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Glen Allen, VA 23060

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Food Glorious Food

WGarth Callaghan

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.

  1. Applesauce
  2. Red grapes
  3. Bananas
  4. Shrimp
  5. Cream of Wheat
  6. Strawberries
  7. Costco frozen yogurt parfait
  8. Green beans
  9. Pears
  10. Pineapples
  11. Egg Drop Soup
  12. Shrimp Fried Rice
  13. Various cereals and milk
  14. Homemade chicken soup
  15. Arnold Palmers (Iced Tea mixed with Lemonade)
  16. 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!  

 

Tough Choices

WGarth Callaghan

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.

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I'm done my cancer.

WGarth Callaghan

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.  

Napkin Notes reaches Germany!

WGarth Callaghan

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.

Vielen Dank!

A Fantastic Day!

WGarth Callaghan

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.  

Top 10%!  

Thank you for battling with me. I really appreciate your prayers, support, and friendship!  
 

The Doctor Is In

WGarth Callaghan

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!

Whack! Good Results!

WGarth Callaghan

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

FINDINGS:

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..

IMPRESSION:

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.

WHACK!

Again, thank you for joining me on this journey.

Whack-A-Mole


The Waiting Game

WGarth Callaghan

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! 
  • Fainting
  • 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.

 

Napkin Note: Dear Emma

WGarth Callaghan

Napkin Note:
Dear Emma, Be the type of person that makes everyone you come across feel perfectly ok with being exactly who they are.
Love, Dad

Pack. Write. Connect.

Special thanks to Julie Frary Keough for the inspiration!

Six Words I Need to Say to Emma

WGarth Callaghan

I was introduced to Rachel Macy Stafford, the Hands Free Mama, through a blog post, "Six Words You Should Say Today" and developed a deep appreciation for her parenting style. I also immediately started using her phrase, "I love to watch you play" whenever I could. Those words make a difference in my life, and I hope they make a difference for Emma, too.

I added a new phrase to my tool bag this week. Coincidentally, there are six words in this new phrase. I will say this phrase over and over.

Emma was at a sleepover with one of her softball teams. I was excited for her. This team is made up of incredibly talented girls who are also the best sports in the league. Everyone is lifted higher during their games, even the spectators.

We were warned that the house had a few animals, and Emma can have reactions from time to time. It could be a long night. As luck would have it, Emma was having some trouble early in the evening, and we collectively decided that it would be a better idea for Emma to come home.

I left our house at 10 PM to go fetch her. I was tired. It had been a long day and I am usually asleep by 10 PM on a normal day. Honestly, my meds are kicking my butt, and rest is important, but not as important as my daughter. I drove the 25 minutes, in the dark, without a single thought of my fatigue. I was happy to make this trip.

Emma hopped into my truck as I asked if she was ok.  She replied, "I'd never make it the whole night. Thank you for coming to get me."

I looked her in the eye and simply said, "I will always come get you." She kind of nodded her head, and I repeated it. "I will always come get you." She thought that I believed she didn't hear me, and she acknowledged my statement.  I knew she heard me, but I needed her to listen to me.

"I will always come get you."

I held her hand for a moment and let her internalize what I meant. She slowly nodded as she understood. She smiled.

I then listed some of the reasons why I might need to come get her: a flat tire, a bad date, homesickness, or even a friend that had too much to drink and shouldn't get behind the wheel ...

"I will always come get you."

I am your dad, and I will be there. Call me, no questions asked, at least until your home safely. I will never say "no."

 

The Merchery Shirt

WGarth Callaghan

I am happy to thank The Merchery in Syracuse, NY. They designed a Napkin Note Shirt to coincide with the benefit event held in my hometown of Port Leyden, NY, on 4/26. They did an awesome job!

I am touched by their generosity! Please thank them, too!
 

The Grace of Receiving

WGarth Callaghan

My family and I have received some wonderful care lately. We’ve received incredible support from our friends and even many strangers. The support has included spiritual, mental, and financial. We’re learning to say “yes” when offered help in any way. Battling cancer is a full time job, and there are times that I just don’t have the ability to do things the way I could three years ago.

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Bucket List Item #32

WGarth Callaghan

Good morning! I have never been a morning person, but there is something about a hot cup of coffee, a blanket, the sofa, and the dark that stimulates my creative side. I'm finishing up my first draft for my TEDxRVA talk. It's in 10 days. I was asked to participate last Monday.

Last week, I had entered a contest to win a ticket. I'm not in a financial position to buy one, but I certainly could try and win one.

I did win. Boy, did that contest change my life.

This is the email that I received from TEDxRVA: "Congratulations on winning the ticket to TEDxRVA through Twitter.

To be honest, we've been following your story and we'd be more interested in having you on stage to give a Talk than sitting in our audience. We know you have some interesting ideas worth spreading of course!"

I was filled with joy! I am still filled with joy! My mind hasn't stopped thinking about what to say and how to say it.

I've expressed this before. I'll continue to feel this way. Thank you for walking with me on this journey.