A Tale of Two Spleens

I have two spleens.

Cross my (one) heart and hope to die (poor choice of words?) if I'm lying, Two spleens. I've even seen them. At my surgeon's appointment, he was reviewing my latest CAT scan and showed them to me.

Looking at the scan, which showed the key parts from different angles, gave everything the appearance of lava lamps- gelatinous chunks breaking off and coming back together. I liked lava lamps for about an hour, back in the day. Now, if I'm unfortunate enough to run into one somewhere, I'll be reminded of my somewhat iffy insides. Great.

When I mentioned this in a Facebook post, which was admittedly cryptic- “I have two spleens. Just thought you should know. Some of you may not like having my kind around here”- some people thought that might be the source of my abdominal pain. It's not, and I apologize to my friends who worry so much for me. I just thought saying “I have two spleens” was funny.

It isn't as rare as you might think, by the way, having two spleens. About 10 percent of Americans have an extra. The extra spleen, though, is the same as what currently passes for a spare tire in most cars- it's much smaller and I don't think you'd want to depend on it for very long.

When I asked the nurse who gave me the news if it was unusual, she said, “You'd be surprised what we find inside people once we start looking.” And I don't think she meant leftover pieces from other operations, or bits of things people have swallowed by mistake.

Both spleens are healthy, and I hope they stay that way. Working with Medicare is a nightmare in the most normal of circumstances.. I can't imagine the horrors that having to differentiate between Spleen One and Spleen Two would generate.

I can see dealing with Medicare and spleens being similar to dealing with my insurance company when I had two car accidents, both my fault, within a short period of time. When I went into the insurance company office with a question, the clerk had to go to the back of the room for my file, and while back there she needed to shout to communicate.

“Is this the one where you went off the road and drove over a tree stump?” she yelled.

“No,” I said, using no more volume than I felt necessary. “This is where I hit the parked car with the door open.”

“Oh, right. And the door hit an old man who was standing behind the door and sent him spinning down a hill.?”

“Yeah. That would be the one.”

No one seems overly concerned with this whole two spleen thing. I guess I have given up so many bits over the years, that they figured it might even things out. I gave up my tonsils and adenoids when I was very young. I had an extra bone in my nose that I gave up when they fixed my deviated septum. (Feel free to laugh at that. Saying, “I have an extra bone in my nose” is almost as funny as saying “I have two spleens. Maybe funnier) I had a vasectomy. I also had some cartilage removed from my knee. And then there's the notorious chromosome deletion 17p, the missing piece of one of my chromosomes which makes dealing with cancer even more difficult.

By the way, the extra body parts are called supernumerary body parts. Well, I guess to be totally accurate, I would have to say my second, and any subsequent additional spleens, is called an accessory spleen. Mark Wahlberg has an extra nipple, as do two percent of people in the country. In 2006, a 24-year-old man from India checked himself into a New Dehli hospital to have his extra penis removed. Called diphallia or penile duplication, there have only been about 100 recorded cases. And all sorts of people report extra fingers, toes, even legs and heads. Wow.

And there is still no solution to my abdominal pain. I'll try to let you know when I know.

But, again, I find myself grateful that my particular medical issue could be a lot worse... a lot worse. And looking on the bright side: if I choose to vent my spleen over some issue, I'll always have another available for further venting.

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.”

Love does, sometimes, mean having to say you're sorry

Then there are times when I look across the room in which we happen to find ourselves, usually our living room. I'm sitting in the cliched old coot with cancer beige recliner which Sheri insisted I get last fall. As usual, she was right. So an old coot, suffering from cancer, sitting in a recliner is a cliché... Who cares? It's also comfortable as hell, which, I suppose, is why it has become a cliché.

My beautiful wife is sitting at the table, or on the sofa. The where isn't as important as the what. She is perusing Facebook catching up with her friends and reading clever things from people she barely knows. People argue about Facebook all the time; love or hate, devil's tool or political stump; and on and on. All I know is this: checking it on a regular basis gives my wife a great deal of fun and satisfaction and comfort. In the medical minefield our world has become, I love that Sheri gets as much pleasure from it as she does.

I love seeing her happy; hearing her laugh. She has plenty of reason not to, lord knows. This is not the first time she has had to go through the ordeal of someone she loves suffering from cancer. When her son Jason was 18 months old, he was diagnosed with neuroblastoma, a nasty cancer that had attached itself to the top of Jason's spine. It did go into remission, but came back when he was four years old. At that point, it was considered 99 percent fatal. Jason is now 37 and a true miracle.

So she knows there can be miracles, but she also knows there's years and years of checking to make sure it is really gone. The constant wondering if he's still okay.

So, if she wants to get comfort from Facebook, good for her.

There are days, though, usually when my pain is manifesting itself in ways that cause me to grimace, clutch at a particularly sore spot, or simply sigh with resignation. At those times if I happen to look over, I sometimes see the pain my wife is living with, which usually perks just under the surface. Her marvelous face shows fear, worry, concern, anger, sadness, distrust and deep love, all cemented together in a look that makes my heart hurt.

I want to get out of my old coot lounger and hunt down the person who has made my wife feel this way; who has taken her smiling, happy self and turned into a visage so sad, that it makes me want to scream and... and... make it stop. Make all that pain, in whatever manifestation, go away.

But, of course, I realize it is myself that is causing this. Me with my multiple myeloma. I love my wife and wouldn't allow anyone to hurt her, ever. And yet, day after day, she worries about me. She worries about the pain in my stomach; the ache in my bones; the nausea that comes, unannounced, without rhyme or reason; about all of it.

Love is an amazing thing. We've had so much happiness in our 21 years together, that it would seem selfish to talk to you about it. It would feel like bragging. But there is this dark side to it. When someone you love that much becomes ill...it takes on the feel of a bad joke; a prank. Hahahaha. Got you. I knew if I could get you to love that much. I could screw you in the end. Who would be saying those things? I don't know. Someone mean, though.

Why didn't we just go at this half-assed? I certainly have experience in those kinds of relationships. Why didn't I just do what I always did? We'd have our laughs, plenty of fun, our share of arguments, and after awhile, too long usually, she would have told me it was over and I would have said, “O.K.”

Then my having cancer would just be another post on Facebook to her; a little sad, perhaps, but nothing to cry over, at least not for long.

But, no. We both decided we were going to do it different this time. In the first few years, we had plenty of chances to call it quits. The arguments, the disappointments, so many times we could have cried uncle. But, no. Not this time. This time we decided we would work through all that and get to the heart of the matter and our bond became unbreakable.

It seemed like such a good idea at the time. And, for years, it's been wonderful. But then I look across the room from my cliched recliner and see that beautiful face saddened by what she knows about my illness and the pain it causes me.

But.... And it's a big but... She'll catch me looking sometimes and this amazing smile will come over her face. It's not faked. It's not “I was caught, so I must put on my brave face.” The smile is generated by 21 years of being together, through thick and thin; almost middle class and poor; big laughs and big tears. Twenty-one years of living life on life's terms and sharing every moment between us.

If incurable cancer is the price I have to pay for the wonder of the last 21 years with my wife, that's fine, I still believe I got the best part of that bargain.

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.”

I don't need to use any more brain. Trust me

Life is a carnival

Believe it nor not

Life is a carnival

Two bits a shot

The Band

OK. I'm back! Told you it wouldn't take long.

I believe that regardless of the type of cancer you may have, you also have to fight cancer of your thinking. I suppose that's true of almost any major illness, but cancer is what I have and cancer is what I feel I can talk about.

In less than a week, I've gone from I'm OK, to this is horrible, to I'm OK, and the only thing that has really changed is how I look at things. My multiple myeloma is no less incurable than it was, but that giant click you may have heard was my brain switching over to the positive side of things again.

Besides everything else, being negative is boring. You have to go over the same lamentable issues over and over because, we hope, you aren't adding new ones. Revisiting things that make you sad or unhappy, especially for the gazillionth time? Boring.

Of course, I have also been released from my home confinement and now can go out among the people again and they are glad (The Book of Jim 3:13). Well, maybe.

I was restricted from public areas for about four months. Four months! So, what do I do the first time I'm out? Within an hour, I've almost got into an argument with one person and was pretty rude to the person who stepped in to stop the argument before it got fully underway. In my defense... Well, I guess there is no defense. Condescension was in the air, though... just sayin'.

I'm actually driving again, by myself. I did drive down on our last trip to Boston, which was the first time I'd driven in the four months. That doesn't really count as a first drive, though, 'cause Sheri was working her imaginary brake and clutch pedals pretty hard on her side of the car, so I did have some help. Also, each time she braced herself against some part of the car, I realized something wasn't quite right. She drove home.

Again, on my first day out then, by myself, driving... Huh. Within minutes I saw someone pass another car even though they had a solid yellow line on their side; the same car cut another driver off; and plenty of the general chaos which comes with driving a car these days. Suffice to say, isolation didn't seem like such bad thing by the time I got home.

But I jest... Isolation is really difficult, not the least because it gives you way too much time to think. Here's an interesting thing that did come through the muck and suddenly became clear. For years, scientists have been lamenting that humans use only a small portion of their brains. And, get this, they say that like it's a bad thing. I don't know what percentage I use, but I can tell you this... it's more than enough.

If I was going to use the extra brain bits to find a cure for... say... multiple myeloma, I'd be all for it. Pile them on. However, my personal history tells me I would only use the overage to think more and nothing good can come of that. One of the things guaranteed to make Sheri cringe is if I say, “Hon. I was just thinking.” She doesn't always flee the room, but when she does... you don't want to be standing in her way.

And then there's the unidentified stomach pain. It's still unidentified and it still hurts, only now it hurts almost all the time. As already discussed, I've been probed and poked; I've stopped taking certain medicines and started taking some new ones. Nothing, except the pain continues to get worse. It is not excruciating pain by any means, but it does hurt and I want to know what it is We all do.

The latest attempt to find out what it is: I had another CAT scan this week. I don't know how many that means I've had, but (sarcasm alert) one of multiple myeloma's many gifts (bam!) is that you cannot be injected with dye to improve the contrast; you have to drink a liquid and you have to do it over the course of an hour. The one I had today wasn't as bad as some of the things I've had to drink, but, let's face it- there's no way a dye of any kind is going to taste good; not horrible is a success, and that's what we had today. Not horrible.

So, we're waiting for the results of the scan to see if they can tell us anything. This one was focused on my appendix which seems to be having some fluid issues, or not. I guess that's what the scan will tell us. Stay tuned!

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.”

Arnold hears a what!

It's like some horrid version of “Horton Hears a Who!”

Doctors describe multiple myeloma: It's incurable it's incurable it's incurable it's incurable it's incurable it's incurable.

Me: Huh?

Doctors: It's incurable it's incurable it's incurable it's incurable it's incurable it's incurable.

Me: Wait. What?

Doctors: It's incurable it's incurable it's incurable it's incurable it's incurable it's incurable.

Me: OMG!

At the first doctor's visit after my multiple myeloma had been diagnosed, just about 11 months ago, my oncologist told me it was incurable. In fact, it was the first word used to describe it.

Okay. Incurable. Got it. No cure on the way. Right.

Well, it turns out I didn't get it. No matter how many times my treatment team mentioned it; no matter how many times I used it to describe my cancer to people who asked; no matter how many times I've written it in this same space. I did not understand what incurable meant.

Before you get all up in my face about it, or all “Poor Jim, we knew. We could have told you”... I understood incurable, of course, but I didn't realize what it meant to me. In my defense, Sheri didn't get it either, and we're both smart enough about these things to be dangerous.

We were in Boston this week, to determine what my after-transplant treatment would be, and to try to find out what is causing all this stomach pain.

We had a lot of questions, but the biggest one was about whether or not my cancer was in remission. The doctor said, kindly, but professionally, “Multiple myeloma doesn't go into remission.” What? “Multiple myeloma doesn't go into remission.” What?

The explanation went on, likely because we looked so dumbstruck. “Well, remission means what?” Not a good time for a pop quiz, doc. “Gone, right?” Sure. “Well, myeloma cancer cells never go away. There are always going to be some present in your system...” waiting to strike... He didn't actually say the last part, but in my mind he didn't have to; in Sheri's either.

We then spent time talking about how well I was doing; how brilliant my blood work looked; how successful the transplant had been; how it seems we'd really knocked the cancer down to just a few cells... all of which is, obviously, wonderful, but...

I chose to write about this, by the way, when it was still raw to me. I know a lot of you really care about us and what is happening with my cancer. There's no need to worry. Outside of our thinking, nothing has really changed. Multiple myeloma has always been incurable and was always capable of coming back at any point. Most of you knew and understood that. It's still true.

I will process the new information as I always do, and deal with it in a positive fashion, giving it no more power than it deserves. Right now, though... I have stopped in mid-shovelful.

Part of me feels foolish for not realizing this sooner. It's a small part, though, because denial is my friend.

So, on the way home Sheri and I tried to figure out what was different this time; why we were finally able to understand what incurable meant to us. Part of it was that you hear these things when you're supposed to. Another part was an example he doctor gave us when we still seemed too thick to get the concept. He'd had a patient whose numbers were great, but within three months he was very ill. That took most of the “what?” away.

Multiple myeloma, then, will sit peacefully in my system, until it decides it doesn't want to do that anymore. Then, if it so chooses, it will come back. We won't know until it is already back, active, that it's decided to raise a little hell. Wow.

As I've thought about this, I realized that, at least in the way my brain looks at these things, there is one difference between incurable disease then and incurable disease now Before, we always had our weapon of mass destruction in hand. The stem cell transplant would knock the cancer down and we could get some peace of our own.

Well, we used that weapon and it did exactly what we were told it would do. It knocked the cancer down. It's our fault for counting on it to do more than was medically possible.

I'll continue to work at making this news right-sized, and get on with things. And, oh by the way, we still don't know what's causing the pain in my stomach. Next on the testing agenda: an ultra sound and a colonoscopy. Maybe this time the colonoscopy doctor will find my brains when he's poking around in there!

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.”