It’s been a really, really long time. I know it. The lapse wasn’t intentional; there have been a few pretty big things that have happened fairly recently that contributed to my nonexistence in the past six months.
Let’s see…after a couple of months of contemplation, I decided to accept a promotion at work, which moved me from my three day per week role into a full-time Marketing Manager position, which I was happy about. It took a good bit of time for me to decide if the move was right based on the needs (demands) of my body, but I figured it was worth a shot, particularly because it has come with some pretty incredible health benefits. My annual deductible has now gone from $10,000 per year (which I have met the last three years by summertime) to $100. For the year. It’s insane. Almost too good to be true. I’ve been full time now for a month, and though my body is still playing catch up and reminding me that I can’t ignore its demands, things are working out okay. I’ve been pretty strict on maintaining my exercise regimen and eating regularly, which I’m sure is helping, and it’s great that my work week is no more than 45 hours, which is a complete 180 from my days in hotel operations.
Of course, I’ve still been kept busy with my every six to eight week visits to the hospital for the continued obstructions that I’ve now been dealing with regularly for the last three years. That still sucks, but I made an important decision over the summer that allowed me to regain at least some control over the amount of pain and bullshit I would have to endure with each obstruction. It had been nearly eight years since my port had been put in, and it was starting to act finicky when it was accessed. More often than not, blood returns were hard to get, and I’d find myself contorting into all sorts of weird positions just to get the damn thing to put out a little blood so my medications could be administered, and several times my best attempts failed, and I was faced with dozens of IV sticks to my hands and arms as the nurses tried to find a working vein. That alone is bad enough when you’re going in for an iron infusion or something, but in the ER when you needed pain and nausea meds, like, yesterday, and you’re head’s spinning and you just want to burn the place to the ground, it’s a special form of hell. These ER visits were happening way too frequently, and almost every time a CAT scan was ordered, at which point the nurse would tell me that my port couldn’t be used for the contrast since it wasn’t a power port. I knew this, of course, but it didn’t make me argue any less. Then they’d have to dig for a vein in my arm that doesn’t exist, I’d get angry, they’d get frustrated…it was bad.
So I decided it was time to take back some control over what I could. Now, I couldn’t control the fact that what remained of my digestive system insisted on functioning like a poorly designed European toilet, but I knew I could make the hospital visits a bit more bearable. I made an appointment with my surgeon and laid all the cards on the table for him during our visit. His first comment upon walking in the door was, “Wow, you’ve been in the hospital a lot”. Yes, yes I had. I told him that I understood why he didn’t want to do another surgery to remove the scar tissue at this point due to my ‘hostile abdomen’, but that I needed to find a way to find some quality of life dealing with all of the repeat hospital visits. I told him about the temperamental nature of my port, and when I told him how old it was and that it wasn’t a power port (which is a newer version they now install that is capable of supporting the high pressure needed to push contrast solution through the line for CAT scans, etc) he looked baffled. He told me we needed to fix that right away, so at the very least, I could be assured that I wouldn’t have to fight with the doctors and nurses during each visit when they were trying to (unsuccessfully) put in an IV line. I felt relieved that he understood, and made the appointment for the surgery to remove my existing port and install the new one in mid-June.
When I woke up, the new port was now on the opposite side of my chest and higher up toward my collarbone than the old one had been, making it a bit easier to access and get a blood return from. I had two more scars, sure, but let’s be honest – those are the least of my concerns. It’s kind of like that scene from The Princess Bride just before Inigo Montoya kills the Six-Fingered Man. Remember how he stabs him with the sword in each shoulder? It kind of looks like that. I took an online poll with a picture to see what people thought the best story would be for my new battle scars, being that I tell most onlookers who stare at my scar-covered abdomen that it was from a shark bite. We decided to go with the story that I was impaled while running with the bulls in Pamplona.
My hospital visits since then have been much better. I’ve had no issues getting blood returns from the new port, and now there’s no need for an IV to run the contrast through for the CAT scan – everything just goes right through the port. It’s little things like that which make living with this disease just a little more bearable.
The other main thing that is a recent development in the last six months is something that I’d never thought I’d ever say. I’ve become a runner. Had you told me this six months ago, I would have called you nuts, among a few other names which I cannot list here. I’m not exactly built for running. My boobs are huge, my legs are short, and the only places I’ve run to in the past have been the bathroom or towards a taco truck. It’s just a fact. I’ve always been fond of a good workout, but I needed something different than the usual gym environment and circuit training I had been doing. I was frustrated with my body and what it couldn’t do, and needed regular alone time to just zone out and not think about my limitations or my frustrations. I’d tried traditional meditation in the past and failed miserably. How in the fuck am I supposed to think about nothing? Meditation infuriates me. No, that wouldn’t work. So I decided one day to start that Couch to 5K program, thinking that I could use that as a goal to work toward so I could look at my body in a different way.
Of course, I started this in June in Texas, so I spent the entire summer getting up crazy early just to run before the sun came up and it got to 105 degrees. It was hot, it was humid, and at first I hated it. I kept plugging away all summer, and as the weeks wore on, even though it was 80 degrees at 6am and I was uncomfortable as hell, I enjoyed the quiet time to myself on those runs, and it gave me time to just deal with my frustrations and work through them. I finished the program in early August and decided I wanted to keep going, so now I’m running close to 4 miles four days a week.
Let me be clear: it hasn’t been easy. My joints are sore and swollen on a good day when I wake up, so I’ve been using profuse amounts of Dream Cream and my Ironman bath salts to combat that, and there are days I’d much rather sleep in. The main motivating factor is that it’s given me something positive to focus on that my body can do, rather than all the things it can’t. It puts my mind in a clearer space, one where I’m not stressed all the time and worrying about when the next ER visit will be. And now that I’m approaching my ninth anniversary of that first surgery, I’ve been thinking about what I want to do for my tenth, finding a way to keep myself moving forward while doing something to raise awareness for this disease and those who have lost their lives to it. My anniversary of that first surgery is November 2nd, so I think it would be pretty fitting if I could celebrate my decade of colonlessness by attempting to complete a half-marathon where it all began – back in Philadelphia. I don’t think my body would be up to the challenge of a full marathon, nor do I have the desire to put one of those stupid 26.2 stickers on my car. It’s not really about the distance, it’s about bringing things full circle and maybe finding a way to do some fundraising for a good cause along the way. I want to do something positive to honor all the heroic efforts of the various doctors, nurses, surgeons, friends and relatives over the past (almost) decade. For all those who provided medical care, listened, offered support, or simply just stuck around when it was easier to just walk away.
There’s a picture I have that my mother insisted on taking when I was still in the hospital recovering from that first surgery. I was out of ICU by this point, and one day when Dr. S came to check in on me, she snapped a photo of the two of us. There I am in my hospital gown, malnourished and gutted like a fish, but smiling with the man who had just saved my life. He asked for a copy of that picture years ago, and each time I talk to him, he mentions that he still has it on his desk. Each year on that anniversary, I send him a card thanking him for what he did on that day, and for all the other surgeries he pulled me through. Next year, I want to be able to send another photo with that card – but one that tells a different story. One that says “I kicked Life’s ass” and not the other way around. Am I certain that I can do it? No, but I wasn’t sure I could do any number of things that I’ve been through over the last nine years, either.
So there it is, now I’ve said it, so I’m going to have to try and follow through. As for the posts, I will try to be more consistent than I have been in the last few months, and at least put up a new one every month. There may not be many that read them, but I’ve received wonderful feedback from those that do, and that’s more than enough for me.