The First Defeat

Three weeks ago today I got my MRI results.  They were not what I wanted to hear.  I wrote about them in CEA, PET, MRI…  At nine o’clock that evening, Josh and I called my oncologist, Dr. C. on his cell phone to discuss next steps.  He identified three options:   

(1)  Continue with existing treatment.  The current combination of drugs, commonly known as Folfox, seemed to be working as suggested by my decreasing CEA levels as well as the apparently necrotic lymph node found by the MRI.  However, it didn’t seem to be working fast or aggressively enough for anyone’s comfort as evidenced by my still elevated CEA levels and a cancerous lymph node, possibly two as identified by the PET and MRI.  At that point I had completed 6 of 12 rounds of Folfox.  I am not a doctor but I felt like I should have seen more progress by then.

(2)  Add Avastin to my treatment.  Avastin is not by definition a chemotherapy drug in that it doesn’t target the dividing processes of cancer cells.  Rather, it is a supplement to chemotherapy drugs as it inhibits the flow of blood to cancer cells and thus inhibits cancer growth.  Serious risks of Avastin, albeit remote at 4 to 5%, are blood clots and hemorrhaging.  Other more common side effects are increased blood pressure (which can be controlled with additional medications), nose bleeds, bloody boggers and slowed healing process for open wounds, cuts and the like.  It also tends to exacerbate existing side effects from the chemo (e.g. more fatigue and more mouth sores).

(3)  Surgery to remove the likely cancerous lymph nodes.  Surgery is just one of those things that’s always in the air when you have cancer, at least for me.  The UCLA oncologist I consulted with after my surgery told me and Josh that the almost always first critical step in fighting cancer is surgery and that you increase your chances of survival if you have the best surgery and surgeon possible, someone who will excise the cancer with good margins and remove as many affected lymph nodes as possible.  I certainly had an amazing surgeon who cut all the way down to the blood vessels, removing 68 lymph nodes, an unheard of number for a laparoscopic hemicolectomy.   I also quickly learned that your chances of survival are greatly improved if the cancer is fully resectable, which mine was, or at least I thought it was.  Dr. C thinks that the cancerous lymph node, the one seen by the MRI by my psoas muscle to the left of my spine, was likely present at the time of my surgery, meaning that it is likely not new growth.  Intuitively or maybe delusionally, I agree with him – I cannot believe that new cancer has grown notwithstanding the chemotherapeutic assault.  It would have been difficult for a surgeon to see a cancerous lymph node in that area buried in between so much bone, muscle, tissue and other stuff – there’s a lot going on by the spine, I’m told.  But because the general principle that it is best to remove all possible signs of cancer surgically always applies, we have to consider the option of surgically removing this potentially cancerous lymph node.

Dr. C., Josh and I discussed the options.  Josh and I bombarded him with questions.  I have to say, with Josh’s incredible intellect and my decent intellect and extreme rational pragmatism, we together are a formidable force to be reckoned with.  We quickly process new information; we anticipate; we challenge; we push.  Over the months, as I’ve seen Josh in action, as I’ve seen us in action, I have gained so much faith and confidence in our collective ability to make medical decisions now and in the future in handling with this current crisis and to deal with all the crises to come.   I have a question though.  Formidable team notwithstanding, why is it that Dr. C. always says to Josh, “That’s a very good question…”?  I never receive praise for my penetrating, thoughtful questions.  Are my questions so unimpressive?  I’m offended.  As my therapist says, I’m so competitive, even with my husband.

What option do you recommend?  What are the likely risk factors that would make me more susceptible to the risks associated with Avastin?  Are the questionable lymph nodes on the peritoneum?  Would Option 2 preclude Option 3?  Would HIPEC address the cancerous lymph nodes?  Do we even know for sure that the spots that lit up on the scans are in fact cancer?  How reliable are the scans?  How much success have you seen with Avastin?  Dr. C. recommended Option 2, which was our immediate preference as well.  I do not present with any indications that would suggest I would be at high risk for hemorrhaging or clotting.  There is no way to know with any certainty barring a needle biopsy whether the lymph nodes are cancerous; prudence dictates that we assume that they are cancer.  A single set of scans can be unreliable – it seriously feels like everything is unreliable when it comes to cancer.  Rather, as I’m learning, we look for patterns with scans over time, just as I suppose we look for patterns over time with respect to CEA.  In a single set of scans, spots may light up because of inflammation or other reasons.  Two radiologists may also read scans differently.  Scans can obviously miss cancerous spots, thus the advisability of continuing with a more systematic attack against the cancer, as opposed to just going in to remove one or two cancerous lymph nodes.  Option 2 in no way precludes the availability of Option 3 down the road, depending on future scans.  It’s unclear whether the lymph nodes are on the peritoneum or within or without the abdominal cavity – Dr. C. said he would have to ask a HIPEC surgeon to see whether HIPEC would address these presumably cancerous lymph nodes.

I had hoped for clean scans.  I had hoped that Folfox was doing its job and doing it well.  Apparently, Folfox has only been doing its job moderately well.  In the week that followed that conversation with Dr. C. I had to come to terms with the fact that I had suffered my first defeat in what promises to be a long war against this cancer.  I had lulled myself into believing that my road to restored health would be a straight linear progression up – six months of chemotherapy and then I would be done.  This happens for people with Stage III colon cancer; I know a good number of people now who had Stage III colon cancer and they were cured after six months of treatment.  Remember, I was only Stage IV because of a technicality and so that scenario seemed distinctly and highly possible to me.   But these scans confirmed that I have Stage IV colon cancer and there’s no technicality bullshit about it, and with that comes the probability that it won’t just be six months of treatment and I’m done.  No, the more likely scenario that I am mentally preparing myself for now is continued treatment after January and periods of remission followed by recurrence and more treatment, until hopefully my body is rid of this cancer for good.

You know you’ve lost a battle when you have to rethink and change your strategy, when you have to bring in reinforcements, when you have to alter your outlook for the duration of the war.  The competitor in me, the part of me that wants to ask the doctor more insightful questions than Josh, absolutely hates to lose.  But the thing about war, as I learned through all those years studying so many wars in history classes and as I’m learning first hand through my own personal wars, is that it’s not just about one battle, won or lost.  It’s about the totality.  It’s about the many battles.  It’s about the soldiers themselves.  It’s about spirit, heart, passion, commitment, stamina and all the unquantifiable assets and virtues that would make the most unimpressive underdog combatants ultimately victorious.  So fine, I’ve suffered my first defeat.  But I”m regrouping.  I am far from counting myself down and out in this marathon of a war.


8 Comments (+add yours?)

  1. Katie Vogler
    Nov 12, 2013 @ 17:44:21

    I am so sorry for the disappointing and frightening news. Cancer is such a roller coaster. But you are well armed for the battle with an analytical mind and a stroud body. I had good news after four rounds of folfox, but it doesn’t calm my anxiety and I worry about my cancer regrouping and making a sneak attack while I’m on radiation. There are no treaties or international conventions in this battle.


  2. Raymond Ko
    Nov 12, 2013 @ 17:53:45

    Hey Julie, really sorry to hear about the latest — but keep up the fight! Setbacks suck but happens, as you said.


  3. Tanya Gee
    Nov 12, 2013 @ 18:00:13

    Beating my chest, painting my face, and making war sounds! That competitive spirit is the best arrow in your quiver. I will be beating my drum for you every step of the way, so listen for it when the war gets especially lonely and scary.


  4. Dana
    Nov 12, 2013 @ 19:02:20

    regroup, reenergize, reinvigorate and re-kick it. You’re amazing!


  5. Bill Ide
    Nov 12, 2013 @ 21:22:30

    Can’t tell you how many needle biopsies in the neck area (thyroid and Hodgkin’s cancers) I have been through due to a PET light up. I did learn that all light ups don’t necessarily mean cancer and that needle biopsies can miss the cancer part of a node. Love your attitude which is the way to win.


  6. Amy Callow
    Nov 13, 2013 @ 13:08:20

    Thank you for the update Julie. I’m so glad you have such a strong partner in Josh, and such a strong spirit. Think of you often!


  7. Gretchen
    Nov 13, 2013 @ 15:36:39

    I have NO doubt that you will win in the end!! Regrouping and fighting back!


  8. Shan
    Nov 16, 2013 @ 10:48:28

    Disappointing news, but I love how you are approaching it as a setback in a larger war, which I am sure you will inevitably win. And leave it to you, in a really sad post, to inject some humor with sharing how the doctor never compliments your questions. 😉


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