April 30

Dear Friends and Family, 

It has taken me some time to muster up the energy to post an update here. In short, things aren’t going so well. Dad sleeps most of every day. Sometime in the past few weeks, he has moved from the sunroom (where he used to doze and read throughout the day) back into the bedroom. His exhaustion is visible in the time he spends sleeping, as well as the time you spend with him when he’s awake. 

When we help him into the living room, it is usually for meals and coffee, making it a twice-a-day occurrence. He now needs hands-on assistance to move around: from car to wheelchair, from bed to kitchen. Though mom, Carol, and I agree that a wheelchair would be the safest way for him to get around, he’s holding tight to his freedom from walking around – as precarious, wobbly, and harmful as it may be. I believe he reasonably sees the move back to the wheelchair as a permanent transition.

How do I describe dad’s presence when he’s awake? In the past I’ve used words like “foggy” to portray the experience of dad as the tumor has grown back. He still feels that way, the only difference is the degree to which the fog descends. I’ve started to imagine what the tumor’s doing inside of dad’s brain. In a lot of ways, dad is worse each day, which makes sense when you imagine the tumor growing into different parts of the brain. One day, something – maybe re-developed motor control of the left side post surgery – is simply absent. 

Dad’s much quieter now, and when he speaks it is with a raspy voice. I’m not sure what might explain the raspy voice – maybe that it’s straining to do the very act of speaking these days. He still manages to put in requests for coffee with ease – some things never change!

The downward trend continues despite two rounds of chemotherapy, and an additional chemotherapy (Avastin) treatment that we started last Friday. The experience of taking dad to the Avastin treatment is worthy of description: the treatment is IV, so mom, dad, and I went into PAMF for the transfusion. The Transfusion Area of Radiation Oncology was something like you’d imagine if you were to think of the space where people get chemotherapy. Up until this point, dad has taken his chemotherapy via pill, so we’ve been fortunate enough to dodge the Transfusion Area of PAMF. The room is huge, with small areas sectioned off for each patient chair + a chair for his/her caregiver. This space functions as a space for people to sit/sleep through their various forms of IV chemotherapy treatment. Dad, mom, and I sat there for the four hours it took for dad to receive his additional Avastin treatment. I found the experience depressing, but peaceful and relaxed. Dad and I shared some easy, relaxed time together, though he slept through most of the treatment. By around 2:00 in the afternoon, dad and I were on our way out of the hospital. 

After Avastin, I drove dad to Peet’s for a celebratory coffee – he loves these. It’s both an excuse to grab some extra coffee and a way to commemorate moving through another hoop in his illness. It was very rainy outside, and dad was already too exhausted to move around safely without the help of a wheelchair. I asked him to stay inside while I grabbed his drink (large whole milk latte with whip cream and chocolate – viva la vida). When I got back into the car, dad said, “Oh, I’m so glad you’re here. I need you to find my coffee, I don’t know where it is.” Confused, I handed him his coffee, which resolved the confusion. From this small interaction, it’s more clear to me how fuzzy dad’s perception of the world is. I don’t think he has much of an awareness of time, and I’ve noticed that he is struggling to keep track of conversations. 

Mom and I see that dad needs 24/7 help, and are straining to organize the extra support. I’m worried about mom: she’s sick right now and in full survival mode. We are so, so grateful for the stream of visitors who have helped cover the times we’re unable to handle ourselves. Danny is a staple at the house, as are Carol, Shingo, and Curt. 

Miles will get home on Friday. I breathe a huge sigh of relief just thinking about his return. The past few months have felt like years! Maybe his presence will ease some aspect of this situation. 

Thank you to all those who sent in videos and photos to my email. I plan to share these with dad when both Hunter and Miles are in town. 

With gratitude,
Mikaela

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