When ever I return to Anchorage it feels like I get completely wiped out. Clearly some of it is from the fact I am trying to get so much done. I believe it is good to keep trying to push myself. I do realize though after a few days I get pretty run down and start feeling more nausea and fatigue. Although I have only been here three days now the frantic pace of these days is catching up to me. Yesterday, I was up at 6 am to get my labs. As with the past year some aspects look better others not so rosy. My liver seems to be rebounding from the GVHD as those enzymes improve. My body clearly doesn’t like the immunosuppression though as my kidney’s seem to be slowly getting worse again. Also my hemoglobin keeps dropping slowly. I am back down to the 9 range which could explain some fatigue.
Despite the labs and the early rising I had a great day with Finn yesterday as we did a bunch of errands around town which he was pleasant throughout (not easy for a 4 year old). I took him to a tennis lesson, we had lunch, he napped while I made phone calls about my upcoming return to Seattle for a year post transplant followup (yep, a whole year, freaking amazing). I had some time to get dinner ready. Finn woke up about the time Jim came home and we went for a bike/run at Kincaid. Finn has become too fast for me to keep up with him down the hills. It was good to have Jim around to ride with him down. He wore the gopro and it is wild to watch a 4 year old sip around on the trails. If only now I could figure out how to edit these videos. Which is why I ended up staying up so late last night.
Today we were off relatively early as I Liam isn’t around sleeping in. Finn was super excited to check out a beach near the house which can be lovely in the morning, especially with a high tide. The weather wasn’t great but Finn was soaking wet about 10 minutes after we got there despite my requests not to. Eventually we were joined by some friends and had a great day playing at the beach, at our house, going to tennis before we got a late afternoon nap. I managed to get some more phone calls and a few errands done in there with dinner before Finn, Jim and I went to play a little soccer at the park. We were joined later by Brooke. Now we are settling in to sleep finally.
Even though I am tired and I feel run down. The last few days have been fun and entertaining. I love the time I get with Finn. I miss Liam a lot but I think he is having a blast with Grandma Toni in the Cove still. I am not sure he will ever want to leave. I can’t blame him. Writing about my days seems so much more trivial these days. I am glad for that. I really do prefer the tiredness of activity to the run down feeling of cancer.
I bring this up as I have spent the last few days doing some research and trying to put together my talk for my Medicine X trip in September. I had heard about another social media cancer writer Lisa Adams but I had not heard about the reportedly negative article written about her by a couple of journalist the Kellers. With out the details, as I have not read any of either sides actual words, I was interested to hear about the situation as my talk is going to focus on encouraging patients and providers to use social media to help improve communication in health care.
I think it is great Lisa writes openly about what she is feeling, no matter what her motives are. She gets some strength from it. I often find it hard not to criticize some of the world I run into on a daily basis. I think the reason I haven’t done it much in my blog is that people have different views of the world and I really shouldn’t be one to ruin their view. In person, I would gladly voice my opinion about their perspective (unfortunately my wife ends up on the whipping block to much) but here in the public space, even if I created it, I can’t really bring myself to knock anyone down.
I find it much more rewarding to just express the highlights of my day. Some days aren’t so great. Some days were down right shitty. Yet, I do appreciate the chance to wonder, if not know, if someone out there gained a little insight when they read about my day. I appreciate the support of all of you who take the time to even think about me. That is why I write about this horrendous experience of cancer. I bet that is the reason many patients do. I can only commend us all for understanding that any form of communication about such a horrible process can make us all better humans.
Head Up, Heart Strong. I need a cure.
A picture of Finn dancing in the high tide will be attached soon, maybe even a go pro vid some day!