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 It has been replaced by an ever changing cacophony of strange sensations that make me start to believe in dualism.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

The BIG Choice - the Dr.'s Team

In our consult, Dr. Bertelson had a jovial and optimistic bedside manner, something I would really appreciate later on. I liked and trusted him intuitively, something that is extremely important. With all my choices, I followed up with some background analysis to make sure. But, at least in my case, if you start with a reputable and trusted physician, their recommendations tend to be useful. And you have to decide, whether you trust this person with your life.

I remember asking my GP for a reference concerning a number of gastroenterologists.. He named about five from the list. I then asked, whom he would send his dad to. He smiled, and named one. It was Dr. Stein, the beginning of my chain.

Cancer is all about the complications. I had two major ones in the first six weeks, and if you do not trust your physician, it can lead to unnecessary blaming and interrupted confidence. I do not trust blindly, I work to understand the choices and issues facing the physician and me. If the actions are reasonable, things can still go wrong, and you have to work together to correct the results.

After the diagnosis of malignancy Dr. Bertelson recommended Dr. Cohen as oncologist. I was barely out of hospital, and I had my first consultation with him. His background was impressive, but he moved from being focused and piercing to almost absent minded. Later, I began to appreciate his shyness, soft humor, and preoccupation with caring for very sick patience seven days a week. It also took me several weeks to realize, he was Chief of Oncology at Good Samaritan Hospital, which was to become “Home Base” for several stays lasting two weeks in total. Some folks smilingly referred to his bedside manner, but I felt confident of his superior abilities and care, and anything else did not matter. Once I got to know him, I began to appreciate him for the person he was, and even started to get his very subtly sense of humor.

In the preop visits to the hospital like CT Scans etc., I asked nurses and others casually about the Dr.s, there was no hesitation in their responses, they knew of them and respected them. Genuine confirmation...

For now, I really feel lucky with the chain of choices. However, I realize that in case my progress takes a turn for the worse, or I have more difficult complications, I might have to ask for additional help from other experts.

Thankfully, my condition so far is routine colon cancer staged IIIA with a survival probability of about 80%.

The Beginning - Colonoscopy & Diagnosis

I have had some history of cancer in my family. My mother died a difficult death of pancreatic cancer at the age of 48. My father passed at 85 of colon cancer, but the age was considered advanced enough that it was not necessarily considered hereditary. But when my younger brother had polyps removed during his colonoscopy, I knew it was way overdue for me.

The procedure was easier than I thought, both the prep and the actual colonoscopy done expertly by Dr. Stein MD were really not difficult. I just used light sedation instead of a full MAC (monitored anesthesia care), so I could follow the procedure on a separate screen provided. The first two polyps were removed and no surprise, but when we hit the cecum at the end of the road (right ascending colon), there was a large mass visible. I knew I had a problem, but with a breath felt quite calm about it!

The reported results in the consult a few minutes later were no surprise. Dr, Stein expected the samples to be benign, and he recommended Dr. Bertelson for a surgeon.

Despite the fact the colon cancers tend to be slow growing, I felt compelled to act and line up the needed actions and decisions. I was not happy, but felt calm and collected about the situation.

We had our consult with my surgeon, Dr. Bertelson, one hour after the first diagnosis.