Two weeks and seven treatments down, but more importantly, a few hours until Olivia and Stella arrive! I am so looking forward to seeing them and to a weekend of seeing Seattle, being tourists, going to the farmers’ markets, walking, and not being radiated! Not that the radiation has been difficult. It is time consuming and awkward but the side effects have been minimal. I can feel a slight sunburn and I am feeling tired, really tired. I slept 14 hours on Thursday, which isn’t a bad thing, although it was a strange, restless, dream filled sleep, and I was visited for the second time by my bus incident of Tuesday. I am beginning to wonder if this was a dream to begin with.
The incident happened as I was boarding the bus on my way to treatment. I remember how tired I was, how low I was feeling and how depressing the crowd of addicts and street people were. I was followed onto the bus by this desperate and destitute woman cradling a well-worn baseball. She moved up the bus, stopping before each passenger and mumbling. Not a single person acknowledged her or even looked up. As she got closer to me it was clear she was asking people to touch her baseball, claiming it was lucky. Of course, I looked up and made eye contact. She stopped beside me and pleaded “Please! Touch it! Marshawn Lynch kissed it. It’s lucky!” Of the many thoughts that went through my mind, the ones I recall are: I highly doubt that Mr. Lynch kissed this baseball; if he did kiss it; why would that make it lucky, and not just slobbery; if it is lucky why does she appear so luckless; and why is she sharing this luck with me? I hesitated for a moment then reached out and touched the ball. No sparks erupted, no thunderclaps sounded and no genies appeared, but the woman smiled. A big full mouth smile (revealing that the luck had not extended to oral hygiene or dental work). Watching her smile grow lifted my spirits. No one else on the bus took her up on her offer and she got off at the next stop. I was still smiling at Aurora and 115th, half an hour later and it makes me happy thinking about it now.
My new found luck was not apparent in my appointment with Dr. Tseng on Wednesday. We still do not have an overall plan for my treatment. Yolanda, her fellow radiation oncologists and the dosimitrists are still debating the dose, locations and mix of photon versus proton treatments. While frustrating, it isn’t slowing anything down or delaying things. The decision has been made to do all (or almost all) of the proton treatments first and the photon treatments at the end, so we are proceeding with proton treatments at the tumor site. I would like to know the entire plan, but at least the decision to do all the photon last is helpful in that it means that the side effects that are most likely and that I am most worried about (loss of bowel function and bladder irritation) will not occur until later, although they could accumulate quickly at the end. I would much rather be well until mid-December and then really sick for the last two weeks than be gradually more ill over eight weeks. It likely means that I will be hoping for Depends in my Christmas stocking, but maybe touching the baseball will ward off these effects.
Other than adjusting pain and nerve drugs, the only other item we covered was conditions under which treatment would be delayed. It is very unlikely that I will get ill enough to warrant stopping radiation, but Dr. Tseng did caution that if I lose too much more weight they will halt treatment until I either regain it or stabilize. I don’t think that I am at an unhealthy weight and in fact I certainly could lose another ten pounds. I guess her concern is the speed of my weight-loss. I am not overly concerned about this; I can put on weight if I need to.
After the appointment I went back to the SCCA House to nap. Staying here has worked out really well. While it is not near either of the hospital sites that I need to get to, it is in a great neighborhood, South Lake Union. The area is mixed and undergoing some transition. Amazon is building a 3,000 person campus in the centre of it and construction is underway everywhere, both of their offices and of condos and apartments to house their employees. I have really enjoyed walking in SLU; it is a short walk to downtown and to Capitol Hill and has some hilly, cool streets. I can see the space needle and both the old and the new Seattle Times buildings out my window. Every morning I walk by their iconic sign, “Seattle Times, since 1896”. There is a grocery store five blocks away and a reasonable bus connection to the UW Northwest Medical Campus where ProCure is.
SCCA House is located near Seattle Children’s and the Fred Hutchinson Cancer Centre (“the Hutch”), which is the primary cancer treatment and research facility for the region. Cancer is a big business here. The hospital and research buildings occupy block after block in SLU and up Eastlake. Shuttles from the House go to the Hutch and from there to UW Radiation Oncology where my photon radiation will be.
The house is awesome. The staff are helpful and friendly and it is enjoyable being part of a cancer community (Okay, that sounds odd. HAVING cancer isn’t enjoyable, but if you have it being part of this community is enjoyable). Everyone is here for the same reason, which makes talking about treatment, symptoms and side effects easy. The rooms, while institutional are adequate and comfortable, although set up so that residents will spend time in the common areas. The 2nd floor of the complex has a community kitchen as no cooking is allowed in the rooms, which makes sense. Many people are intolerant to odors and there are fire concerns as well (people on drugs that make them drowsy are not a good combination with ovens, hotplates, toasters and kettles). They do not even have knives in the rooms, which is pretty limiting, so I bought a remarkably serviceable 5” Kleve for ten bucks at Whole Foods Market. On my way to the checkout I started wondering if we aren’t allowed to have knives in the rooms and if it would be confiscated. Luckily, the bakery had a pumpkin caramel bundt cake that I could hide it in. Unfortunately, the cake didn’t survive retrieving the knife (Paul 1; Weight loss 0).
The shared kitchen is a great way to meet people, it keeps food odours in one place, and allows residents to share basics, but it does take some getting used to not having a kitchen handy. I realize how much time I spend in the kitchen. I figured the most efficient way to manage food is to make large batches that will last for a few days, so on Tuesday I picked up lamb merguez, chicken andouille, and pork sausage, tomatoes, mushrooms, and garlic and made six liters of sauce. It has meant delicious pasta every night since (Paul 2, weight-loss 0).
The 2nd floor of SCCA House also has reading areas, games, a kids’ room, media room, mediation room, gym and a yoga area.
Paulo needs to keep in shape. All of that cheerleading is taxing (“Give me a P, give me an A…”).
I have been using the gym and for the past few days I have been sitting in the meditation room listening to a guided meditation. I have also been using my time on the proton beam machine stretcher to meditate and in just a few days I have noticed a difference. I’m less agitated and the treatment time appears to go faster. I can only focus attention on my thoughts for about 30 seconds before I get lost, so I have been using golf as a guide, playing out a game in my mind. On Friday I finished 12 holes at Gallagher’s. The 13th hole is not good to me anyway, for an easy looking par 3 I can’t seem to find the huge green. Ask me about my putting, though, it was hot today. Maybe it was touching the baseball.
Overall, between the house, the team at Procure and the amazing support and love I am feeling from home, this week has been really good. I wish I could thank everyone who has sent me well wishes, emails, love and support. A special shout out to those who are helping with the concert in Kelowna on the 21st – you are all amazing – it makes it so much easier to be here.
Got to go, Olivia and Stella should be here shortly. Lucky me!