Round 12

Tonight I begin my last round of chemotherapy.  I took my first dose of Temozolomide on March 16, 2015. I can't wrap my mind around all of the emotions this brings up for me.  14 months of pills and appointments and nausea and exhaustion.  So many nights of staring at these pills trying to find some way to avoid taking them, but at the same time knowing that if I don't take them, I might be filled with regret.  Rearranging my eating schedule, explaining to my kids why I can't play with them or why I need another nap.  Regretfully declining field trips and birthday parties to avoid germs.  Making up stories about good guys and bad guys fighting in my brain.  Most of all, pushing through my body's desire to collapse into my bed because I needed to be a mother and a wife and because I wanted to feel alive more than I wanted to let the medicine and the treatment take over my life.   I keep the doctor's words that those who  "keep life as normal as possible fare better than those who live as a sick person" lodged in the front of my thoughts.  And right behind that mantra I hold the words of my departed friend Becky telling me that to keep it normal puts an awful amount of pressure on a patient to work doubly hard and that if somehow you can't manage to keep things normal you are hurting yourself.

But more than anything tonight I feel such a great hesitation to rejoice.  The hesitation has nothing to do with my lack of joy to be at the end of this part of my journey.  It has more to do with my greatly increased knowledge of the interconnected-ness of life. I don't feel the freedom of taking the last pills because I know that there are people all over the world staring at their treatments wishing they could be anywhere else.  Tonight I share in their duplicitous feelings.  The promises that these treatments will help, when in reality, no one really knows the complexity of these diseases and what will ultimately cure them.

I will never again claim to understand what someone struggling with illness feels like.  I will never say "I know how you feel," because I don't. Even if two people have the same diagnosis and treatment, their life circumstances, their bodily response, and their emotional state will vary tremendously.  We can never know how another person really feels and it is best to be supportive, nurturing and loving, while leaving the cheap quips out of the discussion.


I feel so much more able to identify with a deep ache of diagnosis, of the unknown, and of dangerous wandering thoughts.

But more than all of this, I feel connected to a wider range of emotions.  I feel pain more deeply, fatigue more fully (even more than with a newborn!), fear with more tears, sadness with a wider lens, joy with a brighter spirit, humility with my pride taken down quite a few notches, community with a new sense of importance,  and hope, perhaps not a hope without some fear still tethered to it, but the hope that each new day brings.   The Lord's prayer says "Give us this day our daily bread."  I've heard it said many times that we receive bread enough only for today.  Not enough to store aside for tomorrow, not leftovers to horde from yesterday, but just enough for today.  When we try to live on more or less than our provision, we are left longing.  So, when I speak of hope, I have enough hope for today and enough thanksgiving to see what is right in front of me.

I suppose this is some sort of launching pad.  I've seen many people have a last day of chemo celebration, but for some reason I don't feel connected to that because I know so many chemo treatments are so much harder than mine.  There is no great port removal or end to infusion centers.  For me it is just the joy of throwing away the last bottle marked "danger" that litters my bedside table.

I'll move into a new part of my journey.  My appointments will be less frequent.  I'll be monitored less closely.  I'll try to live a life less defined by this diagnosis.  Each and every day will be a day farther away from this part of my life which has both positives and negatives.  I will likely begin to slowly slip into the normalcy of taking life for granted.  The medicine and the doctors keep the frailty of life forefront.  It will be a challenge to remember the joy I felt making my children hot dogs a few weeks post surgery, but perhaps I can find a way to rejoice in the fact that I don't need to notice routine things as special, but be grateful for routine itself.

So, tonight as I begin my last round I welcome the beginning of a new end and I pray for the millions of people, some of whom I am blessed to know, who are still trying to maneuver the unsteady path of treatment.