Pack. Write. Connect.

Every once in a while, I make sure that this type of napkin is in Emma’s hands. I hope to steer her mind away from her hectic law school life and let her reflect on something good, even if it’s just for a few minutes.

I have to remind myself to be grateful, too. It’s easy to get caught up in the stress of cancer, treatments, insulin and glucose management, and every impact my health has on my life.

Here are 3 of my March Gratitude Check items:

1)      I found my lost laptop charger! I used it before an oncology checkup last November and hadn’t seen it since. Emma even went to the UVA Cancer Center and Hospital to check in the lost and founds. I had another checkup a couple of weeks ago, and as I turned the corner to go into the Lab area, there it was… still in the darned wall socket!

2)      While meeting a good friend for a much-needed cup of coffee, a kind stranger approached and asked if I was the Napkin Notes Dad. I was genuinely surprised and looked around wondering what was happening. I said, “Yes, I am.” He then shared with me that I am the reason why he writes a note every day for his 8-year-old son’s lunch. I really needed that reminder and it’s one of the reasons why I am posting again.

3)      I am almost finished this phase of medical stuff! Every 3 or four months, I have a slew of appointments. I have one appointment with my neuro team to review my brain MRI and have a check-up. Next Monday I’ll visit my Endocrinologist. Then I’ll be appointment free until late spring!!

4)      Bonus item – I found a new Star Wars shirt that I have been searching for since 2019! I’ll wear it Friday and post a picture then.

What’s something you are grateful for right now?

Pack. Write. Connect.

I just finished up an oncology check-in.

Everything is stable! I have two tumors in my lungs and a handful of tumors around my remaining kidney and adrenal gland. But they are not growing!

Cabozantinib is a hard drug. It pummels patients into the ground. The fatigue is off the charts. I have a handful of additional problematic side effects right now, so my medical team has suggested that I take a few weeks off from treatment. Normally, I'd fuss about not staying in my treatment plan, but not today. I'm going to take these three weeks and rebuild.

I can't wait to let you know how it's going!

Pack. Write. Connect.

#starwars #starwarsshirtday #cancersucks

I had had 24 cycles of Nivolumab Immunotherapy from August 2018 through June 2020. That treatment worked! All of the tumors that I had practically disappeared. The treatment was, you know, somewhat easy. Easy. I almost felt guilty that I didn't have horrible side effects and that my tumors were disappearing! My brain tumor was shrinking! The tumors around my remaining kidney were stable or smaller. The seven tumors in my lungs were gone! There was a hope that this treatment would be sustainable, even without the infusions.

It worked, until it didn't.

Gradually, until suddenly.

I needed to find another treatment. There weren't many choices left. I also needed to wait a little bit and rebuild my strength. I had had pneumonia and a pulmonary embolism back to back. I spent more time in the hospital that fall than any other time during my entire cancer ordeal. I needed some time to rebuild my strength and stamina before I chose any treatment program.

My oncologist presented a handful of options, one of the options was an experimental medical treatment. It seemed promising. And after a multitude of labs and scans and testing, I was accepted.

I started a medical study on December 1, 2020. I was taking XmAb®20717. It was very promising.

It was also a very difficult treatment. I purposely walked about 5 miles around the University of Virginia Campus after the first infusion. I wanted to prove to myself that I was up to the challenge. I had two more infusions, on Dec 16 & 30. Somewhere in that timeframe everything went upside down.

I developed pancreatitis but didn't know what was happening.

In early January my pancreas stopped producing insulin. I was incredibly sick but didn't know why. I called the emergency Oncology line. They recommend pushing fluids, especially Gatorade.

I didn't get out of bed for the entire weekend. However, there was a plan. I was going to go to the oncologist Monday morning. I never made it.

I woke up Monday morning, delirious. I genuinely don't remember much of that morning. Everything was difficult. I knew that I needed to take a shower so I could leave the house. But I wasn't sure how I could manage taking a shower by myself. I stood in the bathroom, dumbfounded. I had been throwing up for so long and had very low brain activity. I could not process anything.

I fell unconscious on my bedroom floor. I don't really remember that.

Emma was still home for Christmas break. She heard me hit the floor. She came to my aide. I don't really remember much of the next moments. Suddenly Lissa appeared. I was pretty sure that she had gone to work… and then there were paramedics above me.

I drifted in and out of consciousness. I remember being in the ambulance, but I have no idea what happened. I remember the ambulance arriving at the hospital and thinking how incredibly cold it was when the ambulance opened the back doors and was waiting for the hospital to receive me.

The paramedics tested my glucose and it was 1100 mg/Dl.

I spent the next 2 days in the ER and ICU. I think I was mostly unconscious, but I remember snippets.

I was transferred to the pediatric unit, because that's where new Type-1 diabetics go I guess. I wasn't in good shape. I was critically ill, but didn't even know how to process how bad the situation was.

Lissa and Emma had to fake the system out so that they could both visit me. It was the height of covid. I don't remember much about my hospital stay. My brain was in really bad shape with all of the extra glucose that was in my body. Emma came in and played chess with me. She soundly beat me. I felt like I was experiencing “A Beautiful Mind.” I kept seeing moves that weren't really there. I lost. It was a horrible game, but I can't remember any of the details of it anyway.

I was in the hospital for a week. I've been in the hospital a lot during my cancer issue. This hospital stay was the worst. I had no idea what was happening. I understood that I was suddenly a Type-1 diabetic. But the hospital's job was to keep me alive, not to make me the best Type-1 diabetic I could be.

And just like that, I became insulin dependent. On top of having metastatic kidney cancer. On top of being adrenal insufficient due to metastatic kidney cancer.

There's something darkly poetic about being admitted to the hospital on January 11th, the anniversary of the first time insulin was used to treat someone with Type-1 diabetes.

So, there you have it. I've been pretty silent on social media and now you know why. I have so many critical health issues that I just couldn't continue to keep up my social media presence. Even on my healthy days where I actually feel mostly human, posting here just reminds me how hard my health concerns really are.

And just like that, there's another insulin shot.

Mom loved and married my dad, Steve, he was working as a funeral director for my grandfather, her dad. She was drawn back into the life of funeral service.

Mom's love for Dad began long ago and transcended his death. They spent much more time together than the average couple. Mom had a lot of jobs working with Dad. She usually applied the makeup, wrote the obituary, and helped to organize things Dad didn't want to do. When someone in the community died, Mom was there to help. One unique thing that Mom did was bake a ham for the deceased's family.  I remember growing up and realizing that the smell of a pineapple glazed ham usually meant that someone in the village had passed away and that there was a family that needed to be fed. A baked ham would help for a few days.

Mom scored the top of the ham in a crisscross, poked cloves into it, placed pineapple rings on toothpicks, propped it up on this little upside-down ceramic dish in her cast iron skillet, and baked it for a few hours. I have to admit, I was jealous. I loved ham, and I was relegated to being a spectator, restricted to enjoying only the sights and smells in our kitchen.  The torture continued as the ham rested on the stove. After seeing countless hams baked and given away, and delivering some myself, I made a choice. I grabbed a knife, tilted up the ham, and I pirated a small slice from the very bottom. Who would miss such a small piece cut away? Not one person noticed. Most importantly, Mom didn't notice. I tried it again next time, and the missing piece was still unnoticed. Each time I wasn't caught I was emboldened and took even more. I got away with it for years. Or maybe mom just loved me enough to pretend not to notice, because one day, she caught Dad doing the exact same thing I had been doing for years and gave him holy hell. As a ham thief myself, I just hid back in the shadows of the kitchen hoping to avoid her wrath. I never found out if Dad had also been stealing ham all those years, or if that had been his unlucky first try.

I had a few somber thoughts driving up last week, one of which was, "Who will bake our ham?"

When she wasn't being a funeral director's wife, then funeral director, school nurse, mom to Colleen and me, or ham baker, she was an active organizer. She lived a life of service. She was sometimes an overenthusiastic participant in all things family, friends, church, and community. Growing up I saw her active in the Monday Club and the celebrity auction thing.

She loved sharing with me how she had helped to organize the Strawberry Social, the Alter Rosary Christmas Calendar, Raffle baskets, and Spaghetti Supper. She felt a true calling to help as she could. Slowly letting go of these ties to the community due to her physical limitations was incredibly difficult. I know she felt no one else could do things quite like her.

Mom was best when she was helping her family, her friends, and her community. We must ask, who will bake your ham?

Mom was a fierce supporter of her family. I could tell early on that she wanted Colleen and me to be close. She gave us complimentary toys. I'd open up the Six Million Dollar Man and Colleen would get the Bionic Woman something or other. That didn't work at all as I just took over and played with everything myself. Nice try Mom. When I wanted to change my room, Mom encouraged us to paint together. Bad idea. As Colleen was painting the wall, I walked up behind her and ran my paintbrush handle down her back, pretending to paint her. She whipped around and caught me in the chest, a small inch of paint soaking through. I exclaimed, "I didn't paint you! It was a joke!" and she immediately dunked her brush into the can and just covered herself in paint pleading, "Don't tell mom. Don't tell Mom!" We were not close friends. Thankfully as we grew up and matured, we've become incredibly close and depend on each other. Mission accomplished, Mom.

Her love and support only grew with a new generation of Callaghans. I know only one of you really knew Mom when she was at her best. But holy cow did she love you all. It was like she was born to become a grandmother. Mom was there for the big moments of your lives, cheering you on. I hope you can hold that love she had for you in your own hearts and draw upon it when you need to. Carry and share that love and support wherever you go in life. It won't steer you wrong.

Mom saw us all for not only who we are, but who we've become, and loves us unconditionally. Whatever we do and wherever we go. It is simply there, everlasting. She embraced us without reservation. The only way we could disappoint her was to not pass the pinochle cards she needed to make her outrageous, unrealistic bids.

Everyone here meant so much to Mom and were big parts of her life. I hope the next time you look at yourself in the mirror, you can, for a moment, see yourself through Mom's eyes and love yourself as she loved you.

Another cycle in the can!

I've been taking Cabozantinib since June 2021. Back then I had 7 lesions in my lungs and 4 lesions on my remaining kidney and adrenal gland.

This chemo is tough. 642 days down and no end in sight. I'll take this stuff until it stops working.

Today my lung lesions are not visible and the lesions on my kidney and adrenal gland are stable.

I know I haven't posted much since 2018 and there is so much more to talk about.

My next scans are in June. Hopefully I can catch you up with the rest of the story!

#kidneycancerawarenessmonth

#starwarsshirtday

Star Wars shirt ✓
Star Wars mask ✓
New haircut ✓
Dunkin' coffee ✓

Heading to UVA medical to follow up on some visual issues I've experienced.

#cancerstrong

Don't ever let anyone get in your way of accomplishing something that matters to you.

I have a lot to be thankful for, and so do you. Sure, there are dark clouds in my life. I always say everyone has a little crap in their life. I am no exception. 

But I have so much to be thankful for: Lissa, my wife; Emma, my daughter; and the blessings we receive from our community. I’m thankful for the never ending source of Napkin Notes. I could go on and on. 

This year we’re asking you to do something a little different. We’re asking you to think ahead, to plan. Get ready for giving thanks a few weeks earlier than normal. Be purposeful in your thoughts and actions. 

Join us this Thanksgiving as we give thanks for the people in our lives. 

Starting November 8th we will write a note a day until Thanksgiving. 

Follow our guide, choose a napkin or a note card and remember it is the thought that counts.
Write one note a day for 21 days. Easy, right? 

Why Do We Give Thanks?

Because the people in our lives matter.

It is our responsibility to tell them that they do.

I chose a napkin. A simple way to connect with my daughter, Emma, at lunch every day - sharing wisdom, inspiration and encouragement. 

What I did not know is I would be diagnosed with cancer 4 times and how valuable these moments we two would share.

Use the hashtag #21DaysOfThankfulness

Download the easy peasy guide here: 21-Days

Pack. Write. Connect.

12 Shark Pens hiding in RVA. Will you be the first to find one?

Clues start tomorrow on Facebook, Instagram, Twitter, and the Napkin Notes website.

Today is infusion #13.

I've had a kidney removed along with a 13 cm tumor.

I've had an adrenal gland removed with a 2.5 cm tumor.

I've had 77 scans.

I've had 1621 days of daily chemo.

I've had renal cancer metastases on my liver, my other adrenal gland, my right lung, and my brain.

I've had gamma knife radiation brain surgery.

I've had 12 chemo-immunotherapy infusions.

Today is my one year anniversary of immunotherapy

Today is infusion #13. 11 more to go.

I love knowing numbers but I honestly can't count how many napkin notes I've written to Emma. Thank goodness, because it's not about that. It's about building that connection.

I woke this morning at 4 AM and two things were on my mind:

* Holy crap, it's early!

* In your rush to get to UVA, don't forget Emma's note.

Emma's almost 20 and I'll continue writing notes to her as long as she wants me to. It's a true blessing to have made it this long that I get to write notes to an almost 20 year old!

The universe works in mysterious ways. As I was waiting for my first appointment (brain MRI) I received a message from Ainura in Kazakhstan.

I’m tired and hoping for a nap this afternoon.

Thank you all for the kindness, the love, and the support for the last 2833 days.

Pack. Write. Connect.

It’s time to write one note. You already have the basic tools. You just need a pen and some paper, a postcard, even. How many words could you write which would really make a difference anyway? (It’s less than you think!)

It’s time to write a note, or if you’re brave enough, a whole letter. It’s time for the Napkin Note Challenge.

A note (or letter) is such a beautiful thing. It’s a snapshot in time and something tangible that the reader can hold on to forever. It’s something besides bills and junk mail to fill the mailbox.

And here you are, pen in hand with a notecard in front of you. What’s next?

1) Greeting - It can be as simple as “Dear ______” or even just their name.

2) Date - Put the date somewhere, even on the back. It’s your snapshot in time and this is the way to do it.

3) The Note - Just write. It’s doesn’t have to be perfect. Start off with something like, “I was thinking about you.” “I wanted you to know how much I appreciate your friendship.” or “I was thinking about the time when you and I ______.”

4) The Props - Time to prop up the person reading your note. Say something positive like, “You are amazing.” or “I can’t wait to see you again. You’re so awesome.”

5) End - End with something simple. “Much love, _____” or “Thanks for being you, ______”

Here’s the challenge. Write one note before the end of the weekend and put it into the mail Monday. There’s no hashtag, no posting pictures on social media, and no humble brags about your awesome note writing skills. It’s just you and the recipient.

I am grabbing my pen right now.

I was worried about:

1. What if I died?

2. What if I went blind?

3. What if I had brain damage from the surgery?

I was hoping for:

1. Gamma radiation - could I be the next Bruce Banner (Hulk)?

2. If I go blind, could I be the next Matt Murdock (Daredevil)?

3. What if I came out of surgery being able to speak Portuguese or super sight?

As it turns out, none of the above. It was pretty boring overall. I’ll run another set of scans in the next 6 weeks or so, and we’ll see what we can see.