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Castle Point Court
Glen Allen, VA 23060

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Garth Callaghan

Napkin Notes Dad

Author

Speaker

Awesome

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Blog

The Napkin Notes Blog

Health Update

WGarth Callaghan

 

It's time for a quick health update. 

I had an MRI last Sunday and met with my oncologist on Thursday. 

There's no material change. We still see the same lesions on my liver that we've seen for a year. There's been no change since June 2014. 

We will check back again in about 8 weeks. 

We're discussing a lot of options and alternatives. The meds have been hitting me pretty hard lately. I'm tired. We need to fix that. 

I need to get back to the softball game. Have a great night!

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Across Frontiers

WGarth Callaghan

 

I love the time in which we live. I spent part of my morning collaborating with Hanna, the translator who is working on the Polish version of Napkin Notes. 

It was an eye opening discussion. I think it will make me focus on clarity and continuity as I write. 

I also found a big mistake! I'm not sure how I made this mistake, but it's right there on page 191. Can anyone pick it out? 

Pack. Write. Connect.

#43 (Star Wars Shirt, that is)

WGarth Callaghan

#43

There was a surprise package in our mailbox today. I could see my sister's return address when I pulled out the envelope, but this wasn't from her. Her dear friend, Carmie Stanek, was in Florida recently. She knows my love for Star Wars shirts and how I use them to "stay different" at the doctor's office. It's my 43rd Star Wars shirt.

Thank you, Carmie! This is my new, favorite Star Wars Shirt. It makes me look forward to my next appointment!!

I always wear Star Wars shirts to each and every medical appointment.

What do you do to make yourself remembered?


No Change - Again

WGarth Callaghan

I lie in bed as I write this. I'm tired today. I didn't get nearly enough sleep last night and I'm greatly looking forward to closing my eyes soon. I've found that a good 11-hour sleep is best for me. It certainly cuts in to my family time, but both Lissa and Emma understand my need for extreme sleep lately. 

I had an MRI and a CT scan last week. I also had an MRI in December,  it I didn't share the results. I wasn't hiding anything, but December was a pretty busy month for us and the results were mediocre in my mind. 

No change.  

My MRIs have shown now change since June.  

Zip.  

Nada.  

I still have metastatic kidney cancer. It hasn't grown. It hasn't spread. 

It hasn't gone away, either.  

I know I should be excited, but I'm not. "Stable" isn't winning.  "Unchanged" doesn't beat cancer, and that's all I want to do. I want to beat cancer so badly I can feel it in my bones. 

It's not going to happen today, but it will happen. I'm all in. 

 

Thank you you for walking on this journey with us.  

Mom's Turn

WGarth Callaghan

 

I had a very bad night and didn’t get out of bed this morning. My wonderful wife, Lissa, made Emma’s lunch and wrote her a Napkin Note in my place. How’d she do?? 

PS - I think it’s pretty awesome! If you think she did a good job, please leave a comment for her! 

Pack. Write. Connect.

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An Avid Reader

WGarth Callaghan

I snuck the Christmas present from underneath the tree. I just had to see what was inside. Of course, I knew that it was a small box of books. My parents had sent me this as one of my gifts. The Customs Form on the box listed: cookies, candy, clothes, and books. I could tell by its shape and weight this was a box of books, probably three paperbacks. I desperately needed to open this present undiscovered.

By the age of 16, I was a master of Christmas sneakery. I could touch, feel, shake, and when necessary, open a present, in order to guess the gift. I hadn’t been totally surprised on Christmas morning for more than a few years. I even discovered my mother’s “Master List” which showed each and every single present purchased. I tried not to look at that list. Using that list was unsophisticated and almost like cheating. My techniques required finesse.

If I couldn’t guess the present from feeling it and shaking it, then I resorted to opening it. That was always risky, but using a sharp knife with the proper technique, I could slit the tape and slide the present from within its wrapping paper confines. The tricky part was getting it back in without tearing the paper. My mom tended to wrap presents tightly, and the slightest misstep would cause a rip that would expose my spying activities. Future Christmas sneaking was dependent upon my successful repackaging and taping up the presents.

This Christmas was different. I was sixteen and away from home. I was living in Germany as an exchange student. I hadn’t read a book in English for months. I was starving. I was used to reading more than a few books a week, and I couldn’t read that well in German. I was still reading children’s stories and comics as I learned the language. But at that moment I held something more powerful than the Holy Grail in my hands. I held genuine, printed in English, fresh off the press, BOOKS!

I wanted to exercise as much caution opening the present here as I did back in my own home. Would my German host family understand my deep desire to have my present early? What would they think of me being such a sneak? Did Germans even try to guess their Christmas presents early? Those questions were quickly tossed aside as I slit the tape and carefully pulled the boxed set out.

Dragons! This was going to be fun. The Dragons of Autumn Twilight. I couldn’t imagine what words were inside, but I didn’t need to wait long to find out. I quickly found another paperback that was a similar shape and size. I replaced the stolen book with this facsimile, rewrapped and re-taped the present, and put it carefully back under the tree.

I took the book to school and read in each of my classes. I propped up my textbooks in each class to hide the fact I was reading something else. Most of my instructors didn’t call on me often. I was, after all, the American kid who didn’t speak German all that well.

I read, and read. Sometimes I didn’t notice class had ended until there was a shuffling of students. I would quickly pack my paperback away until the next class.

I fell in love with the characters in this trilogy very quickly. Both dragons and magic leapt from the pages of the book. Each character had a richness in personality that I hadn’t experienced. I was quickly drawn in to their world. I could smell the spiced potatoes they ordered at the inn and felt the fear of the heroes as their world seemed to crumble around them.

I finished the first book all too soon. I repeated the trickery with the second and third books, and in three short days I had read all of the books. A tear had been shed, not because I was finished, but because a beloved friend had died in this story. I had finished using up my Christmas present. Some would say I ruined the surprise, but I was just as surprised as I would have been on Christmas morning. I just enjoyed my gift a little earlier than my family imagined.

As luck would have it, I fell ill. It started with a small pain in my stomach. I couldn’t tell what it was, but I knew I didn’t feel well. The pain grew worse as the days passed. Eventually, I couldn’t walk without pain and was limping as I was buying some presents for my host family. I finally told my host mom, Elke, that I was sick. She fetched my host dad, Dieter, who poked and prodded my stomach for a bit. I winced in pain and was whisked away to a local doctor.

The doctor performed a few tests and seemed to rapidly give instructions to Elke. I only understood two words: sofort and Krankenhaus – immediately and hospital.

I paged through my German-English dictionary and found the word: Blinddarmentzündung – appendicitis. I was prepped for surgery and experienced the fun of hospitalization in Germany. My appendix was removed the next morning without much fanfare. 

As I was recovering, I was told to expect to be in the hospital for at least a few days. I would spend Christmas hospitalized. My host parents brought in a small Christmas tree to decorate my area. They also brought my presents. One by one I opened them. A t-shirt, Oreos, maple candy, peanut butter, and ... the books. My host family excitedly exclaimed, “At least you have the books to help pass the time here.” 

And that I did. I read them again, twice. I never let on that I was a sneak and had already read them. 

Napkin Note

WGarth Callaghan

 

Napkin Note: 
Dear Emma, 
When you were born, I saw that you were perfect and I loved you. Then I saw that you were not perfect, like me, and I loved you even more. 
Love, Dad 

Pack. Write. Connect. 

 

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Success

WGarth Callaghan

I look around at this group and I see a lot of different success stories this morning and you should congratulate yourselves. 

My name is Garth Callaghan. I have been diagnosed with cancer four times in the last three years. I've had two wins, a tie, and a stalemate. My doctors have looked me in the eye and told me that I am going to die from this. So far, I have beaten the odds. 

There are some people that will tell you that success is a goal, that it's a destination, that success means avoiding failure.  

I am here to tell you:

THEY 
ARE
WRONG

Success is a choice. 

Success means choosing to get your tired butt up out of bed, getting dressed, and joining your fellow runners and walkers when it's 19 degrees outside. Success is choosing to train instead of staying inside with your pajamas on. Success is choosing to train instead of sipping that warm coffee at your kitchen table. 

I have here a Napkin Note that I've put together for my daughter, Emma. I am saving it for a time when she really needs to read this.

"I've missed more than 9000 shots in my career. 

I've lost almost 300 games. 

26 times, I've been trusted to take the game winning shot and missed.

I've failed over and over again in my life. 

And that is why I succeed."    - Michael Jordan 

 

Have a fantastic run!! 

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10k Training This Morning

WGarth Callaghan

The beginning of the YMCA 10k training at Shady Grove this morning: 

"I look around this group and see a lot of different types of success. My name is Garth Callaghan and I am sometimes called 'The Napkin Notes Dad'. I have been diagnosed with cancer 4 times in the last 3 years. I have had two wins, a tie, and a stalemate. I am still battling cancer. My doctors have looked me in the eye and said to me, 'Mr. Callaghan, you are going to die from this.' 

Each and every single morning, I get up and I get to do three things. I thank God for another day, another day to be able to set goals and be successful. And then in order to reach those goals, I punch Fear in the face (thank you Jon Acuff !) and then knee Death in the groin! As I look around this group of 10k runners, I see you have done the same thing. It's 37 degrees, damp, rainy, and you have punched Fear in the face and chosen to be successful. You're more successful than 99% of the folks in Glen Allen this morning! 

Look around to you fellow runners. Look to them for inspiration and to motivate them. Help your coaches help you. Today you define your own success! Have a fantastic run! Can I get a 'HOORAH'!?!" 

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This is why I want I want my data to be leaked!

WGarth Callaghan

Let's file this under, "Well, isn't that special?!?" 

One of my oncologists has left his practice. He will no longer be affiliated with Bon Secours. I was aware of this but received a confirmation letter from Bon Secours today. 

Finding a new oncologist is like dating someone new, except without any of the fun. There's a lot of get-togethers, questions, tears, testing the waters, and deliberation. It will take a tremendous amount of my energy to accomplish this highly necessary task. 

Bon Secours was also gracious enough to inform me of the following: 

Under Virginia law, your medical records are the property of Bon Secours Cancer Institute Surgical Oncology where they will be securely maintained. You may obtain a copy of your medical record by completing the attached medical record authorization form and returning it to Bon Secours Cancer Institute Surgical Oncology. Please note that there is a ten dollar ($10) processing fee in addition to copy costs of no more than fifty cents/page. A request for copies of medical records must be made in writing, dated and signed by you or your legal guardian or representative. Bon Secours will accept a facsimile or other copy of the original authorization signed by you or the responsible legal guardian or representative. 

Let me get this straight! Under VA law, my medical records are the property of the hospital. Not only do I have to go through the pain of finding a new oncologist, but I'd have to pay a sizable fee to get a copy of my records. 

For the record, I don't have a large file there. However, all of my oncology records total 183 pages, so far. If they were housed at Bon Secours, I'd pay a whopping $101.50 to get a copy so that I could have the pleasure of schlepping it around from doctor to doctor as I search out a new team. 

When I spoke at the Forbes Medical Conference last month, I made a statement that rocked the audience, at least based on the number of tweets that followed. 

"I want my #data to be leaked. I want to share it & have it be everywhere." 

Thank you, Thomas H. Auer, for your kindness and consideration. Fighting cancer is really an easy job, and dealing with more crap like this is just wonderful. 

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Running Revisited

WGarth Callaghan

I had the honor of speaking to the Richmond 10k Coaches Team last weekend. I shared my hate/hate relationship with running. As I looked around the room, I couldn't help but admire them. Their job is to motivate and inspire their running groups to develop the discipline to practice well enough to finish the 10k. 

I haven't run in quite some time, and I'm not sure if I have it in me to do it under my current circumstances. Heck, there are times I have to rest while walking up a single flight of stairs.  

I was completely surprised when they gave me a coach's jacket and made me an honorary coach!  

Tomorrow morning, I'm going to put on my running shoes and head to Shady Grove YMCA for the 9 o'clock training session. It's the "Walkers" training group.  

You've got to start somewhere.

The most important thing is to actually start.  

Anyone want to join me?  

Garth runs the 10k in 2004

Garth runs the 10k in 2004

Emma's Life Lesson #46 - Stand up for people

WGarth Callaghan

Excerpt from "Napkin Notes: Make Lunch Meaningful, Life Will Follow":

"Appearing throughout this book are little life lessons. They are addressed to Emma. That’s because, instead of writing a chapter on my bucket list, or all the things I want to do before I die. I’ve been creating a Life List for Emma. A list of all the things I want to make sure she experiences in life. The stuff I want her to learn along the way. Some of them are big, some of them are small. But these are the things I want her to know."

Obviously I wish that I wasn’t sharing it in this way.

 

Read More

Uncle Fun

WGarth Callaghan

Uncle Fun passed away a few months ago. Bryan was one of my dad's brothers and he was very close to my family.  As a young child, I used stand at the top of my grandmother's basement stairs and yell down "Hey you guys!" as a personal alarm for him and my Uncle Jimmy. (I was a huge fan of the Electric Company!)

Uncle Bryan always had time for his nieces and nephews. And it's not that he just had the time, he relished in spending time with us. I remember him "fixing" my little stuffed bunny, Goobie. Goobie's ear had come off while visiting my grandmother. It was bedtime and I needed him to be able to fall asleep. I distinctly recall Uncle Bryan pulling one of his mustache whiskers right out from his upper lip and using it to reattach Goobie's ear!  Looking back, I'm sure he was just moistening some thread before threading a needle. But boy was I in awe of his sewing ability back then. I didn't know anyone else that used his own whiskers to rescue stuffed animals!

I played Cup Links (I never had Legos!) with Uncle Bryan. I loved building all sorts of contraptions with him. As I grew older, he stayed with us for quite some time as he and my dad built an extensive addition onto the funeral home. Back then I had an over sized coloring book entitled "The Adventures of CB Rabbit" that we colored together. What a fun uncle!

I've aspired to be my generation's version of Uncle Fun. I have two nephews and a niece. I'm pretty sure the oldest nephew had a remarkably fun time at the Star Wars convention we attended together back in 2010. I think our best time was participating in an incredibly fast paced scavenger hunt. We didn't win, but our enthusiasm was infectious!

I am trying my best to live up to the title with my youngest niece and nephew, Ben and Morgan, who are now 8. It's tough. I live 500 miles from them. We see each other no more than twice a year. And if you take away their "early years" during which they don't have strong memories, I've been batting cancer for half of their lives. I haven't always had the ability to be fun.

I love to chat with Ben about Star Wars and how Jedi craft their Lightsabers. I gave him some special action figures. Morgan and I chat about anything and everything. I loved playing with her in the pool on vacation this summer. She seems to be very tuned in to my disease and shows great concern for my health. That, that breaks my heart.

Distance is my hurdle. I'm committed to somehow breaking through that barrier so they can learn about me as an uncle. Maybe they can even see me as their Uncle Fun someday.

As I was contemplating this writing, my thoughts wandered away from Uncle Fun and toward my other uncles. These men continue to serve as examples of not only great uncles, but also great, loving, and caring fathers. Dad passed away just before my first cancer diagnosis, and I now look to these men. I wonder if I can ever live up to their example.

Thank you.

Uncle Peter

Uncle Harold

Uncle Bob

Uncle Ron

Thank you for your guidance.

 

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A note from Brazil

WGarth Callaghan

I received this fantastic email from a new friend in Brazil this week: 

Dear Garth

I have just been his book, "826 notes of love for Emma" (name of the book in Portuguese), at the moment I have no words to express how much did me good. I can only thank him for sharing his love story with his family. I hope to write more soon.

*Sorry my bad English.

Um grande abraço do Brasil

Bruno Francischini

What a fantastic note to receive in my mail!! 

http://www.amazon.com.br/gp/aw/d/8544101240/ref=mp_s_a_1_1?qid=1417792197&sr=8-1&pi=AC_SX110_SY165 

Sharing

WGarth Callaghan

I was officially diagnosed with cancer three years ago today. I had undergone four scans and the results were solid. I had a 13cm tumor growing on my left kidney. I was scared. I was more scared than I ever had been. I didn't have any idea what to do and I felt as if my life was spiraling out of control. 

I really wanted to gain control over the situation. Even if the results were going to be lousy, they wouldn't be lousy because I sat back and did nothing. 

I started sharing. It was simple at first. I simply said, "I have cancer." 

I immediately started connecting on a different level. I was a cancer patient. I needed help. I needed information. I needed a cure. There was a sense of urgency. I had only three weeks until my first scheduled surgery. What would happen after that? Where would I go and what should I do? 

Along the course of my treatment and growth as a patient, I turned the tables. I didn't even realize it was happening. I started hearing more people say, "I have cancer. I don't know what to do." and I tried to help whenever I could. I needed less guidance and could provide assistance instead. 

Today I am here to share something that is very important to me. I have a potential treatment in front of me that is the only statistically proven treatment to cure kidney cancer. The challenge is that it works less than 10% of the time, much less. I asked my Dr what makes a successful patient? What are the qualities that would allow us to reasonably deduce I might have an 80% chance of success. (On a side note, this treatment is incredibly toxic and death is a common side effect. I really want to know it has a good chance of success before I get on to that table!) 

With a sense of defeat, he replied, "We don't know." 

What?!? This treatment has been around for over 30 years! We don't know what criteria makes a successful patient? That's utterly insane. 

We need to share more medical data. There is no excuse for me having to guess or play pin-the-tail on the donkey with medical choices. 

I am a member of PatientsLikeMe (www.patientslikeme.com) and I am committed to leaving a medical legacy for the next patient. I want to help the next person diagnosed with kidney cancer. 

PatientsLikeMe is kicking off "24 Days of Giving" on December 2, Giving Tuesday. We're encouraging you to donate your time, talent, or treasure to your favorite charity. If you are a patient with a chronic condition, you should also donate your medical data. 

If patients and doctors had donated data over the last 30 years, I might be able to make a better medical choice. 

I use PatientsLikeMe to share my data in the hope that others living with cancer can learn from my experience and help fight their own battles better. When I donate my data to an organization that can aggregate it and see a pattern or meaning, I’m not just helping myself, I’m helping all of the other people who are living with cancer, and their doctors.

Save the next patient. 

My PatientsLikeMe Video. 

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Running

WGarth Callaghan

I think it's safe to say I loathe running. I've been running on and off for thirty years. I don't recall ever feeling a "runner's high." It's more like a "runner's nausea" or "Oh my Lord, I can't believe I haven't vomited, yet!" kind of feeling.

I started running long distances when I was in High School. My school (South Lewis Jr-Sr High) was small enough that boys only had two choices for fall sports: Football or Cross Country running. I never felt comfortable playing football. I felt I was too small and frankly, I didn't want to get hit and knocked down to the ground. I wanted to remain active and stay in shape for my sport of choice in the winter: Ski Team. So, I chose Cross Country and suffered for the entire season.

I ran. I was part of a team. I loved my team. I ran with the greatest bunch of people and I am glad to have had this experience with them. My team often carried me both mentally and spiritually. We motivated each other as much as a bunch of teenagers could. But, I loathed running. No matter how great my team was, they couldn't compensate for my hatred of running. Big Sprints, Hills, and distance training. I hated them all. As I think back, I struggle with coming up with what I hated most. I think I hated them all equally.

I showed up. I never skipped practice. I ran in every single meet. I tried. I ran. I never excelled. I was never going to be a world-class runner. I was in the last of the pack in every single race. Yet, I never felt like a loser. My team, my coach, even my school wouldn't let me think that about myself. No one was ever picked on for coming in last. Not once.

I even continued to run as an adult. I have participated in the Richmond 10k. I have a very competitive spirit but I'll never, ever run fast or finish in the top 50%. I must be broken in the head. Why did I keep doing this to myself?

Admittedly, it's a great way to exercise. I get it. My body generally responds well to this type of exercise. My mind, however, rebels against it. I'd love to be "a runner" but I will never, ever, achieve that status. I'll just be a guy who occasionally runs and hates every single step.

Why did I do this?

My High School Cross Country coach, Mr. Cliff Cranker, once wrote a recommendation letter on my behalf. I wish that I had kept a copy of it. It was kind and very motivational. I'll paraphrase and hope to encompass the spirit of his words.

"Garth will never be a fantastic runner. He shows up. He tries his very best. He doesn't hold back. He motivates his teammates. He never gives less than 100% even though he knows his results won't reflect his efforts."

Running saved my life. If I hadn't been running after my dog, Noel, three years ago, I am certain I would have never experienced my first symptom. I was sick but had no idea that I was in danger. I would have never visited the doctor afterwards. I would have discovered my cancer much later, if at all, and it may have been too late for me.

How many of us have a futile battle ahead? How many of us have seemingly insurmountable obstacles? How many of us would rather choose to throw in the towel? It's easier to not try, especially when the odds are stacked against us.

I'm here to say sometimes the results don't matter. Sometimes it's the struggle and how you approach that struggle that matters most. Don't give up before you take that first step. Don't let your mind talk you out of starting, even though you are staring at the impossible.

Sometimes you don't have to win to be successful.

I'm going to go grab my running shoes. I'll see you on the trails.



 

Clichés

WGarth Callaghan

God never gives you more than you can handle.

Really? Really?!?

I have been diagnosed with cancer four times. I have had two surgeries. I have nine scars across my abdomen. I take medicine that is absolutely destroying my body. Either He thinks I have the strength and tenacity of a superhero or that saying is absolutely wrong. (I'll give you a hint - there are no capes in my wardrobe.)

I have joked about God and Noah. "And God said to Noah, 'Make yourself an ark of gopher wood.'" and then described the dimensions and construction layout for the arc. He was also kind enough to share the fundamental purpose of the arc with Noah. Noah "did all that God commanded him." Did Noah sit around and wonder about this? Did he over analyze it? No. He got to work and built the darned arc with a sense of purpose. We don't know if he had ever even picked up a hammer before this project. He just got to work. Quickly.

Did God give him more than he could handle, or did he push him up to his limits and beyond?

God never gives you more than you can handle.

That's utter BS.

But I never had a good answer, until the other day.

A dear friend of mine, Steve, shared with me something he had learned, and I can't thank him enough. I desperately needed to hear what he had to say.

At a recent Sunday night youth group worship, our youth pastor was talking about Christian cliches, specifically "God won't give you more than you can handle."  And he point-blank, nearly shouted, "That's a lie!! He will ABSOLUTELY give you more than you can handle. The bible is FILLED with stories where people were given more than they could handle!"  

Then more softly he concluded, "but He will never give you more than HE can handle."

Or as Father Dan said, "He has shoulders big enough to handle that."

Thanks, Steve. I really needed to hear that message.

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