The Unexpected Light

In weeks following my cancer diagnosis, driving was hard.  Not the physical act of driving, although my spatial awareness skills are generally quite lacking.  Driving was incredibly hard emotionally.  It was hard to stay distracted while driving because the radio plays the same music over and over and I couldn't focus on npr.  I tried to call people while driving but that wasn't always possible.  I dreaded driving because that's when all the scary thoughts about cancer, life expectancy, and prognosis would come up in my mind.  It was hard to push them away while driving.  Driving was excruciatingly hard until I started listening to "The Pasture", an amazing instrumental song by Elephant Revival, on repeat.  This one song made driving tolerable again.  This song also made going to sleep possible as Janelle and I would listen to it on repeat to help us fall asleep.   Music has such amazing powers. Transformative powers.  

Elephant Revival - "The Pasture" 

Music has been a light during this very dark time. I've felt the most like ME when at live music shows in the last couple months.  We've had the pleasure of seeing Catie Curtis, Crystal Bowersox, and Elephant Revival in the last two months.  I want to thank these musicians for being my stars during this dark sky period of life but I feel like I'm at a loss for words.  How can I express how they've made my life brighter (a notion I didn't even think was possible at first)?     

In addition to music, I'm finding that my people, in their acts of kindness, thoughtfulness, and expressions of love, have transformed this time for me.  This time that I thought would be filled with dread, hopelessness, and despair is filled with laughter, happy tears, smiles, joy, and deep gratitude.  I don't have the words to express how thankful I am for the light and brightness people have brought me.  How do I tell Elephant Revival how much their song meant to me in September and still now?  How do I tell Momastery that her blog renews my hope in humanity daily?  How do I tell Janelle that her amazing love wraps me up, keeps me safe, and never lets me down? How do I tell my Mom and Dad that their love and support keeps me strong? How do I tell Tara that her book on her cancer journey probably changed mine?  How do I tell my friends that their voicemails, cards, texts, and emails literally make my days more tolerable and even joyous?  How do I tell Di that her cards always come at the right time?  How do I tell my babysitting moms that the pictures of their kiddos bring smiles to my face, which I didn't think was possible?  How do I tell my principal that her bird sock picture brought tears to my eyes?   How do I convey to my students that their smiles and cards brighten even the darkest of days?  How do I tell my school community that their ongoing support reminds me of the second home I have there?  The cards, texts, pictures, thoughts, gifts, quotes, and prayers I get truly bring joy to my heart- joy I didn't even know was possible after a cancer diagnosis.  I haven't figured out how to express my gratitude to these people and groups.  Words don't feel adequate. 

These days, driving is no longer as hard.  Neither is sleeping.  My initial panic and fear that consumed me have subsided into more manageable forms of anxiety and sadness.  I'm still struggling to understand what it means to have a "treatable but not curable" cancer. A study just came out in October on the overall survival time for young adults with follicular lymphoma.  They found that the median survival time was 24 years.  I can't decide if this gives me hope or forces me to see numbers that are feel unfair.  I'm aiming for 49 years.  I plan to live until I'm at least 76 (or 93 for Janelle).  I've asked my oncologist if this hoping is unrealistic.  She says that it isn't- that we don't know what medicine will be available to me in five, ten, or fifteen years.  Hopefully science will catch up.  Maybe in ten years I will have a cancer that is curable.  Who knows.  Anything is possible.  Some days this hope for medical progress turns me into a frantic person who wants to dedicate every breathing minute to raising thousands of dollars for lymphoma research (since my life/longevity kind of depends on it).  But usually I remember how important living is.  I still think I want to raise serious amounts of money for lymphoma research in the near future but with a reasonable goal and less desperateness. 

Recently, at a YAP (young adult program) event at Dana-Farber I connected with a young mother who beat breast cancer a couple of years ago.  Her name is Tara Shuman.  She blogged throughout her entire journey with cancer and eventually turned that blog into an amazing book.  Last week, I bought her book on Amazon and devoured it in two days.  Tara's words have given me so much comfort this past week and continue to make me feel less alone on this journey.  Her words have helped me process what I'm feeling.  If you want to know more about what I'm feeling, head over to Tara's blog or buy her book.  She really highlights the emotional rollercoaster, the thoughtful processing, and the amazing rallying of people that comes with a cancer diagnosis.  Also, if you want to know how Janelle and my meeting with the fertility specialist went, I'm not ready to talk about it but I think Tara may have met with the same apathetic doctor.  She does a great job of summing up the horrible experience. 

 Tara's Book - Hope Is a Good Breakfast

Tara's Blog - Tara Beats Cancer

Also, Storm cat is amazing. Yes, we are crazy cat ladies.   

Some helpful articles and resources on living with a chronic cancer:

Amazing empathy cards for those with chronic illnesses

What it means to live with a chronic cancer - The New Cancer Survivors

Living with Cancer, Chronic Not Cured