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One Year

November 16, 2013

Thirteen months ago today, my mom and I left the American Cancer Society Hope Lodge in Baltimore, Maryland at 4:30 in the morning to head to Saint Agnes Hospital to check in for HIPEC surgery. This was my second major surgery in just four months – my ovaries, appendix, and a few nodules in my omentum had been removed in June, but that surgeon left behind a few tiny spots he’d seen in my omentum, making me a candidate for this shake-and-bake procedure.

After an hour or so in a heated gown, a couple of blood type tests to check and double-check (in case I’d later need a transfusion), and a quick chat with my surgeon, my mom gave me a squeeze, the anesthesiologist knocked me out, and the nurses wheeled me off to the operating room. I woke up after the five-hour procedure to somewhat alarming news – the surgeon told me he’d found (and removed) more cancer than they’d expected: besides the omentum spots the previous surgeon had seen, there was a growth on my liver, another on my small intestine which had adhered to my abdomen wall and caused two kinks, and  a tiny nodule in the peritoneum. The pathology results brought some relief a few days later, however; when biopsied, only the omentum and the peritoneal nodule tested positive for cancer. And if the surgeon’s suspicions were correct, that the other items he removed had been cancer at some point, then the negative biopsy results indicated that the chemotherapy had been doing its job. Whew.

I was anxious to recover enough to go home – with the exception of my surgeon, his nurse, and four lovely nurses on my floor, I was unimpressed by Saint Agnes Hospital. I was awake in excruciating pain most of the first night after surgery, waiting for promised pain meds that took hours to arrive. A few days later, a patient on my floor passed away, which my nurse told me in order to chide me for calling for my meds that were more than two hours late (in a tone that clearly said “oh poor you, you’re in pain – well this woman died“). And the constant construction noise – the floor above me was being remodeled – didn’t help anything. Before surgery, I’d been constantly warned to expect everything with HIPEC to take twice as long as previous surgeries – hospital stay, general recovery, return to work, etc. Of course, I’d mostly ignored those warnings, telling myself that they were for old people in poor health – and this was reinforced when I was discharged just a week after the procedure.

But the recovery was just beginning. I thought I’d automatically feel much better once I was home, but frequent pain and nausea made food unappealing. The hard mattress that I’d always loved was now bruising the scant 92 pounds that remained of my already-thin frame, keeping me awake at night. The weather outside was cold and rainy, so I had no motivation to take even short walks around the block to get some exercise (in the hospital I’d done countless laps around the ward). My house is large, but it’s vertical, and I wasn’t feeling strong enough to think that walking stairs any more than I already had to just to eat or get to the bathroom was something I wanted to do, especially with a broken foot. (Yes, that’s right – as you may recall, I had broken my foot in September and would have to wear an air cast until December.)

At my three-week follow-up appointment with my surgeon, my voice broke as I expressed my frustration at my slow recovery. I thought I’d feel better by now,  I told him. He just smiled at me, and told me that I looked fantastic and that he was more than pleased with my progress to date.

After that appointment, I recalibrated my expectations. Recovery did not speed up – the first full meal I remember eating was Thanksgiving – but I tried to stem the frustration and accept each day as it came. I didn’t ask for yet another life lesson in all of this, but through the experience I did learn a lot about patience and how to take care of my body.

A full three months passed before my oncologist determined I was ready for a CT scan and to resume chemo. In late January, I started 5FU, Avastin, and Erbitux. Since then, I’ve had three scans – all clear – and trimmed the regimen down to two drugs.

It’s hard to believe that a year ago I was 15 pounds lighter, unable to lift more than about 5 pounds due to risk of hernia, and getting most of my nutrition through Ensure Clear. When I compare now self to then self, and realize I’ve had A YEAR OF CLEAR SCANS, I feel a bit like Hushpuppy from Beasts of the Southern Wild.

But today I’m tired. This week, I’m tired. Yes, I’m opting to continue poisoning myself – for just five more months, if scans stay clear – in an attempt to kill any cancer cells that may still be lurking. Some people think I’m crazy to continue treatment when my current results are so good.  Here’s the thing – just two months after the last time I had a full year of clear scans, my cancer came back, and spread to my ovaries, abdomen, and appendix.

So while I’d love to celebrate, my mind begs caution. I’m not out of the woods – I’ll never be out of the woods.

But I’m in a much better place than I was a year ago.

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3 Comments leave one →
  1. November 17, 2013 9:07 am

    This is how I feel. Like I’ll never be out of the woods and I’m just beginning this journey. I just finished 12/12 rounds of chemo. I started a month after my surgery to remove my tumor. No scans yet. Those are scheduled for next month. I’m always thinking about it. You get to know your body fast when you get diagnosed with something like this.

    You may never be out of the woods, but you’ll have some of us readers with you in there. Definitely.

    • November 17, 2013 10:18 pm

      Thanks Kristin, and congrats with finishing chemo! I’ll be thinking of you next month.

  2. November 25, 2013 3:18 pm

    Rach, chips and salsa seem to put the jelly on the belly. I’d recommend it, adding this kinda spice to the life, but with mild jiggle inducing crisps.

    I’m happy for all of your triumphs and so proud of your mettle!

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