Napkin Notes - The Book

Well, it finally happened! It hasn't even been one week and the excitement is still building! I can't begin to describe the feelings I experienced as October 28 came around. It was just like any day in the past few months, with one exception. 

I woke up early, and immediately ascertained what I thought my energy output might be for the day. I thought it might be slightly above average. That was a good thing considering what was ahead. 

It was the day I had waited for since February. I met with the team at HarperCollins right after we recorded the Rachael Ray Show segment. I shared with them my recent cancer diagnosis. Lisa Sharkey put the meeting on pause and made a quick call to someone at Memorial Sloan Kettering. She wanted to make sure I saw some doctors there before, well, you know. We also agreed that it was better to get my book out this year. Sooner is always better than later when you have metastatic kidney cancer! 

We set out to finish a first draft in about 80 days. It was tough. Draining. I had to resurface memories and emotions I had worked hard to move past. How many times did I have to relive telling Emma and Lissa I had cancer? I needed to share my experiences with you. 

It was worth it! I am extremely proud of the book, and I couldn't be happier with the design HarperCollins created. It's beautiful. 

The HarperCollins team visited us recently to film some promo videos. They were supposed to bring a dummy book, but somehow they tricked me! This video shows the first time I hold my actual book. 

I hope you can take time out of your day to read this. It's a call to action. Life is short. Do what you're meant to do. Be what you're meant to be. 

Pack. Write. Connect. 

http://bit.ly/ZWXfDz 

little big things

It's 2:30 am and an incredibly busy week is winding down. I find myself "celebrating" on the sofa with 7-UP and oyster crackers, hoping to stem violent outbursts from both sides of my body. 

I keep telling myself it's all part of the treatment. It's just temporary. I can muscle through it. If I can't handle this, then how can I handle the tougher things to follow? 

Then I think back. I've been through  some unbelievable tough situations: a medical emergency in a foreign country, basic training, S.E.R.E. (US military survival school), and my first cancer surgery. 

This, by far, is the most difficult physical challenge I've ever experienced. 

If you know someone in cancer treatment, I implore you to take action today. Rake their yard. Make a dinner. Offer to go to the grocery store and pick up something. Get some books or videos from their library. Walk their dog. Vacuum their house. Take down their Halloween decorations. 

It doesn't have to be anything big. It can be a little thing. 

It's not about big things. It's about little big things. 

http://amzn.to/1pVa4oB 

By the Numbers

I am a geek. I love Star Wars, lightsabers, math, science, reading, learning, and outer space. When I first introduce myself, I feel comfortable going back to my roots. Numbers. 

I think I am a fairly average guy. I am 45 years old. I am 5'10" and weigh 170. I have been married for almost 18 years. I have a 15 year old daughter. I have probably written and packed around 1500 Napkin Notes. 

In November 2011 I was diagnosed with Clear Cell Renal Carcinoma, the most common form of kidney cancer. It was a 13cm tumor that mostly enveloped my left kidney. (I have pictures although I have never actually looked at them.) The kidney and tumor were removed. The cancer was Stage I, Fuhrman Grade 3.

There were approximately 1.6 million new cancer cases in 2011. I was one. 

There were approximately 63,000 new kidney cancer cases in 2011. The average age of diagnosis is 64. I was 42. I was one. 

In August 2012 I was diagnosed with prostate cancer.  My Gleason score was 6. I had multiple biopsies with a total of 32 samples taken. 1 sample showed cancerous cells.

There were approximately 230,000 new prostate cancer cases in 2012. The average age of diagnosis is 66. I was 43. I was one. 

In October 2013 I was diagnosed with kidney cancer on my left adrenal gland. It was about 2.5cm and had clearly metastasized from my original tumor. Stage IV. It was removed via surgery. Statistically speaking, Stage IV kidney cancer patients have an 8% 5-year survival rate. (How's that number grab ya?) 

In February of 2014 I was diagnosed with kidney cancer that had spread to the liver and my right adrenal gland. The spread was too wide to correct via surgery. I currently am in an program that is "like" chemo taken at home in a pill form. 

As of October 2014, we've seen a fantastic reduction with many of the lesions, but there are 2 stubborn ones sticking around. They must love me! 

Even with all of these numbers and statistics, there are two that need to be talked about. They are, in fact, the two most important in my life. 

826 and 1. 

826 - In December of 2013, I began secretly writing enough Napkin Notes to get my daughter, Emma, through high school graduation in the event I couldn't be here to complete the job in person. I am happy to say that I am still writing daily notes and plan on doing so for quite some time. 

1 - I am a statistic of one. No matter what I read, no matter what the statistics say, I will beat this. 

Thank you for walking the path with me. Thank you for supporting my family in this journey. We couldn't do this alone. 

Pack. Write. Connect. 

At least I cleaned up ...

I do my best to find silver linings with my current health situation. I really do. I recently had a friend tell me, "You've certainly figured out the secret to making lemonade from lemons and I'm very very happy for you. You are proof of what a positive outlook can do in life." I took that as a high compliment. I make the best lemonade I can imagine. (Note to self - I should launch a lemonade brand and donate the proceeds to cancer-based charities. I'll add that to my future projects list!)

I have been battling nausea for the past two weeks. It has been incredibly difficult at times and I have found food very distasteful. It's a little funny because if I have food in my stomach, I am usually less nauseated, but I don't have any desire to eat.

I was chatting casually with a co-worker about a week ago and jokingly said to him, "I need to go get a drink before I throw up." I needed to get something into my stomach as a wave of nausea was setting in. I walked the 100 steps to the break room and before I even had a chance to get my drink out of the refrigerator, I did.

I. Threw. Up.

A lot. 

At work! 

In the break room! 

Yuck! 

How embarrassing! 

I broke out into that cold sweat you get while vomiting. My dress shirt was sticking to me and I just stood there, leaning over the trash can. 

Here's my silver lining. 

1) I learned where the trash dumpster is. Of course, I cleaned up and took out the trash. I had no idea where the building trash dumpster was located. I asked someone and was able to walk directly to it. We have a fire drill planned next week and our meeting place is the trash dumpster. Now I know where to go!! 

2) I have had a slightly misaligned rib and it's bothered me for a couple of months. I have been visiting a chiropractor, doing exercises and managing the pain as best I can. It was close to being fixed, but the violent act of vomiting popped it right back into place and I haven't had a bit of pain since!

That's how you make lemonade!

Pack. Write. Connect.  

Just a Little Sample

Everyone loves samples! I can't thank the team at HarperCollins enough for allowing me to share the introduction and the first chapter with you. 

Click HERE to view the sample! 

9 Weeks, 6 Days

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