The Surgeon

We had our appointment with the surgeon on Monday. That meant waiting the entire weekend until we knew more what was going on. After telling the kids it was time to start telling other people; family, friends, church.

One of the first people I called was my mother. I have to admit I have never been good about telling my parents things. There was also the fact my father had just died in December and we had the funeral the first weekend in February. We had a wonderful celebration of his life, but it was very hard to say goodbye. I had my own emotions about that to deal with plus my cancer and now I had to tell my mother. I did not know if either of us could handle it. I took the direct approach and the conversation went almost exactly like this:

“Hi mom, this is Steve. I have some news for you. I have colon cancer.”

How is that for easing in to the bad news? I certainly could have given her a little warning. Maybe start with the fact I had a colonoscopy. Then move in to the report came back with some bad news. They found a tumor and it does not look good.

We talked for a little bit. I asked her if she would have some support. The church had been good to her since Dad’s death and they would continue to be a source of support. She had good neighbors as well.

A few weeks later she would tell me my news kept her from dwelling on Dad so much. I guess that is a good thing. Nothing like a little cancer to get your mind off your troubles.

Monday came and we went to see the surgeon. What we had learned is he is supposed to be one of the best. Neighbors of ours, doctors, told us he was good. A friend had him take out her gall bladder and she really spoke highly of him.

He walked in and he seemed young. Not Doogie Howser young, but younger than me. At least his eyes were still good and his hands steady; but I wish he had a little more experience.

He shakes our hands and sits down. He opens the chart to review why we are there. Then he looks up and smiles. His first words to us were, “So, which one of you has been on the internet looking up colon cancer?”

One thing that is critical for doctors to do is connect with their patients. They have hundreds of patients and it is impossible to do 100% of the time. There are doctors who do not even try. But with those words he connected. We knew we were in good hands.

We asked questions. He drew pictures. We discussed the surgery, the recovery and post surgery treatment. We discussed percentages, he avoided direct answers. The surgery would be laparoscopic. There would be two small incisions on my belly through which he would rearrange my insides and bring the affected part of my colon to the center. There would be a small vertical incision on the lower part of my stomach through which they would pull out my colon. Then, just like a hose, they would cut out the part with the tumor and stitch the two ends together. Everything would go back in place and the colon and lymph nodes they removed would go to pathology. If the cancer penetrated my colon wall and affected any of the lymph nodes then I would have to have radiation and/or chemotherapy. If it did not penetrate the colon wall then there would be no further treatment.

When the conversation was over he asked to make sure he had answered all our questions at this point. He knew we would have more questions as time passed but he wanted to make sure he had addressed everything we needed to have addressed.

We left his office with all our questions answered and a date for surgery, April 15.

Conducting Research on the Big C

I have the honor of being married to a librarian. Mention any subject to a librarian and they know where to go to find out about it. It is a real gift most people do not appreciate. If our children express any interest in anything three days later there are books, magazines and websites made available to help them learn more about this new found passion.

Colon cancer would be no different. Research librarians in general, and my wife specifically, are not satisfied with what they find out on Wikipedia. They want real sources. They want reliable sources. They go to The Source.

She came home with information from the American Cancer Society. There were diagrams of colons, definitions, descriptions of treatments, etc. etc. etc. We learned about the sigmoid colon, the transverse colon, the ascending colon and more.

She wanted to know what we were getting in to, or rather, what had gotten in to me.

Some people don’t want to know. The keep their head in the sand and figure it will go away, or someone else will deal with it. They live in denial. Not so for us. We were going to learn and know and be experts on this.  When it was time to see the surgeon we were going to know all about what he was explaining to us. When he used the term descending colon we were going to know what that was.

Doctors know a lot more than their patients and some patients are intimidated by this. Not my wife. She would become an expert on the colon, on colon cancer, nutrition, recovery, surgery, treatments; she would know so much she would be able to assist during surgery. Knowledge is power and librarians are some of the most powerful people in the world.

She put together notebooks of information. One notebook contained the information she had gathered. Another notebook was for notes on meetings with doctors. She took copious notes and would ask for clarification if she did not completely understand what the doctor said. How is that spelled, what does that medication do, what are the side effects???

For me, I knew I was not alone. The cancer was in me, it was mine; but I was not going to go through this alone. I had an advocate. I could let go of the worry, the details, the minutiae, and focus on health and positive thoughts. I could run, which helped prepare my body and mind for what was to come. I could keep teaching and contributing.

There is that team building exercise where someone stands and falls backwards while someone else catches them. It is an exercise in trust. That is exactly how I felt. Emotionally I could let go and fall without seeing where I was going. I could trust that my wife was there to catch me, support me and hold me up.

And she did. She was a rock.

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I can not stress enough how important the caregiver is to the patient. In many ways it is more difficult for the caregiver than the patient. The patient gets all the attention. Whether you are a patient, caregiver, friend, or neighbor it is helpful to know how to care for the caregiver. Here are a couple of books I recommend – BEFORE someone gets sick.

Telling Children about your Cancer

My wife and I both had parents who had, at one time or another, been faced with a serious medical situation. How they chose to tell us, as their children, had a strong influence on how we would decide to tell our children about their father having cancer. I wanted to tell them immediately and honestly. We were not going to make it a panic situation, but we were going to tell them the truth about what was going on.

Friday night our daughter was to have our undivided attention while she regaled us with stories of her conference. We would not tell her Friday. She we would tell on Saturday.

Our two boys were away at college. As much as I would have loved to have them come home, I was not going to ask them to do so. It was not necessary, yet. My wife and I were running an errand on Friday, getting dinner. On the way home, early Friday evening, I decided we should tell the boys then. I did not want to wait until the end of the weekend, I wanted them to have the weekend to think about it and have the opportunity to ask us questions. I did not want to wait until Sunday evening; what if they had a test Monday morning?

So we sat in the driveway on Friday evening and called both boys. We decided my wife would tell them and then I would get on the phone with them. If I were to tell them it would just be too emotional for me. My wife strongly suggested to me that when I got on the phone with each of them I was to be positive and not get all upset. Now was not the time for that. We had to give them time to process it.

I do not remember who we called first, only that we reached each one on the first call. That was amazing in and of itself. We spoke with them both and told them mater of factually what was going on and what was going to happen. It was not an easy conversation and we tried to leave them reassured. They would have the whole weekend to think about it, talk to their friends or come home.

Telling them at this point was important. We did not want to wait until I was out of surgery and we knew what was what (that is one method we experienced as college students). We wanted them to be a part of this the entire journey. We did not know how everything was going to turn out, it was all so new and there was a lot of information we did not have. But we did not want to have all the answers before telling them. I also needed them to be a part of this experience. The worst case scenario meant I would die and not be a part of their lives. I did not want their memory of me to be that I did not want them to be part of what was, at that point, the most important event in my life.

The conversation with each went well, no one (i.e. me) cried. I have no idea what they did that night, how they handled it, with whom they talked or what they thought. But I do know they were included in what was going on in my life from the beginning.

The next morning we told our daughter. The night before she had her time to tell us all about her week at the conference. We had listened and asked her questions and found out all about what happened. But now it was our time to speak with her. We told her the reason her mother was late picking her up on Thursday was because of my doctor’s appointment. Then we told her why it took so long. Your daddy has cancer and will be having surgery and it will take it out. My daughter is usually quite verbose and able to share what is on her mind, even if you don’t want to hear it. She did not say a lot. She also did not get emotional in any way. It was kind of like she was just taking it in.

Even though I wanted my children to know what was going on because I did not want to exclude them from something so significant. It was important to keep them involved. But I also told them because I needed them to know. It was important to me that they know. It was one source of support for me. I knew I could talk with them about it and talking about such things is critical for healing. For my healing and, if I did not recover, for their healing.

 

Yoga Helps!

I have had two knee surgeries. My joints, especially knee and hip, get stiff and hurt. If I stay in one position too long, say at my desk, I am very stiff when I get up. I limp until I can work it out. I take glucosamine for joint relief. Not sure if it helps, but I take it daily.

In college, decades ago, I took a yoga class. Loved it. It was at 2:30pm. I laid on a mat for about 15 minutes and then we practiced yoga. I always felt so much better after those classes. Rested and stretched.

My wife and I started practicing yoga. I say practice because one does not ‘do’ yoga, one practices it. Some poses are difficult. Some are painful. Some are downright impossible for me – when the instructor says ‘pigeon’ I go in to child’s pose. I do have to say though, after practicing yoga about three times a week, sometimes less, I feel tons better. I am more limber and flexible. My joints do not hurt as much.

Not all yoga studios and teachers are the same. Good teachers will listen to their students. Good teachers will push just the right amount. Good teachers will not expect more of you than you can handle, but will encourage you to go just a little further. I suggest you shop around a bit. Get to class a little early and talk to the teacher about your limitations. It is hard for me to sit cross legged for very long and I want my teacher to understand that about me.

There are many levels of yoga. If you are a beginner, seek out a beginner class. Get to know yoga and your body through yoga. I know it will help.

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Having good equipment is important. It is not expensive and is a worthwhile investment. I suggest a mat, two blocks, a bolster, and a strap. You may also need a towel/blanket to kneel or sit upon.

Here are some options to consider:

 

The Next Day, Conversation with the Doctor

The next day, Friday, my daughter went to school and my wife went to work. I was home alone. I remember the feeling that I just wanted to tell everyone, but I was not ready to tell anyone. There was a lot to do, but nothing I could do yet. I did some work, graded some papers and reviewed class discussions. I was not 100% focused on what I was doing, being more than just a little distracted. But the distraction of my classes was also a good thing. I would also be able to put dinner together, walk the dog, pick up the mail. What a productive day.

Then the phone rings. I am the only one home and I don’t really want to answer because I am not ready to tell anyone. If I answer and the person happens to ask how I am doing what exactly will I say? But it could be important. Or a credit card trying to sell me something.

I answer.

“Is Mark there?”

“Yes.”

“Mark, this is Dr. Cattano. I wanted to touch base with you today. I know the minute I said the word ‘cancer’ yesterday you did not hear another word. I know you probably have a lot of questions…”His voice was full of compassion.

I really have to give the doctor a lot of credit. He really reached out to me as a human being. I wasn’t just another patient ID, I was a person who received some very bad, life changing, news; news he gives a hundred times a year. But he acted as though I were the only person he had ever told had colon cancer. We did not talk for long but he would not hang up until he was sure all my questions had been answered. We talked about the surgeon, the surgery, what my prognosis was. I mentioned I had this half marathon to run in May. He said I would not be able to run by then, I had to have surgery now and it would be a while until I would be physically ready to do something so strenuous.

He told me after I had surgery and they took out the tumor I would heal and my life would soon be back to normal. In a year he would have me back in to take another look and see if there were any more polyps. I was going to have to have regular check ups. I am young to have a tumor so I am more prone to polyps which turn in to tumors.

“So, I have to have another colonoscopy in a year. Am I going to have to have one every year?”

“Mark, I like you,” the doctor said, “but I don’t like you that much. We’ll check you out and see how things are. We’ll decide year by year. It could change to every three years, then every five. We just don’t know.”

So there it is. I felt better just because he took the time to call me. As time would pass I would learn just how important it is for people to reach out to each other at times like this. There would be times when I would feel very much alone. And it was the times like this, the doctor calling, that would help me through those other times.

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When a friend found out I had cancer he immediately gave me this book. I found it very interesting, from a clinical perspective, how the medical world has viewed and treated cancer over the decades. If you want an inside look I highly recommend it.

Cancer: The Emperor of All Maladies

 

First Night after the Diagnosis

We came home and my wife put me to bed. I was still feeling the effects of the medication and needed to sleep. She had to drive into D.C. to pick up our daughter from a conference. She was already late. Boy, was she in trouble. We had agreed she would not say anything about me having cancer. Our daughter had been at a conference, which she helped plan, and would be excited to tell us all about it.  We did not want to do anything to ruin her enthusiasm.

By the time they arrived home I was awake and much more lucid. I was working on preparing something for dinner. My daughter was so pumped about her experience she could not wait to tell us stories of what happened and people she met. She told us a little bit while we ate, but agreed it would be better if we waited until the next night when she would be more rested. It would be a Friday and we could get pizza. We would put a fire in the fireplace and the night would be hers. Tomorrow would be better.

Today she needed to sleep, and could barely keep her eyes open. We said good night and off she went. Now, my wife and I could spend a little time talking. Things were beginning to set in. And it did not set very well.

I opened a bottle of wine, lit a fire and we got comfortable. It is funny, you go through your life with good and bad things happening to you. You see good and bad things happen to other people and watch how they handle it. It is easy to tell others, or at least think about them, how they should handle a certain situation. But until you actually go through it yourself those suggestions and thoughts can be pretty useless and, more often than not, off the mark.

“So, how are you doing?” we each asked the other. “Ok” was the response.

What do you say at a time like this? How do you handle it? We made no conscious decision how we were going to handle it. We just did. We spoke that night in realistic terms. We spoke of life and death and sickness and health. We spoke of telling our children, our family and our friends. We spoke of preparing for it and of being so terribly unprepared for it. What of work (I was contractual and had no sick leave)? What of plans? What of … everything? Everything stopped. We were focused on one thing.

At one point my wife looks at me. She is serious. She is confident. “You will be fine.” She looks right at me. “You know how I know?” “How?” “We were born on the same day, we will die on the same day.”

She was right. One of the things that connects us is we share the same birthday. Same month. Same day. Same year. We have a lot of fun with it. Our motto has been, “We used to be twins, then we got married.” I will joke that in all our years of marriage I have only forgotten her birthday three times. People look at me seriously when I say that. ‘You have?’ But there is more to it than the fun and laughter. It is a connection. And now we know its significance. We were born on the same day, we are going to die on the same day.

I hope it is many years from now. I hope it is not in a nursing home. I hope it is glorious. Enough of our future demise.

We pour more wine. We talk. We sit in silence. There is a weight, but it will not be named. And it will not hold us down. We have never faced something like this. Right now, the fire place, the wine, the silence, us. There is nothing more.

Later my wife looks at me and says, in all seriousness, “Steve, you don’t have cancer. Your colon has cancer.”

I let that comment sink in.

“The asshole,” was all I could say.

And we thought that to be the funniest thing in the world. It may have been the wine. It may have been the need for an emotional release. It may have been fear of the future. It was all that and more; but we laughed. We really laughed. From our guts (pun intended). We had tears running down our faces and poured more wine and felt good about each other, about the situation, about life.

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The Diagnosis of the BIG C

A month after running the 5K and signing us up for the Maryland Half Marathon we were still running. We were actually enjoying it a little.

That same month I was scheduled to see a doctor and have the first of my lifetime colonoscopy. Without getting into a lot of details I will say the preparation the day before is no fun. It leaves you leashed to the house, and it is best to be alone. It is not an experience you want to share with someone you love, or even someone you aren’t that fond of. Some things are best done in private.

The next morning was the big day. My wife and I were at the doctor’s office. I was laying naked on the gurney, covered by a sheet and blanket. Knowing what was about to happen we joked about it. The nurse told me we would not be able to leave after the procedure until I was able to pass gas. In order to get a better look they fill you up with air and I had to get rid of it. What a treat, I said. For the first time in my life was being told by a woman that I should fart.

My wife waited while they wheeled me into the exam room. Before I knew it I was lying on my left side with a needle in my arm. The doctor put in a shot of something and I was out.

Only moments later I woke up in a different room, my wife at my side.  I tried to get my bearings on where I was. The nurse entered and said hello. She said the doctor would be in soon and that while I waited I should try to expel the air they pumped into my gut. Rolling side to side is a good way to help it out.

My wife sat there waiting and I laid there farting. Occasionally we would hear other people fart too. After a few minutes the doctor entered the recovery room and pulled the sheet closed. He smiled and said the procedure went very well; though he did mention I was not 100% cleaned out so they had to suction some. He pointed to a diagram of a colon and showed where four polyps had been that he removed. These are normal and nothing to be concerned about, many people have polyps and the best thing to do is to take them out.

However, “Here” (and he pointed to a place at the colon diagram about 10 centimeters in, “Here is where  your tumor is. That we could not take out because it is more developed than the polyps were.”

“What do you mean… tumor?”

“You have a tumor and it is cancerous.”

“I have cancer?”

“Yes.” I know he said some more words after than because I remember seeing his lips moving. For the life of me I cannot tell you what he said. There was something about seeing the surgeon.  I do not know much more about my visit that day. After a while, and a little gas, I was told I could get dressed and my wife could take me home. Before we left we received a packet of information; who the surgeon was, when we were to meet him, what would happen from here on out. Included in this packet of information were some photos from inside my colon. One photo included the tumor. Later I would find myself staring at it. My tumor. Hello, come on in. You know the kids, that’s our dog and, oh yeah, here is my tumor. Nice looking tumor isn’t it?

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One thing I have learned in dealing with cancer is it does matter what you put in your body. I have taken supplement, vitamins, eaten vegan, eaten organic. I do not believe there is one answer. It is a cornucopia of options. I have become more intentional in my intake. Below is a link to a ‘super food’ that has been recommended to me. Quite honestly, I try it and do not feel any different. But then, when I had a tumor I did not feel any different either. You decide what you want to do.

Cheers!

 

Super Food

Good Read

Being diagnosed with cancer can make a person reflective on life in general, priorities, mortality, legacy. I will discuss those topics in the future.

I did read an excellent book that helped me put things in perspective. I highly recommend it and think families would benefit from reading and discussing it.

Being Mortal by Atul Gawande

He is a doctor who has dealt with the death of his patients as well as the death of his father. This very sensitive book will change how you look at life, family, and the fact you will, one day, die.