Part IV: How GIST and I Became Acquainted

This is the fourth part of my story. Read the first, second and third parts.

My 27-day hospital stay consisted of a cornucopia of sensations, from fear to isolation, with a craving for information, a sense of overwhelming dread, gradual comprehension and finally, clarity. Once the date was set for surgery to remove my uninvited passenger, I was able to feel a sense of moving forward, as though this journey might finally end.

I deeply missed being home. The familiarity of doing my job helped some, once I had my work laptop and was able to craft customer communications from my hospital bed. Having Internet access was a mixed blessing, however, because it allowed me to research the many mysteries surrounding my case, which meant learning things I did not necessarily want to know. For example, I learned that GIST does not have a stellar reputation in the world of unplanned growths, though since that time, its tarnished image has somewhat improved. My sister-in-law had done her own research; I soon learned what she had not been telling me, and with good reason. I wouldn’t have told me any of that either, given the choice.

My sister, a resident of Alaska, was on her way to the hospital and arrived on the day of my surgery, by which time I was in the presurgery bay experiencing a new, drug-induced alteration. The attendants had appeared early that morning to transport me into the hands of a nurse who announced that she was in charge of preparing my ‘cocktail.’ She started a line and that’s all I remember until I awoke in a noisy, chaotic area with a curtain surrounding my bed. It was otherworldly, though not nearly as mentally challenging as it would become. My prescribed drugs had morphed into intense painkillers and a thoughtful nurse had made me a post-surgical pillow by folding and duct-taping a thin blanket into a small square. I didn’t understand how this would help, until that first cough … suddenly it all became clear.

The attendants eventually wheeled me into a new room, where I awoke to see my sister trying to sleep in a chair not designed for resting. Had she not been so jetlagged, I doubt she could have slept at all, but I was so grateful for her presence.

I had hallucinations during the first 24 hours after surgery, involving the sensation of being outside of the building, in an alleyway, watching two white-coated attendants discuss my case. It had all the ingredients of a "Twilight Zone" episode, but since I was wide awake, it could not be a dream. As if that wasn’t enough in the Mind Alterations Department, I was also given access to a pushbutton pain medication device, which handily dispensed dilaudid, a powerful, mind-altering narcotic that, with the mere push of a button takes you so far away from reality that pain ceases to be important. It didn’t take long to figure out when to push the magic button and I was lucky to be able to escape the excruciating pain emanating from my large, abdominal incision. The effects of the drug were so strong that after just two days, I asked to have the device removed from my room.

Final tumor statistics vary, depending on which report you look at, though it seems to have been 17 cm x 11 cm x 11 cm. It was what my dad would have called “a whopper.” There was a second tumor found in the same area, which was very small, about 2 cm x .8 cm. According to my surgeon, both were removed cleanly and without incident. The lab measured their mitotic rates to determine how fast they were growing and came up with 1/50. That’s as good as they get without being benign lumps of coal instead of tumors. My family and I were elated by the news. My surgeon said, “that thing was just hanging out in there.”

If I could have changed anything, I would have ensured that the hospital restrict telephone access during my stint with the dilaudid dispenser, because I had a few instances not unlike ‘drink and dial,’ where I called coworkers and had conversations that only they remembered, later. This gave them license to make pronouncements starting with, “You were so funny when you said …”

For the week following my surgery, the hospital’s new batch of residents came and went in wandering packs with the frequency of commuter rails, each more eager to examine the surgical scar than those who had come before. Most seemed to find it remarkable. I was hard-pressed to agree.

The return to eating was slow and less than tantalizing, with only soft foods allowed. One special nurse would bring me little containers of orange sherbet every time she was on duty and I looked forward to seeing her smiling face in my doorway, feeling like a dog yearning for a fresh bone.

A few days before I was to be released back into the wild, a social worker dropped by to say she had good news. She had negotiated with my insurance company for a direct transfer to a nearby rehab facility for at least two weeks, to work on my residual stroke damage. This news was worse than the accidental announcement by a DO that I had cancer. What? Two nurses stopped by and asked why the long face and when I explained the problem, one said, “You don’t have to do anything you don’t want to, dear, the decision is completely up to you.” With her words, the heavens opened up and golden rays shown down on my bed, which I knew I would soon be vacating for good.

I’d been under the control of others for so long that I had forgotten about my own free will, which the kind nurse had reawakened. When the social worker came back to discuss the arrangements for my transfer, I thanked her for her trouble and let her know that had she asked for my opinion, I would have been able to save her the time she had spent haggling with my insurance company, because I was going home, to be free at last.

Next: A surprising development upon my return to familiar ground ...

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