Catalyst of Restoration

It's been about a week since I last posted. Much has happened and it has been harder to muster up the gumption to write. Yes, I'm sounding like a grandfather now. Must be the meds.

Down to 180lbs, November 30th, 2013

First an update on what's been happening with my treatment: After receiving my second of three chemo treatments this past Monday, I was feeling fairly good... but it came to a crescendo last night, feeling aches in ways I've never felt before. 

After truly losing all taste, the desire to have a stomach that is full is a distant memory. I stood by the microwave last night, melting ice cream so that I could squeeze an extra 600 calories into my PEG tube, trying to stave off more weight loss. (In case you've been wondering, PEG stands for Percutaneous Endoscopic Gastrostomy. Don't worry. I had to look it up again too.) I met with a nutritionist a couple of days ago that is helping me maintain/gain weight. Apparently I am not her usual client, so she's giving me calorie goals to not go below. 

My weight has now dropped down to 180lbs, having lost another 2lbs this week. That's 30lbs since the night that I was able to enjoy my "last supper" with my assistant, Charity, on our way back from my seminar in Bellingham, Washington. It is a place called "Boomers Drive In", which is my girl's and my favorite burger joint. Their milkshakes are made with real hard-pack ice cream! I can still taste the cheese burger, tater-tots and chocolate-fudge malt now... Well, my memory can. I can't wait to go back and refresh my memory. 

The radiation oncologist says that what taste I will get back should be returning by June, so I'm looking forward to a tasty potluck with all of you to celebrate and remind myself that I will be alive and able to taste! Start getting your recipe cards out now...

The side effects from the radiation have been slowly building too. Sores inside my mouth and gums have been increasing in intensity. My saliva glands aren't functioning much, so waking up with a paper-dry mouth at night is a bit painful. Adding a drink of water soothes, but re-hydrates the sores too... Thankfully I have pain meds to take the edge off, but they are only adding to my general feeling of sluggishness. I am also losing my soul patch that nifty tuft of hair that sits below my lower lip. It is getting thinner, and what is left is gray, but that gray is standing its ground. Gray hair must be like the "cockroaches surviving the apocalypse" by comparison. Either way, I haven't had the heart to shave off what is left.

At Radiant Care, in the same inner waiting room that I met Tony a short while back, I've been getting to know a man named Warren. Since patients all have fixed treatment schedules (mine is at 2:45pm M-F), I have had the chance to get to know those with time slots around mine. Warren is 86 years old and has tongue cancer also, and he is being treated with chemo and radiation therapies, just as I am. I can't imagine going through this therapy regimen at nearly twice my age, but it makes me not want to complain. 

Warren and I had a few extra minutes and spoke about our Thanksgiving time with our families. I was able to enjoy the same thanksgiving meal that Warren had, which was a glass of water after squirting my meal-replacement powders and supplements through my "PEG" tube. Warren was really happy because it was the first time in weeks that he could take water by mouth, but he still was smiling, still happy that there were things to look forward to. The highlights of his Thanksgiving day were four hand-written letters from each his four children. He told me that they took the time to tell him not just how much they loved him, but reminded him of their favorite moments with him growing up and how he impacted their lives as their father. His whole demeanor changed as he told me of some of their memories and how much he meant to each of them. I'm crying right now just remembering the smile on Warren's face. He was so blessed by that. What a huge gift.

Me with my parents at our Thanksgiving Dinner, 2013

I will not likely see Warren again after Monday, since it will be his last scheduled radiation treatment, but getting to know him these past couple of weeks has blessed me. I am so very thankful to still have my parents in my life. Dad is 81 and Mom turns 80 in January. They are a spark of life to me and provide relentless encouragement that never ceases. I am so very blessed by them in so many ways. 

As we enter this time of thanksgiving and the holidays that are approaching, I encourage you to consider your gifts not to be something that you can wrap up in a box with a bow or have delivered overnight from Amazon.com. Instead, take time to look at the gift of unconditional love and forgiveness. The gift of giving encouragement and positive words. It says in Proverbs 18:21 that "death and life are in the power of the tongue." I only have half of mine left, but I am realizing both the responsibility and possibilities that come from that power more now than ever.

I suppose it is easy to find faults in others and reasons why we are "right", but those reasons can end up causing us to become embittered. We often reflect that bitterness into the once-shiny eyes of those who are hurting because we withdrew without taking the time to share our hurts and mend the fences, seeking restoration... Your love and being willing to move beyond the pains of the past can be the catalyst for healing and opening up a dialogue for redemption. Do not lose out on opportunities to shine blessings into the faces, hearts and ears of those that have need of you in their lives. Your words, written or spoken, can bring life.

~Robert B. Haase,

A Blessed Man

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Applying The "Gate Theory" to Life

It is 5:30pm on Friday evening and I am sitting in my recliner with my laptop, wearing a t-shirt and flannel pajama bottoms. I can hear the drone of the clothes dryer, but otherwise the house is quiet. I know I should get up and enjoy the dinner that my friend Lisa so kindly dropped off for me yesterday, but to be honest, I'm nervous about eating it. 

It seems that I've finally lost nearly all of my ability to taste, and what I can taste has been burning my tongue. The radiation is causing open cuts and sores in my mouth that even the simplest of foods turn into a sensation of razor blades. I'm losing my desire to eat. At 28lbs lost, my doctors aren't happy with me because I need to maintain my weight. It looks like I'll be using my feeding tube more than ever now. 

The good news is that in three days, I will officially be at the half-way point of my radiation treatments and will receive my second of three chemotherapy treatments. I was praying that I would be the exception and not feel the pain, but that apparently isn't meant to be. The pain increases daily, and the medications must increase as well. It explains why I keep falling asleep as I write this. I hate pain medications because of the side effects. The newest side effect is that I am losing my voice. Losing it probably isn't necessarily a bad thing since it hurts to talk. Swallowing is getting more and more painful too. 

There I go, focusing on pain. I know better. 

In the lecture portion of my injury treatment seminar, Secrets of Deep Tissue™, I discuss something called the "Gate Theory." This theory applies to my current situation directly. 

Let's say you been working in the yard in the warmth of the summer sun, pulling out blackberry vines from the side of your home. As the day goes on, you are covered in dirt and sweat. A neighbor approaches, looks at your arm, and says, "Hey, you've cut yourself! You're bleeding!" As you look down at your arm, sure enough, there is a long scratch. Amidst the dirt and shimmering sweat, there is a long trail of blood and in that moment you feel the pain of the scratch from the blackberry thorns. 

Prior to focusing on the injury, your mind was busy. It was feeling the sun on your face and the strain of your muscles working. It was hearing the music of your favorite band in your headphones and feeling the sensations of refreshment from a bottle of cold water... What you did not feel was the 4" scratch on your forearm. Why? Because other sensory input kept your brain busy, drawing attention away from your arm.

How does this apply to me? I need to stop focusing on the obvious negative impacts of my treatment and begin focusing on what is important. I have had friends say, "Don't be afraid to be 'real', to be 'human'! It's okay to show weakness!" I agree, but when I focus on my pain, guess what I feel? Pain. 

Life is like that. When we focus on the negative, things we cannot control, things like pain, what we don't have, how others have wronged us, the hurts from our past, etc., those are the things we feel. We feel the emotional scratches from the blackberry vines of life. 

My prayer for you is that you are able to put your focus on what is important and use the "Gate Theory" for good. Fill your mind and thoughts with that which is good and positive, the silver linings. Let those things make you smile and leave no room for that which would rob you of your joy. I will join you in this exercise and continue to search for my many blessings amongst the increasing pain. 

~Robert B. Haase,

A Blessed Man

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Frankenmouth

It's been a few days past when I had hoped to have a new blog post published. Trying to balance medications to keep the pain under control while having clarity of thought to write has been challenging. My friend, Jayme, recently quoted Ernest Hemingway: "Write drunk, edit sober." Pain medications aren't alcohol, but what I type under their influence may not be quite exactly what I had intended, nor does it allow me to keep from colorful tangents. So, before my medications begin today, I'm writing as fast as I can...

I am excited that I have now completed a third of my treatment. The first of three megadoses of a toxin "soup" called "Cisplatin", and ten of thirty radiation treatments. The doctor was right. It's not as fun as you would hope. My taste buds have taken a hiatus, and my tongue, jaw and neck are under attack.

You know how you can spend all day in the sun and feel great, but later that evening, you realize that you have been burned? Radiation is like that. I feel great during treatment, but four to five hours later, things change. This week, the side effects have become more apparent. The front of my neck is tightening, drawing the tissues into a shortened position, my tongue is being burnt (especially the good side), and allowing the tissues to rip just by rubbing over teeth that never were an issue before, and my vocal chords are taking a beating. I've had that "just woke up" sounding voice all day today. I recorded a video while I've still got a voice to speak for you...

Earlier this week, I woke up to see that my feeding tube mechanism came loose. Oops. That resulted in a trip to Urgent Care at Group Health who then referred me back to Virginia Mason Hospital for a procedure to fix it. My daughter, Ashley, blessed me by picking me up at 5:15am to drive me. Nothing like a father/daughter road trip!

In truth, it has been more than difficult emotionally to see the devastation that this cancer has wreaked upon my body each morning. Seeing the scar on my on my thigh for my skin graft, the tube hanging from my abdomen, the stoma (tracheotomy hole) scar that tugs and bounces with each swallow, the swelling on my left neck and rock-hard scar tissue created from surgery. And then there is my tongue. It honestly looked amazing in the days following surgery, but today, the tissues look off in color, parts rubbed away in  from eating and wear. The tip is splitting and sensitive from radiation and I even ended up with "thrush" a week ago, an oral yeast infection from my treatment. Every swallow takes a concerted effort. Most frustrating is that I have completely lost my taste of sweet. Even the "chemo jello" recipe that was lovingly suggested by a comment on one of my previous posts has absolutely zero flavor.

On the upside, my body is getting healthier. Just a few months ago, my doctor informed me that I have Type II Diabetes and needed to lose weight, exercise and eat better. Who knew that I would be able to not only lose my craving for sugar, but lose 25lbs and become leaner in the process? My fasting blood sugar levels yesterday were the lowest they have been in years. How awesome is that?

A friend asked me this week to be honest... "Seriously, why aren't you mad?" My answer was different than before and it was more along the lines of answering the question, "Why would a loving God allow this to happen?" I have heard that question so many times over the years. The answer is simple...

Unless you want to give up your free will, you cannot blame God for bad things that happen. Think about it. You are bound and determined to have a clandestined encounter with another person because you are angry with your spouse. You get into your car and drive down the freeway. Suddenly the steering wheel becomes unresponsive and literally steers you in a different direction. God took away your free will and intervened. Would you be angry? Maybe you are on your way to Burger King. You've been craving a Triple Whopper. But God knows that will lead to cardiovascular disease... again, the steering wheel and car ignore your input and drive you to a vegan restaurant. Would you be angry? We want free will, but want to blame negative outcomes on God.

Let's say you have been diagnosed with cancer... Most might want to blame God, but maybe you developed cancer as a result of eating Yellowfin Tuna that has been affected by fallout from Fukushima, the Japanese nuclear reactor that had a meltdown. That reactor was built because of a long-term energy plan by the Japanese government... humans on that board of advisors had the idea. Maybe that original thought came from a guy named Takashi. If you want to be angry, you really should be angry at Takashi, right?  But that is short-sighted. 

Accidents happen. Ultimately, our bodies are dying from birth. We are susceptible to the environment and other dangerous elements. You want to blame God because your daughter was driving under the influence, ran off the road and hit a tree. We blame God for the actions of others and given the choice, would never give up our freedom of self-will and choice. 

I had half of my tongue removed because of a viscious form of cancer. I don't care how it manifested, I care about what I do with where this journey takes me. Every moment is about choice. About free will. I make a concious choice to see the blessings I have all around me rather than the curses, and that choice makes me smile. And that freedom of choice is just one more blessing in my life. 

~Robert B. Haase,

A Blessed Man

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When Food Tastes Like Cardboard

The title of my blog address, "Not What You Had Planned" was written on a whim because I had to go with something quick... I was headed into surgery and did not have time to do any market research or planning... just pick a "Blogspot" address that would stick. I can honestly say that It was the perfect choice for what I have been going through. Cancer treatment of this magnitude, affecting my life so significantly... it was never in my plans.

If you know me, I'm not the kind of man that sits around and lets time pass without doing something. I would much rather be creating something or boarding a plane, flying off to somewhere. I have things to do, but even if I do not, I still hop on a plane. 

My first week of chemotherapy and radiation this week have challenged me in so many different ways, but in general, receiving chemotherapy is like intentionally getting the flu. I recommend against it. Vehemently. The best way to describe it is like how you would feel the morning after losing a title fight. Lead bags of weight hanging from every muscle, every limb. Every movement feels restrictive and heavy.

The good news is, I have now completed the first of my three heavy chemo doses and the first five of my thirty radiation doses.

Radiation is a lot like laying in the sun. You do not notice anything while you are "baking" in the rays, but you notice the effects later. My anterior neck is already stiffening in defiance against being attacked. 

Yesterday was my fifth treatment at RadiantCare in Lacey, Washington. I handed my iPhone in camera mode to the tech and asked her if she could document my treatment for you all. She smiled and started snapping photos right away.


Once I take my shirt and glasses off and lay onto the narrow table, they "snap" my hard-plastic mesh face/shoulder mold down, bolting me into position. Once it is fastened, you cannot really move.

I think daily about the many blessings I have in my life, even when it is hard. These past few days, I've been frustrated that my morning coffee tastes bad from the chemo, I feel queezy most of the time and my food tastes like flavored cardboard. And then I met "Tony" yesterday in the waiting room.

Tony is a strong, athletic man in his late thirties. He's got a big smile, when he unleashes it, but it has been a hard road for him as he is was about to receive his 38th out of 40 radiation treatments. Tony had his right leg removed at the hip and has to hop with a walker. Like myself, he has Group Health for his insurance company. I need to be careful here because this blog is read by many people, including health professionals, but Tony's story made me realize how blessed I am.

Months ago, Tony was diagnosed with a tumor, about an inch in diameter, in his right leg. It literally took 3-months for the insurance company to provide approval for his surgery. When he was finally allowed to have it removed, it had grown to 10lbs in size. It was so invasive, his leg had to be amputated to save his life. I'm complaining about "cardboard" food and a tongue that doesn't work the way I want it to. Tony lost a leg. I am a blessed man.

I ache for Tony and the path he is on. The months of recovery and therapy that lie ahead for him. The anger he has to process that came about as a result of bureaucracy that is out of his control. It wasn't Tony's plan to lose a leg. This time last year, he was active, enjoying life. Today, his options have shifted significantly. It reminds me of that poem that reads, "I was sad because I had no shoes until I met a man that had no feet." I went out for a walk this morning to help get the chemo out of my body. Tony doesn't have that luxury anymore, at least not as he once did. 

I'm not saying it is easy, but regardless of what is happening in your life, the needs that are not being met, the shortcomings of what you had hoped for, unmet expectations, you are still blessed. I think it is when we are thankful in our hearts for what we have that change is able to flow and our hearts melt for others rather than harden.

The Bible verse I learned as a child in Sunday school, Philippians 4:6, didn't mean much to me back then. But it does now. We always seem to "ask for" and "want more", stressing about our lack before we count the blessings that we do have...

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God."

I am thankful. For so very much. 


~Robert B. Haase,
A Blessed Man

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Recovering from Chemo and Radiation: Video Blog...

Hello, dear friends,

As you know, I began chemotherapy and radiation therapies this past Monday, November 4th. The morning after, on Tuesday, my body felt like I was hit by a truck, but I am much better this morning, which is a great thing. With such a large dose of chemotherapy, the doctors were concerned my kidneys might shut down, especially if I couldn't stay hydrated from the usual nausea.

Thanks to amazing medications, a LOT of water and exercise, I am so happy to report that I'm feeling better today! What a huge blessing!

I had a great few days with my sister, Lisa, and we were able to get out for a walk today before she headed home.

My blog today is short, but I have a video message for you. Thank you ALL for your loving support during this time. Your encouragement means the world to me, and blesses me more than you realize.

~Robert B. Haase,
A Blessed Man

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A Plethora of Emotions

I remember going through the divorce process with my girl's mother... It was the most gut-wrenching and emotionally devastating time in my life. Although by God's Grace, we have healed completely, forgiven the past and love each other, that period in time still remains in the periphery of my memories. Memories of pain and sadness. I have never experienced anything like it, until now. 

I can't compare the destruction of an 18-year marriage to fighting cancer, but it is surprising to me just how similar the two seem to be. Although I am incredibly thankful to have Debbie's undeserved forgiveness and restoration of friendship, I have absolutely no desire to make amends with this mean-spirited entity we have come to know as Cancer. He goes by many names. I won't list them here as this blog is read by children and the elderly alike, but he is a bastard. Just saying. Once I beat him, I have no desire to make ammends... the complete and utter destruction and annihilation of our "union" is one I will cherish for the rest of my long life. 

During the divorce, I lost a lot of friendships. Friends who were overwhelmed by feelings of animosity towards me, angry at my part in the divorce. Some who didn't want to "choose sides." A few tried to restore our friendship, but very few, and most unsuccessfully.  I built new friendships during that time, though, and those friendships continue to this day. 

The same thing seems to be happening now in the midst of this cancer. On the upside, I am gaining new friends faster than ever before. People that were total strangers are reaching out in love and support, warming my heart and giving me strength on a daily basis. But sadly, the opposite is true... I'm losing friends. Friends that I was close to and love dearly who have pulled away at the very time I need them most. I don't know if it is fear, uncertainty or that they don't want to be close so it will be easier for them should I lose this battle. Either way it hurts. Like Jesus' story of the shepherd and the 100 sheep... he had 99, but went looking for the one that wandered off. I can't chase and pursue what doesn't want to be found though. I just long and ache for what was. It's been a hard road in so many ways. 

On an up-note... my speaking ability is improving a little everyday. The radiation will likely affect that, but I'll let tomorrow worry about itself. I'm just happy that my voice has hope. Here is a video I shot just this morning...

My wounds are healing well too, although to look a them, it might not be so apparrent. As to not "gross out" those who are queezy, I'll refrain from showing my arm here but will post it to my friends on Facebook instead. (If you want additional details that I don't post here, feel free to friend me on Facebook. The link is below.)

I want to thank the amazing people at Studio B, located here in Olympia, for holding a fundraiser for me this past weekend. They were a huge blessing to me! As the medical bills are starting to come in, their timing couldn't have been more perfect. Please stop by and have them work their magic on you! (Not that my friends need actual magic to look good, of course.)

~Robert B. Haase,
A Blessed Man

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