Cancer changes everything. For me the experience of life occurs differently now. That’s why I am writing it down. This is what I feel like going into it.
I chose to live with my cancer until there is a cure or until I can figure out how to heal myself or both. This is a story about how I deal with the diagnosis every day and how I deal with the cancer itself. I also would like it if someone could benefit from my having this disease. These remembrances are from notebooks where I kept sketchy notes and thoughts since then.
January, Feb, March of 2009. I was having trouble staying ahead of my fire academy recruits on the 3 mile jog in the mornings. My shortness of breath and lot of pain and ache in my chest was thought to be walking pneumonia so I received three weeks of antibiotics.
May 15, 2009, a CAT scan at Schuyler Hospital says that cancer is present. My familiar world is coming to an end but I don’t really know how bad it is yet.
May 22, 2009 A bronchoscope exam identified cancer again.
Late in May I get a cell phone call from the pulmonary doctor as I am driving in my truck. He is saying I have lung cancer. Not a great way to receive the news.
At the time of my diagnosis I was a 57 year old father and grandfather who had been a corrections officer for 23 years. I have a family farm, am the local fire chief, and enjoy outdoor sports and rodeo as hobbies. I was living a quiet American life.
June 1, 2009 is the big meeting with Dr. Brochetta the cancer specialist. He tells me and my wife, daughter and sister-in-law, that it is stage 4 cancer – the worst news. It is adeno non-small cell carcinoma, both lungs. Statistically I had 6 months to 1 year to live. I had hundreds of tumors in my left lung and one the size of my thumb in my right. This cancer is not generally correlated with smoking although I smoked for 40 years and gave it up 3 months before my diagnosis. I was told 5% of people with my condition live 5 years. I chose right then to be part of the 5% group.
15 minutes after being given my diagnosis my family and I were given a tour of the cancer center. This was a particularly difficult occasion to show people around the clinic. We were in stunned silence around the news of how serious my condition was. I describe this as the new world of shock and awe. An emotional roller coaster.
Later, when taking chemo, I often saw the deer-in-the-headlights look of others who had just been diagnosed and were also getting the tour and it was an awful feeling knowing what they were going through. Now that policy is changed partly because of feedback from me. I recommend being in communication with all your health providers about what works for you and what does not.
At this time there was lots of crying and feeling sorry for myself. I was worried for my parents, my family, my grandkids and friends. I began getting in touch with deep emotions that I am not used to. You realize authentic emotions and it is very powerful.
I had lots of tears around past, present and future events. I often think of the saying “God gave us tears and didn’t teach us how to use them”. We are taught that strong emotion is not good but getting in touch with your mortality changes you. You have to get your stuff in order – this is life and death.
June 2. 2009 I write “CHILL” and begin to get over the shock.
The way I viewed it, just as a journey of 1000 miles begins with a single step I also began working this out step by step and with every step, the top of the mountain is getting closer. For some people (medical professionals) stage 4 cancer = death. I knew that creating a new conversation, in the face of no agreement, was the way to create a possibility of being cancer free or at least surviving with cancer.
My story, and I figured this out early on, is “the only thing I know for sure about cancer is that if you are in the “poor me” attitude or in total denial or resistance then you are the person who is definitely going to die.”
It can blindside you – these powerful emotions. For me something can come up from the past and you realized what you missed. A kind of regret. Being moved, crying – (for me a video of my family history triggered it). But you can also get completion of some old relationships. I count my blessings and consciously keep a positive attitude around my fight with cancer. My advice is don’t ignore the feelings that come at you. When you realize it is happening practice building muscle in dealing with the fear and sorrow that arises. To resist those emotions is fatal – there is no pay off – it is all cost.
The diagnosis of cancer (particularly bad cancer) causes real soul searching and changes in lifestyle. I haven’t been fly-off-the-handle mad at cancer. I tend to direct my energy into motivation. ” They don’t think I can but I will” attitude. I will be goal oriented – I will create possibilities
My first goal is to be around long enough to talk to my grandsons Zack and Liam and take them fishing with Brady. (Zach was born just 4 days before my diagnosis).
I also want to dance at 3 year old Annabell’s wedding (is that too much to ask?) I feel like this is way out there as a possibility.
June 5, 2009 I go for a Pet scan that is physically very uncomfortable. I also have an MRI scan that same day and the first chemo starts.
One of the hard parts is the three days of nerve-racking worry and unsettled feelings you get while the results of the tests come back. The good news this time is that the scans say no brain involvement and that is a great relief.
June 6, 2009 Rodeo – It feels good to be with friends but I start sensing people’s discomfort around me. You experience the grief of others in relation to you. Sometimes you have to help them through it. The need is to be in communication or people will create their own story about you and it isn’t always good or true. For me it is like the experience of being head of the household, it makes me responsible for what goes on.
June 8, 2009, begin Neulasta for rebuilding white cells. I get a real painful reaction. Clots are typical of this drug but fortunately I didn’t have any.
June 9, 2009 I get severe pain in my chest and feel I cannot breathe. A very frightening experience like drowning. I called my wife Judy and daughter Shelly and get ambulance transport to CMC.
For three days I am in the ICU for this pain in my chest which is a bad case of pneumonia. Then I am moved to the 4th floor for therapy. After four or five days I could tell the breathing treatments the hospital was giving me were not working. I couldn’t even move the ball up in the breathing machine.
June 12, 2009 – Coughing day. I knew from my knowledge with animals on the farm that this infection in my lung has to be coughed up even though each cough feels like a knife in my side. I decided that if I was going to live I had to cough up the infection. I chose to start coughing even in the face of excruciating pain and exhausting effort. Even with the morphine dose it was an ordeal. Take a dose of morphine, wait 8 minutes for the peak effect and cough for 2 minutes or all I could stand and repeat. I did this pretty much for two days with very little sleep. My entry for that day is “OUCH”. Two or three days after that I was released from the hospital but I was tied to an oxygen bottle.
July 2 2009. I was not really better so I was assigned a regime of 7 days of IV antibiotics. I had to drive to Corning (about 50 miles each way) to continue dealing with the pneumonia. I felt weak and tired and under a lot of stress.
July 9, 2009 At the evaluation after the IV antibiotic regime, Dr Walsh decides at 10 am to do surgery at 2 pm. That gave me little time to prepare mentally but I remember thinking” Take me now if you are going to”. I still prayed that I would wake up and figured if I beat this now then I can make it. The doctor said it was one nasty and angry infection between the lining of my lung and ribcage but after he cleared it out I felt a whole lot better the next day.
Around that time my pulmonary doctor said it would probably be a secondary infection that would kill me anyway and not the cancer.
I recommend direct communication with your doctor. They are overworked and underpaid and you have to ask questions and demand information. You have to be your own advocate and keep the communication open. They just drop the ball sometimes – they are human too.
The next week my friends coworkers throw a hay party and got in my 10 acres of hay. I was aware of great community support when they all came and harvested for a long hot day.
I even find time to go roping in the rodeo and only two weeks after surgery.
July 18, 2009 Retirement party at the Fire House. I get very present to the love of friends and family. One of the best days of our lives. Community support, over 500 people there. I had a great resistance to the fundraising part but the benefit of extra cash did help with expenses.
Along this time free advice comes from all over. Everyone it seems has heard of a “cure” and something that is “so valuable” for them and probably for you. Don’t dismiss anyone’s good intentions because you never know for sure and any of those cures could be beneficial.
In the fall of 2009 I meet with Dr. Marne O’Shea and learn about the nutritional side of treating disease. She introduced me to the the book The China Study and additional cooking books for a vegetarian diet. The basic idea is that animal protein has been shown to be carcinogenic. The prescription is to shift to a vegan diet away from animal fats particularly. There is lots more to know about nutrition, for me and the world. I have been a primadonna meat and potatoes man all my life and now I am told to change to almost vegan. I was the local butcher and now I’m told to eat bokchoy and butterbeans. My first reaction is “you gotta be kidding me!”. But I declare I will not feed the enemy, and I begin practicing a vegetarian diet.
In my mind, how a person is being has a connection to how we respond to disease. If you stay doing what you did then you will get more of the same. Being willing to change lifestyle is key to survival. If we chose to transform our habits then surviving and success is possible.
All the time I have worries, my wife Judy being alone, all the things I will miss out on. I have become very aware in the present moment to love, gratitude and a great range of emotions related to my parents, my wife and our three daughters, grandkids, and friends. When feeling emotional my friend Joe said “I got a little tear in my eye over that”. I think this is a great way to express feelings, happy or sad.
It’s funny how many times you die when given an expiration date. You die over and over, especially when attending the funeral of someone you know. You think it is you in that box.
Feb and Mar 2010 I feel good. Begin to lead Physical Training again at the NYS Fire Academy. I get to say to these young 20 somethings that ” if you can’t keep up with a 58 year old, stage 4 cancer survivor then you need to shoot yourself.”
3/11/10 I meet other survivors at the men’s group for the first time. – a good community of people who share these troubles. These are people you can talk to about issues other people want to avoid.
In the spring of 2010 we begin the process of selling half the farm and begin plans for a new house. This helps with my thoughts of security for my wife Judy.
In the mid summer of 2010 my family gave me the gift of a 10 day trip to Alaska to go fishing. It was great relaxation. Beautiful country and sockeye salmon. At the same time the foundation of our new house is dug so there is lots to do.
Through the winter of 2010 / 2011 I get complacent around this new vegetarian diet I had started and slack off. Readily available alternatives to foods that are bad for you are not present in my world. It takes a lot of work and intention to eat right. I am on maintenance chemo and fortunately have no bad reactions or side effects. Generally I feel good so I relax a little.
3/14/11 dizzy this day- reduce activity – still loaded hay all day.
3/29/11 CT scan says lung tumor is shrinking but the cancer is now clearly showing in the bone. Cancer is smart – at around 2 years, the doctors tell me, it is going evolve to beat the chemo and spread, and mine did. I am fortunate because mine chose bone and not liver, internal organs or brain. Bone cancer is slower cancer but the diagnosis of bone cancer was like starting all over again.
Metastasis for me was another big hit. It brought up all the fear and emotion again. I have to go back to the basics. You can gain ground, inch by inch, through the fear. Constantly pushing your personal best. Keep taking ground. Hold on to your power. Feel the pain. Keep gaining ground and building muscle. All that stuff is going to occur. And I am still here. Move and hold, move and hold, keep the top of the mountain in sight.
4/9/11 I attend a seminar with Tom Padigal promoting healing on the quantum level of existence. Not great but helpful in that Tom is willing to say “lets create you being cancer free”. No one had been willing to say that to me up to that point.
Over these years I participate in several “alternative” therapies and vitamin supplement plans. I have done Che Gong, yoga, Ty Che, and even laying on of hands. Of these acupuncture is the biggest contribution to my well being and and it adds to my mental health and confidence. I see acupuncture as one of my main immune system boosters and I use it occasionally for pain bouts. Our means of treatment for cancer takes a toll on immune defenses so you need to let your healthy good cells recover and prepare for the next blast of poison (chemo) but whatever works for you, do it.
4/19/2011 Travel to Sloan Kettering Cancer Center in NYC. They seem disorganized, not timely, I felt sick and disappointed. Dealing with mouth sores at that time.
Sloan calls back a few days later and says I am eligible for Tarceva. This is the good news and makes my trip to New York worthwhile. Only about 10% of patients are eligible for Tarciva and I am one.
4/20/2011 Pain under my arm – coughing – rash very tired – chest tight from avastin.
4/24/2011 breakfast club with cancer survivor group
5/11/2011 Fire Academy recruit graduation, foggy head, mouth burns tonight.
5/21/2011 Wedding Anniversary. Roping at the rodeo and my team took 2nd place but that night I can’t sleep for back ache.
5/22/2011 Worried today the cancer is growing.
5/25/2011 discover using Vaseline in my nose for irritation.
5/25/2011 Memorial Day fishing derby has become an annual ritual for me. In 2009 I thought it might be my last.
Cancer shows up in the middle of the night. You think “here goes” – “this is it”, you think about high levels of danger (pain, your death) and get an ache in the pit of your stomach. This is a good time to have a friend you can call without hesitation in the middle of the night and talk about anything. It calms the voices in your head.
I started this journey with a great fear of the unknown and it still creeps up on me. I gathered information where I could and the fear kind of goes away, especially after that initial blow of the news but there is a lot of mind game with cancer. I believe your attitude is directly related to your outcome. Being willing to be positive and change is key to survival.
I have conversations with my cancer. I say “You are in the wrong place!” “Wrong, Wrong, Wrong!” “You picked the wrong guy to mess with!” Even though I have made a conscious decision to live with my cancer, I have regular arguments with my tumors. I say “I’m not going to give you all that space.” “I’m not going to let you do that!” “I’m not giving up!”
One tool I use are the skills I learned in Landmark Education. It has grounded me and allowed me to accept the news about cancer as a “what’s so” with no story. No, making it mean anything better or worse than it is. I learned the ability to create possibilities beyond this diagnosis and it has directly affected my ability for doing what I say I will do, holding my power in this situation, and moving forward. I use the power of this education every day.
Another great benefit to me has been the Cancer Resource Center. Not only do they provide volunteers for rides and information on how to get more information they organize my cancer survivor group. The great benefit of this group is in getting out of the voice in your head. Some people have a terrible monolog going on in their heads. In a group you get into dialog and support for positive conversations and examples to follow. Part of access to beating cancer is to see yourself healed. Beating yourself up for not doing this or that perfectly is backsliding.
One story that encouraged me was a schoolteacher I met at the cancer resource center who has prostate cancer. Even before he took treatment he knew people who had lived through it and it helped. This is the benefit of our cancer survivor breakfasts. We get to know individuals who are survivors and it is not quite so scary.
Advice you find on the web can be all over the map but I found good conversations on the Team Inspires website and even a Fire Fighter cancer support group.
I am at a new stage now. I have lived in this body for 60 years and now with the metastesis in my back I don’t know how to handle it. I don’t want to break my bones and create new complications. I am feeling the loss of ability and am mourning the loss of what I love to do. I am recognizing nobody is taking things away from me but I have to mourn the loss anyway. I have to let myself mourn through the loss and create what is possible. I am compromised and I am dealing with it. Today’s goal is to be alive for my 62nd birthday. I picture who is there and imagine how my health will be at that time.
I am dealing with what I call “losses” but then I see that they are not all negative. Cancer teaches me how to “be” in a new way. I often now consider Mia, my youngest granddaughter, born 10/16/2010. Last year my wish was just to talk to Zack and Liam since they were just 2 and 3 years old. I accomplished that. Now it is Mia (1 1/2 years old) who really acts like grandpa’s girl and I have become greatly attached.
I have recently found my lung tumors have increased since January so we will be changing the game plan next week. – And I will be fishing in the derby this weekend – my fourth since diagnosis.
5/24/12
