• Joe Cooke

Re-Booting the System

Updated: Oct 8

I took a year off work, basically all of 2018, so that I could do battle with a peculiar kind of cancer in my bone marrow called Multiple Myeloma (actually cancer of the plasma cells). As 2019 dawns, I'm re-booting my life and my career with some new insights and inspiration gained during that ordeal. What follows is a reposting of an entry I wrote on October 16th for our CaringBridge site while I was recovering from a massive dose of chemotherapy that completely wiped out all of the good and bad plasma cells in my bone marrow, followed by a re-infusion of good stem cells that had been harvested from my blood stream in July.

The Arrangement

Journal entry by Joe Cooke — Oct 16, 2018

The night before we left for Seattle, I walked out of the house feeling pissy. I took a long walk, about 4 miles, waiting to cool off. I was justifiably angry and fed up.

Here’s the background. Best Practices for stem cell transplant are to get the patient into top condition, meaning a deep, deep remission. We’d spent something like 15 weeks of chemo and immunomodular therapy to get there, which left me feeling weak, fatigued, and nauseated most of the time. Our target for the stem cell extraction was July, so that we could take one week in Seattle to get my stem cells harvested and Nicks surgery done (at Virginia Mason) during the same week. It made it easier on Katie as caregiver for both of us, and it worked out fine.

The second stage of stem cell transplant normally takes place right after the harvest. The stem cells go on ice for a few days while the patient is ‘conditioned’ which means hit with a high enough dose of chemotherapy to kill off everything in the bone marrow. Scorched earth, so to speak. Then the stem cells are reintroduced and within a few weeks they repopulate the scorched bone marrow, set up shop, and produce red and white blood cells and all that go with them.

However, we, as a family, decided to defer the reintroduction on the stem cells into my body so that Nick could heal up from is surgery at home and so that Katie could participate in the first few weeks of Willow Public School’s first ever year.

This was the arrangement and although I didn’t like it much, I agreed to it because it was the greatest good for the most people. Also, it gave me two more months to enjoy a modicum of health during some great summer weather.

However, here’s where things started falling a bit apart. My doctor had placed me on a low dose of Effexor for depression, and I was starting to titrate off of it during the stem cell harvest in July, but it wasn’t going well. Apparently, trying to kick Effexor is a two-to-three-week trial by fire. It was horrible. The school, being brand new and just opening in mid-August, took a ton of Katie’s time, so I spent a lot of the withdrawal alone at home, trying to finish one last project before I quit working altogether for six months. I managed to get rid of most of the rickety side effects of Effexor and was able to start back up on Revlimid as a maintenance therapy to keep my cancer in remission until the stem cell transplant scheduled for the last week of September. It wasn’t until about Wednesday, the 19th of September, that I felt half-way human again. But, at that same time, after avoiding flu and cold all year, I felt a sore throat coming on.

Great. I was already regretting postponing the stem cell transplant. A cold or flu would cause a setback couldn’t afford. We were scheduled in to our apartment in Seattle from the 23rd of September to the 28th of October. The chemo was scheduled for Tuesday, the 25th of September, transplant on Thursday, the 27th. But first, we had to drop Nick off at college on the 21st.

It was the night before we left that I realized I was angry.

I felt justifiably angry.

It was the evening of September 19th. Late. Katie had come home from work, and although she’d promised to take the 20th off, at the last minute she added a morning meeting to her schedule. The state commissioners would be on site and it was an important career move for her to be there. On the 20th, I would go get an SUV from Budget at the airport and Nick would load it with his stuff so we could drive it 216 miles to his new dorm. It was all staged up in his room that night of the 19th, and so he invited three friends over for pizza and Mario Cart. Katie was packing, I was irritable, and my house had been taken over by teens. I was coming down with what might be a cold and I wanted to get enough sleep to make the drive safely tomorrow. Nick would ride with Katie in her car, and we’d drop the SUV off at the Budget in Bellingham.

I give all this back-story to make a point. I was pissed, and I felt unseen and unheard. (Katie had asked earlier in the day if Nick could have some friends over and I had said, “No.” which is not like me at all, but this day I just wanted to enjoy my house one last time and go to sleep early in my own bed.)

So, I was MAD. I took a deep breath and walked out of my own house. In fact, Katie and I were a bit testy with each other. I figured if I took a walk I might be able to cool down, but I only ground my grudges in deeper and deeper. I’d walked a good mile before I decided I didn’t want to spend the rest of this evening mad.

Fortunately, I’d brought my toolbox with me.

Now, when I’m angry, and I think I have a right to be angry, and I want to be angry, it’s often hard to pick the right tool out of the tool bag. I actually tried several before I found the one that worked, and of course, in retrospect, I could have just chosen this one first, as it is the most universal tool I carry, as well as the most potent, when used correctly.

It works like this:

“I have arranged my life to be this way.”

Now, let me be clear. I did not arrange my life to get cancer. Someone walking under a building who gets a piano dropped on their head did not arrange their life to be that way. People who are raped and abused have no reason to make this kind of admission/affirmation. HOWEVER, when used correctly, this simple statement can be both empowering and humiliating. So, I reminded myself: I have arranged my life to be this way.

I’d circled back around to the house by then, a 4.5 mile walk in the dark on an evening where the temperature hadn’t even dropped below 70 F. I sat down on the wicker loveseat and took a moment to catch my breath.

This is the same place I sat not too many months ago saying, “Wow, we are so lucky to have this home.” Katie reminded me that we’d worked damn hard to be able to afford this, and I remembered once again, “We have arranged our life to be this way.” We both had jobs we worked hard to find, and that we coddled like the golden eggs they were. We’d saved up for a down payment. We’d merged our two households into one. We did this with planning and purpose.

Let me add this: I’m not a big proponent of “The Secret.” There really is no secret. You can’t con the Universe into providing you a convenient parking spot just through visualization. You can’t do it by prayer, either. The Universe operates on some giant principles far beyond our limited ability to grasp, and so, to me, many, many things seem arbitrary. Like cancer. I worked hard, ate well, exercised, kept a positive mental attitude, practiced gratefulness, hurt no one, and yet, still cancer. Some people are proponents of thoughts and/or prayers shaping our world, but they can’t. Or, if they do, why did sweet Maggie O’Donnell get cancer? Why did Mark get a brain tumor? Why did Paul get blood cancer? Why did Connor? None of these people deserved to get sick. People who are raped, abused, and killed, do not earn that kind of karma. It’s a ridiculous premise.

HOWEVER, the way we respond to these events in our lives is completely up to us, so when I say, “I have arranged my life to be this way,” I am saying two things to myself.

First. I agreed, whole-heartedly, that we should postpone treatment until after we got Nick settled in to his dorm at Western on the 21st of September, and, not surprisingly, there was ample time to schedule my transplant for the immediate following month. We made that happen. Secondly, we made the opening of Washington State’s first and only rural charter school a priority for Katie. Five years of hard work to get there—she deserved to be there for the opening. It was hard, yes, and she was working 80 hours a week, but it was worth it. It was her time to shine. And I had the extra time to rest, recuperate, get my own affairs in order for a long hiatus of healing. Yes, as I sat there on the porch, gazing into the night, listening to Nick and his friends playing Nintendo, laughing, joking, talking loud, I realized that this is EXACTLY what I arranged. I know that because it was exactly what was happening and I could have changed any part of it at any time if I’d wanted to. What I can’t change is the cancer. That’s just what is.

I have arranged my life to be able to send Nick to college, to be able to support Katie in her work, and to be able to take time off to heal. I have arranged my life financially so that we can weather this storm of medical bills and living away from home for six weeks. I have arranged my life in a number of ways to be able to handle this crisis and the ones that continue to pop up (like the rotator cuff tendon damaged by medicine). I made those choices, and the more I owned them, the less mad I got. I did arrange this and I did it for a damn good reason. Bottom line: I was/am scared and I didn’t want to go. I wanted to hide in a quiet hole and let this roll by quietly. But that’s not how this happens. I have a plan. Plan the work, work the plan.

A while back my almost 90-year-old father was struggling to understand why his kids weren’t getting along. One sister was living with him as an unofficial caregiver, and my brother lived next door and took care of both his farm and dad’s. My father had given most of his acreage to my brother’s family so that they would be right next door and able to help. My other sister had Power of Attorney and lived about 20 miles north but came down quite often to see Dad. The siblings didn’t always have the same opinion about how things should be run. You can imagine, my brother, working nights so that he could run the two farms, pitted against one sister with absolute power of attorney but no farm experience, and my other sister living in the house also with no real idea of what it took to manage a farm and acreage. Everybody’s nerves were worn thin, and one day, my dad, in tears (which was extremely unusual for him) said to me, “This isn’t the way I planned it.”

I almost choked when I realized what he was saying, and I couldn’t hold back, “You planned this?” It seemed like an insane plan when he expressed it to me. I thought that it was kind of weird that the kids were all hanging out in the Chehalis area again. Now I realize that he kind of lured them there with the idea of having his whole family back at the farm, the way it was in the good old days. Except me, of course. There was nothing he could say or do to get me back to the west side of the mountains. Wait, I don’t think he even tried…

Anyway, since then he has let his plan fall apart. The farms are sold. Dad is enjoying retirement in a really nice place in Lacey. My brother has a great job. My sister is out on her own, making her own way, and all the drama of that summer is over.

So, for a truly humbling experience at some time, sit down and review your situation and say, out loud, “I have arranged my life to be like this.”

Then ask yourself this: “What am I going to do about this?”

If you don’t like what is going on right now, if you don’t like your situation, say that same line and then decide to make some changes, so that next time you ask yourself how you got into this situation, you’re a bit more satisfied with the simple answer:

I have arranged my life to be this way.

This simple affirmation can be the most freeing life hack you have ever experienced. Also, the most humbling.

Use it. I dare you.

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