No. 8

Today was chemo treatment number eight. It feels like a turning point-based on having very good test results after chemo treatment four. Of course, I hope that today’s was the last one. The effects were worse this time than with some of the other other infusions. More belly cramping and now I’m feeling drained and fatigued. Hopefully those will go away in a few days. There’s a silver lining- my oncologist permanently removed oxaliplatin from the infusions. It’s the drug that causes cold sensitivity, muscle spasms and suppresses production of platelets. Last week I wasn’t able to have chemo because my platelets were too low so I got the week off (a “chemo vacation”). That worked out really well, as I was able to enjoy and participate in my friend Lindsay’s wedding over the weekend and not feel awful.

I have two tests coming up- a PET scan on Friday and an MRI on Sunday- to see what is left of the tumors/ cancer cells and all of that. Nate and I are planning on going camping in Maine for a good part of next week which should help keep my mind off the results. I don’t feel as nervous about the results of the tests this time as I was the last time. But there’s a niggling feeling of not wanting to expect too much, either. “Prepare for the worst” says the naysayer in me.

Nate and I are having fun planning a long road trip to Idaho in July. We have been in wait-and-see mode for nearly 6 months now, and our lives feel stuck. We are tied to Boston, tied to this schedule, tied to dripping chemicals, tests, and a cycle of planned physical lows. My intention is not to complain. I am very grateful for the wonderful care that is available to me. But I’m ready for a good, long change. Looking forward to the road trip gives me joy and an anticipated, much-needed taste of freedom.

Tufts held a memorial service today for children who were treated there and passed away. It’s special that they did that. Most of the people there appeared to be medical professionals from Tufts. There were only a few families, though a lot of names of children were read. A number of doctors or others healthcare workers provided songs and readings, and for each child, placed a beautiful long-stemmed red rose in a big vase. I appreciate that the medical professionals care and take time to remember and honor the little lives that passed- some of them so quickly. A memorial service acknowledges their significance and says “They mattered”. I am finding that truth, and others’ acknowledgement of it, to be healing. Since holding our small memorial service here, planting some trees and the babies’ ashes, I’ve had more peace than before.

How I Am

At my friend Lindsay’s bridal shower this past weekend I saw quite a few friends who I haven’t seen in a long time. A number of them asked how I am feeling. I answered how I’m feeling physically: “Great!”. It’s true- for the last 7 days, or since the effects of the chemo wore off, I’ve felt completely normal. The only indication that anything is wrong is my thinning hair (ugh) and the bumps of the port beneath my skin. Both of those are related to chemotherapy. Apart from the treatment and it’s effects, I have no sign of the disease except what can be seen in imaging tests. So it’s somewhat unreal that I have stage IV cancer, which sounds so serious out loud. I don’t think about it often and prefer to joke about cancer, if I talk about it at all. Gallows humor- it’s a relief to laugh about something that’s potentially life-threatening.

If I answered my friends’ question based on how I’m doing emotionally, the answer wouldn’t be so succinct. It’s hard to honestly give words to how I’m doing inside at any moment. It’s been a difficult couple of weeks since passing my would-be due date. Since then, the absence of our little ones has been acute. The empty room, our empty arms are as present in my mind as a dark, gaping hole in the floor. I know the reasons why I am going to be OK. I know that this isn’t going to break me. But I’m not OK yet. We are not OK yet. Nate throws himself into work with amazing vigor, but is tired no matter how much sleep he gets. It’s a weariness that’s emotional as much as physical.

In these past difficult weeks I’ve found a dichotomy in my mind. In one hand I hold God’s word that declares His sovereignty, His promises, the reasons for praising Him and much more. At the same time my other hand makes a fist and shakes it at God, saying “YOU! You did this to us”.

At church a few weeks ago my pastor taught about Jesus having the power over life and death- “I am the resurrection and the life.” John 11:25 He spoke those words just before going into the tomb of his friend Lazarus and causing him to live again. It is beautiful to read of how sad Jesus was over the death of his friend. He cried and was “deeply moved.” I wonder if he was also angry with death and what it does to us- cheating us of a life that we expected to have, forever closing the door of that relationship. As Pastor Dana pointed out, this feels wrong to us because death was never meant to be.

Although I know it makes no sense because they are one and the same, I mentally shake my fist at God and at the same time am captivated by Jesus’s beautiful humanity. He came here as one of us and experienced the full range of humanity, including the pain of losing a loved one, in order to win our hearts. He knew that we have a difficult time relating to God the Father, with his omnipotence, omnipresence and omniscience, his existence outside of time. So Jesus came to us humbly and gently and shared our sorrow. If not for this, I would probably end up shaking my fist at God forever.

 
Written word, especially poetry, is my favorite form of expression.

 
Restless Angels

Gone are our restless angels, drifting like
gulls or smoke through the trees.

Our empty arms hold burning memories- ashes
to ashes, love is a poor security.

We are all temporary- sparks
and smoke rising through far-off trees.

If I could I would steal the keys
to life and Death, Heaven and Hades.

Restless angels, come back to me.