Derek K. Miller: The last post

Life has been busy, life has been good. And so it is lived.

I have been working almost 24x7 to get emWave2 to ship. It is the most complex product we have ever put together, but we have great hopes of what it will do for people.

We were done, and I was exhausted. Then my father-in-law passed. Time to come to my senses...

I took a few days just to recover. I had some worries about my oncology checkup, which is now biannual. Everything was clear! I will likely have to deal with after effects of missing a good part of my colon and long term effects of shingles (frequent head aches) for a long time, but as long as things continue this way, I am lucky. My oncologist had retired, and his successor (ex Stanford fellow) was more brutal with the prognosis, which is good overall. But with a 30% projected mortality, you would not fly a plane.

Ergo, I am mortal - like everyone else. However, there is life after cancer. And I am optimistic, and need to make the best of whatever time I have, whether it is a year, five, or 40!

I need to focus on greater balance in life, and really start working on the things that are important to me. Time to catch up with writing, and this blog. There are experiences I had that might be helpful, and thoughts that interest me. The human condition is fascinating.

This evening, I was moved further into action. I came across Derek K. Miller's blog - penmachine.com. He wrote "The last post" that I could have had to write. Shortly before passing of stage IV colorectal cancer at the young age of 41, he prepared the entry to be read on his blog posthumously.

Simple, honest, to the point. I wish, I will have the grace to announce my passing in this way, when the time comes.

My heart goes to his wife, to his two girls. It also goes to the family of a friend, who passed after a 15 year struggle a short while ago. Cancer strikes, and takes its toll without hesitation.

When she was just 16 my daughter played Vivian in the play Wit by Margaret Edson about an English professor dying of stage IV ovarian cancer. A tour de force for her, and a strangely effective preparation for my ordeal one year later. She recited this poem by John Donne - it is one of the key themes of the play.

DEATH be not proud, though some have called thee
Mighty and dreadfull, for, thou art not so,
For, those, whom thou think'st, thou dost overthrow,
Die not, poore death, nor yet canst thou kill me.
From rest and sleepe, which but thy pictures bee,
Much pleasure, then from thee, much more must flow, 
And soonest our best men with thee doe goe,
Rest of their bones, and soules deliverie.
Thou art slave to Fate, Chance, kings, and desperate men,
And dost with poyson, warre, and sicknesse dwell,
And poppie, or charmes can make us sleepe as well, 
And better then thy stroake; why swell'st thou then;
One short sleepe past, wee wake eternally,
And death shall be no more; death, thou shalt die.

Fair winds to all of you.

 

iPad !!!

Like many faithful, I had reordered an Apple iPad. Since we have a MiFi Mobile hotspot, 3G did not seem necessary. So I ended up in line yesterday morning at around 10am. The experience was well orchestrated, and a painless 15 minutes later I walked out of the store with my 64GB iPad. I had prepared some apps the day before, and a few minutes later I was in a coffee shop setting it up. I have been using it ever since...

I have used computers since the 70's, and PCs since the 80's. I have several Newtons, Palms, a Mobile PC (that got the least use of any system I have ever owned), and a couple of iPhones.

Apart from my experience with my Atari and first Mac, this turned out to be one of the most fundamental changes in using a computing device - more amazing than the iPhone. I can predict now that this will replace about 90% of my computer use, and I tend to take my MacBook Pro everywhere. Interacting with information on an iPad is much less intrusive somehow, more like carrying a book than a computer. It is clearly more for consuming information and interacting with people than creating, but that might be just a matter of size and the current apps. Brushes clearly is an example of a creative application that already excells, and the keyboard is more efficient than my current hand scribbling would be for typing. But I would still prefer my MacBook Pro for serious authoring, it is simply the more efficient tool for that. A MacBook Pro makes a great iPad accessory.

What is amazing is the maturity and loving detail in iPad interaction. You have to use it to feel it. The dynamics are deep, feel natural, and are very compelling. Information becomes physical, it has weight, inertia, behavior, symbols become physical objects.

An amazing achievement for a first generation device.

It is hard to fathom, how this category will evolve. It clearly has to be completely untethered from the desktop, right now it cannot exist without iTunes. It really wants to be a network device. My next one will have 3G for sure, and it needs a camera. And it needs a mini USB, perhaps as a slot adapter, similar to the camera adapter, but acting as a full host. Most peripherals will likely be networked, my current, favorite peripheral are BT headphones from Sony, but I really do not want a laptop on my travels...

Ponyo

All of the films by Hayao Miyazaki are masterpieces in my mind. They appeal to all elements in my being and soul. Ponyo is a masterpiece on all levels.

Just watch it…

Fresh paint, new title…

I am starting over with this blog, new title, new cover, nothing custom. I will be able to maintain this from anywhere including that iPad being assembled in Taiwan right now with my name on it. No distraction from this or that tool, custom script hacking, etc. Just writing. How did I get here?

After the end of chemo last November, life slowly returned to normal. Which means, there was less pain, but all my bad habits crept back.

More than 50 years of life have ground deep ruts in my path, and I simply slipped back. My habits are not bad - I brush my teeth and floss, wear fresh underwear, always make the bed, and clean my dishes. But I focus too much on the things that must be done, and not on the things that should be. How much time do you spend on the things that would matter on your death bed versus what you just have to do today?

I spent too much time on work, and not enough with the people that matter. I spent too much effort staying on track, and not enough getting off the track. I want to be there for the ones I love, I want to write, learn music, move to my next stage. And I am not and do not…

I do not think of myself as stressed, but deep down I really am. So I became ill again. First with a bad sinus infection. Several weeks later, I realized that I still had a continuous, low level headache on my left side. My left eye and ear were aching, there was sensitivity on the top of my skull. I became nervous.

Time for my yearly colonoscopy, done almost to the date of my first cancer diagnosis. The results were ok, not great, but ok. Since I was in the mode, I made an appointment with my Dr. concerning the headache.

There was no definite diagnosis, since there was no rash. Shingles was at the top, temporal arthritis was second, and pain due to brain edema third - a remote chance of tumor. It clearly was the elephant in the room, the 'c' word not mentioned. I immediately scheduled a CT scan of the brain. I was not panicked. But that evening I told Byron, my son, that I was scared. It kind of burst out. Then I felt bad for making him worried.

The next morning I saw a rash! What would have been bad news was suddenly good. I rejoiced over shingles, confirmed by my Dr. later that day! I cancelled the CT scan with elation.

Shingles are not fun! As I am writing this, my left eye is swollen shut. I have an ugly rash reaching from my skull across my left eye lids to my nose. It is burning, it is painful. There are stabbing pains in the rash, the ear, the eye. Shingles often lead to permanent scars, vision and hearing damage, and long term neuralgia. I feel pain, malaise, headache. Up to this morning, I was depressed…

I am on anti-viral medications, and I pulled out a vial of Hydrocodone from surgery a year ago. It brought a relaxing relief for a few hours, but by evening the effect was gone. I stopped taking them. I have not slept well for many days, so I tried Temazepam, also left over from my days of  tribulation. Not sure it helped much. Today I decided to just use Tylenol for now, wear sun glasses, if I go outside to not frighten the little kids with my look, and ride that river.

The worst is yet to come, when the rash postules burst. I will be infectious to Cheryl, who has never had chicken pox.

It will pass. Just a few clouds drifting by…

It's not cancer. All I have to do is remember, and this is easy!

As I sit in bed unable to do much, I can be easy on myself. I can procrastinate on those taxes, I can leave myself an out, stop the cart, get out of the ruts. Put some paint on this blog, and start some new patterns. As I was laying awake at night, I had some fascinating ideas, I can fabulate about those!

And at the times, my eye is not burning too much, I can drag out my Nintendo DS and be a kid. I started Final Fantasy III afresh. Should have played it when Bryn was doing it some three or four years ago, and be in her head with her. Now she is far away, merrily pouncing into her future. But in playing, I can remember. And in May, I will see her on stage in Portland.

Listening to Yagya "Rigning"over and over - hypnotic... Thinking out loud by writing.

This is going to be a great spring!

Involuntary Pause

There has been quite a long pause in my writings necessitated by two unplanned hospital stays due to complications. The last one was a close call, although both were caused by life threatening conditions.

Sometimes the treatment is worse than the disease (at least at present). It’s the “pernicious side effects” that cause a lot of suffering and may kill you...

It turns out that I might be missing an enzyme that metabolizes 5-FU, so the chemo created a cumulative increase in the substance in my body. I also ended up with a touch of optical neuritis due to Oxaliplatin, so I cannot use that either.

The net-net is that I am now enjoying a five week long break from chemo, most of the side effects are gone, and I am feeling “normal” - which is GREAT!

On July the 13th I will get a second opinion from an oncologist at Stanford, who happens to be also a trusted advisor by my treating oncologist - I found that out after the fact. Hopefully, we can come up with a tolerable regimen. I do not want to give up the advantages of adjuvant chemo. With my odds of hitting the negative side of the statistics, I need all the help I can get!

Meanwhile, I will try to fill in all the gaps of the last two months. It’s been adventurous...

One Dimensional

Cancer treatment - operations, radiation, chemo - has a very dramatic impact reshaping one’s life: the richness and harmony of one’s existence is reduced to One Dimension ruled by a feeling of Chaos, despite the regularity of the chemo calendar stretching through the months ahead.

Maybe because it’s a “down” day, but today I really feel three powerful, basic wants:

1. I want my body back!

I have lost the comfortable, quiet harmony of my body and me! It has been replaced by an ever changing cacophony of strange sensations that make me start to believe in dualism. It is not the scars, the mediport implant & blood clots. The aches, pains & budding nausea are only part of it; my mouth feels chafed & filled with ever changing tastes, most of which are awful (licorice and curries seem to help in my case). My favorite drink, water, tastes bad! Neuropathy adds undesirable tingling (I call them collectively the cribbles), while at the same time numbing sensations that removes simple functions. Normal temperature feel icy cold, and cold drinks can be life threatening. Every time I chew the first bite, the muscles in my jaw sting painfully. There is the subtle drone of headache. And on a day like this, the total combination of me is simply …useless… not good for much more but hanging in bed, or completing simple chores.

Mainly, the harmonious symphony that was the assembly of all that I was seems lost - for now. It is replaced by a jarring concoction of sensations all screaming for attention.

In my case, none of these issues are extreme, so I have no reason to complain! But it really feels like my body is not my own any more. And - damn it - I liked it for 57 years, and I want it back and feel one with it!

1. I want my time back!

Unless you have the big bomb of a complication putting you back into a ward, which really messes with your schedule, everything seems centered around chemo day, and the good and bad days after it. At this stage of my treatment, very little is predictable. The first two weeks, I had two good days. Then I was in hospital for a week, and no chemo for that. The impact cycle is anywhere from 7 - 10 days, so with a weekly schedule, I am never not under the influence. For two days I am hyper due to Decadron, while completely tired, since I do not sleep. Then I crash.

I have a good amount of functionality, tolerate the chemo reasonably well, and had some good days, so I am grateful. But really my whole life is centered around this experience and how it makes me feel. It is clearly, a significant loss of control. I like to do many things, now I am often left with limited choices.

It is difficult to live up to the commitments to people important to me - family, friends, work. I like doing stuff instead of listlessly hanging out, and I want my productive time back!

1. I want my social interaction back!

In many ways, this is contradictory to my writing here. And it certainly is not the fault of caring family, friends, and colleagues.

But due to experiences 1. and 2., and perhaps the need to cheer myself forward to that distant goal of completing treatment six months from now, most of my conversations are about cancer and me. I really would like to move beyond it, but am not sure I can at times. On a good day, work makes it easy. But that is still the exception.

I made a conscious choice to be open about my cancer and its experience. Many people tend to be more private, sometimes out of fear of prejudice, sometimes out of need for privacy and not wanting to be a center of attention. I highly respect that. Perhaps I am just a noisy guy, but after my diagnosis, and when I prepared for my journey, I noticed that there really was not that much information about what it really was like to go through this. That is when I decided to be completely open.

Every one of our journeys dealing with cancer is likely to be different, and mine is more hopeful and easier than many. But I do hope my openness will help others.

Enough kvetching, but I want my body, time, and social life BACK NOW…

And I want all of these in more than one dimension!

Life in this world really is a most beautiful thing…

About this...

Originally I was playing around with a blog in 2008. It never went anywhere. But the last two months changed all of our lives, and especially mine. For me, cancer was a truly life changing event intensifying every moment of existence,

I was lucky enough to work with HeartMath. emWave and Quick Coherence® gave me the key to physiological/emotional coherence. Throughout the experience, I have been able to transform fear and anxiety into staying focused on moving forward. I have been awake at night due to pain and drugs, but I have not spent a minute afraid of the future. Doc Childre together with all the great researchers at the Institute of HeartMath have created a unique gift to the world, it has made my experience very different from what I would have ever imagined it to be.

I am also grateful to Rusty Hammer and Randy Pausch, who walked a much more difficult path than mine with grace and caring. They are my idols. And I am grateful to my wife Cheryl (my advocate), my family, and all the friends, who have shown interest and care.

When you enter this journey, you will be surprised how many people really care about you. Don’t walk it in silence. Cancer is not shame, it will impact all of us, but together, we can have the strength to transform the experience.

I can truly say, cancer made me live to be more alive than I have ever been!

Note: I started this blog two months after the initial events, so it will take me a bit to catch up with all the experiences and thoughts that have accumulated.

If you want to read this from the beginning, click here...

May 21, 2009