The Napkin Notes Blog
Most days I don't have any idea how my body is responding to cancer treatment. Sure, I know all too well the side effects that are brought on from the meds, but I truly haven't the faintest idea if the meds are working or not.
I have a competitive spirit. I love to win. I don't play for the fun of it. I expect to see results in this fight. My oncologist has tried to temper my expectations. "This is an ultra-marathon, not a sprint."
Each day I take 4 pills.
Most days I wait for a sign that won't come.
But every 9 weeks and six days, I get a report. This report is full of medical jargon. I read it word for word. I don't think I could write the report, but I can interpret it and I know what the words mean. I am looking for something like, "There has been significant improvement" or "no longer evident".
My summer MRI showed a "slight decrease" in the two lesions. It was definitely not the report that I wanted nor expected. (Previous Post) After such marked improvement in the first phase of the treatment, I was devastated.
My last MRI was a few days ago. I sat with one of my doctors a couple of days later. However, I already had a copy of the report. I had already cried. I stood in the other room and didn't know how I could take a few steps to my wife, Lissa, and tell her these results.
"...has not significantly changed since the previous examination."
I needed a few moments to absorb this information. Once I finished drying my face, I thanked God. The cancer hadn't grown. It hadn't spread. This was good news, just not the news I needed or wanted.
So, the fight continues. Thursday was not unlike most of my Thursdays since February. I ate dinner, waited two hours, and took my meds. An hour later I ate a snack and promptly fell asleep. I was tired.
I am tired. I know that fatigue has set in as a side effect, but the length of this fight has also worn me down. I'm going to bed most days shortly after dinner. I struggle to get up in time to make Emma's lunch.
My medical team has suggested a short break from the meds every three weeks. I'll take the meds for 18 days then take a 3 day break. Guess what! This is my break week. Man, I need it. I need a little respite from the side effects.
Tomorrow is a new day, a day that I'll be ready for battle.
Next Update: 9 weeks, 6 days.
With the new day comes new strength and new thoughts. ~Eleanor Roosevelt
I’ve seen peaks and valleys this past week. I’m remembering events from a year ago. It was an anniversary week of sorts. During this week last year, the Richmond Times Dispatch ran an article about Napkin Notes. It was the first time our story had been shared in a broad way. It was really exciting. Readers around central Virginia learned about my passion for Napkin Notes and my parenting style. Emma had a couple of softball games that afternoon. It was a great day.
Five days later I received a phone call from Dr. Bradford. Unfortunately, the scan I had a few days earlier showed a growth on my adrenal gland. We didn’t botherRead More
Rocket 4 The Cure Update
I just received an email from the team! They received over $1000 in sponsorships yesterday. It was their best day ever!!
From the bottom of my heart, thank you. You helped these two boys make a difference and realize that actions can make a difference. Doing something is important.
If you're seeing this post and wondering what I'm talking about, please click here to see where it started:
I want to be upfront and transparent with you. I am not a big fan of the Susan G. Komen Foundation. The "pinkification" of cancer isn't something I support. Cancer isn't as simple as a color. (You'll see why this matters in a bit.)
My cancer "colors" aren't pink. Frankly, I don't even know what color ribbon I should have. Do I mix the two? Do I just show off two? Does my cancer color even matter?
I was introduced to a pretty awesome story the other day. There are a couple of high school kids that will break the Guinness Book of World Records for the most rockets simultaneously launched. I am taking their words directly from their website:
We created Rocket4theCure to raise money for the battle against breast cancer.
And we'd like to break a world record while we're at it.
That's freaking awesome! Dylan's mom was diagnosed with breast cancer a few years ago. This is his way of supporting his mom and other breast cancer patients, and I love it! Sanzio is his good friend and loves rockets. The two of them will be unstoppable!
Why is this story resonating with me? These guys are doing something. They woke up and decided to help someone, somehow, in a way they could. This project will support the Susan G. Komen Foundation and I am supporting them wholeheartedly.
"We can't help everyone, but everyone can help someone." - Ronald Reagan
This is how I am going to ask you to help these two cool guys.
1) Like their Facebook page: https://www.facebook.com/rocket4thecure (That's the easy one, right?)
2) Share this story on your own social media sites. (I know this is a little out there, but this is how word gets out.)
3) Sponsor a rocket. It's $10. (Yeah, I know. But I am really asking. I wouldn't ask you to do something I wouldn't do myself. I just sponsored two for $20.) Click here to sponsor a rocket. http://rocket4thecure.org/sponsor-a-rocket/
I am really asking you for your help. Spread this story. Help these two guys. Why? Because they are doing something and if we support them, others will be encouraged to do something, too.
Napkin Notes: Make Lunch Meaningful, Life Will Follow
It's real. I have been reluctant to share this part of my journey because it seemed so unbelievable. However, I have been paging through my advance copy. It's real. I can hold it in my hands. I can sense the weight of the paper, and turn the pages. I can read my words.
On Feb 26, I met with a team at HarperCollins. They were interested in hearing my story. I was hoping and praying for the time to be able to tell it. Little did they know I was going to drop a small bombshell when we started. "I have cancer again. It's my fourth diagnosis. We have a plan, but let's face it, statistically, patients like me have an 8% 5-year survival rate."
The meeting paused. Someone picked up the phone and called Memorial Sloan Kettering, the country's best kidney cancer center. HarperCollins showed me that they cared about me as a person first.
I did go to MSK a couple of weeks later. I was able to confirm a treatment plan. But that's not what this part of the story is about.
I was deeply touched by the concerned actions of the team at HarperCollins. They saw me as a person. They were interested in our story. I was interested in sharing it. We went about working on this project. I was committed to finishing as quick as possible. After all, I have Stage IV kidney cancer. I am well aware of time passing. I wanted to see this project to completion.
We went to work. I'll be frank. It was harder than I thought it would be. I am a positive and happy man today, but writing about telling Emma I had cancer for the first time was nearly impossible. I had to dredge up memories that we're pushed into the back of my mind. It was gut wrenching and painful. The first year or so after that initial diagnosis was dark. Writing about it was a challenge. (and oh, by the way, I was in treatment, fighting nausea, fatigue, etc. It wasn't the best environment for storytelling!)
We turned in the first draft in early June and I still didn't share that here. Why? It wasn't 'real' to me yet. It became real when I opened up my copies just a few days ago. It became real when I saw it up on Amazon and Barnes & Noble. Crazy, right?
Last week I found out that the book will be translated into complex Chinese and sold in China. That's the latest in the list that includes Brazil, Portugal, The Netherlands, Mozambique, Angola, South Korea, and Germany. Crazy, right?
Lissa, Emma, and I are literally walking around our home wondering how we have become so blessed.
I hope the story will do two things:
- Inspire parents (& everyone else, too!) to write notes on a regular basis. I believe in my heart this will make a difference in any relationship
- Inspire cancer patients to fight like hell. It's a battle against something that doesn't fight fairly and we need strength and support
If you know someone that could use some inspiration in their life, please click here.
Last February I wrote out a bucket list. It had 36 items. I taped a copy of it to my home office window, posted it here, and basically was sharing it with the world. I did this for a few reasons. I wanted to publicly state that these items were important to me and that I was going to make them come true, one by one. I also wanted others to think about their own bucket lists, to create them and then follow through. Create action. Make a change. Do.
A funny thing happened once I made my list. (Here's the original post.) I actually started to check off some of the items. In many cases, others stepped up to help. I am eternally thankful. Today I am happy to check off one more item.
2. Own a pub in Ireland and pour pints of Guinness for my friends
I'm thrilled! We're going to Ireland! (Everyone named Callaghan should visit the homeland at least once!) We're taking a break from "real life" next April and going to explore our heritage. Even more importantly, a dear friend of mine, Molly, has arranged for me to become an honorary pub owner along the way! You'll have to be patient as you wait the 119.5 seconds for the pints of Guinness to settle.
One of my bucket list items will be crossed off in about 7 months. Well, that is, if I have friends to pour for! Lissa and Emma are coming with me. Colleen, my sister, will tag along, too. I think Molly is planning to travel with us and a high school friend, Dawn, will be there. The trip has space for about 47 people, and there are a dozen spots left. I am extending an open invitation to my friends. If you have always wanted to travel to Ireland, I'd love to meet you there! This is a true invitation. I value the relationships in my life more than anything else.
If you're interested, you can take a gander here: Ireland Trip
I have never poured Guinness from a tap. I have a lot of practice ahead!
PS - For everyone out there fighting cancer or any long term health battle, making long term plans is an incredibly important commitment. Plan for a future. Fight. Live!
Emma was challenged by some friends and her dad.
We hereby challenge ALL of the Napkin Notes Community to donate either time or money to a favorite charity! Please, DO something. Don't let her cold head go to waste!
I accepted the ALS Challenge from Alex Sheen, the founder of Because I said I would.
I hereby challenge ALL of the Napkin Notes Community to donate either time or money to a favorite charity! Please, DO something. Don't let my cold head go to waste!
That’s really the crux of it. It wasn’t my plan. My plan was to be cancer free. I had such high expectations and I didn’t even come close. I wanted to lower my treatment dosage so I can feel human again.
It has been a humbling day.Read More
A few days ago, I posed a question. Do you have a Will? I wanted some honest feedback and wasn’t judging. Most of the responses were that the person had a Will. Based on my limited experience, I sense that many of those without a Will were silent.
I’ve been working on a project with a new colleague and friend, Cindy DiTiberio. It’s safe to say that Cindy knows me inside and out due to our work on this project. She knows both the public and the private Garth. She stunned me with a question the other day and I have been contemplating it ever since she asked.
Lissa and I had been working with a lawyer, Sharon Ten, and preparing a lot of documents. All of these documents were what you’d consider “end of life” documents. We worked on a Will, Power of Attorney, Advanced Medical Directives, and a Trust. I am ashamed to say I have never had a Will drawn up. Yes, I have been battling cancer since 2011 and didn’t have a Will. Not only that, I have had a child for over 14 years and didn’t have a Will!
Cindy asked, “How do you balance preparing to die with the fact that you're doing everything you can to live?”
Well! Huh! Crud!
Living. Fighting. Staying Positive.
Preparing for death. The end.
They aren’t contradictory. In fact, they are hardly related.
I’ve made it pretty clear that fighting is an important aspect of my life. Heck, if I weren’t fighting, you probably wouldn’t be reading this. I shared something with one of my nurses last week. I told her I firmly believed I was exactly where I was supposed to be. I was on a path that I didn’t choose, but it held great importance to me. Part of my purpose is to be the most enthusiastic and positive cancer patient I can be.
I wake up every morning and choose to be positive.
It is a choice.
I grew up in a Funeral Director’s family. My dad owned the Callaghan Funeral Home. My maternal grandfather, Papa, owned the Keough & Son Funeral Home. Both Papa and my Uncle Ron ran that business. My cousin, Brendan, now co-owns the Butler-Keough Funeral Home in the same town. Our family has been helping others with death and dying for over 80 years.
Death is an inevitable point in everyone’s life. Last I checked, we have a 100% chance of dying. We usually just don’t know the timing.
Even though it took a kick in the pants, I chose to prepare. My dad, ironically, didn’t. His Will was 40 years old when he died a few years ago. I am happy to say that we think we have done our best to legally protect the family in the event that one of us dies.
“How do you balance preparing to die with the fact that you're doing everything you can to live?”
I will die, someday. Let’s hope and pray it’s far into the future. In the meantime, I’ll fight like hell to beat this cancer.
"You beat cancer by how you live, why you live and in the manner in which you live." – Stuart Scott
Special thanks to Sharon Ten and the law firm of Bowen Ten Cardani, PC. They made the process easier than I expected and were incredibly thorough.
Again, thank you all for walking on this journey with me. I couldn’t do it alone.
Welcome to the first ever guest Napkin Notes post! I am incredibly pleased to introduce you to Ariane Grabill, mother of Aiden Grabill.
I “knew of” Ariane from my time working around Circuit City, but I never really “knew” her. It wasn’t until I received a cryptic post on Facebook last June from a friend, Stacia Flinn Alexander. The post simply asked, “Hey Garth, do you know the answer to this one? Hope all is well!" I was tagged on a question by Ariane, "Richmond peeps. Any idea where someone would go to hire a darth vader for a birthday party?"Read More
From Oliver, the musical:
Food Glorious Food
Is it worth the waiting for?
If we live 'til eighty four
All we ever get is gru...el!
Ev'ry day we say our prayer --
Will they change the bill of fare?
One of my biggest challenges while undergoing cancer treatment is something many of us take for granted: eating.
I have no desire to eat. The medicine suppresses my appetite. The medicine has altered my taste buds and most of the food I could eat tastes like wet cardboard. (Well, I am guessing. I am NOT a wet cardboard gourmet!) I used to love to eat spicy foods. I would eat at Thai restaurants and would shake my head when the servers offered me "American Hot." I wanted more heat! Now, if I eat anything that is higher than black pepper on the Scoville scale, I cry in pain. It's like putting shards of glass in my mouth.
I have a list of enjoyable foods that becomes smaller and smaller each day.
- Red grapes
- Cream of Wheat
- Costco frozen yogurt parfait
- Green beans
- Egg Drop Soup
- Shrimp Fried Rice
- Various cereals and milk
- Homemade chicken soup
- Arnold Palmers (Iced Tea mixed with Lemonade)
- Eggs, but not scrambled. (Scrambled eggs fell of from the list a few weeks ago)
That's it. Sixteen things that I look forward to eating. Sheesh!
On top of the food and eating issue, my stomach is often upset. My intestines and colon aren't all to happy, either! So, why would I eat? The whole process is problematic! I really don't have much incentive to eat.
My wife, Lissa, is very focused on my nutritional and caloric intake. She can magically tell when I haven't eaten enough and appears out of nowhere with a snack or food. It's eerie. I know one of her tricks. My lips turn purple when I am not feeling well and that's one of the signs that I really should have eaten already. Honestly, if she's not there to remind me at times, I would skip eating until I passed out.
I've lost about 34 pounds since my surgery in October. I have lost 25ish since I started my meds in mid-February. The good news is that I really should have lost that weight anyway! I wouldn't necessarily recommend this method, but it is what it is.
I think this might be what some pregnant women feel like. Some foods look and smell completely disgusting to me. I actually had to leave the house once when we were making Turkey Burgers. How sad is that? My favorite foods - they are completely off of the list. I miss peanut butter. I miss salad.
Why am I sharing this? I am sharing this because I actually look forward to eating from my limited menu when I am hungry! It's a blessing to have this food. I will never take food for granted for the rest of my life.
A special shout out to Little Szechuan Chinese Restaurant on Staples Mill Road in Glen Allen. I get Egg Drop Soup from them 3-4 days a week! They are directly responsible for a major amount of my caloric intake and I am eternally grateful! If you live in RVA, you should go eat there! Tell them I sent you!
I have been looking at life through different lenses for a couple of years now. The lenses provide clarity, and have allowed me to be really focused since my 3rd diagnosis. My focus is my daughter, Emma, and raising her to be a strong, confident, graceful, young woman. Part of that focus involves supporting her effort as a softball player. I can honestly utter "I love to watch you play" during each game, win or lose. Emma continues to grow and show improvement, both as an athlete and a good sport.Read More
When I first moved to Virginia, my wife, Lissa, used to make fun of how I let her know I was finished with my cup of coffee. She'd often ask if I needed more on her way into the kitchen and I'd simply reply, "I'm done my coffee." I don't know how that phrase became part of my vocabulary. It could be something I've always said from Northern New York, or some hybridization of German and English, or just poor grammar on my part that I never bothered to correct.
I expected to hear interesting phrases from Lissa. She's a true southerner, and I clearly heard a slight southern lilt in her voice when we first met. However, she never really uttered things I expected to hear in the south. She was never "fixin' to do something" nor did I ever hear "might could", but i have heard "bless his heart"* more than my fair share of times.
*For those of you living outside of the southern United States, "bless your heart" is a polite euphemism for "you're an idiot!"
I was chatting with a co-worker, a dear friend really, the other day. I was having a rough day. I've been actively fighting cancer for five months. I haven't been sleeping well. That, coupled with the side effects have made me a bit cranky. I don't have the energy levels I'm used to. I have lost over 20 pounds. I only have the desire to eat about a dozen types of food. Everything else makes me incredibly nauseous.
I'm trying to balance fighting cancer, a job, my family, and Napkin Notes.
I was tired that day. I was beyond worn out.
I found myself slipping back into my old language.
"I'm done my cancer."
I couldn't sum it up any better. I was tired of fighting. I was tired of the naseua and diarrhea. I was tired of the fatigue and getting winded after walking up one short flight of stairs. In that moment, I looked at Katherine and couldn't contain myself. "I'm done my cancer." She understood. Although we haven't known each other very long, she's seen me as a healthy individual and as someone who is fighting for his life. She's seen my good days and my bad days.
I felt badly as I left the office. I didn't want to be negative. Being positive actually requires a lot of effort and my positivity tank was running on fumes.
I went to bed early and finally got some good sleep. I was able to shake it off. I woke up refreshed and ready to take on the world. It was a momentary lapse. I think I'm allowed.
Why am I sharing this? I can't speak for all cancer patients. I know a few. Unfortunalty, the club gains new members each day. You probably know one or two yourself. Help that person. I can't tell you how to best help. It's different for each one of us. Maybe you can listen. Mow the lawn. Cook a dinner. Hold a hand. Give a hug. Ask how they're feeling. Don't ask how they're feeling. Pray. Rent a movie to watch. Give a book. Lend a hand. Support.
Being positive is an important weapon in my cancer battle. Positivity needs refueling, too.
I'm not asking for myself. I'm asking for the other 1.6 million new cancer patients that will be diagnosed in the U.S. this year. (I don't know the worldwide figures.)
This cancer has no idea what it's up against. I am resolute. I'm back, ready for battle. I'm ready to keep kicking butt.
I'm done my cancer.
Pack. Write. Connect.
In the magazine "Herzstück" (meaning "Piece of the Heart") they share our story and some of the notes with their readers.
It is part of their cover-story, "love is the key".
Herzstück is all about finding inner strength, happiness and leading a better, more meaningful life with everyone and everything around us.
I had an appointment with my doctor today. I know, you're shocked!
It was a great visit. I learned a couple of things that are pretty amazing, but I am going to focus on one.
I am responding to my medicine incredibly well. He considers me in the Top 10%! Most patients can keep their kidney cancer at bay with this medicine. The cancer in my body is on retreat and running fast.
I told him it was because I was taking the special medicine. I don't know that he understood what I was saying. Frankly, my medicine is only a part of the army. The other parts are God, prayer, and positivity.
Thank you for battling with me. I really appreciate your prayers, support, and friendship!
It's not everyday you see this response from a doctor after he reads your MRI report:
"Kick ass man. That is awesome!"
This is the same doctor that has long conversations with me about God and his plan for me.
I picture him walking through the halls with a stethoscope around his neck, a sword in one hand and a bible in the other.
I'm in great hands!
OK - really, it's GREAT news, but I wanted to undersell it. Of you don't read to the end, that's ok, but please SHARE this post so I can reach other cancer warriors!
My MRI was last Wednesday and my follow up appointment isn’t until this upcoming Thursday. That’s an awfully long time for a cancer warrior to wait for results, but I have waited longer. I fully admit I get a little edgy while waiting. I am more likely to be sarcastic (how can anyone tell?!?) and short tempered. Even my dreams take a hard turn and I dream of some funky things as I wait.
See previous post about the MRI and side effects here: http://www.napkinnotesdad.com/blog/2014/5/28/the-waiting-game
I prefer to get results as I exit the machine, but I know that isn’t realistic. We’re not just looking to see what’s currently in my body. The good doctors need to compare the new images to the previous images and look for changes.
Thanks to modern technology, my medical app alerted me to an update in the system. “You have a new message! Please go to the app to view your message.”
What could that be?!? Wow! I was getting the results from my MRI before I even had a chance to hear from my doctor. In fact, the message had come in while I was asleep. I opened the app even before I left my bed.
Reason: renal cancer metastic hx of prostate cancer evaluate adrenal and liver lesions
INDICATION: renal cancer metastatic hx of prostate cancer evaluate adrenal and liver lesions
There has been significant improvement in the multiple enhancing lesions during arterial phase imaging in the liver. Many of the lesions are no longer evident. There are 2 lesions in the right lobe of the liver segment 6 which are smaller in size measuring 1.4 x 1 cm and previously measured 3 x 2.3 cm and measuring 1.3 x 1 cm and previously measuring 1.7 x 1.5 cm.
Overall size of the left lobe appears slightly smaller... No obvious filling defects are identified in the gallbladder although CT demonstrated suspicion of gallstones.. The spleen is normal. The pancreas is normal.
The tiny nodule in the right adrenal gland is no longer evident. Patient status post left adrenalectomy and left nephrectomy. Postop seroma is smaller.. Right kidney is within normal limits..
1. Significant improvement in the hyperenhancing lesions in the liver many of which are no longer identified. The 2 which are still visible in the right lobe are smaller.
2. The 7 mm right adrenal nodule is not identified on today's study.
3. Postoperative seroma left adrenal bed is smaller.
Let me sum this up.
WHACK! We’re winning!
The lesion on my adrenal gland isn’t seen. This is the second scan that we couldn’t find this.
The lesions we had originally observed on my liver numbered from 3-5. We couldn’t tell exactly how many. There are just two now. Those two are significantly smaller. In case you didn’t know, this is where all guys appreciate that smaller is better!
Yes, I’ll likely continue taking this medicine. Scratch that. I will continue to take this medicine. We can hold on to Plan B (and Plans C through Z) for later. I’ll have another scan at the end of summer.
These results make taking this medicine worth it! Thank goodness!
Until then, let’s celebrate this win together. Will you please share this post? I want to reach as many cancer patients as possible. We need to stick together and support each other.
Again, thank you for joining me on this journey.
I sit in the waiting room of St. Mary's. I have been here before, but it doesn't quite feel like "home." I haven't had any food for 6 hours and I am starting to get just a little cranky. I am definitely dehydrated. I have a short, 45 minute appointment ahead of me.
I am waiting for my MRI, a scan that will show me what is going on inside of my abdomen. I am slightly anxious. I had cancer lesions on my liver and adrenal gland. We need to see what's happening today. I just want to get this over with so I can go home, eat, and take my meds. It will be some time until I have my results. I just want this process to be finished. I need some sleep.
It's been some time since I have posted something besides my daily Napkin Note. I started to receive some emails and calls a couple of weeks ago from kind souls asking if I was ok. I am ok. I have some good days and I have some bad days. Overall, I am not feeling fantastic. I started a drug therapy program in February that is frankly kicking my butt. It's a great drug, and the leading indication is that it is killing the cancer. I knew it wasn't going to be an easy ride. The side effects are somewhat problematic:
- Diarrhea - check! double check!! triple check!!!
- Tiredness - check!
- Nausea - check!
- Change in hair color - check!
- Loss of taste - check! (Most things taste like they're Black & White but I want to eat in a HD world!)
- Vomiting - just once, but holy crap it was awful
- Loss of appetite - check! (I have lost about 20 pounds)
- Pain on the right side of stomach area (abdomen) - check!
- Bruise easily - check!
- Irregular or fast heartbeat - check!
- Bleeding problems - check! (Bloody nose!)
- High blood pressure - check!
- Thyroid problems - check!
I am thankful, yes, thankful to be taking this medicine. It represents the best possible chance for me to beat cancer. It certainly comes with some challenges. I'll take them each and every day.
Someone asked me if this was chemo. It's not. Technically, it's not anywhere close to chemo. However, it's easy to say that it's "like chemo" except that I take this every day, and I don't really get a break. I don't experience all of the side effects at the same time, but I certainly am plagued with some of the tougher ones.
I may take this for the rest of my life. Think about that for a second before you move on.
I may take this for the rest of my life. What would you do? You'd take the darned medicine. Give your body a chance to win! Live! Raise your kids! Change the world!
What would you do to live?
This, this is what I do. Medically, it's what I'll likely do for the rest of my life.
And through this chaos of medicine and side effects, I'll take a breath. I'll pack Emma's lunch. I'll write a Napkin Note. I'll connect with her one more time.
Pack. Write. Connect.