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Garth Callaghan

Napkin Notes Dad

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The Napkin Notes Blog

10 Words or Less

WGarth Callaghan

It's hard to imagine that after all of the sales at Staples, Target, and WalMart, it is really time to think about heading back to school! In fact, I was reminded of this on Monday when I saw a news story about students in Lousia County. It was their first day of school on August 10! Holy Cow!!

Sometimes staring at a blank napkin at 5:30 in the morning and coming up with something to write is a daunting task. I know. I've written about 4000 napkins and even I get writer's block from time to time.

Here's the catch - your child doesn't care how eloquent your note is.

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"Hands Free Life" Book Review

WGarth Callaghan

I was honored to be asked to review a copy of "Hands Free Life" by Rachel Macy Stafford (Hands Free Mama) earlier this year.

It took one day. I only could allow one day to read "Hands Free Life: Nine Habits for Overcoming Distraction, Living Better, and Loving More". I was busy being a dad, a husband, and cancer patient. I knew I was distracted, but there was a purpose. I was on a mission and I acknowledged my limited time left. As I settled in to read Rachel's words, my heart stayed in my throat the entire journey. She gets it. She knows we're distracted and it's not just the amount of screens we have in our lives. It's our incredibly complex, crazy, and somewhat out of control lives.  

Rachel Macy Stafford will help you reconnect and build strong relationships. Even if you make a moderate amount of effort, your family will thank you for strengthening your relationships! Once again, I owe Rachel a big "Thank You" for bringing relationships and family to the forefront of everyone's minds.


The book is coming out next month. Pre-order a copy today!

Amazon: goo.gl/VzD6xZ
Barnes & Noble: goo.gl/KBavt4
Indie Bookstores: goo.gl/qwd7X7

Six Words Revisited

WGarth Callaghan

I sat at my desk with tears running down my cheeks. Although my spirit has been battle hardened, there are a handful of things that can still bring me to tears today. I was reading an email from Karen Schwartzkopf, the editor of Richmond Family Magazine. She had chosen which except from my book, Napkin Notes, to use in the June edition for the DadZone column.

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Which Doctors

WGarth Callaghan

I've started my fifteenth month of treatment. I'd have to say at this point it's not really treatment anymore. It's prevention. What we see isn't getting any smaller. It's not growing or spreading. It's stable.

The question remains, "Am I going to be healed, or is this as good as it gets?" Am I just waiting for inevitable spread which would eventually harm me beyond repair?

There are a handful of viable treatments I could try. There are even some things that aren't quite yet approved, but worth getting my hands on.

My course really depends on which doctor I want to believe. In which doctor do I put my trust?

One doctor had a frank conversation with me just a few months ago. He stated that the median lifespan of someone in my condition is about 12 months. We could give ourselves a +4 since we're using Votrient, my current treatment. So, 16 months. My metastatic diagnosis started in Feb 2014, if we're using the best case scenario dates. This doctor didn't even want to talk about a 3-year lifespan until we were able to effectively deal with the cancer we could see. He also gave me a 100% chance of having kidney cancer cells floating around my body. A dangerous situation.

One doctor thinks I am doing well. If he didn't know I had cancer in my medical history, he might overlook the lesions on my MRI. He thinks I should consider lowering my Votrient dosage to increase my quality of life. I might even want to consider reducing my dosage to zero.

Most of my doctors won't consider a different treatment path until we see growth or spread. I should keep taking the Votrient until it stops working. (And it will stop working.) Once we see material growth or spread, we can consider an alternative.

Waiting seems incredible passive to me.

I also know that each day with Votrient is generally not a fun day. I can tolerate the meds some days. No days are "great" and most days are below average. Some are utterly awful. I really don't know how much longer I have it in me to keep taking this drug. I also think it's keeping the cancer from growing and spreading, but that's it.

A friend shared his thoughts on this with me last week. "Stable is dying." I immediately knew what he meant. I am driving down a road. I have no brakes. There is a cliff in the distance. But I am stable. Everything is ok today.

Stable means dying.

Here's what I plan on doing:

Genomics - I am having my cancer's genome sequenced. There's a small chance we could see something that would help direct my best path for treatment.

PD-1 or PDL-1 - "Programmed cell death protein 1"  Now that's the way to label a treatment! This treatment is mostly in late-stage trials, but a few were approved for use in the U.S. in the last 6 months. I just need to find a doctor that will get me in the program. We'd need to see if I can take both treatments concurrently.

Vaccine - The University of New Mexico currently has a Phase 3 trial testing a personalized vaccine for metastatic kidney cancer.

Wow. That's some cool stuff.

Which Doctor?

I guess whichever one wants to sign up to treat me. Any takers? Call me.

 

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.

 

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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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