Second Look

This Thursday I will be undergoing an exploratory laparoscopic surgery (i.e. my surgeon will insert a camera into a little incision made at a prior incision site) to see whether there is cancer in me, whether the clean MRI results from three weeks prior were accurate. Yes, I have chosen Option #4 as per my prior post. It’s called a “second-look laparoscopy”, something that has rarely been done, and pretty much never done in the colorectal cancer context. I consider myself very fortunate to have this available to me as an option since my HIPEC surgeon is conducting an unprecedented study at Mount Sinai Hospital to determine whether such second-look laparoscopies affect survival outcomes. Although the study is yet to be formally underway and the ultimate findings are years away, I would think such a procedure can only improve survival outcomes, and that belief is exactly why I’m doing this.

This does not preclude Option #1 (continuing on full-blown chemo of folfiri) or even different options after the surgery. If there is visible cancer in me, I may undergo additional surgeries (including another HIPEC) and most certainly would continue on full-blown chemo. If there is no visible cancer, then I may stop treatment, undergo alternative therapies or put myself on a maintenance therapy that is still in the clinical trial phase – I’m still researching the latter two possibilities, although I’ve been procrastinating somewhat as I hate to waste time researching what may be a moot concern come Thursday. Everything will turn on the results of Thursday’s exploration.

The thought has crossed my mind that I am a glutton for punishment, that I don’t know how to be zen. I could envision a rational person in my situation saying, enough for now, and taking a wait-and-see approach at least through the holidays, observing the monthly CEA results, and only acting if there were a concerning increase. I did ask my surgeon, Dr. D.L., about whether now was the right time to do this exploratory laparoscopy – I mean shouldn’t I do this only if my CEA rose? He noted that while a CEA rise was often a precursor to a tumor being detected on scans, the human eye is able to see a cancerous tumor before a CEA rise. When he informed me of this interesting tidbit, I remembered him telling me before my HIPEC surgery that he would be able to see a cancerous tumor the size of a pinprick pencil mark and the chief resident surgeon at UCLA telling me, “Visual inspection is absolutely the best way to detect cancer.”. Dr. D.L. will also be performing washings (not scrapings as I wrote in my previous post), which will entail flooding my abdominal cavity with a liquid, sucking that fluid out and then testing that fluid for microscopic disease. While this sounded more reliable than the scraping of tissue I had previously assumed would be used for testing for microscopic disease, I was still skeptical and asked Dr. D.L. how reliable washings are. He told me 50/50. In other words, if the fluid came back negative for microscopic disease, I could only take 50/50 comfort in that good result. If the fluid came back positive for cancer, then I think we would be quite certain that I had microscopic disease. Indeed, Dr. D.L. said that if he had to bet, he would bet that I do have microscopic disease; you have to when you’re dealing with Stage IV disease, even when there is no visible evidence of disease.  When I asked about the potential risks of surgery, Dr. D.L. really didn’t identify any, other than a potential inability to get through scar tissue from prior surgeries to have a good look, something he highly doubted would be the case in my situation. The procedure seems like it will be so minimally invasive that I will be going home the same day.  Dr. D.L. felt that given the minimal risk the surgery represents and the tremendous amount of information to be gained, the surgery is a worthwhile endeavor. That information will in turn result in more prudent decision-making about the next step in treatment. I agree.

I’m scared. I’m scared to wake up and see that devastated look on Josh’s face again, like the one he had after the GI at Garfield Medical Center told him I had a mass that was suspicious for cancer as he, Josh, told me the news after I woke from my colonoscopy. I’m scared to hear the words that there is cancer all over. I know you must think, but your scans were clean. Clean scans offer me little reassurance. I know of too many people who went in with relatively clean scans and were shocked to learn that there was cancer the scans didn’t even begin to detect.

I’ve been fatigued recently, really fatigued. Sleepy in the middle of the day. Sleepy two hours after getting up even though I slept a good eight hours. I’ve had a cold, something that Belle gave me. I have horrible sleep patterns now, sleeping and then waking for a couple hours in the middle of the night and then getting up early to get the kids ready for school. Until two weeks ago, I’ve been on chemo nearly nonstop for 14 months. I keep telling myself that these are all reasons for why I’ve been so fatigued. And yet, I’ve declared to Josh repeatedly that I have metastatic colon cancer. I imagine it’s all over my peritoneum and on my small intestines and on my liver. I’m terrified of what Thursday will bring.

When I am scared, I try to play out in my mind the worst possible outcome. I try to prepare for the reality of my time being limited to months and not years. I try to plan what I would do in that amount of time. I try to understand what it is exactly that I’m afraid of. I am not afraid of dying or death. I’m afraid that my husband and children wouldn’t be prepared; that’s what I fear most. Some may tell me I need to be positive in advance of Thursday, to envision rather a happy outcome. I’m not a positive person; I don’t have a cheerleader’s peppy personality and often find positivity to be borderline delusional and willfully stupid.  So, in these days leading up to the surgery, I will focus on everything that could go wrong, so I can be prepared emotionally to handle whatever awaits.  I’ve often found in my life, especially as I was about to fearfully embark on some crazy adventure to some obscure place in the world that I couldn’t see very well, that fear, if channeled properly, can be a wonderful tool that heightens one’s senses, fortifies one’s resourcefulness and resolve, and builds character, strength and courage. That’s what I like to tell myself and what I will be telling myself in the days to come.

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11 Comments (+add yours?)

  1. Holly
    Oct 26, 2014 @ 23:54:34

    I will be thinking about you on Thursday. And, waiting anxiously for your update. We’re all worried about you.

    Reply

  2. Anne Marie
    Oct 27, 2014 @ 00:09:59

    The waiting and wondering can be agonizing, I know – I hope that Thursday brings reassurance vs. new worries, but know that either way I and many others are sending love and positive thoughts your way!

    Reply

  3. Paula Daniels Roberts
    Oct 27, 2014 @ 00:31:16

    Thank you for your post. I’m just here in bed feeling terrified, I guess we are not really all that different when it comes to dealing with this disease. Probably many of us feel this fear, how couldn’t one, but thank you for putting it in to words. I enjoy getting your posts in my email. I’m sending positive thoughts out to you and pray that we will all be healed.

    Reply

  4. Barbara Gettelman
    Oct 27, 2014 @ 11:56:49

    You are proactive and no-bull-shit brave. Very, very inspiring and empowering to others, especially to my 71 year old self. I live my life differently now because of you Julie. We’ll never meet but I still want to thank you and hold you in a special place in my heart.

    Reply

  5. April
    Oct 27, 2014 @ 13:24:20

    I think of you and your family often. You’re all tough cookies! Thank you for your candid writing. It’s very much appreciated!

    Reply

  6. Heidi
    Oct 27, 2014 @ 14:23:49

    I will be thinking of you and your family as well. My husband also had a HIPEC as a result of metastatic colonrectal cancer. His HIPEC was in May. He had surgery in July because of a bowel blockage and they found no evidence of tumors. 3 more months have passed. I understand your fear. You are so fortunate that they are doing this! Waiting is the hard part. You and your family continue to be brave and strong!!!

    Reply

  7. Kit Grady
    Oct 27, 2014 @ 16:31:43

    sending prayers for Thursday,

    Reply

  8. Andie
    Oct 27, 2014 @ 18:53:27

    Hi Julie, I have been following your posts and appreciate your frank attitude and honesty. I love your no bullshit attitude and I admire you for making that choice. I would want to have someone “eyes on” too! Wishing you all the best on Thursday.

    Reply

  9. jessica
    Oct 27, 2014 @ 18:57:58

    you’re in my prayers today, every day, and especially on Thursday.

    Reply

  10. Lisa
    Oct 28, 2014 @ 04:41:43

    I can see why you are so proactive and aggressive in your approach – it is the only way to win this fight and your incredible logic means that you can see that. Keep extending those boundaries Julie!

    Reply

  11. Norma
    Oct 29, 2014 @ 10:47:25

    Julie and Josh,

    Edward and I are thinking of you and sending our love. Norma

    Reply

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