6 Months

Its absolutely amazing to me how fast time flies when you are having fun. Andrew is in Houston at MDAnderson again for his 6 month series of tests and scans, and I am at home holding down the fort and taking care of the kids and our zoo. To say that I felt absolutely sick to not leave the house with him at 4:05am this morning, is an understatement. Andrew is so strong, and he assured me (why the heck was he assuring ME?) that he would be fine on his own, and yet I feel strangely empty and scared tonight. And, yet, we both know and trust that his appointment with Dr. Swisher tomorrow will be cause for great celebration and a wonderful reminder of how fortunate and lucky we truly are.

The past 6 months have been a bit of a blur. Cancer is very strange that way. Time almost stands still at times, and yet when health returns, and normalcy appears, its easy to resume life as you knew it before and time begins to evaporate again. That said, its far too easy for me to talk about this, as I am NOT the one who has had cancer. I am NOT the one who has had massive thoracic surgery. I am NOT the one who has had part of his lung removed. I am NOT the one who has lost a father to the same cancer that I have had to fight. Its far too easy for me to talk about how the last 6 months have been. Quite frankly, its far too easy for me, as I am NOT the one fighting cancer. I am merely the spouse…

And, yet I will tell you that Andrew has been nothing short of amazing since his lung cancer diagnosis. He recovered from his surgery with such grace and such strength and as soon as he was able, he was walking the dogs, and hiking our local mountain, and then in short order, skiing at our local ski resort. And then before I knew it, he was skiing at altitude and pushing the limits of his lung capacity, and celebrating with quiet joy how far he had come in such a short time. All the while, feeling “different”, all the while knowing that his reality was forever changed. All the while, quietly aware that each day was a gift beyond anything he had ever been able to comprehend prior to last July.

Of course, we feel that tomorrow will bring nothing but great news. We have no reason to think otherwise, and yet cancer is this persistent shadow. Life goes on, and joy returns, and yet there is always this shadow. Sometimes its more noticeable, and sometimes, you can’t see it even if you try. Yet, its always there. A dull and sometimes even a dark shadow…

Just last week we lost a friend to cancer. A young father with an incredible zest and joy for life, and a very, very dear friend to two of our best friends. Why him? Why was this Steve’s story? Why is this Andrew’s story? Its been a horribly sad time to mourn the loss of Steve. And its also been another reminder of how fortunate we are…even if there is perhaps some guilt imbedded in our gratitude. Yet, our gratitude is DEEP. And we sincerely share in the collective grief for Steve’s passing.

So, I am here in Boulder, and Andrew is there in Houston. And I feel so far away from him, despite our consistent contact today. I know where he is. I can see it. I can feel it. I can smell it. And quite frankly, in all of MDA’s incredible amazingness  and magic, its a hard place to be, even worse alone. Cancer is not something I would wish on anyone, and I am also deeply grateful for our experience and journey with lung cancer, thus far. We are truly the lucky ones.

Love,

Brooke

 

 

Lung cancer survivor – it is time to remove the stigma

This is a post I recently wrote for MD Anderson and was published on their Cancer Wise website

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I lost my dad to lung cancer. Thirteen years later, I was diagnosed with the same illness that took his life. The difference was he smoked two packs of cigarettes day and I never smoked.

My lung cancer diagnosis

Almost four months ago I was riding on top of the world, literally. In the midst of a 5-hour mountain bike ride at Colorado’s Eldora Ski Resort, I crashed. I was a little banged up and went in to get checked out. After a few stiches and a chest x-ray, I was cleared to go home with a bag of ice and some ibuprofen.

Two hours later, in the midst of grilling a summer BBQ, I missed a call from the clinic. The doctor left a voicemail saying that after a secondary review the radiologist noticed a spot on the upper apex of my left lung. He said it was probably nothing, perhaps even some scare tissue, and that I should schedule a CT scan within a couple of weeks. I turned to my wife and said, “There is no way that is good news.”

I called my primary physician the next day. I had to plead to get a CT scan ordered and scheduled. The next day the physicians assistant informed me there was in fact an indeterminate mass, but nothing to worry about. She said that given I was young and healthy, did not smoke and maintained a regular fitness routine, it was most likely a false positive.

Two days later a biopsy, subsequent pneumothorax, and test results revealed a positive diagnosis for stage 1 lung cancer.

I was stunned. Lung cancer, of all things? I use my lungs regularly at high altitude and high intensity. They work fine.

Lung cancer stigma

By the second day I had already become familiar with the ubiquitous question, immediately following knowledge of my diagnosis: “Did you smoke?”

It is a logical question. We all know smoking causes lung cancer.

When my dad was diagnosed I was emotionally devastated, however if I am honest, my response mimicked the party line, “Well I am not surprised, after all, you smoked two+ packs a day for 57 years.” 

His battle lasted 14 months. It was a hard road from surgery through chemotherapy. I helped him through the entire process, and amidst the hardships, our relationship deepened and evolved.

The reality is that lung cancer is a mass murderer on a global scale. According to the American Cancer Society, 13 percent of lung cancers are unrelated to smoking, and another 50% are in former smokers who have not smoked for 25+ years.

Until recently, even with a family history, I knew relatively little about this pernicious disease. I believed, like millions of others, that lung cancer was for smokers.

Changing the stigma surrounding lung cancer

Does it really matter if you smoked, worked with toxins, lived in a radon house, or randomly inhaled the wrong particles? Is anyone really in a position to claim that someone really deserves lung cancer? No, of course not.

We need to change the way the world looks at lung cancer. We need to build programs around awareness and educate the public, invest more money in research and therapies and support the promotion of healthy lifestyles and prevention. It is time for lung cancer to become as relevant in our culture as breast cancer. It is time to end the stigma. It is time for change.

 

 

9 Weeks of Healing

It has been a while since I/we have posted. We have transitioned into a new phase of the healing process, and the last couple of weeks we have been introverted home bodies. Our preference is to do much less, stay home, and be with each other and the kids.

Both Brooke and I have been driven “doers” most of our adult lives, now we are both feeling much more interested in just “being” and much less concerned about the “doing”. I am sure, like most of this process, this is but another step in the journey, and that this too will change. Right now, doing less and keeping life as simple as possible just feels right.

Now that I am getting back into circulation I have had a lot of people ask me how I am doing. I appreciate the support and caring nature of the question. Often it is in a public setting or in passing, and my stock response is that I am doing well (true) and that I am grateful to be so fortunate (also true). The reality of the situation is a bit more complex. I feel as if everyday I am aware of a barrage of different emotions washing over me, some a passing thought or twinge of awareness, and others more deeply felt, and a few just plain disturbing. Since there is rarely time to explore this range of emotions in a casual conversation I thought I would capture some of the range of emotions here.

At times I find myself struggling with patience. I am through 80% of the healing process, and the last 20% is going to take time and focus. I need to make sure I focus on that 20%, if I let it go and settle for a new status quo, I am going to lose ground that I need not cede. And it is quite clear that it is going to take work to build back where I am stronger than I was before going into the surgery.

The following is a summary of my general state of being on any given day:

Changed perspective about daily life, not as concerned about sweating the details.

Relaxed and at ease.

Energized and creative.

Reflective and  meditative.

Full of love for Brooke, family, and friends.

Conscious of being present and feeling.

Open to new possibilities.

God and the presence of spirit.

Aware of gratitude for so many blessings.

And…

Weary, especially in the mornings.

Uncertainty about the future.

Random shortness of breath, usually when I am not doing anything.

One in three who relapse…

Questioning everything.

Lethargic, and at it’s worse, apathetic.

A sense of loss…

Often I find myself in the midst of one of life’s mundane tasks, such as driving, and I hear a voice in my head asking if this is all for real? Did I really have lung cancer? Am I really missing 15% of my lung? And of course the answer rings in my head…YES! And I am reminded that one of the gifts of this experience is to stay present with the reality of my own mortality. To not slip back into the trance that this life is infinite and old age assured. To appreciate the beauty and gift of every moment and every day. And when I have that awareness if often seems as if my daughter’s smile is just a little brighter, the sky a tinge bluer, and it is that much easier to take a deep breath and be relaxed and present in the moment, grateful for the beauty of the life and love all around.

If you realize that all things change, there is nothing you will hold on to. If you are not afraid of dying, there is nothing you can not achieve.

– tao te ching

 

 

 

 

 

 

 

 

Time to Change Perceptions about Lung Cancer!

It is way past time to address the lack of public awareness, incorrect perceptions, and stigmas around Lung Cancer. The CNN article linked below hits many of the high points. November is Lung Cancer awareness month, share the word, educate a friend, get involved!

As a surgeon at MD Anderson explained to me “in some respects we are victims of our own success. In the 70’s and beyond we used lung cancer as a tool to drive anti-smoking campaigns, successfully. So much so that the common perception to this day is that if you get lung cancer you brought it on yourself by smoking”. The reality, if you have lungs you can get lung cancer. And as the article mentions 60% of the new lung cancer patients in 2012 either never smoked or have not smoked in 25+ years!

I am one of those people. And even though I am relatively young, 47 at time of diagnosis, exercise regularly, and had a better than average diet…I got lung cancer. And this is not a cancer you want, ever! It is deadly. Even with the best prognosis, such as mine (Stage1B), the 5 year survival rates are still only 60-80% and there is a 33% chance of re-occurrence. 164,000 people will die of lung cancer this year, 1.4 million worldwide!

We need to catch it earlier, we need better screening, we need better awareness. And most importantly we need more funds invested in research and promising new screening and treatment techniques.

It is time to drag lung cancer out of the shadows! With awareness, focus, and investment we can improve the survival rates, and we can fight this deadly and silent killer.

http://www.cnn.com/2013/10/30/health/sequist-lung-cancer-stigma/index.html?hpt=hp_t3

 

A Samurai Warrior’s Creed

I have no parents – I make the heavens and earth my parents.

I have no home – I make awareness my home.

I have no life or death – I make the tides of  breathing my life or death.

I have no divine power – I make honesty my divine power.

I have no means – I make understanding my means.

I have no magic secrets – I make character my magic secret.

I have no body – I make endurance my body.

I have no eyes – I make flash of lightening my eyes.

I have no ears – I make sensibility my ears.

I have no limbs – I make promptness my limbs.

I have no strategy – I make “unshadowed by thought” my strategy.

I have no designs – I make “seizing opportunity by the forelock” my design.

I have no miracles – I make right action my miracles.

I have no principles – I make adaptability to all circumstances my principles.

I have no tactics – I make emptiness and fullness my tactics.

I have no talents – I make ready wit my talent.

I have no friends – I make my mind my friend.

I have no enemy – I make carelessness my enemy.

I have no armor – I make benevolence and righteousness my armor.

I have no castle – I make immoveable-mind my castle.

I have no sword – I make absence of self my sword.

– Anonymous Samurai, fourteenth century

Carpe Diem! If Not Now Then When?

6 weeks out from surgery. Brooke and I traveled to MD Anderson last week for my surgical follow up. Thankfully it went well. The surgeon was pleased and I am on track and recovering quickly. The one bit of concern was the persistent headaches and dizziness I have been wrestling with, a small cause for concern.

Brooke and I watched the surgeon’s face when I mentioned the headaches and dizziness, a flicker of concern, and he ordered a brain MRI to make sure I was clear. The MRI threw us for a loop. It was poignant reminder of how fragile we are, and that even with a good prognosis nothing is for certain when dealing with cancer. We had another 48 hours of “what if”, waiting for the results, holding our breath, and breathing through the uncertainty.

Thankfully the news from the MRI was positive, no issues. Most likely the headaches and dizziness are from a lingering sinus infection. Makes sense, my body has had other issues to worry about! So I started a round of antibiotics and the headaches and dizziness, although not entirely gone, seem to be receding.

Holding uncertainty is our new norm. Now, like so many other survivors, we play the cancer game. I am in remission and that is excellent, we stay vigilant for 5-years, get regular scans, and live as healthy a life as possible. Good diet, low stress, plenty of exercise, gratitude, and appreciation for everyday. Brooke and I can now let go of the constant fear and ease back into a “normal” life. Yet for me I feel as if I have walked through a looking glass. My life changed August 1st and it will never be the same.

As it turns out my cancer was farther along than previously thought. My first pathology report in Boulder said it was in situ, so early that a quick surgical procedure and I would be cured, a 100% survival rate in five years. My post surgical pathology revealed a bit more advanced nemesis, Stage 1B. The five-year survival rate for people with this stage, who have had my exact procedure and outcome, is 60%-80%. My surgeon said I should be on the “higher end” of that scale, I am relatively young, fit, and the tumor had not invaded the pleura or lymph’s. Good news. 

And yet, if you deal with %’s each day, as I have been trained to do, that still leaves risk on the table. 1-5 people, standing exactly where I am standing today, will be dead in 5 years. I don’t say that to be dramatic, it is just a fact. And while I am more than confident that I am solidly in the majority, I would be foolish not to be cognizant of this reality.

Like so many elements of this journey this too is a gift. I fully intend to live my life with the knowledge of another 40+ years ahead of me. At the same time if in 3 years I learn that I have stage 3 or 4 metastasized brain cancer I don’t want to have 1 minute of regret. Not 1 minute! I am not sure I can make that claim about the last 3, 5, or 7 years. I wonder how many people can?

I know that along the way I have made what I thought were meaningful sacrifices, trading X now for Y in the future. No more. I don’t want to have any “I wish I had…” spent time with my family or friends, time in nature, exercising, or investing in service to others. I do not want to waste another minute, personally or professionally, in areas that I am not completely passionate about.  Life is too short. The gift of this cancer is that standing facing my own mortality, I can no longer pretend otherwise. That genie will never go back in the bottle.

Isn’t that really the case for all of us? I wonder what the actual statistical percentage is for each of us once we pass 40 years of age? Life happens, illness, accidents, whatever…Maybe we all have an x% chance of survival in 5 years? Perhaps the only difference is that I have been given the gift of awareness to remain vigilant, to not slip back into the daily trance, the constant societal and cultural allure of “planning for the future at the expense of the present”.

As all the great spiritual and wisdom traditions teach us, death can come at any time for each of us, “this body too shall be a corpse”. The trick is to never forget the timeless wisdom, to live everyday as if this were our last. Carpe Diem!

 

 

 

 

Chasing Daylight

Not long after my diagnosis a friend sent along a book titled Chasing Daylight – How My Forthcoming Death Transformed My Life, by Eugene O’Kelly.

http://www.amazon.com/Chasing-Daylight-Forthcoming-Death-Transformed/dp/0071471723

He did not send along the book as any type of omen or to be a downer. In fact he sent it for exactly the opposite reason, as a positive re-enforcement after reading my post “Dad I am glad you got cancer…” where I was reflecting upon the gift of time and presence that the cancer had afforded me with Brooke and my children. I read 2/3 of the book right away (it is a very quick read), and then stopped. I resisted reading the last 1/3, his demise. I finally finished it today.

It is a profound book and I highly recommend you put it on your reading list. And for those of you who are type A personalities, and especially those striving away in the corporate world (you know who you are), it is a must read. I won’t give too much away, yet suffice it to say the author was one of us.

One thing I will share, perhaps as a tease to encourage reading the book is the following paraphrased comment  –

“I used to think that the most important virtues a person could cultivate were commitment and consistency…I now realize that it is consciousness…”

And with that I will close with a favorite poem by Robert Frost that captures my present conciousness…

The Road Not Taken

Two roads diverged in a yellow wood,

And sorry I could not travel both

And be one traveler, long I stood

And looked down one as far as I could

To where it bent in the undergrowth;

Then took the other, as just as fair,

And having perhaps the better claim,

Because it was grassy and wanted wear;

Though as for the passing there

Had worn them really about the same,

And both that morning equally lay

In leaves no step had trodden black.

Oh, I kept the first for another day!

Yet knowing how way leads to way,

I doubted if I should ever come back.

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a yellow wood, and I –

I took the one less traveled by,

And that has made all the difference.

– Robert Frost