Monday, September 20, 2010

Notes From the Road

Note: I'm on a road trip with my mother out in the Midwest. Our first destination was Clinton, Iowa where my father was born and grew up.

As we drive east toward Chicago, I'm having a sense of Mission: Unaccomplished. One of the many reasons I wanted to visit Clinton was to see the graves of my great-grandmother, Mary, and her parents. Mary died in 1910 at the age of 46, leaving behind 7 children. The family had always said she died of a tapeworm. A recent source says her death certificate lists carcinoma as the cause of death. I'm confident that this gene mutation I live with can be traced back to her. It's hard to tell from which parent Mary inherited the mutation. Maybe neither. Maybe she was patient zero and it started with her.

Mary's mother Brigdet is said to be buried in the same cemetery. She died at the age of 55 from pneumonia, according to the death record at the Clinton County Historical Society. Mary's father, Thomas, is another story. He seems to have vanished somewhere around the turn of the century. He's listed in the City Directory as late as 1896 so he lived to be at least seventy. By 1898, he's no longer listed and his son-in-law John (Mary's husband) is listed at the same address where Thomas had lived for years. It's weird. We have several bloodlines of our family tree that go back three, four, some even five centuries; but this one, with the gene mutation, this runs cold after only three generations. Damn Irish!

I'm not really sure what I was going to do upon discovering the grave markers other than snap a picture. Maybe think about getting new ones. Or "talk" to the ground where their lifeless bones were interred and say, "What is this? Where did this come from? Is there anyone I can blame?" Maybe scream and rage and curse. Or even commune with their spirits and see what they had to say about the whole situation. I dunno . . . I just thought that once I saw the graves, I would somehow feel better. But I'll never know.

I did come across some information that is neat and new to me. My dad's cousin was clearing up some discrepancies and telling some stories that she heard growing up. According to my great uncle, Mary's eldest child, the family thought she died because, "She drank the poison to kill the tapeworm, but wouldn't drink the whiskey to kill the poison." Ah, the perils of early twentieth century medicine!

I also discovered a Death Announcement from 1921 for Mary's eldest brother who lived in Oklahoma at the time. It provided the towns of residence for the other siblings at the time, in addition to the married names of the two youngest sisters. This will be of great help in attempting to track down any descendants living who may, unknown to them, be living with a ticking time bomb in their DNA.

Other than that, I actually had a blast hanging out with my dad's gang from childhood. They were and still are a crazy bunch. I guess, they too, were thrilled to see me as well. I had only met one of them before when he flew out to attend my dad's funeral. I think they all see a little bit of their beloved Jim in me. His longest running friendship was with a guy he played with as a toddler, and kept in touch with over the span of his entire lifetime. This guy said to me at one point, "It's good to see ya! You're not as good as Jim, but you're OK!"

High Praise.

Wednesday, September 15, 2010

The Consequence of Hubris

WARNING: this post may make reference to bodily functions and other gross stuff for which polite society would once have shunned me. While it's not nearly as detailed and graphic as it could be, some readers may find parts of this to be in poor taste. So read on at your own risk.

Something happens at about two months post-gastrectomy. The sickness once thought to be overcome returns. The feelings left behind on our march to recovery creep back into daily life, hindering progress and bringing with them the seemingly abandoned thoughts of near despair.

I saw it in the blogs of many patients like myself. I winced as I read of days on end of dumping syndrome, gagging on goo and hours of dry heaves. Determined to avoid this regression, as I call it, I simply pretended it wouldn't happen to me.

But here I am just past the two month mark and I have experienced all three of the above offenses, to varying degrees, within the past week.
The newest sensation I have had the privilege of dealing with is an esophageal spasm. This is when food gets "stuck" in the esophagus. I don't know about others, but when this happens to me, it almost seems like the muscles are moving the food back up in reverse. Not forcefully as happens when vomiting, but very slowly. And painfully.

Now the first inclination of course is to panic. As in all other situations this does no good and is actually a hindrance to the desired objective. At first I started to swallow over and over in an attempt to get the food to go down. This is what causes the food to reverse direction and it becomes extremely painful. I've found that the best course of action is to stop, close my eyes, take a deep breath and . . . just wait. Gravity seems to overrule the internal body and the episode is soon over.

The first time this happened, I was with my husband in the car driving home from the mall. I had just taken the second-to-last bite of a chicken sandwich, which by this point was mostly roll. As stated before I panicked. And kept swallowing, which only exacerbated the problem. It took a long time to subside and Dan was asking me if I wanted him to pull over. It was not a decision I was in a frame of mind to make.

A few days later I was at home thankfully, but this time, for whatever reason, the spasms were causing me to salivate uncontrollably. Not wanting to swallow my saliva (as I naturally pictured myself drowning in my own saliva with a piece of soft pretzel in my esophagus), I ran to the bathroom to spit it out. It didn't turn into the "string of frothy goo" that has become the stuff of my nightmares, but it was pretty weird all the same. It ended with some humbling dry heaves, for good measure.

I noticed that both times, these spasms were triggered by me eating something bready. Also, I had been rushed and probably not realized that I was taking too big of bites. (Remember I must take dainty forkfuls know. For I am a lady). Armed with the knowledge of the trigger and how to properly let it run it's course, I'm confident that I can get through these episodes, if not avoid them altogether. Unless the cause is a stricture at the anastomosis which is a negative thing about which we choose not to think. I'm not even providing links. So let's put that out of our minds, okay?

Dumping syndrome. Ugh. This ranges from mild nausea, cramping or dizziness to sitting-on-the-toilet-all-day detestable. The reality with this is that it's almost 100% avoidable. As long as one eats a small amount of food, takes small bites, chews thoroughly and avoids sugar, the chance of this happening is slim to none, barring other complications' which we again choose not to think about. But when you scarf down a bowl of chicken soup, then chomp a bunch of crackers with chunks of cheddar cheese and follow it up with a piece of ice cream cake the size of a brick, well, let's just say you better grab the crossword book AND the Sudoku book and you'll be wishing you had one of those somewhat creepy padded toilet seats that you never did quite understand. Until this very moment. And don't even think about getting up. Hahahaha, you think you're finished? Yeah, ok, but you won't get more than five steps before you realize just how wrong you are.

What has interested me is how this "two month phenomenon" is so prevalent among TG patients. The only answer I've come up with as that we start getting comfortable again. We start thinking our condition no longer causes us to go about our daily lives differently than we had prior to our surgery. We wake up some days and it takes a while for us to remember that we don't have our stomachs anymore. We start falling into old habits like inhaling food, shoving as much as we can in our mouths, because we are in such a rush. We are running errands and shopping. We're back in the gym and practicing yoga. We are going to work and attending parties. All of the parts our lives that were interrupted and thrown out of whack the day we checked in to the hospital for surgery, all of that is returning to normal. And we lose sight of the fact that our bodies are no longer normal. The way we both ingest and burn the fuel that our physical bodies require to function has been radically altered. We have to slow down. There is nothing normal about not having a stomach. This is the point at which we understand the need to strive for the New Normal.

I've heard of this "new normal," read about it, talked about it, known about it. Now for the first time I can feel it and it's quite humbling. On one hand, it stinks to be in the one-step-back phase after so many steps forward. But I now think about it in terms of another bridge to cross. I'm almost over it; and learning more about my new normal everyday.

My ability to stay on track and eat mindfully and intelligently (easy on the ice cream!) will be tested over the next ten days. I've decided to join my mother on part of her annual autumnal Traipsing-About-the-Midwest excursion. We'll be in and around Clinton Iowa, Chicago and Milwaukee. I will have to be smart about all the eating on the run and dining out that comes with such a nomadic existence. Especially since there's no toilet in the Hybrid! Ciao folks, I'll try to post from the road.