told I wasn't in remission. It reminded me of the last time I was out of work. Whenever I had an interview, I dragged my feet on following up to see if I got the job. As long as I didn't know, I had hope, and in the second year of being unemployed, hope was hard to come by. The more the rejections piled up, the longer it took me to do the follow-up calls.

The doctor here felt the blood work showed amazingly quick progress. He did, though, point out that there are other aspects of the multiple myeloma that he wasn't prepared to address. Those would have to wait until we go back to Dana Farber in Boston next week. Fair enough. We'll take the successes we have and drag them along with us to face the next bits.

We had a revelation while we were at the Alfond this week: We don't really have any idea how to deal with processes involved in my getting healthier. I had been sick and getting sicker long enough that we knew so many of the medicines I took, the procedures to be done, and so on, that we were able to address it all pretty easily.

But now, so much has changed. It sort of ties into what I was saying recently about not having specific tasks ahead of us to get through. Now the treatment plan is in something of a state of flux. There are nutrition restrictions; when can they be lifted? There are medicines to take until a certain point in my recovery; when is that point? I have to avoid crowded places and anyone who visits me in our home has to wear a mask and gloves; how much longer before each of those restrictions can be lifted?

Another thing that has popped up takes me back to when I was first sick. I didn't know what my cancer was going to do; what is was going to feel like. So each little pain, each physical anomaly caused me to wonder if that was because of the cancer. The trouble with the speculation at that point was that I'd never paid much attention to my body, so in most cases I couldn't tell if something was always like that, or was it something new that could be cancer-related.

Now, I find that speculation has been turned on its ear. I know to a great extent what the cancer feels like, though virtually nothing is certain.

For example, after mentioning recently that I was pain free for the first time since I got sick, the pain in my ribs, which had previously been my constant companion since day one, returned. Currently the pain is dull, except for when I probe with my fingers to try to determine the extent of the problem. Then it hurts a lot, reminding me of course of the old vaudeville joke. A man goes to his doctor, who asks the man what's wrong. He raises his arm above his head and says, “Doctor. It hurts when I do this.” The doctor wastes no time telling him, “Don't do that.”

Rib pain hasn't always meant something bad. At first, it usually meant the myeloma has caused some damage which brought on pain. But as I gave myself injections designed to build up my stem cells prior to the transplant, I had the worst pain of all as my bones, literally, became crowded as healthy cells fought for room with the cancer cells.

Good pain, if you will, was also the result of an intravenous bone densifier that I was taking, as well as my white blood cell count improving and fighting for space.

When I brought it up at my appointment, my doctor, who has always told me what was really going on, admitted that he wasn't sure. He allowed that it could have been ay number of things, all to do with the effects of the transplant or some other aspect of treatment. He wasn't too worried about it because almost any issues would have shown up in the blood tests. So, I don't worry about it either. So, there.

Continuing to heal will obviously have its own challenges, its own moments. And that's okay. The journey continues but I like the scenery better on this new road I'm own.

The next challenge is Sheri reacquainting herself with driving in Boston. She's been practicing being unthoughtful to other drivers and, of course, she has been pounding the horn, regardless of what the circumstance might be; some days before we even get out of our own driveway.

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, June 3, 2014

No party necessary; thanks anyway

So, my stem cell transplant just turned a month old.

I thought about having a party, but I'm not supposed to be around large numbers of people. I also can't eat products from a bakery, so we probably wouldn't have had a cake. Soft serve and hand packed ice cream are also on my don't list; in the case of both of those, they're not allowed for a year.

We wouldn't have had a clown because I hate clowns and it might have brought about a downturn in my health. Besides, you invite one and they show up in one of their little cars... the next thing you know you're up to your broken clavicle in the damn things. I don't think so.

We could have had a pony, I suppose, to go along with the name of my column, but I won't be allowed to be around animals for a few more months.

But, hey, who cares. No, seriously- who cares. So much has happened in the last nine months, so many highs and lows, that to be doing so well so soon after the transplant is all I need to be happy. I do like soft serve ice cream, though.

Anyway, I suppose it's only natural to look back. After all, the transplant was the source of so much worry, mystery and hope, to be a month past it after all the time spent anticipating it... it just seems like a big deal.

Well, if we throw the last nine months against the wall, what sticks?

I'm writing again, something I really didn't think I would ever get back to. Even when I was working as a copy editor at the Kennebec Journal/Morning Sentinel, it never occurred to me to ask if I could write for the papers.

As I've noted before, the decision to start blogging about being ill wasn't an easy one to make, and yet it was probably inevitable. I did not anticipate it appearing in the newspapers on a weekly basis, or in the newspapers back in New York. And I had no idea the impact it would have on others. When people tell me it helps them cope with whatever they might be going through... I have no idea what to say. So I say “Thank you.” but I mean so much more.

I have more friends on Facebook than I ever thought would be possible. Odd as it may seem, there are quite a few of them I don't actually know. I get friend requests on a pretty regular basis. Most of them are friends of my wife, my kids, or of other friends. But a bunch of them are people I don't know, or don't remember, whom I assume are interested in following my blog and know that having access to my Facebook page is the best way to do it.

I've learned so much about medical procedures and medicines, that my doctors and nurses no longer have to talk really, really slowly and use small words, while pointing at pictures. One of the tricks was realizing that medicines can have more than one name. Instead of looking lost when asked if I'm taking such and such a medicine that doesn't sound remotely familiar, I can ask what else it might be called. If I still don't get it, I chalk it up to chemo brain and ask them to talk slower, use smaller words, and ask if they have any pictures that might help.

For the first time since I injured me “bee” rib on the Saturday of last year's Labor Day weekend, I am free of pain. The pain went out with a bang just before my stem cell harvest. The drug that was designed to encourage my sea monkeys worked really well, and my bone marrow became packed with healthy and cancerous cells. It really hurt. But once the millions of healthy cells were harvested, the pain went away and it's stayed away.

I have plenty of side effects that I don't love- nausea, fatigue, on again/off again appetite- but nothing horrible, though there are days.

I have consistently been exposed to the goodness in people. Back in the early seventies, I was president of a volunteer group that helped run a teen center in the town where we lived. I was talking to one of the young counselors, who was actually about the same age as I was at the time, and he told me- “Wow you really are a cynic. So many people pretend to be, but you really are.” True enough at the time, I guess. But people's kindness towards me has been so consistent and come from so many different areas of my life, that I can't help but accept it as real and genuine. I tried to scoff, but I am now scoff-less. I thank God for that kindness every day.

I do struggle with “What's next?” From the day my doctor told me I had cancer, a line of challenges lay before me like the hurdles in a race at a track meet. There was always another hurdle to get over, with all the anticipation and anxiety involved in it. But there are no longer visible hurdles. Certainly the work isn't done, but it's of a more general nature: “Keep doing what you're doing”; “Make sure you're following you're aftercare regimen”; “Let us know if anything seems wrong, especially if your temperature goes above 100.5.”

Those aren't things you can jump over; you just live with them. Obviously, the goal is to get back to something resembling good health But since multiple myeloma is incurable at this point, it's hard to be sure what good health even looks lie.

I know that sounds negative, but I don't mean it to be. There are so many realities to be faced as part of this journey, that is just one more. It doesn't have a value of good or bad; it's just something to face and find the funny in.

On the one-month anniversary of my stem cell transplant, I find myself more grateful than ever; more determined to wring as much out of every day as I can, even though sometimes that isn't much. The periodic fear that I felt is absent; there's nothing left to fear. I have work to do. But I know what it is and I know what the result will be.

It feels like I might even be getting closer to finding the pony.

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.”