The Longest Journey

Define “Cure” for me.

I have been thinking about the word “cure” lately. The doctors used this word when Dylan entered round one of chemo and since I have had some mental breathing time between round two and three, I have been wondering about what cure really means. Does cure mean this cancer will be gone? Does cure mean it will never come back? Does cure have a five-year waiting period? These are the questions I haven’t asked.

Here is what I do know. We have two more rounds of chemo. They will probably be like the last round which means Dylan will be knocked down again, but they will be shorter, like round two, if everything goes well. Then, when we finish round four, Dylan will get to ring a bell on the 12th floor at Swedish announcing that he is done with chemo. There will be a moment of joy…and then we will wait…for a month before he gets a CT scan looking for cancer. That is the month I am thinking about these days, it stands out there in the distance ready to embrace us, or to cut our hearts in two.

If Dylan is cancer free after a month we wait for five years. Five years…seems like an eternally long time to wait, but cancer patients are not considered “cured” until they pass through that five-year window. Hopefully those five years will be long and uneventful on the cancer front, but how do we begin to pick up the pieces of our lives and begin building again? I feel a little like those people you see on the evening news who have had some natural disaster hit their homes. Most of them announce bravely that they will rebuild. They will be back. Things will not change for them. What happens if another natural disaster hits again? Then what?

This morning I was reminded (thanks to AhDad) of a poem by either Roy Croft, or Erich Fried titled Love. (The poem’s origin is a bit misty, but I live in a country where the Supreme Court and Mitt Romney think companies and people are the same thing so it doesn’t really matter who gets the millions of dollars this poem has produced. There is a good deal of money to be made in poetry…if you work for an ad agency.) There are many lines I love in this poem, but the one that has always stuck with me is, “I love you because you are helping me to make of the lumber of my life not a tavern but a temple.” The sticks and lumber left from this cancer thing are left for us to build from. We can rebuild the same life we had before, but we also have the choice to build something new, something better. What that means at this point is something I cannot know.

Dylan and I have spent a little time talking about the future, but not in a concrete and calendared way, most of our discussions have been about the unknown. It wasn’t that long ago that he had a plan, but that has changed. Now, we talk about the future in a more abstract and open way. I don’t know what Dylan is going to do with the lumber of his life; I’m pretty sure he isn’t going to build a bonfire, but he might build something without a clear plan, something he loves, something different. When death reaches out his bony finger and touches your shoulder sticking to human timelines has a pointlessness that seems more absurd than usual. About a month ago, Dylan said, “I want to build a gaming computer.” Of course, I thought this was a complete waste of time and money so I gave him a whole-hearted, “Whatever.” Since that time, he has cobbled together bits and pieces of computer hardware without any financial support from us. I don’t know how he has done it, but it has happened. I don’t know if he knows how to put the bits and pieces together, but, in the end, if it gives him something to do while waiting for the next round, then I guess it is a good thing.

The wait has become a time to fill with distractions (NCAA basketball games, grading papers, and seeing people) but on Wednesday, we head back for round three. Round three is when I will ask, “When you say cure, what do you mean? What are the usual timelines? When can Dylan resume life?”

IMG_0071

Two weeks ago, Jared Romberg and other firefighters from around the Pacific Northwest climbed this tower in full gear. The climb was to raise money to find a cure for cancer. Most of the firefighters climbed the stairs in less than 35 minutes. (Which I could do easily if I was allowed to use the elevator.)

I began to wonder if the cure for cancer were the top of the tower, how far has Dylan climbed? Is the top of the tower five years out? Or, is it three or four weeks from now when Dylan will ring the bell on the 12th floor of Swedish? How far up the tower are we when it comes to finding a cure to all cancers? These are the things I think about while waiting for an end to all of this.

Jared, before the climb. Yes, that goofy picture on Jared's helmet is Dylan.

Jared, before the climb. Yes, that goofy picture on Jared’s helmet is Dylan.

Tomorrow I will pack our bags, put together a list of items to bring along, and double-check everything so that our third stay at Swedish is as comfortable as possible. I won’t end up with everything we need, but I will have the essentials: a few books, music, snacks, and clothing. You can’t plan for everything that is going to happen, but knowing that makes all the difference.

19 replies »

  1. Good luck to you and Dylan for this round, Jon. I wonder if any of us know what we want to build with our timber? Perhaps it’s better to build a slapdash haphazard castle we love rather than a sturdy house that is merely a shell. Who knows? I still don’t even know what I want to be when I grow up.

  2. Darn you Jon! I always look like Alice Cooper after reading your blog. Don’t stop. I love it. God speed for round 3. ❤️

  3. I like the rebuilding reference in that poem, and the idea of him cobbling together a gaming computer, that’s cool. I did that climb once but never again, up the Columbia Tower. Too dusty. And I felt kind of fool-hardy doing it because it was a kind of macho thing, why I did it. “Cure” probably means never having to think about it again, and that seems unlikely for how something like this touches you. But I wish that for you and your family one day, that it can be a thing of the past and yes, you reassemble your life on its remains.

    • Thanks Bill, our life and time has been so consumed by this that it feels a little weird to escape it without it lurking somewhere out there in the dark.
      I’d like to say I don’t do macho things still today but that would be a lie…

  4. A tree house in a tropical forest, another one in a cloud forest, and a third one in one of those huge redwoods we could never reach around even with 50 people joining hands. Whatever gets built, I know you all will have a blast

  5. All those hard-working temple builders are bound to get thirsty eventually. Then they’re going to wish that somebody built a tavern with his sticks. That’s where I come in.
    Best of luck with round 3.

  6. Cancer is an absolutely devastating disease. I try to listen to people’s stories about how the disease has affected their life, as it motivates me to keep conducting research. I know research is leading cancer treatments to a place where there will be less side effects and fewer deaths. I have hope that stories like this won’t have to be told anymore. Cancer treatment is only going up from here, and that I am positive about.

    I met a girl in remission from acute lymphoblastic leukemia last year and she told me all about the side effects from chemotherapy that tore her body apart. Her story inspired me to conduct research on cancer treatments that are less harmful to the body. I’ve been researching small molecule inhibitor drugs through a research program at my school. Thanks to stories like this one, I’ve been able to speak about cancer and I’m even writing a book about its effect on my life. I can’t say enough how important it is to listen to stories that describe the suffering of others.

    • I really appreciate your message. I know there is a lot of research to do before cancer is cured, but with energetic folks like yourself working at it, it can’t be too far off. Thanks for your hard work!

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