The Whitelash Election

angry-manDonald Trump is the President Elect. I need to stop feeling aghast, or astonished or shocked. I need to get back to work on anything to take my mind off of it.  I keep making mental lists of everything that America risks losing as a result of this election.  Crazymaking.

Let’s not go there yet, first some small good news: If you don’t know, I appear to be “in remission” the term for when someone’s cancer is either shrinking or gone. But since I had a blood-borne form of cancer, the way we know if the treatment I received worked is if I have no recurrent presentations of tumors, or blood tests that signal something is amiss. I had my first post treatment CT scan and blood work last week and all’s-well. Whew. On Friday I’ll have a minor surgical procedure to remove my port, a slick little device that allowed everyone to both draw blood and give me IV fluids.   That’s it until a blood test in March and another CT scan in July or August. Remission until at some point in the future I’ll be able to switch to the label of “cured”. Compared to many, I am very lucky to even have “cured” on the table and believe me, I know it.

All of this is insignificant compared to the election. I feel guilty and embarrassingly oblivious. An African American man who was talking on the phone passed me just a minute ago at the Salt Lake City Airport: “Yeah, they all let their guard down and started celebrating before they saw what was really happening, you know what I’m saying?” That pretty much summarizes how I’m feeling. I feel like I am one of “they”.

It’s not that I wasn’t worried, I was. It’s that I badly misgauged the dissatisfaction and unrest among so many Americans, my fellow WHITE Americans. Any attempt to rebut the plight of this group compared to the millions of people who have fought and struggled with generations of systemic and systematic oppression and discrimination feels irrelevant today. They are so pissed and feel so un-included, most of them didn’t even respond to pollsters. The plight of struggling  white folks is real but not in any way equal, to what people of color, or women or members of the LGBTQ community had to negotiate, but that hardly matters today; a critical mass of white people are angry, disenfranchised and fed up with feeling less-than. They are so desperate, they’ll willing to risk it all and pick a person like Donald Trump over the most qualified presidential candidate to ever be on the ballot. 66% of them still think President Obama is a Muslim.

I know a lot Trump advocates through my work with clients but also as family members, now estranged because of our deep disagreement about race and religion. I argued with them, but the intractability of both of our viewpoints made discussion fruitless and frustrating. I can’t help but falling into the murky pit of the question: “What if all of us had really heard these people’s pain and tried to be allies to them in their concerns?

I read a piece in Mother Jones by Arlie Russell Hochschild about the intertwined roots of the Tea Party, politics and whiteness in the south. Arlie is a sociologist. She wanted to study the mindsets of Americans and what was behind president Obama getting so little of the popular vote in the south. One paragraph stuck me like a 2×4 over the head. Arlie wrote a test narrative to capture the real feelings of the people she interviewed, all of whom were from Louisiana. Once the narrative was finished, she shared it with them to check it for accuracy. They agreed that it captured their sentiments almost perfectly. I’ve kept the article on the desktop of my computer since I found it in late August, not sure what to do with it. Now I know:

“You are patiently standing in the middle of a long line stretching toward the horizon, where the American Dream awaits. But as you wait, you see people cutting in line ahead of you. Many of these line-cutters are black—beneficiaries of affirmative action or welfare. Some are career-driven women pushing into jobs they never had before. Then you see immigrants, Mexicans, Somalis, the Syrian refugees yet to come. As you wait in this unmoving line, you’re being asked to feel sorry for them all. You have a good heart. But who is deciding who you should feel compassion for? Then you see President Barack Hussein Obama waving the line-cutters forward. He’s on their side. In fact, isn’t he a line-cutter too? How did this fatherless black guy pay for Harvard? As you wait your turn, Obama is using the money in your pocket to help the linecutters. He and his liberal backers have removed the shame from taking. The government has become an instrument for redistributing your money to the undeserving. It’s not your government anymore; it’s theirs.

On election night, Van Jones touched on this same phenomenon with a beautiful mix of head and heart; he called it a whitelash against a black president. It was a whitelash some of us missed or underestimated.

Like most of you, l will now do that which the President elect himself could not promise to do had the outcome gone against him; I’ll support him as my President. But make no mistake; doing so will be harder than chemo, or radiation, or even sitting with the grief and tears and fears of my friends, colleagues and family as they question where to go or what to do to protect themselves.

My work today is to begin suspending my own outrage and blame and get back to work. And where its possible, I need to get back to work on this stuff.

Time will tell ALL things.

Back to Work – Finding a Stance

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August 24.

I have been on a tour of sorts back east for the past 2+weeks, mostly – I am happy to report – with Moe. Our trip is a mix of work, a visit with my family to celebrate my dad’s 89th birthday, a trip to the empty beaches of Chincoteague Island for a quick few days off and more work. It was also supposed to include a visit to see my favorite coach from high school, but a last minute schedule snafu messed that up.

It’s been a good trip. Mostly, I wanted my dad to lay eyes on me so he could see I was all right. He did, and I am.

During our visit, I got to hear how concerned he was. I guess he thought I might have been withholding the truth, as if my diagnosis or the treatment might resulted in death. I wished he had believed me so he could have worried less, but I’ve hedged the truth enough in the past about a variety of things, so it’s understandable why he didn’t. When we greeted each other, he held the back of my neck in his hand and looked deep into my eyes – as if trying to see into my feelings – and said “it’s good to see you my boy”. I teared-up. As a parent, he had endured the unthinkable, again. I felt apologetic for what he had been through but resisted the urge to apologize. I couldn’t find words for what I was feeling, or what I guessed he might have been feeling, so I just said “It’s good to see you, too, dad.” We hugged, and order was restored to my universe.

I officially ended chemotherapy when I was discharged from the hospital for stay #3 on July 23. “Whew” is all I need to say about that except to say thanks to Julie, Tom, Cookie (not her real name), the other Julie, Vandy, Todd, and all the other nurses whose faces I will remember but names I have forgotten.

The next week I jumped back in to work and flew to Baltimore for a short gig. This first return to normalcy was depressing for some reason. I hadn’t taken the time to emotionally close-out the past 5 months of treatment I guess. The work was fine, good even, and I worked through some of the complex feelings I had.

My hair is returning. It is at the stage where people who know me sometimes feel compelled to rub my head as if they were rubbing the Buddha’s belly. I don’t mind, I hope it brings one of us good luck. When people see how white my hair is, some try to poke fun at me, saying things like “wow Jim, your hair’s really coming in white, OLD MAN.” As if I care. I’m just grateful to have it at all, and grateful for just being there to accept their jabs. I wouldn’t care if by hair was coming back in blue. I had forgotten about people rubbing my head, otherwise, this part of the recovery and detox process is familiar ground to me. My recovery is bracketed by frustratingly short and slow run/walks, lots of supplements (pills, drops, powders, etc,) to clean me out and help my organs and their tired mitochondria get healthy again, and people asking me “how ARE you?” which really means “is the cancer gone?”

The answer is “we think so” and time will tell. My work now is to find and adopt a healthy stance to my life with some uncomfortable unknowns. The two extreme stances that I can envision are stoic denial on one hand, and constant vigilance and focus on my physical health on the other. I could easily adopt the “it’s all good, I’m great and there’s nothing to worry about” stance. It has the advantage of being what people want to hear. I know lots of folks who adopt this stance for everything from losing a job to kidney disease. It works for them but for me, it leaves the door open for receiving devastating news in the future if my cancer comes back. Of all the memories I have of the past 5 months, by far the worst were the first few weeks after my diagnosis. I had convinced myself cancer and I were done. We weren’t.

The stance of becoming constantly vigilant and focusing on my physical health doesn’t really suit me either. There are hundreds of variations on this stance, some of which are pretty unrealistic and certainly no fun. For example, I could find work that doesn’t require me to travel (not if I want to meet my financial obligations or realize any of our financial goals). I could give up beer and wine altogether and anything with sugar (cancer loves sugar). I could become super-careful about what I eat, shifting to a mostly organic, mostly vegan diet (unrealistic if I continue to travel for work). And so on…

The truth is we don’t know what caused this cancer and probably never will, but I can take reasonable steps to reduce the likelihood of it coming back. I’m going to cut way down or eliminate the stuff I know isn’t good for me; sugar, red meat, foods from the inside of the store, and so on. I’m also going to become one of those label reading supplement junkies who cruises the isles of Whole Foods-type stores, trying to find whatever my naturopathic oncologist has recommended – from tree bark to mushroom juice. I’ve cut down on beer and wine, but I’m not going to eliminate it, or the occasional margarita. I’m going to get as close to 7 hours of sleep a night as my travel and work schedule will allow and I am going to get as fit as balancing all of these things will allow. But by far the hardest stance for me to shift will be the stance of getting a better handle on my anxiety.

If I tell myself the truth, my anxiety is in the driver’s seat a lot more often than is healthy. I attempt to convert the anxiety into motivation by turning a lot of life events into what William James called “the moral equivalent of war”.

War is the strong life; it is life in extremis; war taxes are the only ones men never hesitate to pay, as the budgets of all nations show us.

James’ point was that, to eliminate war, humanity had to convert its collective energies to serving the common good, and to literally go to war against war. By doing so, he believed we would bring out all the great human characteristics that allow us to accomplish exceptional things, motivated by the same strong passions that come out in times of great duress, like war.

I turn a lot of things into war-like problems, but doing so keeps me working very hard, usually on the wrong things. My anxiety isn’t good for anything or anyone, including my body, my relationships or the world. I know that learning to manage or even eliminate it is what’s best for me. At 58 can I make that sort of shift in stance? We shall see. The goal isn’t to eliminate ALL of my anxiety, but to be more mindful of it and how it impacts my happiness and health.

For me, the antidote to anxiety is to remember that I am loved, and that love is what matters, and that I am enough even when I misstep and even when I can’t change the world, and that I am best able receive the love that’s available to me when I am still and listening and open. This is hard work for me, but it’s good work.

Back to work.

Cancer Patience

I’m in the hospital, hopefully for the last time for a long, long time. I think just about everyone who is close-in to this little 5 month drama is starting to think about more normal times and closure to this chapter of our world. I am, even though I still have a few hoops to jump through in September.  I will miss being around cancer people in general – nurses, survivors, doctors, etc. Don’t get me wrong, when I done, adios, but until then I enjoy these people and appreciate the way they work, live, heal and help heal.

I’ve had so many good conversations with people who are overcoming cancer here at the hospital, in the infusion room and out in the world. When we survivors pass each other, our eyes speak with a soft but a determined look that says volumes: “you’re doing good, keep going, its worth the pain, I believe in you, I’m scared shitless too”. I try to give the look when I can; it’s harder to give than to receive.

As I started my last day in the infusion room two weeks ago, I passed a man who was probably my age, but for reasons having to do with my privilege and class upbringing, I was aware of the visible hardness of his life compared to mine, at least that was my assumption and judgment. He was a big man; I’m guessing 6’4” and probably weighed 280 lbs. or more. He smelled like cigarette smoke and had the hacking cough to go along with it. His thin beard looked more like a decision of convenience than style. He was wearing sweat pants that looked like his favorites for doing household chores. He was quietly talking to himself. I hadn’t seen him before and didn’t know anything about him, so I didn’t give him “the look” but hearing him talk to himself and caught my attention. I turned and we made eye contact.

He quickly seized the opportunity, hungry to connect: “Whatcha in for?”

I smiled. The “convict” question. More judgment on my part –I didn’t think he would understand sharing a laugh about his question and it’s metaphoric symbolism: cancer treatment to jail.  There was an empty chair next to him, but I instinctively didn’t sit down, I was planning to keep our conversation short. This wasn’t like me. Remember? I’m the guy who likes cancer people. I wasn’t sure what he was really asking, so my response was canned, almost mechanical. “Non-Hodgkin’s lymphoma, my last of 6 chemo treatments” and he said “Me too. Same fucking disease, it’s a bad one, eh?” I was surprised – not by him, but by all the assumptions I had made in the last 4 seconds. As different as I thought we were, we were both here trying to live through the same disease, and just then none of my judgments seemed relevant, or accurate. I was privately ashamed and embarrassed.

I sat down and we spoke for a while. It turns out he was a veteran, and for reasons I didn’t uncover and can barely even comprehend, he was going through the treatment mostly on his own. “Yeah, I talk to myself to remember what’s happening, I have to remember what to ask and what they tell me. so I talk it.” For this next bit he leaned toward me and lower his voice. We were sharing our fist secret or confidential moment. “I know people think I’m off, hell I AM off, but screw ‘em if you know what I mean!” He chuckled.

Towards the end of our conversation, I discovered we had even more in common; he had survived cancer once before too – he said it was colon cancer.

What makes this exchange even remotely interesting is what I did with those 4 seconds. We rarely talk about class in America, or at least I almost never talk about it. Apparently, it shows-up in the unconscious decisions I made about where I look and with whom I sit. Those 4 seconds reminded me, my privileged (upper) middle class upbringing has helped me become a snob, or worse.

Zoom out some and what matters more about those 4 seconds is how they might be at play in all the violence we have seen and watched in the past 6 weeks. Orlando, Baton Rouge, Minneapolis, Dallas, Nice and then again, on Sunday in Baton Rouge when a young veteran stalked and killed three police officers, apparently in retribution for the other killings. Did you make a 4 second decision about any of what you saw about these events on the social media or read in the news? Did the police? Clearly the police responsible for killing the men they were questioning or arresting didn’t feel they had 4 seconds. If they had, they would have chosen to de-escalate things, right? We know very few of the facts in most of these tragedies yet, but how many of us feel like we don’t need to know more to have a judgment?

Zoom out some more. Are you noticing the angry, afraid and critical reaction some whites have about the Black Lives Matter (BLM) movement? It makes some of us uncomfortable and afraid, as if it’s message is that black lives matter and our white, brown, Asian, LGTDQ or blue lives don’t. Are the people who are so triggered by BLM able to take 4 seconds to consider how that movement may have a point and that it can be both troubling to us and valid – even helpful – at the same time? Can I be uncomfortable with BLM and support it? Can I hate the systemic racism that exists in some law enforcement agencies and not generalize and judge all police – especially white police – as biased or racist? Check out what the police and some African American communities in Wichita have started.

Of course I can, or at least of course I can learn to. I need to. I need to learn to live with the shadow of cancer in my life and not succumb to fear of it.  I can learn to see cancer as my not-very welcomed partner and part of me without becoming it. Of course I can.

4 seconds.

 

Update – Just the Facts

Joe Friday
Jack Webb as Joe Friday, circa 1966

I have a new blog in the can that is typically philosophic about my last day in chemo. I realized that a vast majority of folks just want an update. If you’re almost as old as I am you may remember Sgt. Joe Friday and Dragnet; “Just the facts please” so here they are:

My last day of chemo today came off without a hitch. There are a lot of other moving parts to my treatment so I didn’t feel like doing a metaphorical happy dance in the end zone, but I do feel good about completing this phase of treatment   – both in terms of my confidence in killing the stubborn, aggressive, microscopic, bastard, mutated lymphoma cells and bringing me back to full health.

My primary oncologist, Dr. Bill Martin, feels good about how my body is responding and how the treatment is going in general. My blood work “counts” are all doing well, which is to say they are low or off but in ways that are to be expected. The bonus is Bill, a mtn. biker, tells me how much my red blood cell counts are down so I can tell whoever I am working-out with – or myself – why I am slow and breathing so hard. It’s nice to have an excuse, especially in Bend which is kind of a Mecca for elite endurance athletes. I did a somewhat tiresome uphill ride here on Monday, solo, and I felt good but tired. Bill told me I did it with the equivalent of 3 liters less blood (what he really means is I am down on oxygen carrying red blood cells by that amount) and I felt better about myself.

Next is my last hospital stay for high dose methotrexate on July 18th, then a month off in which I will traveling, catching up on a backlog of client work, visiting my family in Va. and taking a small respite with Moe at the beach. In early September I begin radiation for what we think will be three weeks, and then I really will be done.

What follows is “monitoring” which includes coming in for periodic blood tests and an occasional scan. Bill is trying to weigh the balance between the harm that the scans do to me which can raise the incidence of other, new cancers, with the desire to stay on top of any new problems, if there are any.   Although it could be argued I have not had that many scans – I haven’t compared to a lot of people – it could also be argued that my body doesn’t like radioactivity, etc.,  and that might have contributed to the mutated cells we are now trying to kill. This cancer comes with less certainty than the first one – I’ll know I am cured if nothing comes back that is lymphoma. That’s it.

I am optimistic but as I have said, I’ll never turn my back on cancer again. 90% of the time I feel positive and good. 10% of the time I fall into anxiety and some despair, wondering how long I have left on the planet and if my time here will be cut short.

So those are the facts, I’ll post the more philosophic (and longer) blog is a day or two. Thanks for caring. It makes a difference to me.

The Secret of Life

Scene Setting: Today is chemo #5 of 6. I am heavy hearted and angry about the deaths in Orlando.To rant for  a second, how in the world can we continue to justify a law that makes it so easy for people to purchase weapons ? The excuse that makes me the most angry is, “if everyone has a gun then there would be no violence” even though there is tons of evidence to the contrary. 310 million guns in the U.S. and no one was equipped or ready to pulled a gun on the shooter. And the solution is that we need more guns?

Unbelievable and awful.

I am in the St. Charles infusion room. Chemo treatment #5 is in full swing, pre-meds are done and Rituxan is going in at 100mg/hr on the way up to 400 mg/hr if I don’t start shaking or break out in a rash (I won’t, incidentally). Today appears to be “back to the 70’s and 80’s day” in terms of the music mix they are playing.  Elton John – Candle in the Wind,  King Harvest  – Dancin’ in the Moonlight, Procol Harum – White Shade of Pale, etc.  Moe is here with me, we’re both working on our computers but we’re breathing the same air and that’ll do for me.

It’s as if I picked the mix.  Every third song is James Taylor.  Yes, that’s right, James is my go – to artist. Laugh if you like, but what’s so is so.  James is the singer/musician who’s music I can listen to any time and any place and feel good about it.

On comes “The Secret of Life” and I start crying.  Moe asks me what the words are stirring up in me and I can’t talk about it. I think she feels rejected because I have said that several times recently.    I can feel the end of my treatment approaching, and it feels great, but I don’t feel emotionally prepared or equipped to handle what comes next, which is a return to “normal” life, as if there is such a thing.  I am full-up with emotions I can’t describe, but as so often it happens,  James’ words hit the center of my heart:

The secret of love is in opening up your heart
It’s okay to feel afraid
But don’t let that stand in your way
’cause anyone knows that love is the only road
And since we’re only here for a while
Might as well show some style
Give us a smile

Isn’t it a lovely ride
Sliding down
Gliding down
Try not to try too hard
It’s just a lovely ride

Listen for yourself: James Taylor – Secret O’ Life Lyrics | MetroLyrics

Heavy hearted for the victims and their families and loved ones in Orlando.  If love is the only road, than when does it get to win a big one?

 

 

Risking My Significance

Our friend Bob MacArthur has his own blog. In it he posted this poem by Dawna Markova. The poem was aimed at me.  Thanks Bob.

I will not die an unlived life.
I will not live in fear

of falling or catching fire.
I choose to inhabit my days,
to allow my living to open me,
to make me less afraid,
more accessible,
to loosen my heart
until it becomes a wing,
a torch, a promise.
I choose to risk my significance;
to live so that which came to me as seed
goes to the next as blossom
and that which came to me as blossom,
goes on as fruit.

Dawna Markova

Hospital View

The view from my hospital room.  Thanks Moe.

I am finishing up my second hospital stay where I receive treatment  designed to keep the cancer from ever going to my brain.  It’s Friday, the Dr. just released me and I can go home. I got here Monday and I am ready to be out and to breathe real fresh air.  Things have been going well in general. There are many days when the dark cloud of this treatment or the specter of cancer and the unknown is much diminished compared to the happiness I feel with the family, friends and love that is regular part of my life.

Privately, I have been working  on finding the mind sets and practices that will help me to stay present in life without letting anxiety and fear of  a recurrence dominate my mood or thinking.   I only have 6 more weeks of treatment left. When I began I had 18 weeks. I can feel the end of this phase approaching. The end of this treatment will be a moment to mark for me, and I am looking forward to it.

I have done some things lately that surprise me.  I joined the Unitarian Fellowship in Bend. I’m not a joiner and I certainly don’t have “faith” in the Christian sense, but I like the brand of activism the Unitarians  partake in and it’s easier to join in with what they are doing than it is to have always find my own ways to contribute and agitate.  Call it lazy, I’m calling it efficient and more social.  I also like the intentional process of going to a Sunday service and quieting my brain for an hour to think pensively and mindfully.  It feels right, but weird.

Another surprise was going to an Al-Anon meeting with Moe last week and finding it enormously refreshing.  Something I know to be true about me – but I don’t know what to do about it – is that my co-dependent behaviors can disrupt my most intimate relationships. The third step of AA is about “turning it over” as in “We have made a decision to turn our will and our lives over to the care of God, as we understood him.”  Of course this expression doesn’t exactly square with my beliefs, but I do like the implicit assumption that some things are just worth turning over or deciding not to try and solve. If turning it over is connected to “give it break” I definitely am in for that, too.  Everything has a time I suppose.  Some things are either unsolvable or it’s just not the right time to work on them, so turn them over.  Amen.

Re-reading these words, I think what is actually going on for me is all about time; how I use it and what it means to me. It’s good work for me I think, but for now I think I shall just turn it over and focus my thoughts on having a nice weekend outdoors with family and friends and music.

Wishing the same for you.

 

 

 

 

Bad is Bad (and Good is Good)

IMG_4136 (1)I have a small ask: if we perchance run into one another, please don’t greet me with sympathetic eyes and a sad voice and  say “How are you doing?”  It’s different than when you do say the normal “How are you DOing?”.  The sad version makes me feel weird, as if you are saying “You poor bastard, you look like shit and I want you to know how sorry I am for you”.

Now of course, I don’t know if you or anyone is actually thinking those words when we meet, but it sure feels like it when the words are accompanied with that certain face and voice. Sympathy makes me feel really uncomfortable.  I’m not feeling sorry for myself (usually). Confused and unlucky? Absolutely. Missing the lifestyle of work and travel and health I had only a few months ago? Of course.   I suppose 58 years of training as a rugged individualist has conditioned me to bristle at being sympathized for. But I’m still operating from an “I’ve got this” mentality, so when I see looks or expressions of sympathy directed at me, it messes with my mojo. I don’t mean to seem ungrateful. The gift of your support has been amazing, healing, restorative and fun. But easy does it on the sympathy.

You can say or do just about anything else, incidentally. A friend in one such chance encounter just the other day said “Holy crap man, you look like shit”!  I laughed so hard I thought I was going to pee.  In a different encounter at the grocery store, I ran into a friend and his 4 year old son. The boy was tracking our conversation better than I thought. He asked “what’s WRONG with you?” I laughed and said “They are giving me medicine that makes me look like my thumb, see?” – and I held up my thumb and we both laughed.

“Bad is bad” is what I am learning and comparisons of whose Bad is worse are meaningless. Sure, going through cancer treatment again is bad compared to the privileged existence of my life, but I can think of a LOT of things that would be as bad, or worse. Just a few weeks ago, two colleagues whose love story parallels our own were walking together when one of them unexpectedly fell down, had a heart attack and died. His Love apparently gave him CPR to no avail. He was Moe’s age.  I can only imagine how I would feel if that happened to Moe.  But I haven’t felt that kind of bad yet, so my Bad will have to do, just like whatever tragedy or adversity has befallen you that you feel defines your Bad. I don’t need to know my Bad looks much worse to you than your Bad, but it is helpful to know you have felt bad before and you can empathize with me. That feels awesome, actually.

And incidentally, I think the same thing applies to good.  Good is good, and your version of Good doesn’t have to outshine mine, or vice versa.  The point is, have you felt joy, and love, and affection, and other positive emotions.  I have, and you are part of them.

 

May Days – The Privilege of Overdoing It

“How’s your energy level?”

“OK” I say, “I think I overdid it last week and I paid the price for it this weekend.”

“When is your next chemo again?” I answer “two weeks from yesterday”.

The next question kind of depends on how much you like hearing about the details. One is “…what are your counts?” but more generally people ask…”what are your doctor’s saying?”

“Creatinine is coming down, white count’s low but coming back and red count’s low but to be expected. The Dr. says I am doing fine…” I report. It feels almost rote to say these things, I say them so often.

I don’t mind people asking at all, they’re trying to get a sense of how I am doing and how it’s going. And I am grateful when the conversation moves on to other topics. It’s uncomfortable getting so much attention and being the focus. I am also endlessly grateful for the friends I have and how they show up for me. Thank you.

The truth is, the grind of the treatment is starting to show more. One of my step kids, making a dark joke that we all laughed at during one of my low points, said “you are looking pretty cancerous today, Jimmy”, and I do sometimes.

I walked a hill with a friend earlier this week and noticed I was really working. That same friend, Jim Cogswell, lent me his cycle cross bike so I can bike around town during my treatment. Bend is sort of situated on the side of a gradual hill, and we sort of live near the top of that hill, so whenever I come home, I have to suck it up a to get there. If I’m not well hydrated when I have to expend a lot of energy, I can feel my energy almost literally decrease with each exhale.

Canyon TrailI know what it feels like to be treated with chemo and NOT be able to overdo it. I feel privileged to be able to get out and overdo it, even when I don’t use good judgment.

People warn me not to overdo, but I do.I think this is pretty normal, or at least that’s my story. I’d rather find out where the limit is than to be too passive or conservative. Thanks anyway. Moe just rolls her eyes. She almost always sees what is happening before I do, and we end up in a married couple banter that probably says as much about our male/female dynamic as it is about our marriage.

“Do you think you overdid it today Jim? “ she says. I go straight for the innocent ignorance strategy, “…no, not really, what do you mean?”

“You just seem pretty low energy now, and your cough seems to be worse” she says.

I pivot to the its just a flesh wound strategy “Nahh, I’ll be fine, I just need to eat something and get more water on board.” Then the eye roll. Why she stays with me is a mystery.

It’s another beautiful day today. Thank you world, thank you body, thank you.

 

 

The Source of Suffering

I had a miserable week in the hospital, and most of it was self-inflicted. The week leading up to going in, I routinely told people that I was going into the hospital for 4 nights. If she was around, Moe in her quiet wisdom would add, “…although it may be longer”.  Moe understood something I did not: that the treatment I was receiving was full of unknowns, most especially the unknowable facts of how my body would react to the chemo they were giving me. I was attached to 4 nights, as if stating it to everyone would somehow make it so.

Attachment is a Buddhist concept; at least that is how I know about it. The origin of suffering is attachment to three kinds of desire: desire for pleasure, desire to become and desire to get rid of. I have mentioned this flaw in my thinking before in my first blog on this site. The idea that “I’ll be happy when…” is all about attachment.

By Thursday night, it was becoming apparent that my kidneys were going to need a few more days of being flushed before I could be sent home. By Friday morning, Saturday was the earliest any of the doctors saw me leaving. By Saturday night, I was starting to try to wrap my head around how I was going to maintain my sanity if I had to send a second week in the hospital. For good measure, my attachment problems included being attached to being out and able to support Moe on Saturday as she emcee’d TEDx Bend.

What practicing Buddhists know that I clearly do not, is that everything is connected; people to people, people to circumstance, circumstance to coincidence, and coincidence to intention. Since everything is connected, the notion of attachment is a fantasy because we are already attached. The goal is non-attachment, but that expression doesn’t really do the concept justice. Non attachment means accepting the connection we already have with everything else, and knowing, for example, that when I was to get out of the hospital depended on a variety of interconnected things that were to variable and interconnected to actually predict.

The result for me was that by Thursday night I started to get depressed because what I had attached to as an outcome was not going to happen.   By Sunday, when I actually did get home, I was defeated, depressed and feeling very sorry for myself. I spent the day feeling like a failure. I failed by not meeting my goal of getting out on Friday. I failed by having a goal and an attachment in the first place, and I failed by being so disconnected from the world for so long. Looking back, of course I felt disconnected, I had unconsciously done everything necessary to feel that way!

I am humbled (again) at my own hubris, and desire to exert some control on the uncontrollable. My uber-white guy goal orientation serves me most of the time, but I have some work to do on knowing when to turn something over to the interconnectedness of everything and when something is actually appropriate as a goal. I believe deep in my bones that we are all connected to everything and that attachment is a source of suffering. But I also have taught myself that will and goals help make the world manageable. I have not learned the balance between the two.

BTW, my kidneys are fine. My treatment schedule has been pushed out a week to give them more time to recover. I have updated the schedule, and I am doing my best to not become attached to it.

A Week at St. Charles

I haven’t stayed in a hospital since I was 8 when I had croup and they put me in a tent. At first that I thought it was cool – a new adventure – but eventually I felt isolated and bored. I think the same thing is at play now. It’s a novel adventure, but the novelty is wearing off and soon I’ll just feel under-stimulated and isolated from the world, mostly the outdoors. I remember little else from 50 years ago other than everything was white except for some of the people.

I am at Bend’s only hospital, St. Charles, as part of the continuation of the “anvil from 13 stories high strategy” that refers to using the same treatment for my suspected microscopic cancer cells as they would for stage 4 lymphoma.  Even though I had no tumors anywhere and no cancer cells in my spinal column or bone marrow, people who present with my form of non-Hodgkins lymphoma are at higher risk for developing lymphoma in their central nervous system, which of course includes their brains. I’ll be here three different weeks over the next few months getting high dose methotrexate, a chemo drug that penetrates the blood/brain barrier that will prevent against any lymphoma cells making their way to my brain. Methotrexate is used in treating rheumatoid arthritis.  This high dose treatment marinates my brain with 3000 times the normal dose, so they like to keep those of us receiving the treatment close.

From my memory, hospitals have changed a lot. There are great works of art work and pictures of stunning Central Oregon landscapes everywhere, the carpets and wall colors are earth toned, warm and neutral. They stay away from white except for bed sheets. I have room service. That’s how they answer the phone when I call to order food. There is daily housekeeping. I know that because that’s what the house keeper says when she walks by my room, “Housekeeping?” I can wear street clothes instead of a gown, though rumor has it that some nJimHospitalWorkurses might try to make we wear a gown in case they need to ”access me” quickly, whatever that means. I have a table that turns into a stand-up desk I use when I work. Let me say, having seen lots of clients and friends with these, I now get it and LOVE standing to do office work.

There are a lot of old people on the “medical floor”. They appear to run the range from very uncomfortable and sick and grieving to totally out of it. Some have cancer. Some are withdrawing from addiction. A few look like I imagine I look; someone who is doing what must be done but wants to get out as soon as they can. When my doctor admitted me, my blood test showed I had a super-low white blood cell count, and they were worried about the dangers of me getting an infeJimsStCDoorction, so my door got some special signs that warned my fellow patients I was getting some bad-ass drugs and that people have to take “Neutropenic Precautions” to come in.
The signs made me feel self-conscious. I am trying to consider them as symbols of my ultimate badass-ness instead, as if the signs increase my status and level of cool among my fellow patients, especially when they see me working in street clothes, standing at a desk.

Mostly what I will do for the next 4 days is pee and work and wait for my methotrexate level to go down enough to be sent home. Moe is the emcee for TEDx Bend (she is also the lead organizer) and I want to be there to see her do her thing on Saturday afternoon. That’s the goal de jour; Saturday at 1 pm at Bend High for TEDx.

So that’s what IS. I’ll think about how I am feeling and when I figure it out, I write about that, too. If I were further along my understanding of myself, I’d probably be able to describe that now, but I am a work-in-progress and feelings are things I am late to find words for.