Reflecting on Four Years

When my mom takes notes at doctor’s appointments she likes to star and quote the good stuff. She loves when doctors give me positive comments and wants to be sure I remember them. Often, I don’t even hear them because I’m so focused on the treatment and brush off the compliments on my progress.

Case and point was last Wednesday’s check-in with Dr. O and team who have been overseeing my care from afar while I receive the infusions locally with Dr. D. In my notebook ­ – the third one we’ve filled with appointment notes since diagnosis – there are a few quotes by Dr. O that my mom felt important enough to record:

“Mucho Fantastico!” (after hearing how my lymphoma pain and b-symptoms have diminished)

“You look great!”

“You are closer to normal than you think.”

The last quote did resonate with me. He said it after I started peppering him with questions about what my restrictions are and getting answers back that seemed like I had total freedom as long as I just listen to my body. I am not used to this after so many years of feeling like I’m shackled.

He got where I was coming from when asking about Zumba and yoga and just simply said: “It seems like many of these questions are related to whether you’re normal or not and you are closer to normal than you think.”

This was a dream phrase for me to hear, but still hard to process. Last Wednesday, May 8, marked four years since my diagnosis date. As I was in NYC for my appointment and distracted by everything that entails, it completely slipped my mind until I got home after a long day and Craig greeted me with: “Happy Cancerversary.”

Woah, gut check. Four years. I can either say:

“I’ve been going through this awful shit nonstop for four, long years.”

Or, I can say: 

“I’ve been keeping ahead of cancer for four years and thoroughly enjoying my time despite disease and its baggage.”

Both are true, but this year I lean much toward the latter. It’s been four years and I’m still alive – that’s kind of huge. I rarely get angry about my situation anymore. I’ve come a long way toward integrating it into my life and not letting it take over my life. I’ve learned over these four years that it’s all about balance. Balance the bad with good. Balance the down days with excitement. I slip up – often – and lose my focus, but I’m proud of the coping mechanisms I have found to bounce back.

I don’t know if I quite think of myself as “normal,” especially since I’m still getting weekly chemo injections, but am ecstatic that my oncologist even entertains that concept. I am comfortable with thinking of myself as “more normal than not” and that opens up a whole lot of doors for me, which brings a lot of uneasiness and a lot of pressure, too.

I am trying to find my place in the great, big, wonderful world. Sometimes it’s difficult when I am feeling better because I want to go out and do everything: pick up work, learn an instrument, get into pique physical shape, conform back to my old life or everyone else’s life, then I end up in the ER with shortness of breath and heart palpitations and I realize that I’m not like everyone else. 

Am I sick or am I not sick? Can I move forward or not? There’s no clear answer and I work very hard not to get caught up in analyzing it. Some things are just unknown. My fate – anyone’s fate – is one of them. I just happen to have mine staring me very close in the face all of the time, so I think about it more than most. 

Whatever will happen tomorrow, or next month, or four years from now, today I feel well and for that I am grateful.

At the beginning of 2013 I set my intentions and vowed to frame my year around the John Borroughs quote: “Leap and the net will appear.” Looking back on four years, I’d say that’s appropriate for where I’m at.

I’m making leaps. Big leaps. Small leaps. Planned and unplanned leaps. So far, a net has always appeared and with each successful landing my confidence has made its own leap upward – little by little. Jumping isn’t so scary anymore.

ReBirth Day 2012

June babies blowing out the candles to mark our dirty 30.

I turned one year old this past Saturday, June 16. One year old about three or four times over now? I feel so mature in my old age having survived one year post donor stem cell transplant, never mind my two autologous transplants in 2010. In the eloquently raunchy lyrics of Eminem’s “Cinderella Man” – a line that’s been stuck in my head for months now: “By the skin on my teeth and the hair on my nuts I skated by.” So true, Marshall, so true. Thank the universe for that figurative teeth skin and nut hair because sometimes I felt that was all I could hold onto.

The whole week leading up to the anniversary of my Day Zero – the day my sister’s stem cells were sent into my blood stream – was very emotionally draining. I didn’t expect to have such a hard time with the approaching day, but in reality I lost much sleep over it. I had restless nightmares with flashbacks of last year at this time when my mouth was so full of open sores from the chemo that it was pooled with blood for days, smears of red coating my teeth. I’d bolt up in bed with my heart pounding remembering waking up from the anesthesia too early and hearing the rush around me as interventional radiologists worked to jam a new catheter down a vein in my chest yelling for pressure and a transfer table as a bag of my mother’s donated platelets dripped into me in an attempt to clot my blood.

To say I went through some trauma would be to put it mildly. Unfortunately, those memories still haunt me, and I don’t know that I’ll ever process it all. Fortunately, I have so many positive memories of this past year that most of the time they overshadow the scary parts. It was those memories and the immense amount of gratitude and disbelief I feel that I gave attention to on my first re-birthday.

Craig and I hosted a huge shindig at our home to celebrate this re-birth and both of our 30^th birthdays which happen this month. There were more than 100 of the most special people in our lives here to celebrate with us. We had an Extreme Octagon inflatable complete with adult jousting and boxing matches, a taco truck dishing out fresh creations, and a live band – Organized Chaos – consisting of an incredible group of guys from T’Ville and the surrounding area who rocked the lawn. We also took up a collection for the American Cancer Society’s Hope Lodge NYC, which was home to us all last summer and also this spring when I was in the city for radiation. Everyone’s generous gifts of needed living supplies for the facility filled a HUGE patio furniture sized box of goods that we can’t wait to deliver.

It was an incredible and beautiful evening after a rough afternoon spent talking myself out of crying and pushing myself to enjoy and relish in my accomplishments rather than dwell on the difficult memories of the past. It’s over. I’m past it. Maybe the cancer isn’t completely gone, but I’m fucking here and alive and feeling good and that’s pretty damn cool. Once the party started there was no way to dwell on all of the bad when surrounded by so many fun, positive, smiling people that have been there for us throughout our lives and especially throughout the most difficult times. I don’t know how we got to be so fortunate, but I’m so humbled by the people in our lives.

This past year has been a year of rebuilding. There is the obvious evidence of that: my formerly bald head is now covered in nearly three inches of baby fine curls and I’ve gained back 15 pounds of mostly muscle (I like to think!) filling in the scary bony look I sported last summer and bringing me back to a comfortable weight for my frame. I got to standing on a surfboard and I’ve been active and feeling healthy. I suffered with a bout of bronchitis over the past two weeks, but now I feel fine and my cough is completely gone – just like a normal person. I’d say that’s a pretty tangible sign that my new immune system is alive and well. We’ve just got to get that baby trained to go after those invading lymphoma cells. I have confidence that it will.

But more important than the physical aspects is how far I’ve come mentally and emotionally. I’ve experienced so much growth over this past year. I suppose coming that close to death kind of forces you to become very intimate with your self and very aware of the loved ones that surround you and the brevity and unpredictability of life. My close relationships are deeper than they have ever been as I find myself opening more and wanting desperately to give back the love that I was showered with during my most difficult times. Challenges seem less daunting and fear is no longer an issue. I’m more accepting of where I am at in life and more appreciative than I’ve ever been of my body and its incredible resilience. I firmly know who I am, what I stand for, what I’ll tolerate, how I want to spend my time, what I need and what I don’t need in my life. These realizations and self-awareness are absolute gifts.

I don’t pretend to have it all figured out. I never want to have it all figured out because if I did, what a boring life that would be. Every day I strive to discover, explore, challenge, learn, digest, and mostly just take it in and “be.” I’m fully aware that on paper, I’m not really supposed to be here, but I still am, and I’ll never lose sight of that and the responsibility and humility that simple fact carries along with it.    

Putting my game face on in the Extreme Octagon. 

Tacos for everyone! Showing a little bit of Texas love in honor of our time in Houston. 

We are Lucky Tacos fo' sho'.

Sammy came over to receive the "Happy Birthday" song with us. 

Our peeps.

Warning: Explicit Lyrics. Sometimes expletives are the only way to describe the craziness of life, and this song has been a bit of an anthem for me. When I want to get all pumped up it does the trick and is incredibly appropriate right about now.