A Lack of Black and White

The best teacher I ever had–Mr. Nall at St. Viator High School–had a saying that he loved to repeat to my seventh period freshman Honors Western Civilization class:

Freshmen want to see everything in black and white. But there’s a lot of gray in the world.

I first heard that bit of wisdom as a black-and-white-loving freshman in 1997. Who knew that it would be so applicable to me all these years later in my fight against cancer?

I realized this week that I have been pinning my hopes on black and white answers to the questions of what my PET scan test results would show and what the rest of the course of my treatment would look like. But everything is coming up annoyingly gray.

stopWith our lives on permanent pause since January, Theresa and I have begun to see a light at the end of this cancerous tunnel, when perhaps our schedules won’t be dictated by chemo appointments and our social lives won’t live and die by my precarious white blood cell counts. Nevertheless we’ve tried to remain realistic about making future plans, not firmly committing to anything until “after we get the PET scan results and know what’s going to happen.” Well, we have the PET scan results and yesterday we made the epic journey back to the University of Chicago to find out what’s going to happen…but somehow we still don’t know what’s going to happen. Here’s how it happened.

We left for our 8:30 a.m. appointment at 7 a.m. yesterday, made a quick Dunkin’ run and endured the nasty morning traffic and packed U of C parking garage that left us right on time for our appointment. After a much shorter wait than last time, we were shown to a treatment room where a nurse collected my vital statistics. We waited a bit more and then were visited by a bleary-eyed resident who asked me about my treatment and how I was feeling. He left and then eventually returned with Dr. Smith and another student who was shadowing her.

kenTrue to form, my regular oncologist had failed to provide Dr. Smith with the PET scan images and results as he had told us he would do, so we were unhelpfully starting at zero with this appointment. (Is there a Yelp for doctors? If so, my oncologist is getting a long review when I’m cancer-free. Be afraid.) As she examined me, Dr. Smith also asked if I was taking the anti-viral and anti-bacterial prescriptions that she had recommended to my oncologist to help me fight off any bugs when my white blood cell counts were low. What?! No, he hadn’t prescribed those to me. Strike two, Dr. Mirza. She also told me that U of C actually gives chemo to Hodgkin’s patients even when their counts are low (as long as they don’t have a fever) because it’s not actually dangerous with this type of cancer and it’s more important to get the treatments on schedule. Strike three, Mirza’s out!

On the upside, she examined my neck and said that she “couldn’t feel a thing” where Lumpy had once lived. We gave her the discs of the raw PET scan images (that we had fortunately gotten a copy of) and she began to examine them with her team. In looking at the slides, she said that it looked like something is still there in my neck, but without the full report, she couldn’t tell if it was still something bad or just scar tissue or something else minor. I’m assuming it’s not something bad, given the positive prognosis I received last week from Mirza. (Hopefully that wasn’t strike four…)

At any rate, she couldn’t make any kind of decision without see the report and once again laid out the options I have for the rest of my treatment. Here they are, in order of how little I want to pursue them:

  1. 6 rounds of chemo (conservative option)
    This sounds terrible to me. I’m in the middle of round 3 right now, so that would mean that next Monday would actually be my halfway done point and I would continue to receive chemo once every two weeks through the end of July. There goes the summer. Dr. Smith said that the other problem with this option is that it could be chemo overkill, which means that I’d be getting more of the poison than I need and I could develop other types of cancer from the chemo later in life. Fun!
  2. 4 rounds of chemo plus radiation therapy (conservative option)
    This sounds slightly less terrible to me, but still kind of horrifying, as Dr. Smith said that she’s not a fan of giving young people radiation therapy if it’s possible to avoid it. As she pointed out, they would be radiating (is that the right verb?) my neck area, which contains my carotid artery, salivary glands, neck muscles and other things that could later develop problems from the exposure to radiation. She also admitted that this is her own personal bias, however, and that radiation treatment has improved in recent years, so I should probably still talk to a radiation expert about it before dismissing it.
  3. 2 rounds of chemo followed by a negative PET scan followed by 2 rounds of chemo (more experimental)
    This is the one I signed up for and pinned my hopes to in January. The problem is that I still haven’t gotten a clear answer on what a “negative” PET scan means and whether or not I have one. Is it negative if something is still showing up? Am I still eligible for this form of treatment? I’m hoping that Dr. Smith will know after she looks at my actual results. The issue with this treatment option is that there is only five years’ worth of research to show how effective it is. While options 1 and 2 have something like a 99 percent cure rate, this one is more like 92 percent, meaning that cancer could recur in the not-so-distant future if I happen to be in that unfortunate 8 percent.
  4. 2 rounds of chemo plus radiation therapy (more experimental)
    Dr. Smith didn’t talk about this one very much, so I don’t think it’s likely I’ll be pursuing it. By this logic, I would already be done with chemo and just need radiation. Again, the research is still a bit thin on this option and the cure rate is lower.

Least black and white of all, Dr. Smith was alarmingly cavalier in seemingly giving me permission to choose the form of treatment I wanted to pursue going forward. She said that it if the scan was negative, I could really do any of them. At one point, she even said, “If you feel like you’re done with treatment, then you could just do the four rounds.”

This is not at all the definitive plan I was expecting to get from University of Chicago. This sounds way too much like a Choose Your Own Adventure book.

lumpyadventure

So where do I go from here? Well, Dr. Smith said that she would definitely contact Dr. Mirza to look at the report and that she would get back to us by the end of the week. I seriously hope she has formed a more substantial opinion on the future course of my treatment by then. I’m in no way medically qualified to make this decision nor am I psychologically qualified, as I would of course want to choose the option with the least extra treatment.

Once again I find myself needing to just trust in God and believe that everything is a part of His perfect plan for me: from the PET scan results to Mirza’s mistakes to the traffic on the way to the University of Chicago. I remain blessed with a pretty positive outcome no matter which adventure I choose, so I just have to play the waiting game and console myself with one of my favorite Bible passages.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Jeremiah 29:11

Stay tuned…

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2 thoughts on “A Lack of Black and White

  1. Emily and Austin April 23, 2015 / 8:40 am

    Looking forward to the next post and hoping you guys have some more answers. Until then, Amen to Jeremiah 29:11!

    Liked by 1 person

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