Going Forward -- Turning Back

I started a blog posting (actually, I completed it) while I was in Tampa last Thursday while drinking scotch and watching "A Perfect Storm." For some reason, my Blackberry app failed to write the blog to this site. As usual, it was good that it happened.

The business trip went okay, but the evening did not go well. I cooked my own food (well, I microwaved it) and thought that I'd do fine. There must have been something in the processed beef, chicken, and/or gravy that affected my system. It surely could not have been the scotch.

Now, I have another chance to write what I wanted to say. It has been stewing in my brain for over a week and it is clearer to me now. It is about energy.

For as long as I can remember, I have remained calm and focused during a crisis. I tell my friends to watch out when it is over, though -- that's when I fall apart. This predicament in which Dorothy and I live is now a year old. For me, it has been months and months of intense focus -- firstly on surviving the chemo and radiation, then on living with an ileostomy, and finally on learning to use my insides again. Energy was directed toward activites to take my mind off the pain and humiliation -- recording and producing a CD, getting work done, etc. This last phase is taking longer than I predicted. Things are getting better, and I note the progress that is made week-to-week. But, I'm not finished healing. I wish I were.

My emotions live close to the surface now. In addition to the obvious reason -- surviving cancer treaments -- they signal the "after time" when I typically fall apart. This time, I feel more like it signals a turn back to an earlier time.

You see, my emotions used to run near the surface. I never saw that as a flaw, but much of the world did. I learned self control, which can be a good thing. Self control involved wearing a mask to filter out pain and my real responses to it. I put on mask upon mask, becoming innoculated against a dog-eat-dog world. Like chemotherapy, the mask blocks good as well as bad. I am steady as a rock, and, as Paul Simon wrote, "a rock feels no pain, and an island never cries." A land mass never says, "I love you."

In addition to experiencing more feelings, I move slower. People used to complain that I walked too fast. I was conscious of the fact, and I did it because I could. My body felt good -- I was 55
going on 27. Now, I feel like I'm 56 going on 57. That, too, is not a bad thing. I knew that things would change, so I tested my body by whitewater rafting, mountain climbing, biking, and hiking. When Dorothy and I walked through the woods, I would be on a hike and she would be on a nature walk. I wanted to feel my breathing and my heart pounding in my chest. She would stop to notice flowers, insects, and wildlife. I missed it all, but I felt good. Now, I want to walk beside Dorothy so she can point out what she sees -- what one can see when one looks closely at the world.

I have been out of balance for too long -- ignoring the yin for the yang. I want to relearn how to be part of the world around me. To reawaken the artist in me. You will soon be able to hear Blue Moon Revue's new CD, "It's About Time." You'll hear a lot of feeling that I never knew I was laying down on the tracks. My body is nearly finished healing, but my spirit has a long way to go.

Giving Care

No other act of love can compare

To putting one’s life on hold for another

Be thankful to those who love and give care

Those who anticipate pain and who repair

The things distracted nurses didn’t bother

No other act of love can compare

Who carefully weigh the feelings they will share
And the personal pain they will smother
Be thankful to those who love and give care

To be a friend, a father, a brother
No other act of love can compare

To soothe with warm, soft strokes through hair
Like a sister, like a mother
Be thankful to those who love and give care

The person who could be anywhere
But here, and chose to share
No other act of love can compare
Be thankful to those who love and give care

The Final Season

It has been 2 months since my last post. I'm sure that breaks some sort of blogging rule (post often if you want people to visit your site, or something like that). Don't worry, dear reader. My absence was due to the fact that I was enjoying life and not sitting in front of a computer. I'll catch you up...

An ileostomy is not something I would wish on someone else, but one can get used to it. There were some advantages -- mainly that I had advanced notice when it was time to take care of myself (empty the pouch, etc.) The disadvantage came when the darn thing leaked at inopportune times. I was always prepared, so there were no embarassing episodes to report. I struggled most with how to dress. The pouch was attached to the right of my navel, about an inch down. I could wear my pants on the hips with an untucked shirt, or above the waist (a "chestie" as we used to call it). I preferred the former, but such a casual look was not appropriate in all business settings.

I made the mistake about a month ago of searching the internet for information regarding the upcoming phase -- ileostomy reversal. What I found was a mixture of fact and fiction that surprised and depressed me. My vision consisted of about 2 days in the hospital and one to one-and-a-half weeks home from work followed by full functionality. Why did I think that this phase would be any easier than the others?

In truth, I spent 3 days in the hospital passing much too easily the all-liquid diet I consumed, followed by 2 weeks at home trying to regulate my system. Folks, don't take your sphincter muscle for granted. It performs a valuable service, allowing you to "hold it" much of the time and to "go" at regular intervals. Imagine that it did not serve you in this capacity and you'll know what I am experiencing at this phase. I asked Dr. B the surgeon how long it will take until my bowels function normally again. "Weeks? Months?" I asked. "Weeks. Months." was his reply.

You know by now that I don't take these things lying down (actually, I do take them lying down but I am not defeated). So, what will I do about the situation? On the one hand, I will watch my diet. Dr. B prescribed probiotics to replace the natural flora in my digestive system. The right combination of soluble and insoluble fiber will help me digest my food and maintain the right consistency of poo (a medical term for poop).

On the other hand, I will start exercising my PC muscles. Yes, Dorothy, there are Kegel exercises for men. They are the same exercises used by women after they give birth to strengthen the abdominal floor muscles. According to my research, men use Kegels to solve a variety of problems. Urinary incontinence is a primary reason, followed by fecal incontinence. AskMen.com states that Kegels will also help me "control [my] orgasms and ejaculations and last for longer." That's the bonus -- the icing on the cake. In a few weeks, when I have strengthened my PC muscles, I will not only be a "regular" guy, but I will also "be able to hold up a wet towel with [my] erection."

Now that's something I couldn't do before.

I am Thankful Today

I am thankful today for:

• Friends, coworkers, and family members who keep me from going off the deep end.
• Manufacturers of pouches (Hollister, Nu-Hope, etc.) who continually redesign their products to make them discreet, comfortable, and easy to clean and replace.
• Medical professionals who combine expertise with empathy, going against the charted course when it makes sense to do so when the patient is breaking down.
• Food Faeries who offered their tasty cooking so that we could feed the family while we were down and out.
• The desire to live a long life and the willingness to do whatever it takes to live one.

I am especially thankful for Dorothy, who lifts me up even though she bears a heavy burden herself. It is good to hear her laugh as much as she does these days. We've both been through a lot and still have a few hurdles to jump. But, all-in-all, our home is a happy place. I'd hate to admit it, but having a new kitten helps.

The Marriage of True Minds

In 1983, I was at a loss to write a song for our wedding. I pored through love poems and readings. One night during dinner I jumped from the table and wrote a song based upon a Shakespeare sonnet (#116). His words are copied below... they are truer for us now than they were when Sharon Martin sung them at our wedding. Gerry and I are recording a Blue Moon Revue CD -- I am hoping that Suzi Eldridge will sing a beautiful rendition of this wedding song.
(BTW -- a bark is a ship.)

Let me not to the marriage of true minds
Admit impediments. Love is not love
Which alters when it alteration finds,
Or bends with the remover to remove:

O no! it is an ever-fixed mark
That looks on tempests and is never shaken;
It is the star to every wandering bark,
Whose worth's unknown, although his height be taken.


Love's not Time's fool, though rosy lips and cheeks
Within his bending sickle's compass come:
Love alters not with his brief hours and weeks,
But bears it out even to the edge of doom.

If this be error and upon me proved,
I never writ, nor no man ever loved.


William Shakespeare

Love Note

Humans are the most unformed creatures
When they are expelled, kicking and screaming,
Into the world.

Still shapeless, they unite with each other
To bring another generation, clawing at the air,
Into their lives.

I was formless when you took me in
And pledged your troth, glistening and hot,
Forever and ever.

Forever and ever and ever.
Through sickness and health, not to destroy,
But to build up.

How could I know the turmoil
Life had in store, crouching in the dark,
Waiting to pounce?

How could I know that you,
Of all the women in the world, would be
The one to stand by my side?

We face the world together.
Nothing in all its animal rage can
Defeat us now.

In the end you and I
Walk slowly and carefully, arm in arm,
Into a forest

Teeming with life and sound.
Aware of the power, subtle and strong,
To complete each other.

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.