Special Project

What would happen if you gave a school a lot of pens and a whole bunch of napkins?

We are on a break!

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! 

#cancersucks

Reintroduction

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.

Not Embarrassed

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. 

20 Questions

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. 

http://www.napkinnotesdad.com/20-questions