We are often asked if we save Emma's napkins. I wish we could. I try. But frankly,Read More
The Napkin Notes Blog
What would happen if you gave a school a lot of pens and a whole bunch of napkins?
Wish me luck. Tonight’s the night. Really, I shouldn’t have been concerned about starting my treatment again. Of course I’d take my meds. It’s what I do.Read More
The One Where Garth and Votrient Take a Break
As much as I wanted to shoehorn in a Ross & Rachel / Friends reference here, I’ll resist.
I am not taking my treatment (chemo) for two weeks. It’s a semi-forced break that my oncologist and wife cooked up. It’s not unwarranted, but I am slightly uncomfortable with not taking my meds.
I haven’t been posting much for the past couple of months. I even had a friend remark to me this week that she hoped I was travelling, but thought that I might not be feeling well.
I have felt pretty yucky since the beginning of March. I have been getting sick 2-3 times per week, and last weekend it was even worse. I was feeling some severe shoulder pain, which is often a precursor to vomiting, about 3 AM on my birthday. I got out of bed and shuffled to the bathroom for some Tylenol. I opened the bottle and shook out three pills. I realized I only needed two, but became very disoriented and the thing I knew, Lissa was standing over me and was asking me if I was ok and if I needed help to get up.
I was pretty beaten up. Both my ego and my body were bruised. I threw up twice after. I managed to get back to bed but it was tough to get up in the morning. I shot a note to my Dr. just to let him know that I had fallen. The office took that fall a lot more seriously than I expected. We suddenly had calls on all of our lines. Lissa was the one who connected. (I was at the gym! Take that, cancer and dizziness!!)
Lissa and the nurse spoke for quite some time. I think they conspired to get me off of treatment, but I won’t blame them. Everyone concluded that I needed to take two weeks off and immediately go to the E.R. if I had another falling episode.
It’s been five days since I took medicine. It’s been three days since my body didn’t have any Votrient running through it. (It generally takes 30 hours for the medicine to flush out.)
I am always looking for a silver lining. Even though my butt and arm really hurt, there are some good things happening.
I haven’t been nauseated for two days! Wow! I forgot what this felt like. I don’t have diarrhea any more, either.
I am hungry. I feel like I have an appetite. The last time I took a break from the meds I gained 10 pounds! It did help that I was on vacation and had plenty of margaritas and shrimp around, but I feel like I can put some weight back on.
I’ll start to feel less fatigued by this weekend. I won’t be as drained as I have been.
I’ll have funky hair! I’ll develop a black streak in a little bit as my hair starts to grow back to black, but then it’ll turn back to white. So, I’ll have two weeks of black growth sandwiched between white!
I’ll feel human for a couple of weeks. (Note that I didn’t say “normal” because there is no way that I want to be normal!)
I think I might actually thank Lissa and my doctor for this.
Have an awesome weekend!
Hi. My name is Garth Callaghan. I am also known as the Napkin Notes Dad. I have metastatic kidney cancer and prostate cancer.
But our story is so much more than my four year battle with cancer.
I am re-introducing myself because I have had some community members taken aback when I mention getting sick or doctor appointments. They didn't know. All they knew was that I write Napkin Notes to my daughter, Emma, each school day.
Also, I had an MRI last Sunday and received the results today. It seems like a good idea to catch everyone up!
The scans came back good. The cancer has not grown or spread. I still have to have daily chemo treatment, but it is working!
My next scan and follow-up will be in 90 days.
Living with cancer is tough, but it's a heck of a lot better than one of the alternatives, right?
There is a distinct possibility that I'll live for the rest of my life with cancer in my body. Again, it's better than one of the alternatives!
I wear Star Wars shirts to each and every single medical appointment I have, no matter how small. You'll see me post a photo and make a comment like, "It's a Star Wars shirt kind of day."
When I was first diagnosed with cancer 4 years ago, I decided then to only wear Star Wars shirts for any medical appointment and made sure that the people treating me understood why I did so. It wasn’t for my love of Star Wars, although that was an added benefit. I wore outlandish Star Wars shirts so that some part of them might recognize me from appointment to appointment.
I am also know as a prolific Napkin Note writer. When my daughter Emma was in kindergarten, I started to write an inspirational note on a napkin and tuck it away in her lunch box. When I was diagnosed with cancer a third time, I worried I may not live to see Emma graduate from high school. But I wanted to continue the napkin note tradition. So I set out to write all of the notes Emma would need to see her through to graduation, just in case. I wrote 826 napkin notes in all. Today they’re stored in a special box for safe keeping.
I still write a new note each morning.
Today has been a good day with welcome medical news.
We have a lot of wonderful people walking with us along this crazy journey. Thank you so much for lifting my family up during this time. We couldn't do this without you.
Pack. Write. Connect.
I am not even embarrassed about throwing up in public anymore.
I think I remember the first time. I was in first or second grade. My school allowed Catholics to leave once a week for off-site religious education. Each Tuesday, one of the nuns would dutifully escort a grade or two at a time down Church Street. We’d walk. The school was only 0.1 mile from St. Martin’s Church. We’d have our religious ed time in the church basement and then head back to school.
I remember not feeling well one Tuesday in winter. I told Sister Mary Agnes my stomach hurt. Sister Mary Agnes was a tough as nails nun. She didn’t smile a lot. She didn’t really listen to me despite my pleas. I managed to get through the rest of the class, but on the walk back to school, it happened.
Whatever was in my stomach was coming out and there was nothing I could do to stop it. And it was right in front of one of my best friend’s, Scott Carpenter, house. It was winter. To make matters worse, I could only imagine my throw up being frozen to the ground for months ahead, in front of my best friend’s house. Sheesh!
It’s happened more than a few times since I started treatment two years ago. I don’t have much warning. If I am lucky, I have about 30 seconds to find a bathroom or a trashcan.
Monday was another first for me.
I started working out about a month ago. I haven’t shared this here. I wanted it to be a surprise once I hit my goals. I am lifting weights with a few goals in mind: 1) stop my weight loss; 2) rebuild stamina and energy; and 3) stop feeling sick and tired. I plan on gaining 10 pounds of lean muscle. In order to do that, I also have to increase my daily caloric intake by 500 kcals a day. That is the most difficult part of this project.
Mom questioned whether or not I should be working out. My response was simple, “What’s the worst that could happen? My pallbearers will have to work a bit harder!”
Monday was a normal gym day. I had spent all day in bed Sunday because I had thrown up twice first thing in the morning. I have actually had a really rough two weeks. But I made a commitment to be in the gym Mondays, Wednesdays and Fridays. I wasn’t going to miss it.
I was working out my upper body. I was about 80% finished and I started to feel weird. Yup, that kind of weird. I stepped away from the machine I was using and paced a bit. I was nervously looking for the closest trashcan. I knew I couldn’t make it to the bathroom.
My stomach was emptied. In the middle of the gym. And I wasn’t one bit embarrassed. I wasn’t happy, but I wasn’t embarrassed.
Someone handed me a few paper towels. I cleaned myself up and let someone know what happened.
And do you know what I did then?
I finished my damn workout because a little bit of throw up wasn’t going to get me off track.
Thank you for being part of our journey.
Pack. Write. Connect.
Do you have a question you'd love to ask Garth? Emma will interview Garth live (using either Facebook or Google Hangouts) in the next couple of weeks.
But, we need your help! What should Emma ask???
Submit your question here and we'll pick at least 20 community submitted questions!
Pack. Write. Connect.
It was incredible for Emma and me to sit down and speak with Luke Tyson, a local reporter with Scholastic News Kids Press Corps. Please read his article here:
Luke Tyson is from Virginia and was born in 2001.
- Luke volunteers for two local community organizations, the SPCA and Beds for Kids.
- His favorite book is Paper Towns by John Green.
- Luke is studying French and Spanish, and he likes to play ping-pong in his spare time.
Luke can be found on twitter: @luke_tyson0
Two years ago today, my friend Alex Sheen, shared our story for the first time. He wrote:
“What does high risk mean?” Garth asked. His oncologist looked him in the eyes and responded... “You are going to die of this.” Garth is 44 years old and has been diagnosed with cancer three times since November 2011. Prostate cancer once. Kidney cancer twice. Although he appears healthy today, statistics say he has an 8% chance of living past 5 years.
Garth has one daughter named Emma. He has been writing napkin notes for Emma’s lunch box since she was in the second grade. They are just a few words of encouragement, but in the busyness of their separate days at work and school, it’s a moment when they can connect. It’s a moment when Garth knows she is thinking about him.
Garth may die, but he will not let Emma eat lunch without that note. This is his promise to write one napkin note for every day of class Emma has until she graduates from high school. To date, he has completed 740 notes. 86 to go.
Here's a two-year update from Garth:
Medical: I was diagnosed with cancer one more time, in Feb of 2014. That one was a doozy. I had 5-6 metastasis on my liver, and one growth on my remaining adrenal glad. I have been in treatment (think daily "chemo") since then. It's hard, but I will do what I have to do to fight another day!
Napkin Notes: I finished the remaining 86 notes right after that post. It was easy. The notes are in a box for safekeeping. I take them out from time to time when a reporter wants to see them. Emma gets a new, fresh note every day. My goal is to present her with the Napkin Note box for her high school graduation in 2 1/2 years.
Alex's post was the one which launched our story worldwide. I am incredibly thankful for the opportunity to talk to parents from around the world about the importance of writing notes to their children.
Thank you for walking on this journey with us.
Pack. Write. Connect.
People often ask me what's my favorite napkin note. My answer sometimes surprises them. We estimate that I've written somewhere around 4,000 notes at this point. Some of them really stand out. Personally, I am motivated by many of the quotes I've used. I am partial to two:
"If you can't feed a hundred people, then feed just one." - Mother Theresa
"Risk something or forever sit on your dreams." - Herb BrooksRead More
Christmas was approaching. Another Christmas overshadowed by cancer. Plus, this year, the medical bills were really piling up. I kept getting diagnosed with cancer and there wasn't any end in sight. Paying the mortgage was a struggle. I looked around my home office and saw things. Some were very special. Yes, I might even say I loved having them. I saw tons of Star Wars figures. I saw limited edition Star Wars Legos, a Boba Fett Limited Edition (1 of 250!) Figure, my Sony PSP that I purchased on its release date (I was the first person in line!), a laptop, and my iPad. I sold them all. I didn't think twice. Things are things. I was able to pay the mortgage, buy a few Christmas presents, and took care of some bills. I didn’t think about what January would look like.
Months later, a large box of Star Wars toys appeared on my doorstep from someone that I was proud to call a friend. I was brought to tears. I had no idea how or why, but Alex wanted to help replace a piece of my life. I unpacked the box and replaced the holes on my shelves. But, something didn’t feel quite right. Those Star Wars toys weren’t mine. Over the next couple of years, I decided that I was the toys’ steward. They were in my care, but they didn’t belong to me. I needed to find them a home.
I had tried to visit various hospitals locally over the past couple of years. None seemed eager to have a Jedi walk through their halls handing out toys. It was incredibly frustrating! I really wanted to help out some kids that would need a bit of light during December.
And along came St. Joseph’s Villa, a place where children with special needs can thrive. I was overcome with emotion. The kids were a source of never ending questions ranging from writing to the inner workings of my lightsaber. Quite a few tears were shed. I can’t count how many times I heard, “This is the best day of my life” uttered. I was genuinely surprised at the excitement over an old Jedi and his Star Wars toys.
“My” Star Wars toys are home.
*** RESULTS ***
A successful Dr visit. Although I don't have the copy of my scans in hand, the Dr told us that there is no change. That's a good thing.
We discussed the fact that this treatment doesn't "cure" cancer (but it sure has worked wonders in my body!!) and that we need to make sure that there are plans b, c, d, etc. There are many new drugs that are potentially available to fight metastatic kidney cancer.
I was referred to a nutritionist for some dietary counseling. My Dr and wife are conspiring to make me eat!! Admittedly, I have continued to shed weight. I am not consuming enough nutrients and fuel. (I've lost 8 pounds since my last visit, about 45 since I started treatment.) The nutritionist gave us some great tips on how to avoid nauseating smells and get more bites of food into my body.
We also discussed side effects and how difficult it was to manage them. I don't think we have a good solution. I honestly don't think there is a good solution at this point. However, if they get severe enough, I have permission to take a short break from treatment to try and reset things.
Overall, we're in a good place medically. I'd love to be able to say that I am coming off of treatment, but realistically, that's not in the cards. Not now. Probably not until it stops working, then we have other things to be thinking about anyway.
Thank you all for walking with us on this journey. We are grateful for each and every person lifting us up!
We adopted this wonderful “rescue dog” five years ago. I am convinced that Noël helped to save my life. I doubt I would have shown any symptoms of kidney cancer without this event. Four years ago, on Dec 20, 2011, I underwent surgery and had a radical nephrectomy. The surgeon also removed a 13cm tumor. Yikes!
From Napkin Notes – Chapter 2
I lost sight of her again. I was running, but she was faster. I had to stay on the path, but she was darting through the trees and the underbrush. I could not keep up. The path was too twisted and uneven. I was running up, down, left, and right on the dirt. The afternoon sun was beating down on me through the golden and red leaves. My wife and neighbors were well behind me, but we were all yelling her name. I was doing my best to run ahead, but I was already short of breath. I was scared. She hadn’t been on her own like this, with so much freedom. I had to keep her within eyesight.
We were camping, an activity I didn’t particularly enjoy. On a hike with our friends, our dog Noël had dashed off in pursuit of something and was nowhere to be seen. We had rescued her less than a year before. Noël had been in a local pet shelter for fifty-nine days. This nearby county shelter was not a “no kill” shelter, and after sixty days, the animals were euthanized. She was saved from that fate by FLAG (For the Love of Animals in Goochland), a local animal rescue group. Noël barely looked like a dog when we met her. She was just fur and bones. The fur she did have was patchy and sparse.
Noël had clearly been on her own for some time. She was skittish around most ¬people and appeared to be deathly afraid of me. Lissa and Emma were certain: Noël was the dog we had to save.
I didn’t want a new dog in our home. Lucy was my dog. I had chosen her and loved my German Shepherd–Rottweiler mix for thirteen years. Lucy had died just four months before Lissa and Emma ambushed me with rescue dog pictures. I was still grieving and didn’t want to have room in my heart for another pet.
I continued running even though my lungs felt like they might explode. Bailey, the neighbors’ golden retriever, was keeping up with Noël, and I could just see a yellow ball of fur up ahead. All I could hope was that Noël wasn’t that far in front of her.
Finally, I saw the dogs slow, some smell halting their joy run. I was able to catch up and put the leash back on Noël. I let out a huge sigh of relief, thankful that the rest of our weekend wouldn’t be spent wandering the wilderness, hoping to somehow bring Noël home.
Our neighbors, Mike and Sheryl Bourdeau, had invited us camping, one last getaway before the cold of autumn set in. At least it was camping in a cabin and not in tents. I could handle staying in a cabin much easier than sleeping on the ground. We were celebrating Sheryl’s birthday, and that night Mike had a fantastic dinner of steaks planned. We toasted the birthday girl with red wine and ate gourmet cupcakes. We played games and thoroughly enjoyed one another’s company. The evening came to a close too quickly. As I was preparing for bed, I needed to use the bathroom. As I stood peeing, I watched in shock. My urine was sangria red.
I couldn’t begin to think what was causing this. There was no pain. There was no other indication that something was wrong with me. I commenced freaking out
I think that it’s safe to say that many men loathe shaving each morning, and “No Shave November” is a perfect excuse for men to forgo this morning ritual. Although social media has helped to explode this concept in the past few years, this ritual has its roots in 2003, when 30 Australians decided to raise awareness of men’s cancer issues, prostate cancer and testicular cancer.
Although I admire the cause, I can’t help but feel that most of my friends and colleagues who skip shaving for these 30 days don’t really get much out of it except for talking about their manly beards. This doesn’t really help the fundamental cause and the cancer issues that face us men. I hate shaving, and I think that my face is better suited to sporting a goatee than smooth skin. I however, will not be participating in Movember this year, and I’d like you to think about some other things that could make a bigger impact in your world.
Here is a list of things that you can actively do for Movember:
1. Check yourself – If we fundamentally look at Movember, we’re trying to protect guys from prostate and testicular cancer. Do you know the signs and risk factors? Do you know how to self-examine? Let’s start with raising awareness at home. Fathers, testicular cancer is the most common cancer in young men between 15 and 35. It is also highly treatable when found early! Have you talked about this with your sons? Prostate cancer is typically diagnosed in older men, and there is a 1 in 6 chance that you’ll be impacted by this disease. As you reach your 40’s, you need to start talking with your health care providers. Again, this cancer is highly treatable when found early!
2. Make or buy dinner – Do you know someone that is going through cancer treatments right now? Make them a healthy dinner, or go buy dinner from a nice restaurant and bring it home to them. Cancer Patients (I prefer the term Cancer Warriors) have a lot to manage each day. Dinner is important both from a nutritional perspective and a family time perspective. Help ease their daily burden just once and provide dinner.
3. Rake leaves – It is fall in much of the country. If you know someone with cancer, grab a couple of buddies, some rakes and yard bags, and go to your friend’s home. Unannounced. Clean up the yard and take away the leaves. It's even better to do this if your friend isn't at home. Don’t take credit. Just do it. Your cancer warrior friend has bigger battles ahead than dealing with their fallen leaves.
“There is no limit to the good that you can do if you don’t care who gets the credit.” – Gen George C. Marshall
4. Donate $30 to the ACS – The American Cancer Society is the "Official Sponsor of Birthdays". Their mission is to help fight cancer in every way possible. They help patients, caregivers, and researchers. Take $1 for each day that you would not shave and send it to the American Cancer Society. They are a fantastic organization. They help cancer research for all body parts, too!
5. Don’t Ask, Just Do – Anything, really. Do you have an idea to help a Cancer Warrior? Act now. Just do it. Above all, don’t say to them, “Let me know if you need anything.” This puts the burden back on to the Cancer Warrior. There is a lot to manage in their lives, and frankly, it’s easier for that person to shrink away from letting you know how completely overwhelmed they feel. They need help with everything during treatment.
6. Help the caregiver – Take the caregiver out for coffee, or a movie. The caregiver is stressed, too. The caregiver needs a little break. Help them step out of this situation for just a little while. Listen. Show compassion. Be a friend.
7. Shave – Really, we don't look all that good with uncontrolled facial hair.
There are many ways to prove your manhood. Growing a beard for 30 days is passive.
November 5, 2011
Although I had been writing Napkin Notes for many years, November 5, 2011 was the date Napkin Notes took on a new meaning. It was the day my life changed. Looking back, I might even be tempted to say that my life changed for the better in many ways.
Here's an excerpt from Napkin Notes:
CHAPTER 2: Sangria Red
“If God sends you down a stony path, may he give you strong shoes.” Irish saying
I lost sight of her again. I was running but she was faster. I had to stay on the path, but she was darting through the trees and the underbrush. I could not keep up. The path was too twisted and uneven. I was running up, down, left and right on the dirt. The afternoon sun was beating down on me through the golden and red leaves. My wife and neighbors were well behind me, but we were all yelling her name. I was doing my best to run ahead but I was already short of breath. I was scared. She hadn't been on her own like this, with so much freedom. I had to keep her within eyesight.
We were camping, an activity I didn't particularly enjoy. On a hike with our friends, our dog Noel had dashed off in pursuit of something and was nowhere to be seen. We had rescued her less than a year before. Noel had been in a local pet shelter for 59 days. This nearby county shelter was not a "no kill" shelter and after 60 days, the animals were euthanized. She was saved from that fate by F.L.A.G. (For the Love of Animals in Goochland), a local animal rescue group. Noel barely looked like a dog when we met her. She was just fur and bones. The fur that she did have was patchy and sparse.
Noel had clearly been on her own for some time. She was skittish around most people and appeared to be deathly afraid of me. Lissa and Emma were certain. Noel was the dog that we had to save.
I didn't want a new dog in our home. Lucy was my dog. I had chosen her and loved my German Shepherd - Rottweiler mix for thirteen years. Lucy had died just four months before Lissa and Emma ambushed me with rescue dog pictures. I was still grieving and didn't want to have room in my heart for another pet.
I continued running even though my lungs felt like they might explode. Bailey, the neighbors' Golden Retriever, was keeping up with Noel and I could just see a yellow ball of fur up ahead. All I could hope was that Noel wasn't that far in front of her.
Finally I saw the dogs slow, some smell halting their joy run. I was able to catch up and put the leash back on Noel. I let out a huge sigh of relief, thankful that the rest of our weekend wouldn't be spent wandering the wilderness, hoping to somehow bring Noel home.
Our neighbors, Mike and Cheryl Bourdeau, had invited us camping, one last getaway before the cold of autumn set in. At least it was camping in a cabin and not in tents. I could handle staying in a cabin much easier than sleeping on the ground. We were celebrating Cheryl's birthday and that night Mike had a fantastic dinner of steaks planned. We toasted the birthday girl with red wine and ate gourmet cupcakes. We played games and thoroughly enjoyed each other’s company. The evening came to a close too quickly. As I was preparing for bed, I needed to use the bathroom. As I stood peeing, I watched in shock. My urine was sangria red.
I couldn't begin to think what was causing this. There was no pain. There was no other indication that something was wrong with me.
I commenced freaking out.
I found Lissa and told her what had happened. I grabbed my phone and tried to look up potential causes. There was hardly any signal. I stepped out on to the cabin porch, held my phone above my head and tilted it at just the right angle to get some data signal. Blood in your urine was called gross hematuria. I read through potential causes. At the end of a very scary list were two causes Lissa and I hoped could be the answer: vigorous exercise and an excessive amount of beets. Not only had I been running earlier, trying to catch Noel, an activity that isn't a normal part of my routine, but Cheryl's birthday treats involved a Red Velvet Cupcake from a gourmet shop. Though I never would have guessed, Lissa suggested that the shop might have used concentrated beet juice to color the cupcake. We calmed ourselves down, enough to sleep, hoping that it was a freak occurrence and not something to truly worry about.
It would take another three weeks to verify I had a 13 cm (grapefruit sized) tumor enveloping my left kidney. I would have surgery on December 20. I would come home on December 22 and start a new part of my life: Cancer Warrior.
Family Picture taken on November 5, 2011.
So, it's come to this, I thought to myself...
I sat in the doctor's office and was having a three-way discussion regarding side effects. I seemed to have been slipping back into a disturbing pattern. I was getting pretty sick more and more frequently. I had high hopes as we started summer. We adjusted my meds down, and I stopped getting sick. I felt more human. It didn't last.
We came up with a good plan. I'd proactively take some anti-nausea meds a few days before my "scheduled" throw up days. Maybe that would push off that side effect.
As my wife, the doctor, and I wrapped up the conversation, I started to get ready to leave. I thought we were ready to go.
I head Lissa ask, "Oh, and do you think we could get a Handicap Parking Permit for Garth?"
What?!? I am not handicapped! Yes, there are days that the fatigue wins, and walking can be tiring. There are many days that I kick the fatigue's butt and I feel like I could run a race. I do not see myself needing a special parking permit. Well, not on most days, anyway.
So, it's come to this...
The paperwork was ready before we left the office. The DMV visit was uneventful, and a few days later I received my permit. I leave it in my truck, just in case. You never know when it might be useful.
So, it's come to this...
I look at that permit each time I drive somewhere. I see it as another challenge. Can I choose to NOT use it this day? Can I beat this? Can I choose to be stronger than this sickness?
Damn straight I can.
Garth remembers some of his time in Germany.
Hat tip to Alex Kulle, Thomas Rodeck, and Craig Parsons. I am sure you never expected this picture to make it to the internet!
I had an MRI last week and got my results a couple of days ago. I quickly shared the news with my wife, Lissa. I told Emma once she returned from school. I dutifully shared the news with my mom and sister. I shared the news with my close friend and neighbor, Sheryl.
The liver demonstrates the small 6 mm hypointensity in segment 6 (series 16 image 17). This is unchanged from previous examination.Read More
I'm at St Mary's for an MRI. I have two thoughts in my head this morning:
1) The Napkin Note post will be late today. I'm sorry. I did write it, but had to get here early and didn't have time to post.
2) Why is it that I don't know how much my MRI will cost until after I get the bill?!? Is there any other good or service that Americans purchase without having a concrete idea of the cost?
I am so proud of the young woman you have become! You're smart, compassionate, witty, and athletic. Good luck, sophomore! You've got this!!
Pack. Write. Connect.