Gratitude, Scan Results and More Decisions

Almost a month ago, right after the Cleary fundraiser, I walked into the NYU Cancer Center for my 11th round of Folfiri and 24th round of chemotherapy overall, still floating on the golden cloud of success and support from that evening. My usual nurse practitioner was out so I actually got to see my oncologist, the man himself, Dr. A.C. Instead of discussing what would come next after I finished the current cycle of chemotherapy (which I suppose I should have done) – he had promised 12 rounds of Folfiri and then we would reevaluate – I bragged about how much I had raised thus far for my research fund. He gave me a big thumbs-up and told me I was his only patient who had ever tried to raise money on such a scale. He told me a funny story about a former rich patient who had undertaken somewhat misguided philanthropic endeavors through NYU and I wished how such rich people would donate to my research fund. We briefly talked about the status of my list of side effects. Oddly, many of the most troubling side effects I had complained about in An Intermission and which I had expected to worsen, had in fact stopped; the hives ceased appearing, my hair stopped falling out and in fact seemed to be growing back with a vengeance even though I was still on the same regimen that had caused it to thin in the first instance, and my blood pressure, while somewhat inconsistent, still did not need medication. As we were wrapping up, I returned to the subject of fundraising and finding a cure for colon cancer, ranting at the severe and unjust lack of funding and my fervent belief, based on my understanding of the history of cancer treatments and the trajectory that that history implied, that it was entirely possible to find a cure for colon cancer. And with my back to him as I picked up my bag I’d dropped in the chair reserved for patients’ families and friends, I proclaimed, “And I want to be around when that cure is found!” It was a proclamation made as part of my impassioned rant and speech, not something for which I needed or expected a response. Even so, Dr. A.C. responded, “I think you will be.” I hadn’t asked him for his opinion about my prognosis. I hadn’t even been looking at him. Dr. A.C. is a man who is typically so careful and deliberate with the words he chooses but yet also, according to others, known for his honesty; such care and deliberation mixed with honesty are almost prerequisites in his line of work and an indication to me of his years of experience and compassion.

I went off to my infusion, thinking about his unsolicited, simple yet loaded, almost off-handed statement. I realized that my oncologist believes in me. He believes he can get me to a cure and he believes that I have what it takes to mentally and physically get to that cure. Maybe, that belief is based on the fact that from a clinical perspective things aren’t as bad as they could be and, in fact, one might even say things have really gone almost as well as they possibly could have gone until now, from the way I’ve responded to treatment to, despite my Stage IV status, the minimal amount of disease found during both surgeries. Maybe, he’s just human and his belief is based on a desire to see me cured even though he knows it’s against the odds. Whatever the bases for his belief, all I need to know is that he, my oncologist, the man who is quarter-backing my war against cancer, has that belief. Dr. A.C. doesn’t know what the future holds, nor do I, nor does anyone else, but to know that my oncologist believes in me strengthens and comforts me in a way that nothing else could.

I tell this story because I’ve been feeling tremendous gratitude within the last 48 hours to Dr. A.C. and all of the others of you, some of whom I’ve never even met, who have believed in me throughout this journey, who have believed when mine and Josh’s faith have faltered, who have stood by in a show of support for me and Josh that humbles us. I know there are those of you who put your faith in science and statistics and yet you, like Dr. A.C. and Josh, have been able to make room within that conviction in science and those statistics to allow for me to be an exception to the odds. That allowance is not just an acknowledgment of the imperfection of science and statistics, but also your understanding of who I am, where I come from and what I have overcome to be an outlier all my life, things I’ve often forgotten in my dark moments For that belief and support, I cannot thank you enough. I understand that belief does not translate into a guarantee that I will in fact beat this cancer for cancer is stealth and insidious and I know that things could always go downhill unexpectedly and quickly, but I am realizing that for me and Josh (and I daresay for so many others facing advanced cancer diagnoses and their caregivers), a non-delusional belief in the possibility of the very best possible outcome within the spectrum of realistic potential outcomes given the known facts is the most valuable form of support we could receive.

I had scans this past Thursday. Originally, I was to have a PET scan, as I usually do, but my insurance company denied the request for a PET scan as medically unnecessary and instead approved my doctor’s request for an MRI. I don’t believe MRIs are much less expensive than PETs, if at all, so I don’t understand the reason for the denial. News of the denial came the day before my scheduled PET, which sent me into a mild panic as I frantically researched to determine whether MRIs were an inferior imaging technology, particularly for detecting disease on the peritoneum; if it were, I would have to consider whether to challenge the insurance company’s decision. Despite the nurse practitioner’s assurance that an MRI was “appropriate” and the fact that once before I had an MRI as a follow-up to a concerning PET finding, and given my inability to speak to my oncologist before the scheduled MRI, I had to reassure myself with hard evidence. I googled; I read a study or two; I posted the question on my online support group; I sent a message to a college friend who I hadn’t really spoken to in 17 years but who had become a radiation oncologist at a prestigious teaching hospital. I’m not going to get into the technicalities of what I learned but I did reassure myself adequately that an MRI would be just fine, that indeed an MRI was probably better for me than a PET. It was a good way to distract myself from the anxiety of the imminent scan. And, even better, I didn’t have to be radioactive for 48 hours afterwards (because a PET would have required the infusion of a radioactive tracer into the body).

Josh and I went in on Friday morning to find out the results. I stopped by the 2nd floor at the imaging department to ask for a copy of my MRI report before proceeding to the doctor’s office on the 8th floor. I had come up with this brilliant strategy so I could read the results for myself and could prepare for whatever the doctor had to say, so I wouldn’t have to sit through more waiting. I was quite proud of myself for coming up with this plan but apparently I wasn’t the first to have thought of the idea. The woman at the desk said she couldn’t give me the report before I met with the doctor. I was incredulous and spewing steam as I declared self-righteously that that report was my medical information and therefore belonged to me and that the hospital had no right to deny me access to it. The woman said it was against hospital policy to provide patients reports before they’d spoken to their doctors because patients would then bombard her and others like her who knew nothing with questions. I would have continued on my rant but Josh hurriedly pulled me away.

It was another distraction from the anxiety. Waiting to find out scan results is like running to the mailbox, looking for the envelope with your SAT scores, going through the different scenarios in your head repeatedly of what would happen to your entire future if your scores were x or y because those scores would dictate where you’d spend the most important four years of your life and then when you would go to graduate school and then where you’d be able to work and how much money you would be able to make; your hands shake as you clumsily rip open the envelope, your father making you more nervous as he looks over your shoulder. Wow! I was such a little nerd!

I know the suspense is killing everyone so I will end the suspense. My scans were clean. Hallelujah!

Scans in January and June were also clean, but yet, whereas those clean scans gave me merely a sense of relief, this most recent set of clean scans has made me happy and has even revitalized me. It feels like I’ve reached an important milestone, a momentous point in my journey, a point where I can look back and be proud of what I’ve endured and achieved over the last 15 months. Dr. A.C. told me before my supposed final infusion that if these scans were to come back clean, then I could stop chemo.

Of course, when we actually sat down to discuss the results, it turns out my doctor’s earlier statement was more nuanced than what it had seemed.   He said “could” stop, implying that he would be okay with that course of action if I so chose, not that he would recommend that course of action.

He presented me with four options:

1. Continue with the treatment I’ve been on (Folfiri and Avastin).

2. Go on with maintenance chemotherapy (which would consist of just 5-FU and/or Avastin).

3. Stop treatment entirely and continue with monthly CEA testing and quarterly scanning. (To this, Josh shook his head because Josh never wants me to stop chemo.)

4. Undergo an exploratory surgery to confirm that there is no disease.

I had already pretty much ruled out option #2. There is no scientific evidence to suggest that maintenance chemo for colorectal cancer makes much of a difference in extending life. Indeed, the most recent medical data I have read suggests that while maintenance chemo may lead to a longer period of progression free survival (PFS or the time before recurrence or growth), it had no impact on overall survival (OS or the amount of time one is alive). My focus is on OS, not PFS (although Dr. A.C. cautioned me that PFS is arguably important in terms of maximizing overall quality of life). More importantly, I have significant doubt that maintenance chemo works on me. I was on two rounds of maintenance chemo in between completing Folfox and undergoing HIPEC and my CEA rose during that time. So, I think the answer is no to Option #2.

Of course, I also wanted the answer to be no to Option #1. Dr. A.C. asked me why I wanted to stop chemo. “Are you sick of coming to the cancer center? Are you sick of me? Why?” When I heard that question, I thought, Uh-oh. “I’m tired of treatment. I’m fatigued. I want a break,” I declared. “And I’m getting fat from the steroids – 10 pounds in 3 months is really not acceptable,” I added for good measure (even though I doubt Dr. A.C. is really concerned about my vanity).

Dr. A.C. called my HIPEC surgeon, Dr. D.L., on his cell as we discussed Option #4. “Hi D. This is A. I’m here with Julie Yip-Williams. Her scans came back clean and now we’re discussing what we’re going to do next…” I could only hear bits and pieces of Dr. D.L.’s part of the conversation, but the gist was that Dr. D.L. is currently in the midst of conducting a randomized clinical trial for post-surgical patients – I think only post-HIPEC specifically – to determine whether a second-look exploratory laparoscopy improves overall survival rates and he would be willing to include me in that trial. Such second-look surgeries are entirely not conventional and there are no studies (and certainly not in the colorectal cancer realm) to indicate their effectiveness or lack thereof. As I’ve said many many times, scans are notoriously imperfect at detecting disease, particularly in the peritoneum. A visual inspection is the absolute best way to detect cancer. While microscopic disease would not be visible, Dr. D.L. would be able to take scrapings and test for microscopic disease (although even such testing would obviously not be entirely conclusive for absence of microscopic disease). Dr. A.C. said that if I underwent the exploratory surgery (something he is in favor of) and there was indeed no disease, microscopic or otherwise, then “there would be a stronger argument for stopping chemo.”

Dr. A.C.’s words implied his preferred course of action. But Josh and I had to ask him directly, “Irrespective of the data, what would you do if it were you?” I tried to make it more personal, “What would you do if you were advising your daughter?”

He wouldn’t address his daughter but rather said, “Irrespective of the data, I would keep going.”

“For how long?” I demanded.

“I don’t know,” was his unhelpful response.

“Why?” I wanted to know.

It’s clear that Dr. A.C. believes there is still microscopic disease (as does Josh). If my blood counts were bad, if I were having horrible side effects from the chemo, his recommendation would be different, but I have tolerated chemo extraordinarily well, at least physically. And if that is the case, for him, there’s no reason not to continue chemo to gain the greatest advantage against the cancer. The reality is that if the cancer grows to the point where it is a visible tumor, it becomes a much more difficult situation to address and the road becomes that much more challenging.

This is not the recommendation I wanted to hear. The possibility of an exploratory surgery I’ve known about since my HIPEC surgery, so that I’m prepared to consider and even undergo. Obviously, there are risks with any surgery, but this would be minimally invasive and I would be in the hospital for only one night. The peace of mind and the information that would be obtained would outweigh the surgical risk. But the suggestion that I continue on full-blown chemo even while there is no evidence of disease (NED or in remission in outdated parlance) is something I had not considered. Indeed, I’ve not heard of anyone doing full-blown treatment indefinitely after achieving NED status. There are no studies about its effectiveness. There are no recommended protocols for people in my position with my facts. The truth is that I had a lot of lymph node involvement at the time of my first surgery – 12 cancerous lymph nodes out of 68 removed is a very high number which means I have been and am at high risk for recurrence. Add to that the fact that my metastases have been to the peritoneum, an area with limited treatment options and prone to rapid and uncontrolled progression, and I can understand completely Dr. A.C. inclination to stay the course.

Dr. A.C. is right that I have tolerated chemo very well physically. The neuropathy I once experienced because of Folfox (something that many are plagued with for years after finishing Folfox) is entirely gone. I’ve not missed a single treatment because of low blood counts. I’ve no needed a single shot. I continue to work out and feel relatively fit. Last week, I took two classes back-to-back, boot camp and then barre burn, and I continue to spin once or twice a week. No, I’m not anywhere close to my former fitness self, but I can certainly still hold my own in even the most rigorous classes. As I said earlier, many of the most concerning side effects have eased or stopped altogether. The nausea and the fatigue during the first couple days after an infusion are the most trying, that and the weight gain. These physical side effects do impact my mental state. I do have a fair amount of mental fatigue and for that reason I would very much like a chemo break.

I suspect that one of the reasons for how well I’ve tolerated chemo is my refusal to view chemotherapy as a poison.  From the outset, I’ve viewed chemo as my most powerful weapon in this war.  I’ve accepted it into my body and the collateral damage it might cause.  I’ve respected it and been grateful to all those who have sacrificed their lives so I could have it.  My views about chemo are not the norm.  Most view it as an enemy almost as bad as the cancer..

On Wednesday, Josh and I will see Dr. D.L, whose opinion will be invaluable. With his input, I will have a lot of thinking to do in the next few days. This is a major decision point at which I must again exercise careful deliberation and yet also go with my instincts, for there is no clear correct answer. Both Options #1 and #4 are unconventional moves to make; it would constitute forging a new, untried path. I’m reminded of what I said in my speech the night of the Cleary fundraiser. In order for me to beat this cancer, I have to be exceptional. Maybe, Options #1 and #4 are a necessary part of meeting the standard of exceptionalism I set for myself. Maybe the price I must pay for a longer life is enduring some pain and hardship now so that I can be spared later.

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8 Comments (+add yours?)

  1. Bill Ide
    Oct 12, 2014 @ 10:21:36

    Still tough decisions, but incredible progress. You show well how important positive energy can be!

    Reply

  2. Chrissy Rice
    Oct 12, 2014 @ 10:38:35

    God bless you my dear Julie. I will pray for discernment for you and Josh. Like your doctor I too believe that you are truly exceptional and your strength of purpose is one that so many people will benefit from.
    Chrissy Rice

    Reply

  3. Barbara Gettelman
    Oct 12, 2014 @ 12:01:03

    Julie:

    You are indeed most definitely exceptional. A trail blazer for all of us on how to live an examined life. Thank you.

    Barbara Gettelman

    Sent from my iPad

    >

    Reply

  4. Vivian
    Oct 12, 2014 @ 14:44:58

    Julie, hugs and prayers as you weigh this important decision. Vivian

    Reply

  5. Sandy Dowling
    Oct 12, 2014 @ 16:24:02

    Tough decisions. You just have to go with your intuition. Stay strong.

    Reply

  6. jjaug17
    Oct 13, 2014 @ 14:06:06

    Hallelujah indeed! You’ve already made the most important decision of all, to take active control over your own health.

    Reply

  7. AM
    Oct 14, 2014 @ 10:50:33

    I will be thinking of you as you make this difficult decision. You are smart and exceptional in so many ways – I am sure you will do what is best for you and your family.

    Reply

  8. Domitilla
    Oct 16, 2014 @ 07:35:11

    If it were me, I’d go on with the chemo. You tolerate it well and – as you said – it’s the most powerful weapon in this war. But it’s you, not me. Whatever you choose, it will be the right thing to do. You don’t need to act exceptional. You simpy ARE exceptional, Julie. Love, Domi. ❤

    Reply

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