Friday, September 28, 2012

Settle Down, Girl

Monday is another PET Scan day. I’ve been on a schedule of one every three months. That means that once every 90 days I have a particularly rough week of worry, worry, worry leading up to the test. I’ve written about this many times before, but scanxiety is crushing and warrants some attention.

I try to get better at handling it, I really do, but the worry surrounding the unknown has a way of taking over. Remember getting nervous about a big math test in elementary school or a presentation you had to make to your classmates about Mesopotamia in eighth grade social studies? Well, take those stomach butterflies and instead imagine a sanctuary of them flitting around in your belly not because you’re worried about your grades, or if you’ll pee yourself in front of the class, but instead worry over whether the killer inside of you is on the loose – again.

I just want to know the results so we can have that data to make the most informed decision about next steps. I hate not knowing. I hate that the PET Scan results are so finicky. I hate the crazy thoughts that creep into my head: “It’s spread to your brain … it’s pressing on your lungs … it morphed into a deadly new strain we’ve never seen before … your left ear lobe will fall off.” They’re silly and unfounded, but happen nonetheless. They come mostly in the form of nightmares, though sometimes derail my thoughts during the day pushing me to tears or to a ball on the couch not wanting to talk to anyone or do anything. Luckily, I’ve been busy living life, so I haven’t conceded to the beckoning couch (unless it’s happily snuggled with Craig and Sammy watching Honey Boo Boo Child shake her belly fat).

As they say, patience is a virtue, but does the virtuosity have a cap? Having to be patient in life-or-death situations like this for more than three years now is getting a little old. F patience. The real virtue is that I have the opportunity to get this test done. I am still here to be able to lie once again in that whirring tube. To have my patience tried in the meantime just comes with the territory. I need to remind myself how grateful I am to be here and to have the technology at my fingertips to most accurately assess the state of my disease. Not everyone is so fortunate.

I’m trying to stop hypothesizing because it does me no good. I’m a very forward thinker, I’m an idealist, but also logical, and I like to string things together to solve a problem or make a prediction. Most of the time this serves me well in figuring out complex scenarios (especially medical ones), but sometimes my tendency to do this is what drives me to insanity. I need to just let it go and let it be. Whatever, man (said in stoner voice). I work on that one all day, every day.

I feel better than I ever remember feeling going into a PET Scan. [My therapist tells me that I’m supposed to stop there, to be content with that and not trouble myself with what that may mean]. But, remember, I like to connect things. I’m a figure-it-outer. So I create scenarios:
  • I’m feeling pretty normal and pain-free so maybe that means all the cancer is gone, that I’ll have a completely clear scan and totally shock the medical world. I’m feeling this well even without the high-dose steroids I had been on, which reduce inflammation, hold back Hodgkin’s growth and give a false energy boost. That must mean something good. 
  • However, I’ve been told by some docs that I’ll always have scarring on my bones from all the damage which will prevent me from ever having a squeaky clean scan. What if they keep treating me and it’s really not cancer at all, but just residual clean-up showing up as inflammation on the scan results?
  • But, then again, maybe I just want to think I’ve been feeling well when in actuality I’ve been incredibly fatigued and my mid-back has been a little sore, so maybe the cancer is trying to creep around on my spine again.
  • But, I did just join the Y and have taken a couple Zumba classes that may be tiring me out.
  • The anxiety exhausts me as well – I’m probably just wearing the mental and emotional fatigue physically. 

You see? All of that hypothesizing is exhausting. I can’t figure it out. Nobody knows the answers. I just have to wait until Monday in Manhattan when my team and I can look at these pictures for some clues and direction.

Here’s what we’re looking at:
  • Has the inflammation in my lungs reduced after this long steroid course? Does this answer the puzzle of whether the inflammation is exacerbated by the SGN-35 infusions? I’m down to 5mg of Prednisone now. Occasionally I have a cough, but I believe it’s more related to the nasty cold I had over the past two weeks, which I’ve finally kicked. Does this mean my lungs will be okay?
  • Are the minimal sites of disease stable? Reduced? Growing?
  • Any new areas of disease involvement?
  • Am I cancer-free enough to be able to move forward with a Donor Lymphocyte Infusion (DLI), which would give me a booster of my sister’s Natural Killer Cells? Do I want to do this and risk the possibility of Graft vs. Host Disease manifestations?
  • Do I continue with more doses of Brentuximab Vedotin (SGN-35)?  If so, I’ll get one on Monday after we make a decision based on the scan results. 
Maybe you can understand why awaiting these results makes me mildly bat-shit crazy if I let it get to me. Fortunately, I have another wedding tonight for one of my very special longtime friends, Thea, where I’ll get to eat and dance the night away in celebration of her, in the company of some of my very favorite people in the world.

I’ve had Philip Phillips singing on repeat in my head this week and was reminded that my sister-in-law, Rachel Diamond (I have to use last names as now I have two sisters-in-law named Rachel!), told me she thought of me when this song first came out. It's become a little mantra now:

“Settle down.
It’ll all be clear.
Don’t pay no mind to the demons,
they fill you with fear.”

Okay, Phil. Let’s do this. Take me home. 


  1. Karin, I love your writing and look forward to each new addition. You so eloquently capture what every cancer person feels. I read you posts and say Yes! Yes! That's how it feels! I have sarcoma...stage 4. Every scan paralyzes me with dread. The doctors could tell me anything...from NED to innumerable mets in my lungs. It's all possible. And the horrible. I am going to Dana Farber where I am participating in a vaccine trial. I wish you peace until you are on the other side of knowing. Warm best wishes, Jackie

  2. I just wanted to let you know that I think you are an incredible writer! I once read almost your entire blog in one day because I was so captivated by your strength and humor. You really give an amazing perspective and make the reader feel like they are right there with you. When I was going through treatment, you inspired me to start my own blog!

    I'll be thinking of you on Monday as I'm down the street at Columbus Circle getting a routine CT scan as I'm in remission from non-Hodgkin's right now.

    Take care and enjoy your day today :)

  3. Oh boy.Now you've given me vicarious scanxiety for today.Hoping for news that will leave you relieved and content:-)

  4. I know the feeling you mean but on a much smaller scale. Keep up the good fight.