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Archive for the ‘wellness’ Category

Now that I’m about two weeks post-radiation treatment, it’s time to start balancing issues of fatigue with all the good things in life.

“Tired” is a little word that people tend not hear with any interest. Dorothy has been running interference for me in the last week or two, and she kindly tells people that I’m really tired and just not up to visitors or even extended phone calls at times, much less going to large group activities. So just as human nature can be, people hear “Dan’s tired” and they apparently then subconsciously say to themselves, “well, I’m tired too—so what?”

I worry that it’s coming across as an excuse not to interact with people: No, I am not Blanche Dubois having a spell. I am FATIGUED in the clinical sense.

Maybe Dorothy and I should start announcing my fatigue with a flourish to emphasize that I’m not just “tired”: think Michael Cain’s Alfred character in the Batman trilogy, firmly announcing “Mr Maryon is faTIGued at the moment and cannot be disturbed.”

To add to the confusion, I am still alternating periods of busy thinking and a certain level of physical energy with the flat-on-my-back-eyes-closed fatigue. Dexamethasone is a confusing master in this arena. I take it first thing in the morning. It replaces the adrenal-produced hormone cortisol, which naturally increases first thing in the morning to wake you up and then fades off by the evening so you can go to sleep. But dexamethasone doesn’t exactly follow the natural flow of cortisol during the day, because my sleep at night occurs in two-hour segments that usually require some kind of pharmaceutical intervention to get me back to sleep. Five hours a night is about average, and it’s just not enough.

My average day in the last couple of weeks cycles up and down in random and weird ways. I try to anticipate when I’ve pushed myself a bit too much, and then find a quiet place to close my eyes, even for 10 minutes. Usually on weekends, I have times when I get over-enthused about a project or activity and then pay for it with an hour-long nap.

When that happens, I just have to announce that I’m down for a while. Can’t predict it, won’t apologize for it. Yes, it makes for disappointment all around, but this is not the kind of “tired” that you can will your way out of. It’s a combination of bone-deep exhaustion, muscles like over-cooked pasta, fuzzy thinking, and general listlessness. You have to experience it to understand.

My best comparison is to when I had mono at the age of 33. And I hope Dorothy doesn’t mind if I bring up one of our better moments as a couple. It was the middle of summer, I had flu symptoms that weren’t going away, but the last thing I would have guessed was mono. I finally saw my doctor, who checked me over and ordered several tests. While waiting for the diagnosis, I was home on a Saturday morning, just stuck in my bed, and Dorothy scolded me into getting outside to mow the lawn. She basically said, you’ve just got a cold, don’t be lazy, get out and do something! So I dragged myself outside and pushed that lawn mower around in a daze. A few days later the doctor told me it was mono, with signs that my liver had been exposed to some kind of hepatitis at some point. I was ready to exact my revenge for that lawn-mowing incident. But I was too tired to care. And Dorothy felt really, really bad about the whole thing.

As much as I would like to be able to give advance schedules for when I’m available and perked up, I can’t. I have to play with what energy levels I have hour by hour. I save up everything I can for work hours so I can keep a regular schedule, with occasional lunch-break trips to a quiet spot where I can close my eyes and find a short moment where something in my brain resets and I feel back on track. I schedule weekend and evening events cautiously, trying to anticipate getting a little sleep beforehand. It usually works.

But really, really, there’s no predicting and it’s NOTHING PERSONAL. Dorothy is dealing with this unpredictability quite gracefully. We try to plan what we can, but she understands when I have to say, “Sorry, I have to go lie down for a while.”

The best option would be to just check out completely for a while. Wish I could, and maybe I will have to if things get any worse. But in the meantime, folks, I’m just doing my best with my faTIGue.

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In November, I decided it was time to scale back living in the awkward place I call cancer culture.

I gave away my red and yellow stronger than cancer T-shirt and all the CANCER SUCKS buttons that were cluttering up a kitchen drawer. I would have given away a couple other shirts but I couldn’t find them. Just as well.

I am keeping the two individually designed shirts that my daughter and wife had made for me. One is a blue shirt with huge white letters, CANCER SUCKS, that earned me a photo on a Cancer Wellness House newsletter and the cover of their pamphlet a few years ago (they photoshopped out the sentiment, and some sweat spots, and stuck their logo on the shirt for the pamphlet). I don’t wear it any more, but I keep it as a reminder of Rachel’s support for me over the years. She was standing with me in the photo that ended up on the brochure, and I figure it was her charm that led them to use the photo.

The other shirt I’m keeping is our family T-shirt for the 2011 Survivors at the Summit, with Love is Stronger than Cancer on the back. We had a lot of interest from other hikers wondering where they could get one, so maybe we should produce it in quantity some day.

That’s about the only sentiment I want to wear any more. I don’t want to wear my anger or my attitude on display in public, or wear the slightly boastful cancer isn’t for sissies shirt. And I don’t feel a need for a team identity even though I know there are many people cheering me on and praying for me. All these things have their place, but I’ve decided I want them out of my daily life.

I’ve given cancer enough attention, I think. It’s always going to be there, but there are plenty of other things more worthy of my time. I’m not sure I want to attend any more cancer events in this new year. I will keep up with the excellent Living Well With Cancer support group that I’ve been a part of for over four years. People have come and gone from the group, and it’s always good to meet new friends through it.

Of course, there are times when I miss those friends and wonder if it’s worth getting to know people who are on a terminal course. Of course it’s worth it, but in a bittersweet way.

And yes, I do think it’s ironic that my last six blog posts have been about cancer, cancer, cancer. Really, I’ve got to try something else. It’s something like the old adage that you have to keep your eyes on the goal, not the ground at your feet. Or is that you have to keep your eyes on the horizon when parachuting, because if you look at the ground you get disoriented? Hm. I do tend to get those metaphors mixed up.

The last few weeks have been tough for personal cancer news. A friend of my daughter Kate lost her sister, in less than a couple of weeks, to cancer. A 17-year-old neighbor is in the middle of harsh chemotherapy for widespread testicular cancer. Seventeen: that is just wrong. I’ve recently been reading blog updates from another metastatic prostate cancer survivor whose kidneys are failing. In the last three weeks I’ve had to medicate some serious, random pain; I’ve met with a new local oncologist (who can take care of basics when I’m not traveling to Vegas) and an interventional pain specialist (just a getting-to-know-you kind of introduction, although he won’t be doing anything for now); and will meet next week with my radiation oncologist to talk about options for spot radiation to my bones.

Cancer’s getting enough of my time: I don’t want to give it any more space in my thoughts and daily life. I’d rather be thinking about this year’s hiking season in Torrey, or where to go when our family takes off for Hawaii in a few weeks.

So, farewell to cancer culture. I don’t want that word hanging around at the edge of my vision any more.

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Might as well start with the well-worn symbol of being in cancer treatment: it’s like that proverbial, rickety roller coaster that I remember from trips to the Lagoon amusement park in my youth.

borrowed from Shaan Hurley's Flickr page

Everything is going up and down all the time: my mood, my sense of well-being, my lab numbers. You take a steep plunge, roll back up, then level off and catch your breath, however briefly, before the next steep drop and following lift as you rattle up the tracks. The only difference between this and a real roller coaster is that you never know what’s coming around the next bend.

My December visit with the doc was not easy. The docetaxel was not doing much, so the key numbers were way up (PSA 300-ish from about 150, CTC 25 (yikes) while it was previously in the 5-8 range). My red blood cell count was way down, pain was getting in my way, I was fatigued from anemia, and so on. “In the Bleak Midwinter” was my theme song. That was a rare day when I showed signs of a new side effect, for which I believe the technical term is “crybaby syndrome”. I was just weepy. Damn, damn, damn. Cancer just wasn’t fun any more.

The doc was unusually serious, almost somber, as we talked about pain management and a few possible treatments I could change to in case the new one, Zytiga, didn’t work. Zytiga  (aberatone acetate) is similar to my first clinical trial drug, Tokai’s TOK-001 (now christened with a real name, Galeterone), so it’s possible that my cancer cells have already learned how to get around it. Possible. We wouldn’t know until I tried it.

I trudged out of the clinic, moping along to catch the bus, too tired and sad even to stop for my favorite sushi. The plane was an hour late going home, the sandwich I finally ate at the airport was so-so, I just closed my eyes on the plane and tried to sleep.

So, fade to black on that one. This week the scene is brighter. We’re now four weeks into Zytiga, and the numbers are down, and up: PSA 133,  CTC 16; red blood count up to nearly normal (from a seriously low count, although I don’t remember the numbers). It was like December never happened. I’m happy, the doc’s happy, I shared homemade cookies with the staff, did my brief TV interview, and skipped out of there a new man.

We’ll keep on with the Zytiga for as long as possible, and there’s yet another new clinical trial that will hopefully be waiting for me when the Zytiga poops out. At least that’s this week’s status. Things do change frequently. There’s always the sudden drop coming around a bend that you don’t anticipate, and your stomach falls while your head is spinning and you don’t know whether to breathe or puke or scream.

For now, I keep telling myself, just hold on and enjoy the ride.

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four years

February 23, 2007: My urologist phones me at work at 2:00 in the afternoon to tell me that my biopsy is positive. I have prostate cancer.

Life as I know it disappears.

Four years that seem like at least ten. Physical changes, emotional upheaval, losses and losses and losses again and again.

There is one constant loss through these years: the loss of certainty. There’s no planning for the future, only short-term decisions and doing what I can do, here and now.

I’ve met many good people in these four years, people who have taught me about life and living. Some have gone into remission and moved on. And I’ve lost some friends to cancer, good people who watched the inevitable happen and met their deaths with grace and peace.

Life is fragile. Love endures.

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The last two months have been a blur. This is turning out to be one of those overloaded years: a graduation, job hunting, trip halfway around the world, emergency return from halfway around the world, wildland firefighting, wedding plans, mission call… and that’s just the kids. Who are not kids, but adult children.

We like to be involved with the kids, and so time has been flying by. I’m on my fifth month of the clinical trial, which may end soon so I can start Provenge, the first vaccine-type cancer treatment. That five months has been a gift, time that I would not have otherwise had from a drug that’s not yet available for general use. It’s been worth all the trips to Las Vegas, and it’s been reassuring to have family and friends help with travel and a place to stay.

Our summer has seemed very short, since it was cold until June and we just saw our first hailstones yesterday morning. Not enough time or energy to work on landscaping, although I hope to have some time before November, when the snow starts in earnest.

Survivors at the Summit 2010

For three years in a row, our family has marked the summer with a hike at Snowbird in August. Survivors at the Summit is the annual fundraiser for the Cancer Wellness House in Salt Lake City. After a pancake breakfast, you can hike or take the tram to the top of Hidden Peak, where there are bright yellow flags flying with names written on them. It’s a beautiful tribute and a chance to reflect on how that disease has changed the lives of so many people.

This year I sponsored a flag for my sister-in-law, who didn’t know a year ago she had lymphoma. And another flag flew for my friend Wayne, who stopped chemo treatments when he was ready to let go and enjoy the time he had left, rather than endure the side effects for a few more months. I was in Vegas the last time he came to our cancer group, and didn’t hear the news of his death for a couple of weeks, so it was a disconnected sort of experience. I didn’t get to say goodbye.

Survivors flags

Last year I wasn’t in great shape and the weather was icy (about 40 degrees at the summit in a rare storm), so we skipped the hike, but this year we went for it: 3 miles, 3,000 foot climb. And it took about 3 hours with all the stops to catch my breath and reassure myself that I wouldn’t have a heart attack. Which I did think, several times, was a possibility. But we just focused on the trail, making up the next steep stretch, and stopping now and then to look at the canyon and valley below.

When I dragged myself up the final steep slope, literally taking it a step at a time with a couple of hiking poles my nephew shared, I was surrounded by family. I wasn’t going to get all emotional or anything, but I did. When I reached the top and rang the big metal bell, it was bittersweet. I’ve seen friends recover from cancer, and I’ve had friends die from cancer, and I’m somewhere in between. Memento mori, indeed.

Wayne Knighton

It’s been a hard 3+ years, and a crazy summer, but I’m happy to have support on this unexpected twist of the road. All you can really do is look ahead to the next bend of the trail, and keep walking.

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uncertainty

Rule #1 of living with cancer: learn to live with uncertainty.

(borrowed from new river academy's Flickr set)

The hard thing with explaining cancer to people is that they see it as a win/lose, one-way street, black/white experience. You’re sick, or you’re healthy. You are in remission, or you’re terminal. You’re giving up hope on treatment, or you’re going to fight this thing and Win! Win! Win! You’re up on top of the seesaw, or you’re hitting bottom.

Nobody looks at heart disease or diabetes or Parkinson’s quite the same. We’ve been conditioned to see Death looming whenever cancer is in the picture, and so things seem to get polarized. It scares us.

To quote the facilitator of my support group: “Cancer is a chronic illness that can be managed for years.” That’s a fact that doesn’t seem to register with most people.

I had a cheerful conversation with my sister-in-law on the weekend. She’s about three weeks into intensive treatment for lymphoma that went undiagnosed way too long. Last week she was in horrible shape. It wasn’t looking like any treatment would be worth it, because she couldn’t stay strong enough to endure the chemo. But then she was given a steroid to reduce inflammation in the brain, which brought back movement and verbal clarity and best of all, her naturally cheerful mood. Marinol brought back her appetite. Now she needs to build strength to try another, less harsh, chemo.

We talked about a lot of things, and of course we talked about uncertainty. Traumatic situations like this tend to narrow your focus down to the present moment. You are constantly on the alert for new test results, watching carefully to see if treatment works. You worry about the future, if you can spare the energy for that. But mostly you have to stay in the present moment, because if you go anywhere else you’re lost. It’s exhausting to have regrets for the past and to project your anxiety into the what-if’s of the future. The constant difficulty is the uncertainty: will the next biopsy show improvement? will the next scan show tumors regressing or spreading? will the next drug be tolerable or will it spin you into more problems?

So many cancer friends have told me how they have learned to adapt to uncertainty. For me, it’s like being able to put that anxiety into a bubble and let it hover just outside my present-moment thinking. Yes, there’s uncertainty there. It will be there whether or not I worry about it. When I get to a point that I have to make a decision, I’ll pop the bubble and deal with the anxiety. Then, after a decision is made, the anxiety fades and I move on to the next step: relief at an effective new treatment, or more decisions on how to manage symptoms or pain or whatever. Over time, the uncertainty will return, the anxiety will build, but again I’ll have to set it aside in the bubble until I can do something concrete.

I’ve just passed my three-year point with my diagnosis. I’ve had several effective treatments that have let me live happily, with no pain and few side effects. One treatment option is now losing effectiveness, so I’m working on the next step. I have no idea if my next treatment will be highly effective or not. Every person has a different experience with the same treatment.

Cue the uncertainty. And learn to let go.

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horizon

(Flickr image borrowed from Sebastian Mamy's photostream)

Time is getting away from me this month. I’m deep into my androgen deprivation therapy, and while I’m physically in decent enough shape, and mentally I’m mostly there, it’s motivation that’s severely lacking. I just don’t care enough to take on a new project or even write blog entries. Lost in the fog.

My cancer support group had an interesting discussion a couple weeks ago about hope, which is always a topic of interest. What is “hope” anyway? Most people assume that it’s about a positive outcome. So we who have cancer are told to have hope, to stay positive, to have a fighting spirit. And then people like that bicyclist with the bright yellow logo come along and act as if all you have to do is want to be healed and you will be. Sure, it’s great to have examples of people who beat cancer. (It would help to have millions of dollars so you could consult with the best oncologists anywhere in the world.) It’s amazing to see new treatments come along that are highly effective. But the good stories can set up the expectation that if you don’t beat it, you somehow didn’t want it badly enough. Which really is a way of putting the blame on the person with cancer. “C’mon, chump, if you still have cancer you obviously want it…”

Hope, for me, is to find the best way to live given the circumstances you have. There are limitations everywhere in life (and please don’t get me started on the law of attraction and related BS). Sometimes we do create the limitations, but mostly they are just there. My perspective on life is that we are in one phase of existence (that this is not the only existence we will have) and knew going into it that there would be unpredictable, sometimes unpleasant and painful circumstances. For me the challenge is to stop finding someone or something to blame, to stop whining about the raw deal I got, and get on with making the best of whatever I have. I will have increasing limitations on my physical health, but at every stage there are always choices I can make to live happily within those limitations. That is my definition of hope.

When things get a little dicey for me, I have a few reminder sayings that I use to get my thinking back on track. Today, I’m thinking about one of them. It came to me when I was doing my deep-relaxation thing, wanting to figure out where my direction in life would be coming from. I was feeling unfocused and stressed about a bunch of things. And the answer came through clearly: Look to the horizon. So I do that, when I’m too focused on the little things. I stop and literally look to the horizon. There’s where the future is: I can’t see the details, but the horizon is still there, and I can still keep moving toward it.

(p.s. As noble as all that sounds, I do reserve the right to whine now and then.)

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