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. 

Wednesday, September 26, 2012

A Shared Beat

Photo by Allison Hopkins Photography
“If you place two living heart cells from two different people in a Petri dish, they will in time find and maintain a third and common beat.” – Molly Vass

That ability for a heart to beat and swell with love at the feeling of another’s was so prominent recently as I watched my baby brother profess his love to his chosen partner on their wedding day. Translation: I was a blubbery mess as I watched Michael and Rachel exchange the vows they had written for each other in the perennial garden of Topsmead State Forest in Litchfield – a place that holds many treasured memories for my family. And then it happened again as I listened to Rachel’s sister and my sister give toasts and then choked through one of my own.

As tears started streaming down Rachel’s face as she recited her vows and as I saw my father’s eyes well, I too, could no longer contain my emotions and like many in the small crowd, reached for my tissues and tried to hold back the choking sobs. They were tears of sheer happiness for the true love that they found and at the honesty and openness by which they expressed it to each other.

The heart cell’s ability to find the beat of another’s is a scientific fact, but as Mark Nepo writes, that inborn ability to find and enliven a common beat is the miracle of love. It really is a miracle. How fortunate that as humans, we can actually feel what others around us are feeling, most especially those that we love. That depth of connection and empathy is an incredible asset unique to human nature.

We can rejoice fully in other’s triumphs and also feel each other’s pain. Knowing we’re all together on this crazy ride makes it that much more exhilarating. Being there to share the beauty and the challenges with each other helps to lift the burden of the bad and amplify the joy of the good times. Just a year ago, Michael was there caring for, cooking and spending the night with me at Hope Lodge. In 2012, we shared space on the dance floor while I admired his three-piece suit (complete with historic pocket watch).

Tuesday, September 18, 2012

Project Nature Face

Mission: Find potential faces in nature that need just a little attention for their expressions to fully come to life. Leave finished designs to be recognized and enjoyed by others hiking with eyes peeled. 

  • At least one facial part must be naturally occurring. Build off of that. 
  • No witness may ever see the work in progress. Must act nonchalant if someone is  coming along the trail and could potentially notice an organic cranial feature in your possession (i.e. leaf eyeball, rock nose, or stick mouth).

Participants: Craig, Karin, Sammy The Dog

Location/Time: Acadia National Park, Maine (various trails)/August 2012 

Response: Heard from no one ... yet. 

Results: See photographic portfolio below. These faces have not been airbrushed or digitally altered in any way. 

Friday, September 14, 2012

Dirty Melons

It was a particularly foggy-headed day. I had mustered the physical strength to get to the grocery store, but the mental capacity to handle it while there was certainly minimal. I understood that shopping that day would be long and arduous when it took me several attempts to separate two sticky shopping carts from one another and I had the realization that I left my grocery list on the kitchen counter.

I meandered through the produce section; all the greens and herbs and potato size options melded into one. I was overwhelmed and exhausted, incapable of making decisions. Grocery stores have long had that effect on me – sucking me in for hours touching things and reading things and wandering about. Chemo brain only compounded those tendencies.

Cantaloupes were on sale. I love cantaloupes. These would be delicious, I thought.

I picked up two of the orbs, one in each hand, squeezing them and sniffing them pretending that I had some clue as to how to tell if they were ripe.

I rolled them around in my hands looking for damaged areas, holding them up at my chest level to examine them with my eyes as my fingers poked and prodded their tough skin looking for weak spots.

In my melon-checking haze, I was holding onto these melons, trying to decide which one was prime for picking, for an excessive amount of time.

Suddenly a deep, deadpan voice from behind broke my fruity meditation, saying:

“Nice melons.”

I slowly spun around still holding both cantaloupe at chest level to find a middle-aged man in a jogging zip-up and track shorts sporting a huge, goofy grin.

I looked up at him dumbfounded, then back down at the melons – where sure enough they rested one in front of each boob – and realized the comedy of the situation. I felt my face flush the color of the nearby watermelon wedges.

“I’ve always wanted to say that,” the man said through his chokes of laughter. “I’m sorry, but the situation was just too perfect.”

At this, I burst out laughing too, both sets of melons bouncing along with my laughter heaves.

“Nicely done, sir,” I said back to him.

We laughed until we were both in tears and then moved on our way to continue our grocery shopping. After all that examination, a cantaloupe never even made it into my cart.

As we each traversed the grocery aisles on our separate food-finding missions, we kept passing each other. Every time one of us would turn the aisle corner and find the other there we’d lock eyes and start laughing all over again, muttering "nice melons" out the corners of our mouths. 

Tuesday, September 11, 2012

I’ll Throw You Off the Tappan Zee Bridge!

A while back while I was being injected with the radioactive dye that would reveal any cancerous cells within my body, a little boy was in the cubby next to me doing the same thing. He was maybe six years old. He did not want to be at the clinic that day either. None of us did, but he was able to articulate what all of us patients in the PET Scan pre-testing room were thinking with his cries and shrills that we all wanted to yell.

In between sobs he yelled at the nurse coming at him with the IV access needle:

“Get that thing away from me or I’ll throw you off the Tappan Zee Bridge!” He screamed the threat over and over as his mom tried to calm him down and the nurse continually tried to enter his vein.

“I’ll throw you off the Tappan Zee Bridge!”

“I’ll throw you off the Tappan Zee Bridge!”

I hear ya, little brother, I thought, feeling his pain.

It gets damn tiring getting poked and prodded and having to stand up to another round of treatment. I awoke yesterday knowing that I had to go in for a sixth infusion of Adcetris (SGN-35) and I was moaning to myself: “Don’t make me go. Don’t make me go.” But I had to also tell myself that having a treatment session to go to was so much better than the alternative. 

Tuesday, September 4, 2012


Two of my favorites: Mer and John.
Photo by the incredibly talented Alison Lassiter,
There was much love this weekend in a very tangible display of what happens when a lot of people come together around that love to make something beautiful. It was so wonderful to be a part of the wedding of one of my best friends who I've known since middle school to a solid, funny, deserving man who I now consider to be another one of my best friends (I'm fortunate to have many).

To celebrate with her family, who I have known since I was so young, and all of our girlfriends that have grown up together was an experience that I'll forever cherish. Every single person there was full of joy for them, there to have a good time and to celebrate and honor this amazing couple. We had so much fun with this extended group of fantastic people, instantly clicking with the friends they've gathered from all of their life paths. It's not at all surprising that these two have attracted a beautiful community around them.

It got me thinking a lot about love and the power of it. There was so much to go around: a regular love fest of happy tears and hearty laughs and hugs all weekend long from rehearsal dinner speeches to a post-wedding day school bus ride to the beach. It was real and beautiful and it made my soul so happy to stand there beside her to see her through this most important day in her life.

I truly believe that love can give us the strength to get through anything. Whether it's self love, love of a life partner, love toward a friend, a child, a pet, it's what carries us through the difficult times and what magnifies the good times. Everything is just that more beautiful when you can share it with someone you love.