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Two Months Out

August 14, 2014

Although I was in no way enthusiastic about my June 17 surgery, two things made the prospect bearable: the expectation of having all cancer removed from my body and the confidence of one of my surgeons that I would be recovered in time for my rock-climbing trip with First Descents in early September. Unfortunately, neither of these was to become reality.

I’d expected to spend the first night after surgery in the intensive care unit of the hospital. After several fuzzy and pain-filled hours in the recovery room, the nurses told me I was being moved to my room. A regular room, not in the ICU. I interpreted this as a very good sign at first; I was already doing better than expected! The first indication that not all had gone as planned was a bandage on my neck I found as I rode up the elevator in my hospital bed. Only a few days before, I’d had a conversation about tracheostomy tubes with my friend, a doctor. Panicked, I asked about the bandage, expecting to be told that it was covering a large hole in my throat. I was only slightly relieved to hear that the attempt to place an internal line in my jugular during the surgery had been unsuccessful – I still imagined the large hole. But the nurse assured me that it was nothing to worry about.

My mom was waiting for us upstairs. I asked her almost immediately if she’d spoken to the surgeons, and what all had been done (the surgeons had planned to cut me open and then decide how to proceed depending on what they saw). I found out then that they’d removed one section of my colon but little else. They’d seen a fair amount of cancer growth on and around my small intestine that they didn’t think could be removed, and had decided against proceeding with HIPEC (the “shake-and-bake” part, which would have involved washing my insides with heated chemotherapy). I was also surprised and confused that my mom mentioned only one part of my colon; the one thing we had known with certainty prior to the operation was that there were at least two cancerous lesions in my colon, in completely different places. “Well, that’s not very good news. Actually, that’s pretty terrible news,” I told her, my voice breaking. The nurse offered to leave us alone, but as far as I was concerned, the conversation was over, and I told her so. There wasn’t much else to hear.

Once the nurse got me settled in the room and left, I asked Mom whether she’d updated friends and family. She said she’d shared the news with several close family members, and had emailed a larger group to let people know that I was out of surgery and doing fine. Neither of us felt ready to share our disappointment with the multitudes of people who had been texting, calling, emailing, and posting on Facebook all day. As I would later write to a few friends, it was hard to find the words. I was used to sharing bad news – after all, I have metastatic cancer. But the bad news was supposed to come before the surgery, and bring with it the promise of good news once all cancer is removed. Not so this time.

The following morning, after speaking with my surgical team, I emailed some of my closest friends, using the subject line “It’s not good,” and briefly explained what had happened during surgery. Though I was aware, of course, that the longer people were without information regarding my health, the more they’d worry, I asked that no one share this information until I was ready. After all, most of my broader friend group had at least been notified the night before that I had made it through surgery ok. And I just wasn’t sure I was prepared for everyone’s responses, especially if they were going to make me feel even worse about the situation (my people are pretty good at being supportive instead of needy in response to my setbacks, but not everyone is familiar with Susan Silk and Barry Goldman’s awesome ring theory rule of “comfort IN, dump OUT”). It took me another day and a half to draft and send a more detailed message to the larger group. In the end, I believe I received a lot of supportive responses (I was on a large amount of Fentanyl, which made it difficult to focus my eyes and stay conscious while I read emails and texts).

I spent the next week in the hospital. Every day when my medical team visited, I was ready with a list of questions. I wanted to know what was happening, what my options were, and why the surgeons hadn’t been more aggressive. I learned that while HIPEC administers a very large dose of chemotherapy all at once, it penetrates only about one millimeter – and some of the tumors around the small intestine are closer to one centimeter in size. It could make me very weak, increasing my recovery time, and not provide any benefit. I also learned that one of the cancerous areas in and around my colon had not been touched due to its location – proximal to the bladder and uterus. Surgical intervention could have impacted both bowel and bladder function. I asked whether this area could be treated with radiation, which until now had not been an option for me, and though my surgeon recommended I discuss it with my oncologist, she thought it was likely.

When I left the hospital, I was able to get up by myself and take long walks through the hospital corridors, but I was still barely eating. Unfortunately, seven weeks later, less has changed than I would like. My incision at least has healed well, but I have not bounced back quickly as after previous surgeries. When I was weighed at my oncology appointment last week, I had not gained a single pound. Until just a few days ago, even one bite of food caused immediate abdominal pain, creating a significant barrier to ingesting anywhere close to the calories I’d need to get back into the triple digits.

All of this has caused me to feel fairly frustrated and disheartened. After three and a half years and three (now four) surgeries, I’m used to following pain with improvement. The trouble is, this time around, the surgery did not fix me. The source of the problem is still inside me. 

It took me five weeks to recognize this key difference between my current situation and my previous experiences, to realize that this lack of progress is at least partially out of my control. I’d still like to feel better so that I can return to my normal life – but I know that it will take more than just time for that to happen. I began daily radiation treatments to my pelvis last week, which will continue through early September. Ideally, these will zap the wall of tumor that has formed in my “cul-de-sac” and has penetrated the colon wall. I’m also taking 2,000mg of Xeloda, an oral chemotherapy drug, daily, which I hope will keep the growth around the small intestine at bay until the radiation is over, at which point I’ll begin a more aggressive chemotherapy regimen. And finally, I’ve begun daily infusions of total parenteral nutrition (TPN), which both removes some of the pressure I’d felt to eat constantly (though I will continue to eat to the extent I am able) and will hopefully help me add some pounds. Onward and upward.

14 Comments leave one →
  1. Alleen permalink
    August 14, 2014 9:38 am

    I’m thankful to see an update from you but hate that it’s not over the moon positive. Prayers that the radiation, drug and extra nutrition do their jobs!! And through this all, your spirit and determination continue to inspire me (and I’m sure many others)!

  2. Abby permalink
    August 14, 2014 10:17 am

    Thanks for the update. You continue to be one of the strongest people I’ve ever met, though I’m sure it would be nice if life required a little less toughness for a while! I’m thinking of you lots and around for walks, talks, not talking, not walking, etc.

  3. Wendy Blaylock permalink
    August 14, 2014 11:09 am

    You continue to inspire me!

  4. Krista Drain-Fenstermacher permalink
    August 14, 2014 11:37 am

    Rachel, I have always looked up to you because you are a wonderful, strong, brilliant person. I am sorry that you are faced with this. I am praying for you and your family. I truly hope that all the cancer leaves your body. I look forward to seeing more photos of your adventures life. Wendy, the message ahead of mine, is right. You are truly inspiring.

  5. Dom permalink
    August 14, 2014 12:21 pm

    Thank you for sharing this, Rachel. Having had to stick my toe into the challenging waters that you’ve been swimming in for years, I still can’t fully appreciate how hard you’ve had to fight. I am, though, in your corner and sending all of my most powerful healing thoughts your way. If you ever need a cup of tea and a chat about anything from chemo to cupcakes to cool places we’ve yet to explore, I’m in.

  6. Katie permalink
    August 14, 2014 12:50 pm

    rachel, thinking of you across the pond.

  7. Joan Hohwald permalink
    August 14, 2014 3:08 pm

    You are amazing! Think you could teach the “Docs” a few things. Keep plugging away!

  8. Michael Pokrivnak permalink
    August 14, 2014 6:35 pm

    I am sending you positive thoughts. Keep on fighting.

  9. August 15, 2014 10:50 am

    Thank you for sharing Rachel. Wish I could send you some of my ‘extra’ pounds! Just do the best you can to fight this…no one can ask for more. Will to live makes a difference. And, get lots of HUGS!

  10. August 15, 2014 5:23 pm

    You’re an inspiration, Rachel. Keep going. We love you.

  11. Hootie permalink
    August 17, 2014 1:50 pm

    Sending good thoughts for treatment success asap. I hate that you are missing your FD trip. Hope to see you soon for some #outliving it locally!

  12. Angela Etheridge permalink
    August 24, 2014 10:56 am

    Rachel, this is the first time I am hearing of this news. My husband has just recently beaten his colon cancer. You and your family have always been an inspiration to me. I still talk about the amazing Yinglings who taught me so much, more than I could ever teach them. You will beat this. There is no doubt. Positive thoughts and love your way.

  13. August 24, 2014 1:08 pm

    Thank You for keeping us informed… Your perspective is one the shouldn’t be lost on your journey through all of this… Again, I am thankful for your ability and willingness to share this with all of us… Peace, my friend…

  14. Matthew permalink
    August 30, 2014 8:52 am

    Please watch this. It may save your life.

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