You Are Not Alone

Cancer is cancer. 

In my opinion, it does not matter what type of cancer a person gets because the reality is, all cancer all is bad.

It has always seemed odd to me to financially support research for a particular type of cancer because all cancer is fundamentally an out-of-control mutation of the body's cells.  

What I have learned from the 14 surgical procedures on my tongue is that the physical devastation of most cancer types can be hidden from the public. I mean no disrespect to those who have suffered from breast cancer, liver cancer, or others, but most cancer survivors can cover their scars and camouflage most of the  damage that cancer leaves in its wake. Tongue cancer survivors are not as "fortunate", however. We cannot hide that we talk different or that we cannot swallow the same. We do not have a functioning tongue to easily sweep away the food that cakes into our teeth as we eat in public. If we had radiation treatments, we likely have limited salivary gland function and cannot easily eat or talk much without a beverage in hand. We look at artisan bread as a tasteless sponge in our mouths. At the very least, it forces us to put our egos aside and be humbled since the swath of destruction is out there for everyone to see when we endure the ravages of tongue cancer.


When I found out that I was going to have 1/2 of my tongue cut out, I panicked at first. Then I did what most do when we want information on something we do not understand... we "Google it"... The trouble was, when I searched, nearly all of the information referred to the "facts" about hemiglossectomy rather than the reality of what I should expect. With the exception of one video I found, every site wanted to educate me on what a "hemiglossectomy" was.  I wanted to know what to expect.

As you probably know by now, my intent in starting this blog was to not just to chronicle my story but to encourage others and help people who were also facing an impending hemiglossectomy. People who were about to face the unimaginable. 

Regardless of what you are facing, how you get through it comes down to choice. A choice that involves a series of individual steps in the direction that you affix your gaze. 

I know from experience that the reassuring voice from one of my iPhone GPS apps giving me a heads-up, warning me about upcoming turns, traffic and hazards, making the journey easier. 

The point is, knowing what to expect can be hugely impactful. Knowing that something bad is in our future can be unsettling, but when we lack information about what lies ahead, it can be downright scary.

With this in mind I have decided to begin building a platform for others to tell their stories, allowing their experiences to be a blessing to the world. I hope to help those who are facing a hemiglossectomy by giving them the information they need to mentally prepare.

In October of this year I took a trip out to New York City and met with an amazing woman, Erica Casucci, who had a hemiglossectomy just two-months prior to when we met. Erica was researching the procedure prior to having it done and found this blog which helped prepare her for what lay ahead. I asked her if she would be willing to be my first interview to help others and she agreed, even though she still is struggling with her speech. This following video was filmed on October 17, 2015:


If you have any questions, please feel free to send them along and I will try to address them in an upcoming blog or video post.

Thank you all for your love and support!

Very Truly Yours,
Robert B. Haase
A Blessed Man
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24-Months Since I lost 1/2 of My Tongue - Video Update

I cannot believe it has been 24-months since my hemiglossectomy and if there is one thing I have learned, it is this:

Life doesn't stop for cancer.

Making the choice to push on when confronted with adversity doesn't make us special. It is all about taking inventory of what is important to us, finding a reason to not give up and pushing through.

To those who get those devastating words, "You have cancer", I encourage you to not let cancer define you. Let it just be another chapter in the adventure of life. Do not waste your energy worrying about dying but instead be grateful for the blessing of another day of living. 

The following is my video message celebrating 24-months of recovery after having 1/2 of my tongue, the left half, cut out...

To those of you who have contacted me and shared the story of your own hemiglossectomy, thank you. Thank you for giving me the opportunity to pray for you hopefully encourage you. Please know that you are not in this journey alone.  

Very Truly Yours,

Robert B. Haase

A Blessed Man

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"Don't look where you are. Look where you want to be."

Two months ago today, on July 18, 2015, my friend and long-time teaching assistant was killed in a tragic accident. After teaching the first day of my seminar in Des Moines, Iowa, I received a text from a friend in Olympia asking me to call. She told me that she heard a rumor that Charity died in a freak sporting accident earlier that day.  I was 1,800 miles away but confirmed it with Charity's sister, Coral. She didn't make it.

Charity had always come with me to Iowa, but this time she stayed home and competed in the Wilkeson Handcar Races in Pierce County.

The Olympian Newspaper covered the story and then KOMO News called and wanted to talk to me about Charity.  While the cameraman was setting up, I spoke with the reporter off-camera about his previous interviews that day. I won't share here, and really don't want to share with anyone about what told me with me about the details of Charity's death, but it was horrible. I cannot fathom what her husband experienced as he tried to hold Charity together in her last moments of life after she was run over by that 1/2-ton handcar. Charity was a strong, energized and amazing woman who was the definition of health. The fact that she's dead makes no sense to me.

If a year ago I told you that one of us, Charity or myself, would be dead, everyone would assume it would be me. Right? But why wasn't it me? Why do I get to live and she is gone? It's hard to write with the tears running down my cheeks and I'm filled with emotions as I write this. Anger, hurt, disbelief and sadness.

Why not me?

I've said those words before in this blog, "Why not me." In that post I was referring to people always saying, "why me?" when they face adversity. A certain percentage of people will deal with a given malady, for example, and when we say "Why me" when something happens, we are really saying that someone else should have to have the sickness or turmoil that you are facing instead of you. Charity dying seems senseless. Why not me?

I've been quiet for a while on this blog, but much has been happening.

Probably the biggest part of my unreported journey is the pain I've been dealing with. The first wave has been going on for the past year and a half in my face, jaw, neck, shoulders. It never stops, but it does get worse occasionally. An MRI recently showed a bone spur growing in my neck in response to the cervical radiation. Nothing really helps bone spurs and in the neck, surgery isn't an option.

The aspect of the pain has been from the waist down. Apparently the combination of cervical radiation with the specific chemotherapy I was given, Cisplatin, causes a neurological condition called "Lhermitte's Syndrome, which is an electric shock-like sensation in the spine and extremities exacerbated by neck flexion."

I didn't realize that what I experienced was from my treatment until a woman in the Seattle area heard my followup story on KOMO TV4 recently and told me of her similar experiences. She mentioned the "buzzing" down her legs and we started conversing about it.

From the first time I started eating by mouth again after my chemotherapy and radiation in December of 2013, I have been getting a sharp, shooting pain in my jaw from the instant food hits my mouth which lasts about 60-seconds. The pain has been slowly increasing and has come to a crescendo in the past few weeks. It is overwhelming at times. For you anatomy buffs, it is located about 1.5" anterior of the ramus on the left side of my mandible. There has been a swelling at the site as well.

I had my ENT examine it as well as my dentist. X-rays and a CT scan excluded cancer, but they found a complication from my major surgery in October of 2013. They confirmed that the arm tissue that was sewn into my remaining tongue tissue is anchored a bit too well. It seems to be pulling my gum away from my back left molar, revealing the root of my tooth. The dentist had a nifty camera that showed me what was happening and even emailed me the photo. I won't post it here.

Trying to rebuild and run my business while conducting seminars nationally is time-consuming enough, but trying to squeeze in what will likely be two oral surgeries complete with tissue and bone grafts while continuing to speak publicly seems like a bit of a challenge. Good thing I have family and friends praying for me.

In all of this I have had the amazing opportunity to meet others with my condition because of this blog. I am not alone. I feel blessed to have been able to encourage two young women who have had the surgery in the past couple of months. What they are enduring post-surgery is nearly identical to what I experienced. As a matter of fact, if you are reading this and you are facing a hemiglossectomy or have had one, please friend me on Facebook. I would love to be in contact with you be an encouragement however I can. Specifically, I am really looking forward to meeting a young elementary school teacher and her supportive husband when I am in New York City this next month.

This journey has been hard. I try to stay strong for my daughters because I don't want them to worry about me. They have so much living to do and worrying about "what if's" when it comes to my health isn't healthy for them. In the movie, Insurgent in the Divergent series, the protagonist, Tris, has a virtual conversation with her mother about her bravery. Her mother says, "You are brave... braver than anyone." Tris replies, "I'm not brave mom. I pretend that I am, and I want people to think that I am, but I'm not. I'm really, really scared."

Those words hit home to me when I heard them. I actually broke into tears because they are exactly what I've been holding deep inside. Then I realized that bravery isn't in hiding our fears. Bravery is what we do when faced with our fears. You can still be brave with tears running down your cheeks. One of the bravest men I've read about was Winston Churchill. He is often quoted as saying, "Never, never, never give up", or some variation of that. According to the Churchill Centre, what he actually said in a speech was made October 29, 1941 to the boys at Harrow School was:

"Never, never, in nothing great or small, large or petty, never give in except to convictions of honour and good sense. Never yield to force; never yield to the apparently overwhelming might of the enemy.''

To Charity's husband and daughter, I leave you with Churchill's words. The loss you feel which far exceeds my own will come in waves as it has with me. Periods of strength followed by raw weakness and utter sadness. 

Churchill's advice is incredibly spot-on regardless of what enemy you are facing. Whether that enemy be fear, depression, pain, loss or broken dreams. Never give in to it. 

It's like my driving instructor told me, "Don't look where you are. Look where you want to be."
  

Very Truly Yours,
Robert B. Haase
A Blessed Man
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Encouragement and Hope

I feel so blessed. It has now been over 20-months since my hemiglossectomy. I have able to travel, have resumed my public speaking, and have been able to return to as "normal" a life as I could imagine. Although I continue to face the ups and downs that we all experience, like the process of rebuilding a business or suddenly finding myself single, there have been so many blessings along the road.

I have had numerous people find this blog while searching the term "hemiglossectomy" or "tongue cancer" and they have "friended" me on Facebook or emailed me as a result. Having the common bond of the fears and pain that aggressive tongue cancer brings with it has been a blessing for me and for them. It doesn't matter what type of cancer you are faced with though. Realizing that inside your body is a pack of cells that want to do their best to end your life is more than unsettling. For all of the advances in medicine, fighting cancer still feels like a barbaric war. Chemical warfare... atomic energy that is used to make superheros in the movies but decimates parts of us instead. And after the battle, we have to deal with the aftermath, scars and wounds that lie deeper than we really ever thought was possible. We have a choice though. We can wallow in self-pity, or realize we are blessed to even have our next breath and yet another day to make a difference. The words we speak amidst the war we fight will live on longer than we will survive. Will those words be full of bitterness or encouragement and hope?

When Molly Shen from KOMO TV 4 (Seattle's ABC affiliate) came to my home to interview me last month, she confirmed that my surgeon had been badly burned on his arms and hands last year and was unable to perform surgeries for a while. He told her that he had reflected on my conversations with him during my treatment at Virginia Mason Hospital and my words, attitude and perspective was a part of what helped him get through his own ordeal. You can read the story and watch the video on the KOMOnews.com site here.

Although I still am a business and marketing consultant and speak on various topics, I am feeling a tug in my heart to begin giving people tools and encouragement when they face adversity. You may have heard of "TED Talks" or have seen some of their viral videos on the web, email or via Facebook. I was told that they are coming to Olympia, Washington in September and were looking for speakers. The theme for the Olympia presentations is "The Point of No Return." They wanted speakers to submit their stories about how something happened in their lives that changed their lives and the course of their future. I thought, "Bingo! That is EXACTLY me! Of course they will want to hear me tell my story. I'm already comfortable in front of audiences!" I even planned my fall national seminar schedule around my inevitable selection from the TED Talk people. I was so excited that my story would be able to help millions.

And then the email arrived. "You were not selected..."

At first I was hurt and dismayed. Then I realized that every time something like this has happened, God had a better, bigger plan. The next day I secured the name of this blog as a website – http://www.NotWhatYouHadPlanned.com. It currently forwards to this blog, but the "Encouragement Talks" (only a working title) will be coming as my schedule allows. If you have a story and are comfortable telling it on video, send me a short email of your story with "Encouragement Talks" in the subject line and I'll get back to you in the near future.

My heart's desire is in talking with others, encouraging them, helping them see that there is hope when all hope seems lost. Whether an audience of one or thousands, I want to use the life that I have left to be a blessing and change our world through kindness, encouragement, hope and being a blessing to everyone I meet. In the KOMO News video, I say "I am not afraid to die... I am afraid not to live." 

Be a blessing to someone today. We are not guaranteed a chance to have the opportunity to do so tomorrow. 

Robert B. Haase
A Blessed Man

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18-Month Update

It's been 18-months since having 1/2 of my tongue removed and I wanted to give you an update. When I say I'm not "religious", it's because my faith has grown in my relationship versus my religion. I am a blessed man indeed...