The Longest Journey

Where We’ve Been

Today, makes two weeks in Swedish Hospital in Seattle, it seems longer. I know all the nurses by first name, I know when blood draws are, I know that Dylan’s once distended belly hasn’t grown noticeable, and I know he feels better, but I also know the cancer fighting has just begun. Yesterday, before Dylan and I had our Bro-Down, we spent some time talking about what beating cancer might look like. We talked a little about five-year survival rates and the future of cancer treatments, about what “cancer free” really means, and about the really scary prospect that all this progress is just a tiny step.

When we started chemo, Dylan needed help standing when getting out of bed, today he stands on his own and needs hardly any help getting up at night to empty his bladder for the five bazzillionth time. He discusses his treatments with his nurses and decides which pain killers and sedatives work best for him. He spent thirty minutes talking to Nicole about what cancer is and how it works. Things are better, but…but…but…

Yesterday, we knew Dylan would be starting a new chemo treatment and everyone indicated it shouldn’t be too much of a problem. He might get a headache, he certainly would pee a new shade of yellow (day-go), and depending on how he reacted, we could get a few days to spend outside of the hospital. Our plan was a simple one, all dude stuff all day.

We kicked off DudeFest 2015 by watching the NBA skills contests on my iPad. I recorded the event on my DVR in Sequim and through the interwebs I could contact my DVR and watch it on my iPad. I grew up holding a television antenna to improve the picture and turning a knob to change the channel, so sitting in a hospital room in Seattle and watching something on my DVR two hours away took a little getting used to. We laughed, cheered, and it all felt pretty normal except Dylan had to go to the bathroom every 15 minutes because they were pumping him full of bicarbonate to get the ph level in his pee to reach seven before starting chemo. (I don’t know what any of that last sentence means, but that is what they were doing.) After the dunk contest, Dylan hit the magic ph pee number and Nicole came in with the chemoimage

There is an odd ritual that takes place with each chemo treatment. The lead nurse arrives with the chemo drugs in a sealed in yellow bag. The lead nurse then puts on a Tyvek gown and opens the bag. A second nurse comes in and they read the labels on the patient’s arm and match it up with the chemo drug. I suppose this helps prevent mistakes. Then the bags of chemo drugs are hung on the tower and we go back to doing whatever we were doing. Every 15 minutes, Dylan’s vitals are checked and everything seems pretty normal, other than the fact that Dylan’s blood is being filled with deadly chemicals…another day in room 1266.

After this treatment, Dylan and I did a few laps around the ward and snuck into a couple empty rooms to compare their view versus our view. Some of the rooms have a pretty righteous view of the entire Cascade Mountain Range from Rainier to Canada, but our room is larger and closer to the important things like free coffee and the family bathroom. After five laps, Dylan sent me out to find two good Bro movies at a nearby Redbox. I picked Fury and The Equalizer. Dylan ordered a hamburger from the cafeteria and I went down and picked up one for me too. The rest of the night was spent watching two violent movies and eating unhealthy food. It was petty good, it would have been better if the tv screen was a little larger than 21 inches and we didn’t have to put on the subtitles to see/hear what was being said, but all in all, watching the movies was really good.

The only mildly troubling part of the day was when Dylan was weighed. Two days ago he weighed 226, today he weighed 207. His weight has fluctuated like Anna Nicole Smith’s in the past two weeks and now that his guts are back to intaking and outputting, he has cleared out a lot of stored materials, so dropping twenty pounds isn’t shocking, it is just something for me to worry about.

It’s 6:35 AM, the sun is rising, planes are drifting up from SEATAC into the clear skies every twenty seconds, the top of Rainier is pushing above the morning cloud bank, and my son is sleeping soundly.

14 replies »

  1. Jon,

    Hang in there. I am learning that this is a roller coaster ride. Lots of ups and downs, and an occasional 180 degree turn. Remember that you are going through this the same as Dylan, without the side effects, take a few moments for yourself each day.

    If you get tired of the hospital food, there is a great sandwich place nearby. It is not a chain, and only has two locations. Most of the nurses know the name. I just can’t remember it.

    Randy

    • Well, Ross, this is an excellent question. We do have medical insurance. How good is our medical coverage? I have no idea and once the bills begin rolling in I guess we will find out. Obamacare, which I like, but IMHO did not go far enough (I think we should be like the rest of the civilized world have have universal coverage), has allowed us to keep Dylan on our coverage and will prevent insurance companies from denying him coverage in the future due to a “preexisting condition,” that is unless the morons (republican party) somehow manage to kill Obamacare. I realize that people in the US have a distorted view of how medicine works in the rest of the world (voodoo doctors, leeches, three year waits to see an eye doctor) but I have difficulty with the entire idea of medicine for profit.

      As for our situation, I have been contacted by a friend who has experience fund raising for medical bills. I hope we don’t have to go that route, primarily because I think our insurance company should be paying for our bills since we pay them to do that, but also because I just think it is stupid to have to raise money to pay for someone’s survival. I think in a nation where we can fight a 14 year long war without batting an eye, we could figure out that some of those bombs could turned into national healthcare…

      Worst case scenerio, my family runs away to Victoria in the middle of the night as bill collectors surround our house.

      • Thanks for the thorough answer. I’ve heard nightmare tales (and, of course, Breaking Bad…), none of which make sense in the world’s wealthiest country. I hope it works out.

  2. Thinking about your sweet family! Very thankful for your updates and would love to know if Dylan needs anything…care package type? Please give him a hug for me! Thankful you have the sun today!

  3. An Anna Nichole Smith analogy always makes a guy smile on a Monday morning. Your comments about linking technology also brings me back to my Snohomish days, probably 1977 when my dad sent me to the roof to adjust the rabbit ears just in time for Ali v. Fraser fight!!! lol. Dylan’s spirits look great in the pic that you provided and a great sign that he is getting up on his own to take his chemo. Advantage goes to Dylan: youth, size, toughness (basketball helps), disposition, and a stud DAD!!!!! Score: Dylan 1 Cancer 0 in the top of the 2nd. (Sorry, I wanted to use a basketball analogy but the score didn’t fit).

  4. Having just watched The Heat last night, I can highly recommend it if you want a non-bro movie to watch ;-). My thoughts continue to be with Dylan and with you and wishing you nothing but as smooth a journey as possible. D

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