Endurance

MEN WANTED: FOR HAZARDOUS JOURNEY. SMALL WAGES, BITTER COLD, LONG MONTHS OF COMPLETE DARKNESS, CONSTANT DANGER, SAFE RETURN DOUBTFUL. HONOUR AND RECOGNITION IN CASE OF SUCCESS.

- SIR ERNEST SHACKLETON

The third season arrived about 2 weeks ago. Immediately after surgery, I was trapped in a hospital bed with nutrition, pain and waste managed through medical tubes.  For a couple of days, there was no need to leave the bed. By Day Three, the "self-serve" dilaudid was replaced with oxycodone (probably a good idea). On Day Five, I went home. Like Shackleton's ship, I am trapped in Subarctic ice.

Forward progress is blocked. The pressure of unforgiving circumstances forces cracks in a normally sea-worthy hull. I would prefer to do nothing. But, knowing that inaction will lead to disaster, I force myself to do the things that assure my survival -- move, drink, eat, sleep, take meds, make music, interact with others.

I watch videos on Youtube that show how others cope with ileostomies. I joined an "ostomates" social network. I see and read how others normalize their existence while wearing a pouch. The more I see, the less I want to be a member of their club. Shackleton and his crew voluntarily sailed into the Antarctic -- I had less choice about my journey. Still, I willingly head in the direction of a warmer future.

Shackleton and his crew had to leave the ship behind as it was swallowed by the thawing pack ice.

"Thus, after a year's incessant battle with the ice, we had returned........to almost the same latitude we had left with such high hopes and aspirations twelve months previously; but under what different conditions now! Our ship crushed and lost and we ourselves drifting on a piece of ice at the mercy of the winds"

Shackleton, On New Year's Eve 1915

Some of the crew undertook a momentous journey, battling frigid temperatures and a raging sea, while the others waited on Elephant Island. Shackleton returned 105 days later to rescue the survivors, who were all well.

"..... we had entered a year and a half before with well-found ship, full equipment, and high hopes. We had 'suffered, starved and triumphed, groveled down yet grasped at glory, grown bigger in the bigness of the whole.' We had seen God in His splendours, heard the text that Nature renders. We had reached the naked soul of man"

The naked soul of man. I, too, feel stripped of the daily masks I wear to appear hale and hearty to my shipmates on this voyage. Underneath lies uncertainty, sadness and inertia. Yet, as the captain of my own ship, I must sight the stars when possible and, when impossible, proceed by dead reckoning. Seasons change, pack ice melts, storms calm. I will set a sail and mind the tiller. I will catch the same wind that churns the sea and navigate out of this inhospitable region.

The name of Shackleton's ship? The Endurance.

When We Used to Camp

You can find me at home these days, completing a crossword puzzle, reading a magazine, or snoozing. Snoozing is a wonderful thing that we don't experience often enough. It is different from sleeping, though.

Sleeping usually takes place in bed in a horizontal position. Dorothy sleeps a lot during her chemo weeks -- the buildup of drugs is dragging her down. I can sleep, too, for about 8 hours. Then, my body wants to get up and move.

Snoozing or cat napping happens spontaneously in any position. Our pillow-back living room furniture is very comfortable. One can put one's head back and be "asnooze" within seconds. It is not the furniture to choose when you want to read Tolstoy's War and Peace or a college textbook. It is good furniture for reading a short story or slogging through a crossword puzzle.

When we used to camp, before kids, Dorothy and I would bring our lounge chairs and a few good books. We would set the chairs in the middle of a clearing if it was cool or in the shade of towering pine trees if it was warm. We would read, fall asleep, read, fall asleep until it was time to make dinner.

Now that was a vacation. Happy snoozing!

Like a Magnet

The future draws me toward it like a magnet draws iron. Tuesday, I will start the winter season -- one of isolation. To many, this time is to be kept at a distance. Avoided, if possible. It attracts me and creates a strange anticipation. It is coming, no doubt, like tomorrow's weather. I see anvil-shaped clouds in the distance and I can't help but wonder what they will bring.

I have weathered storms like this before -- hernia surgery as a teenager and gall bladder removal in my forties. The pain is familiar and I know that it will pass. The unknown factor will be the ileostomy (look that one up). I feel no fear, but uncertainty about what it will be like to have my body altered in such a way.

No matter what the future brings, it will be different from today. And that is what pulls me into it. I am curious about what I will feel and how I will adapt. I do not anticipate dread and sorrow. In fact, I am not aniticipating anything at all. It will be what it will be.

Today is beautiful. I feel great. There are storm clouds on the horizon and they are full of awesome, healing power. I wonder what kind of tempest they will bring. I am waiting...

85 Percent

People have been asking me about my health. I give the same answer to each person, "I'm getting better every day. I'm about 85% back to normal." I would wonder what that meant if someone told me that. Here is how I arrived at 85%.

My stamina is not all there. For example, I took the bus downtown today for work. I walked from the Charles Street Metro Station to the office on Pratt Street (about 3 blocks) and used the stairs part of the time. My leg muscles ache -- I never had that problem before. I was hanging pictures and things in the bedroom last weekend and I had to take a rest after a couple of hours. I climbed the ladder (many times) to remove ice from our gutters a couple of weekends ago. I got sore from that. I need to face the fact that I'm not in shape (yet).

My colon is almost back to normal, but it still rules the roost every once in a while. It has greatly improved over the "discomfort" I felt during the chemo and radiation (85%?), but it is not operating at 100% predictability (yet).

I am playing guitar again and singing (my voice is about... you guessed it). I can stand and play for an hour or so, but need to sit down after that. I haven't taken up the trumpet again (yet).

By March 22, I'm sure I will be 100% back in shape -- just in time for the operation on 3/23.


BTW -- Dorothy is doing okay. She still struggles through the chemo weeks, but it seems to be a predictable struggle. Not fun, but not full of surprises either. Keep sending good vibrations.

Season Two

When conditions become harsh, trees begin to shed their leaves as they prepare for winter. The tree does not mourn the death of its leaves, nor do we. Leaves change color, die and fall from the tree so that the tree may live.

The cancer that clings to me is dying. Radiation results are very good -- there is little noticable evidence of a tumor. By the end of autumn (on March 23), there may be no sign of it at all. Dr. S will operate anyway, but I may not lose as much surrounding tissue. Winter (being trapped) may only last two weeks. I may be reborn in April -- just in time for spring.

The tree does not mourn the death of its leaves, nor do we...

End Season One

I decided that my journey is like the turning of the seasons; summer, fall, winter, spring -- battling, dying, being trapped, and being reborn. Today ends Season One - Summer. These seasons do not fit into neat, 13-week boxes like Earth's seasons do. Nor do their order and place correlate with the current season (winter now in Baltimore). They do not represent the best that the seasons have to offer. But, they are my seasons and this is how they seem to me.

SUMMER
Summer lasted six weeks, a hot and relentless summer when simple things became effortful. Daily chemicals and radiation caused some parts to swell with anger, fighting for their ability to grow and take over. Other parts were deprived of the soothing balm of natural fluids. Throbbing anger and arid desert to be persevered on a regular basis. Sometimes, it required intense focus to take the next step: with waves of heat radiating through the soles of my feet.  At other times, the battle took a siesta and I was able to feel cooling shade and an easy mind. I could be productive then. Luckily for me, the siesta time outweighed the battle time (which I knew was always there waiting for me). The soldiers rested and healed, only to be torn apart again during the next battle. Now I understand why people say they are "battling" cancer. We have an amazing array of bombs and weapons to unleash on the enemy. They have a history of coming back anyway. So we do what we can without destroying the host. Shock and awe.

Tomorrow starts Fall, a time when we wait for the enemy to succomb to the harsh environment we created for them. Their sustenance dries up and their troops are not able to replicate. A time of dying -- for them.

Interestingly, the piece of music that I listened to and heard in my head the most during this season was "Close to the Edge" by Yes. The final verse echoed in my mind at least once a day.

Close to the edge, down by the river.

Down at the end, round by the corner.

Seasons will pass you by,

Now that it's all over and done,

Called to the seed, right to the sun.

Now that you find, now that you're whole.

Seasons will pass you by.

I get up, I get down.

I get up, I get down.

I get up, I get down.

I get up.

Thank you, friends and family for helping me to bear the summer.

A Little Rest is Good for the Body and Soul

Thank goodness for a long break from radiation. I keep in mind that the past two weeks were 4-days long with the holidays. Even so, they were just bearable with side effects that you don't want me to describe. I will say that I have a pain in the ass most of the time (Dorothy would say the same thing, but then she'd be talking about me). Dr. C, the radiation oncologist, gave me an extra 2 days without radiation -- making this weekend a 5-day break. The additional time allowed my body to heal some and my mind to heal more.

Since everyone deals with chemo and radiation indifferent ways, we must experiment to find what works. Here is what I am finding:

1. Lots of water -- I stepped up my water intake at the beginning of radiation, but I don't think that constituted drinking a LOT of water. Now, I drink much more and it seems to help my tissues stay hydrated.
2. A "regular" diet -- I talked about this before. Enough fiber to keep everything moist. Enough carbs and calories to keep me energized during the day.
3. Rest -- I can take a nap at any time. It amazes me how quickly I can fall into a deep sleep. I feel best when I am horizontal.
4. Sitz baths -- but not too hot. I think I was scalding myslef in the beginning, creating more distress than I was relieving.
5. Mineral oil -- to replace the natural lubrication that I seem to be missing. About 15 ml at night helps things work properly (thanks, Jeannie, for getting me to think about this).
6. Limited liftimg -- even weights over 5 pounds cause a strain and some untintended consequences. I'll get the kids to do the power lifting. 

Even with all the precautions listed above, life is no picnic. But it is bearable. I have another 2 weeks of chemo and radiation, then I get to heal for 5-6 weeks before Dr. S operates. I should start feeling better during that time.

Thanks for all your kind words and thoughts dear friends, family, and neighbors. Dorothy is doing okay this week -- it is an "off-chemo" week for her. Keep up the good wishes.