CT Scan/Radiation and Reggae

I wrote the radiation part of this blog last week, but have been unable to find the time to post it. I felt the need to update everyone of my recent CT scan results prior to talking about radiation. I learned today that I have a new tumor in my right lung. That means the three months of chemo I’ve been on has been ineffective. The spot isn’t large and I believe it can be radiated. My current tumors aren’t particularly challenging, the challenging part is finding a chemo that works. Because my cancer has a mutation, research shows that there are only two chemo combinations that are effective. Unfortunately, I’ve had them both and they weren’t completely effective. I will be able to treat my current localized spots with radiation and surgery.

It was hard to hear that my chemo was ineffective. Instantly, my thoughts went to dying and not being here for my family. I began to think about the future and the possibility of getting a tumor in a spot that’s not treatable. I was not appreciating the moment.   I have two spots in my lungs that will be able to be removed or killed through radiation and surgery. I can’t focus on the future because all of this is out of my control and I’m unaware of the big plan for me. All I can do is try my best at everything I do and to cherish the moments I have with my family and friends.

 

Radiation Reggae

 

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Getting ready to receive radiation treatment.

As I was lying down on the radiation table looking up at the tree canopy images on the ceiling, I wondered what this next phase of treatment would bring. They gave me a list of potential side effects. I was anxiously awaiting radiation when the machine’s arms began rotating around me. With each noise I heard, I wondered what it was doing to my body. I began feeling a burning sensation in my chest where I presumed my nodule was located. The burning lasted for 15 minutes and then a voice over the speaker said, “Things are looking good. We are about to start treatment. We are just waiting for the doctor to give us the okay.” Wait, What? It hasn’t started yet? I quickly realized the burning sensation was a self-induced side effect.

I received four treatments in the course of one week. I never did experience any burning sensation during my radiation or have any noticeable side effects. I would take radiation over chemo any day. I was fortunate because I’ve heard horrible stories of radiation side effects. The process for me was smooth. On treatment day, I would drive to Hopkins, change my clothes, get called into the radiation room, choose which music I would like to listen to, get locked-down to a table, lie still while the radiation machine arms rotated around me, get up and change my clothes, and drive back to work or home.

At every treatment, the tech would let me choose the type of music. I always choose to listen to reggae because it is nice and relaxing, but I soon realized it is also foot-tapping music. I had to consciously think about not moving because I didn’t want them to “zap” the wrong area.

Now my schedule is a CT scan, today, April 23rd , meet with lung surgeon on the 24th, surgery on the 29th. This surgery is planned to be less invasive than my previous lung surgery. It will be laparoscopic and my hospital stay should be for a few days. I will then wait four weeks and go back on chemo in June.

Not being on chemo has been wonderful. I have been able to play more with my children, work more, attend church more, and enjoy friends and family over Easter. I’m also excited because my oldest daughter’s birthday is in May so I won’t have a chemo hangover for her kid and family birthday parties. I love not being on chemo and not a second goes by that I don’t appreciate the freedom of not having a chemo pump attached to my chest.

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Easter Vigil. Janie coming into the church

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Easter morning

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Christ statue at Hopkins. I pray here before every appointment.

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Scope It Out 5k

Recently I ran in the Scope it Out 5K Colon Cancer Awareness Race in Washington D.C. and it could not have come at a better time. I haven’t been feeling connected to people because my life is not “normal” and it’s hard to relate to others because my life is so upside down. I try to present myself to others as normal as possible because I believe most people don’t want to hear how I’m really doing as it creates awkward moments which people don’t know how to respond. Honestly, 18 rounds of chemo and two intensive surgeries in one year, and upcoming radiation, surgery, and more chemo weighs on me physically and emotionally.

When I talk with other cancer patients going through chemo, we categorize the weeks as a “good week” or a “chemo week”. A “good week” is a week without a chemo treatment. For me, it’s having the energy to play with my kids, helping around the house, connecting with friends, and being able to work. However, due to my illness even on “good weeks” I only work about 20 hours. I believe it’s unethical to take new patients because I miss a lot of work due to medical appointments and chemo. Over the past 14 months, I’ve missed more than four months of work to fight this. I thank God everyday for my boss Frank Gibson. Frank and the staff have been supportive and helpful since day one. I am fortunate to have such an understanding and caring workplace.

A “chemo week” begins with chemo treatment all day on Tuesday then off from work on Wednesday due to symptoms of fatigue and nausea. On Thursday and Friday, I usually go back to work. It isn’t the most ideal situation because I still have the chemo pump attached to me for part of the day on Thursday and feel fatigued for both days. Finally, by Saturday I start to feel normal. Here’s an example that shows how fatigue affects me. I might be resting on the couch and become thirsty and it is hard for me to muster up the energy to get a drink. It’s a task that I wouldn’t think twice about on a “good” week, however, during “chemo” week it’s difficult. Another struggle for me during “chemo week” is having my oldest daughter see me napping in the afternoon. It frustrates me because it’s “normal” for my daughter to see me napping throughout the week in the afternoon and early evening hours and I don’t like that her reality is seeing her father sleeping in a bed all the time.

I’ve always considered myself an energetic and happy go lucky person, to the point where it might be annoying to others. So when my energy is not there during “chemo week” it makes it that much more frustrating. However, during the Scope It Out 5K I didn’t have that problem. With Team Wine-Icki, consisting of 30 members, I was full of energy.  I was worried about how I would do with the jogging/walking because it was a “chemo week” for me but getting out of my routine and spending the day with family and friends was exactly what I needed.

Thanks to all of you who ran and supported my family and I. It was an awesome day. Katie and I finished in 48 minutes. I am so proud of my daughter Katie who ran the majority of the way. Watching her run was a moment that I’ll replay for a long time. It was fun watching her run because she ran as fast as she could the whole way. She even heckled me because I was jogging and not sprinting. She doesn’t understand the concept of jogging because when she plays she runs as fast as she can, as do I when I play tag or hide and seek with her.   I woke up sore the next day and she teased me by saying “Why are you sore? You didn’t even run”.

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Betsy and Katie about to run

Special thanks to Kevin Gladstone for organizing the event. Kevin, I love hanging out man. You always make me laugh. Kevin finished 9th out of 2151 participants. Great job team captain. My cousin Rachel posted the fastest time in her age group and I’m sure Katie won her age group. So, Team Wine-icki had a great showing in the results category as well as at the after party.

Today, I finished my last round of chemo for two months. I’ll have radiation on a nodule in my right lung on 4/7, 4/9, 4/11, and 4/14. Then I will have lung surgery on 4/29 to remove a nodule in my left lung. I will get a four-week break to recover from surgery then begin chemo again in the summer. Please continue to keep me in your prayers this month.

Please Keep Matt Janicki in your prayers as well. He put the “icki” in Team Wine-icki. He’s 36 years old and has a similar diagnosis to mine.

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Part of Team Wine-icki

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