The Difference a Year Makes

It's hard to believe it's been a little over year. It's even harder to believe I'm doing as well as I am. I remember those first few days in the hospital; the absolute hell I felt. And the first few weeks at home, a sobbing little wreck of a human wondering if I would ever feel normal again. While "normal" is certainly an adaptation of what it was a year and five days ago, I've made a successful return to this newfound way of eating and living.

So to anyone reading this who is facing this surgery or is in the early stages of recovery-- remember, it will be just the most awful thing at first, you'll wonder how you will ever get through it. But it will get better and easier over time. I think even with warnings, a patient doesn't know just how difficult it will be. My brother didn't sugar-coat anything, "Teresa, this surgery is the worst. It's absolute Hell. You don't even feel human." But somehow it just didn't sink in; didn't quite convey the reality of the awful physical pain and discomfort combined with the mental fugue in which I would find myself immersed. But it's only really bad for a few days, and if you're like me, you don't remember most of it. I guess I have Morpheus to thank for that!

While there are many complications that can impede one's recovery it was always important for me to keep my thoughts positive in terms of the outcomes. Part prayer, part mantra, part "spell" if you will, the repetition of affirmations had been an almost frantic ritual in the days leading up to surgery and even for a while after. Add that to all the prayers and good vibes sent by countless family and friends, and I had a recipe for recovery.

One of my mantras was for "my gastrointestinal tract to adapt to not having a stomach." and I think it made a huge impact on my long-term recovery. I still have some discomfort with digestion. But I'm accustomed to it. What would send a stomached-person [<<--- new phrase I just coined] straight to the medicine cabinet for Rolaids or Pepto Bismol is just part of my everyday life. If it becomes unbearable, I just chew some crystallized ginger or ginger Altoids and that helps. I also know the feeling will usually pass in 20-30 minutes.

You learn to build the time you feel bad after eating into your schedule. For example, my daughter will ask when we are leaving to go shopping. My reply is usually something like, "Well I have to finish drinking this, then wait a bit and get something to eat, then sit there and feel like crap for awhile, so in about an hour, hour and a half, I'd say."

Lots of physical activity wears me out. In this summer season, we tend to get out more and go to parks and festivals that involve lot of walking around. I was always one to move at full speed, quickly snaking my way through any slowly ambulating crowd. Now, I find myself out of breath when I start going full speed. Its very frustrating because I've become that slow person I'm always in a hurry to walk around! But that's just me. I know of people who are running marathons after gastrectomy, so there you are. I wasn't running marathons before my surgery, so why should I be capable of doing so now, right?

My short-windedness is possibly a result of not getting all my nutrients. While blood tests a few months ago showed all my vitamin, mineral and other levels within normal limits, they were all at the low end of normal. Like an idiot, I didn't have my levels checked pre-surgery to determine a baseline of sorts, to see what was normal for me. I suspect they were on the higher end of the spectrum and the difference is what has lowered my overall energy.

Taking my supplements has not become the mindless habit it should have. I forget, I get busy. The daily AM and PM pill organizer didn't work. My sister and I had a conversation last fall about this. We determined that I should send her daily reminders to take her pills, she would send reminders to my brother, and he would send them to me. I noted that if we remember to send each other emails, we ought to just be able to remember to take our own pills. So everyday when I think of sending a note to my sister, I should just take my vitamins. Yeah, still not working.

The biggest accomplishment to date has been the fact that I've been able to give myself a B12 injection for the last two months in a row. Three months ago I had been determined to do it. But after standing in the bathroom for five minutes with my shirt slightly lifted, my right hand aiming the needle, dart-like, towards my pinched belly, I broke down and called Dan in to do it for me. I've finally summoned the courage and am able to do it myself. It takes a few minutes to psyche myself up, but I get it done! Still freaks me out though. And I still hate getting stuck with needles by anybody else.

There was a time, exactly a year ago, when I couldn't envision myself where I am today. I couldn't imagine being able to feel anything at all except pitiful, helpless, frightened. In those days I was focusing on making it though the next ten minutes. I couldn't even think about the next day, let alone a year down the road. Yet time marches on, as they say, and I'm glad to have reached this monumental milestone. While there are aspects of this new normal that I wish were different, or easier, I can only be extremely grateful to have come so far in this time.

365 Days Down ....

Here it is. One year ago today I lay supine on a cold steel table while a surgical team worked to remove my entire stomach, and with it, the existing cancer that had grown, plus any chance of recurrence.

The patient is a 40-year old woman with a history of an E-cadherin mutation and autosomal dominance of gastric cancer in her family. She has recently been diagnosed as carrying the gene and has a focus of early gastric cancer within her stomach. She presents now for total gastrectomy for treatment of her cancer, as well as prophylaxis against future gastric cancers.

As I sit here reading the Operative Report, I am in awe of what modern medicine can accomplish. With five little incisions, doctors went into my abdomen and were able to explore, cut out my stomach, omentum and a few lymph nodes and remove them from my body.

The greater curvature of the stomach was dissected out using the Harmonic scalpel.

This has a nice, celestial-divine kind of ring to it and pleased me greatly when I first read it. Turns out Harmonic is pretty much just a brand name, but I'll stick with my interpretation, because it suits my mindset.

Every time I read this report I understand more and more what it is saying. Often I have to look things up. While "pancreaticogastric vessel" is easy enough to figure out, "ligament of Treitz" and "enteroenterostomy" are not part of my standard vocabulary. Slowly but surely, I'm figuring out exactly what happened in there.

The small superumbilical incision [then only 1cm] was extended for a distance of 3 cm and an Ethicon hand port was placed to protect the wound edges. The stomach and omentum were delivered through this incision.

Think about that, they pulled out my stomach through a 4 cm incision. Gross.
All went according to plan, until they couldn't get that damn stapler down my throat! Other than that it was quite a success. Curative.

At the end of the procedure, all sponge and instrument counts were correct x2.
[No hemostats left behind!] The specimen had been sent to Pathology and both the proximal and distal margins were negative for carcinoma.

So it hadn't begun to spread from the tiny focus in the antrim. Crisis averted.

On this one year anniversary of my surgery, my niece, the third of my deceased sister's five children, has an appointment with "the family surgeon" Dr. C. After she recently tested positive for the gene mutation, our Rockstar Gastroenterologist detected a small focus of early cancer cells in her stomach. I've said before that the biggest problem with diffuse gastric cancer is that endoscopic screening usually doesn't find the cells until they have spread a great deal.

While it's certainly a blessing that the Dr. L knows how to screen for this kind of cancer, because it raises the likelihood of finding it before it's incurable, on the other hand, once even a tiny localized spot of signet cells is detected, it raises the stakes and makes the surgery something that needs to be addressed immediately, not just sometime in the future. It's unknown exactly how long it would take those cells to start spreading. So once they are found, it's time for the stomach to go. Even if you're only 22 and have your whole life ahead of you.
Good luck little Lola, you're going to be just fine!