Running a little late on the proton radiation floor yesterday. My appointment was at 1:15 and I got out of there after 3:00. No worries, though. I am not complaining about such things these days.
I met a friend at a Korean restaurant for dinner last night near the Kimmel Center in Philly. Holy Moly – that was some good eating…and good company! It is the first time I have eaten bibimbap – and it was worth it! Bibimbap is something I have only seen on the Food Network…but now I know it is real since I have eaten it. Yum!
I want to give a shout out to my friend Chris Hamilton. He is the youth pastor at FBC Lansdale. Every week Chris has made the trip to UPenn just to hang out with me for an hour or two. It is a long trip for him from the suburbs into the city. I greatly appreciate him taking the time to chat, hang out, listen and share time together. It makes each week go quicker.
One big miss for me in the last 5 weeks is that I haven’t had a cheesesteak yet in Philly. Please don’t think less of me. I have pretty much stayed around the hospital and not ventured out too far from my apartment. Let’s also make it known that I will rectify the situation next week.
The music yesterday was ok – mostly forgettable. There was one Pink Floyd song – but nothing much to pass the time.
As I was done getting blasted yesterday, the technician started moving the table back into position before unlocking my head from the table. It was kind of weird. I was stretching my arms out, bending my legs, and couldn’t move because my head was tight to the table. Here is my thought – if you want me to be comfortable and not claustrophobic, unhooks he mask before spending two minutes driving the table back into the original position.
Everything was going pretty quickly in the Proton Radiation department today. My appointment was at 1:30 and I was done by 2:15.
I walked into the proton room today and there were three therapists in there – none of whom I have seen before. Usually there is only two. I get on the table, lay down and they put the mask on and walk away. As they are leaving, I say, “Hey, usually I have a brown thing around my head when I get my head blasted.” The brown thing is meant to protect my head from the full blast of the laser – or temper the blast of the laser. They then pull the brown thing out, someone says “Oh, yeah – we should put the ______ on.” I can’t remember what it was called. I hear all three people chatting a little bit as I lay on the table for about five minutes. Then one of the dudes comes over, takes the mask off and tells me the machine is not working but there is an engineer working on it. We will be good in a couple of moments – right after we hear an alarm. By that point, the guy who has blasted the hair off of my head the most is back in the room. 2 of the starting people 3 were gone. The alarm went off – it kind of sounded like a fire alarm. It was a bit unnerving. So – the guy who I know runs me through the 20 minutes of head blasting. I get done, and a fifth person comes and takes the mask off of me. All in all – 5 radiation therapists, 35 minutes and a machine that didn’t work for awhile. At the end I was sure to say, “What the hell? Why is it taking five of you to blast my head today?”
I am writing this during the 14th inning of the Phillies game tonight. At some point, the Phillies need to stop trying to hit home runs and just work someone around the bases. 17 strike out tonights – and currently someone hitting > .120 is at bat. C’mon – gotta do better than that. As a good Philadelphia fan, I will happily say that some of these bums need to go back to the minor leagues. Gotta score more than 2 runs against the worst team in baseball.
7 treatments left. 2 Wednesdays, 2 Thursdays, 1 Friday, Monday and Tuesday. Almost there. Looking forward to next Thursday at 4:00 when I am done. It seems like I am really close to being done.
I was walking around Rittenhouse Square this afternoon and found a Federal Donuts. I am certainly stopping there later in the week when the kids are coming down.
One of the valuable things about this walk is that you build solidarity with the other people who are getting blasted at the same time you are. There are a couple of people I have chatted with throughout the last month – sharing with them my story and hearing theirs. I can check in with them each day and see how they are doing. I have celebrated with some of them when they are done and some will celebrate with me when I am done. There is a nice community in the waiting rooms of proton radiology.
The music has been changing every day for the past four treatments. Thursday of last week was the Grateful Dead. Not bad…good to listen to. Friday – it was Frank Sinatra. Treatment went quicker with Luck Be a Lady and My Kind of Town. One of my favorite CD’s I owned was the best of Frank Sinatra. I think I got it because my grandmother would play it in her car when she would drive me around in middle school and high school. Yesterday was a 90’s mix of music. There were two songs that did me well while laying on the table. One was a REM song – it wasn’t Losing My Religion or It’s the End of the World as We Know It. It was the one that starts with “Ohhh, life, is bigger…” I can’t remember the other songs – but one was pretty good. I haven’t heard a REM song in years. Today’s mix was a bunch of songs you would expect to hear when listening to NPR. A couple of them were enjoyable.
Day 21 and 22 were a little slow in the proton radiation department. We were running about an hour late each day.
It took three – four hours to get to Scranton from UPenn last Friday. It was an hour to get out of the city, and then a couple of hours to get up the turnpike. It was 3 hours to get back to Upenn yesterday. It is about a 155 mile trip. I enjoy the turnpike for the most part – it is 70 mph most of the way. But when there is construction, an accident or something like that, bleh. Yesterday there was a construction truck that stopped traffic because it was wither crossing the highway or stuck in the right lane…Bleh.
Every Monday I have an appointment with the doctor. They usually are not too exciting because I am not experiencing too many side effects. I asked about what the next couple of months look like. I will have a MRI and appointment in early September and then meet with the oncologist to set up chemotherapy. The MRI will be a new baseline for my brain for doctors to refer to in the future.
I started to get a mild headache last night before I went to bed. I am assuming it was a side effect from the treatment.
It was 90 degrees in Philly yesterday. I was sweating through my shirt unpacking my car and carrying it to my apartment. I didn’t bring any popsicles with me – I sure was missing them by the end of the night. I kept looking at my phone and seeing that it was in the low 70s in Scranton…only 115 miles away…
One of my kids barfed last night. I asked Jenn what they had to eat yesterday – donuts, pizza, potato pancakes, and some other crap (they had gone to Knoebel’s Amusement Park with Jenn’s family). As they were eating all of that, they were riding rides that spun them around in circles. No wonder someone ralphed…
I moved into a different apartment this week. It is better than the previous apartment. It has places to sit, the television works, and the furniture does not feel like it is going to break underneath of you. It is still within walking distance to the hospital. Can’t ask for more than that.
It is sweaty Friday in Philadelphia. I was loading the car this morning with everything from my apartment. I am moving into a new apartment next week – so I had to clean everything out this morning. The garage is two blocks from the apartment. I made the trip four times, carrying boxes and bags of clothes and things like that. By the time I was done, I had sweat through my shirt and was ready for a shower. Heat wave on the east coast.
It happened yesterday – I got through treatment number 20. Two thirds of the way home. Only ten more treatments! Almost there! I feel like a reached a good milestone where it will be easy to look toward the end. After I was done yesterday I was chatting with the radiation therapist. I told him that I made it to number 20. For me it is a celebration and affirmation that this is close to over. He said, “That is good stuff. You only have two weeks left.” Wet blanket.
I am fairly disappointed with Old Spice deodorant. It lasts about four hours. I would think they would want to work on their product so that it would last all day. I recently bought a stick of their original smelling deodorant. Their slogan on the back of the stick was, “If your grandfather didn’t use this 60 years ago, you would not be here.” First, is the marketing campaign “This will make you smell like 60 years ago?” If that is the case, I can still remember the smell of my grandparents furniture. Or I can just eat some moth balls. Second, there has to be some better slogan for them to use.
The music choice last night was the Grateful Dead. It was soothing and made it a quick 20 minutes.
There is a restaurant a block from the apartment called Rosy’s Taco Bar. Does life get better than that? Here is a rule of life: when you see a taco bar, you must check it out. I had a beer, quesadilla and some nachos. There were loads of beans and loads of cheese….And…wait for it…my stomach killed me all night long. Rosy’s Taco Bar – thumbs up for taste, thumbs down for the intestinal turbulence that I experienced for the rest of the night.
I am fairly tired today and am looking forward to a good nap on the table. I still sometimes feel like I am floating in the ocean during the first five minutes of the radiation ride. After that I can just lay there quietly and let the next 15 minutes pass by with my eyes closed. It is actually better for me to keep my eyes closed. The mask doesn’t mess with my left eye when my eyes are shut.
My hope is to get out of the city as soon as I can after treatment. I will stop at the Wawa in Lansdale to grab dinner on the way home and try to get up the turnpike as soon as possible this afternoon.
We were only 30 minutes slow today in proton radiation room 1. Today was an interesting day:
Here was not the smartest idea by me: It is oppressively hot here in Philly – complete with heat index warnings and the likes. Before walking the mile to the hospital, I ate a quick popsicle (I am checking out of my apartment on Friday – so trying to lessen the load of things I have to carry and pack in the car) and got bad sugared up. I then walked to the hospital in the midday heat with my backpack on. It was hot and sweaty – sweating through the front and back of my shirt. When I got to the hospital, I saw I had a couple of minutes. I didn’t have lunch, outside of a popsicle, so I thought I would pop over to the cafeteria to grab a quick bite to eat. Right inside the door is the hospital cafeteria sushi shelf. I like sushi. there is one for $5. Yum! I pay and quickly eat my hospital cafeteria sushi and down a bottle of water since I was very sweaty. I head to the waiting room when I start to feel my stomach grumble. I think to myself, “Well that is kind of weird – what did I eat today that my make my stomach sick?” At that time, the buzzer goes off for me to go to the changing room and get changed for the radiation. Also at that time, panic goes off within me. What if my head is bolted to the table and my stomach explodes? What would I do? How much can I purge before the treatments (apparently alot)? What if I am in the toilet when they come to get me for treatment and they have to wait for me? That would be embarrassing. So – I go to get changed and use the bathroom. I almost break the toilet with what seems to me to be sushi remnants. Ugh. I get finished and get changed knowing that I only went through round one of a three to four round battle. I think – “it only takes twenty minutes on the table, I will be ok.” What did I eat wrong…it was eating sushi on top of a sugary popsicle after sweating my ass off. Ugh.
So I get called back to proton radiation room 1 fairly quickly. I am feeling ok – it is only going to be 20 minutes. I lay on the table and they lock my head down. I am hoping to practice my napping technique on the table. I hear the machine start to move, and then it stops. Things get quiet for a minute or two. The therapist lady then walks into the room and says, “We are having some trouble with the machine, don’t worry, stay there and hold tight – an engineer is on the way.” There is so much wrong with that statement. First, where am I going if my head is bolted to the table? Second, how can I not worry if the thing that is blasting my brain just stopped working right before it was about to blast me? Third, didn’t a similar thing happen to Bruce Banner? Fourth, do they realize that my head is bolted to the table by a mask that is too close and too tight? Fifth, are they trying to make me claustrophobic when I have just come to be settled with things? Sixth, diarrhea!!!!
I hear the engineer in the room talking with the therapists and things get back online in five to ten minutes. I spend that time thinking about my exit strategy if I poop my pants on the table. I long for the radiology department at MD Anderson in Houston – where they have scrubs for everyone. I could just steal some scrubs and walk out of the hospital looking like someone who works in the hospital (like Dr. Richard Kimble…what is that movie reference from???). I could get to a bathroom and wash everything out and walk out with wet shorts on a hot and sweaty day – and it could be seen as sweaty on my walk home. I debated whether I could find a side door to sneak out of or go out through the parking garage to the street or just out the front door. I just didn’t know – but it did fill up a good portion of time.
Gracefully for me, the therapy went by quickly. I was done, tired from having my head bolted to the table for so long, and slowly made my way back to the changing room to get my stuff. No worries, everything worked out fine.
The music selection was ok tonight – there was the song from the end of Ghostbusters II when the entire city of New York is celebrating the destruction of the slime by the Ghostbusters in the Statue of Liberty. I was also transported back to prom time in high school with the theme song of my junior prom – which I can’t remember what it was off the top of my head.
What is the worst thing that has ever happened to you? I have been thinking about that in the last week. I have been thinking about significant down times in my life – and wondering if they have been the worst things that have ever happened to me:
I spent many seasons in my childhood on crutches due to surgeries, torn muscles, torn ligaments and other physical difficulties. I was born with a bone disease that was addressed through multiple surgeries. I learned that I was less than, I learned poor self-esteem, and struggled physically throughout my childhood due to the disease and injuries. I struggled physically for many years and emotionally for years past that. But that is not the worst thing that ever happened to me. I learned that there is providence in my struggles. I found hope in knowing that I am wonderfully and fearfully made (Psalm 139). God is in the midst of my struggles. My childhood of physical difficulties developed a perseverance within me to face adversity. It developed a sense of neediness upon God – that even though things are tough now, I am still part of a bigger story that God is writing. This perseverance and neediness on God were perfect when I heard the three scariest words in the. English language – “You have cancer.” I was ready for brain surgery because I had been through many surgeries before. I persevered through chemotherapy because I have experience in persevering through difficult times.
My parents divorced during my freshman year of college. I can’t say that was the worst thing that ever happened to me. It was a significant thing that happened to me. It was a punch in the gut and revealed the truth about the dysfunctional nature of the system of my family of origin. I knew the brokenness of my family in the deepest part of my being. My mom filed for divorce, making the brokenness of my family much clearer. It is something that knocked me on my butt during my freshman year of college. It broke down one of the foundational systems in my young life. However, it wasn’t the worst thing that happened to me. God used the brokenness I felt through my parent’s divorce to push me toward a life of service and work on a national platform of boy’s and men’s ministry. I wouldn’t be the person I am without my parent’s divorce. I have learned grace, perseverance, trust, authenticity and humility through the years of wrestling with the brokenness of my family of origin.
I can’t say that being diagnosed and living with cancer over the last 9.5 years has been the worst thing that has happened to me in my life. Cancer is awful and disruptive. My cancer is in my brain. It is high priced real estate to be dealing with. Awful. I have spent the summer living in Philly while my family continues their lives 100 miles away. Disruptive. Although my cancer story has its share of awfulness and disruption, it is only a small part of my story. Over the last decade I learned to lean on the One who was not surprised at my cancer diagnosis. I learned to trust and release important things to the One who sustained me over the last decade. I learned generosity and gratefulness as we have been overwhelmingly surrounded by love through our trial. We had three wonderful, healthy kids since I was diagnosed with cancer. We intentionally named them Emmanuella (God is with us), Nathanael (gift of God) and Gabriel (the Lord is our strength).
Not to quickly paint over the pain and heartbreak I have experienced in my life, but when I look back I see that the most difficult times were also the most formative times. They were the times that God revealed himself the most to me. They were the times where my spirituality, personality and character were most formed.
It was a slow day in the proton radiation department. I was about an hour late in getting on the table for my daily blasting. No worries though, I have one thing to do each day. All I have to do is lay on a table and get my head blasted.
Free Falling by Tom Petty is making a good run for the song I have heard the most while laying on the table. The last song today was Metallica’s Nothing Else Matters. Metallica during proton radiation is soothing to my soul. Both songs are a throwback to late high school and early college years. I am not sure how old I am feeling if those songs are on the classic rock station.
I am finding that my apartment is a difficult place to sleep in. I am on the third floor of a building next to a fairly busy street in the city. Construction happens at all different times of the night. It is currently after 1:00 am – and outside there is a loud truck and people screaming at each other. There is a bus stop right under my window. The bus that goes to 53rd and Walnut stops occasionally. I hear all of the announcements on the bus when it stops. There is also a bus that goes to Upper Darby that stops downstairs.
Speaking of which, I have almost been able to start napping on the proton table. I figure if my nose is in the same place in the mask, I can just drift off into sleepy land while going through the 20 minutes of blasting.
I finished treatment #17 yesterday. It is great to type 13 to go…seems like I am almost finished. My treatments have moved to earlier in the day – between 12:45 and 2:15. Having the treatments earlier splits up the day fairly well.
I am not complaining about earlier treatments – except on Friday afternoons. when I get finished right at rush hour and my commute becomes an hour longer due to traffic. This past Friday was silly – the expressway was backed up from the hospital to King of Prussia. There was no way I was taking that. I drove through downtown and got caught in 45 minutes of traffic getting out of the city. I then got close to the turnpike and found a huge traffic jam trying to get onto the turnpike. I made it home on Friday night about two hours later than I had thought.
I have been blessed to live in places where traffic is not an issue. There are quick ways to get around the island of Galveston. There are streets that move quickly and streets that don’t move as fast. I know my way around Scranton as well. I know the quicker streets and the back roads to get around traffic. In both places I would get annoyed when I sit in traffic for more than one cycle of red lights. I have come to expect things to move when the light turns green. I am not sure how I could live and drive near a major city again.
The play list yesterday was Free Falling by Tom Petty and Don’t Stop Believing by whoever sings that song. Free Falling is now tied for the lead with Satisifaction and Stand By Me for songs that I have heard the most during treatments. I think I have heard Don’t Stop Believing a couple of times as well.
The technicians have adjusted the cords that I hold during treatments so that my elbows are not over extended while I get blasted. That is nice.
A shout out to Don and Betty Helpa for the socks they gave me two weeks ago. I left them in my backpack – and needed them yesterday as I was wearing slip on shoes all day. My feet were a sweaty mess when I got there. I didn’t want them on the table due to their grossness. Those socks came in handy!
I have lost a good portion of hair. I can even my hair out and have a nice mohawk. I have lost hair from my ear to close to the middle of my head.
I got to see the doctor yesterday. Everything is going fine – no complaints. The nurse told me to use Aquaphor twice a day on the bald part of my head. I am not sure why. That greasy mess doesn’t go away – it just stays greasy until I mistakenly touch it.
Fatigue is also becoming a bigger factor. I am almost falling asleep as I write this. I am looking forward to my treatment and then heading back to the apartment for a nap.
Speaking of which – it is difficult to sleep in my apartment. It is not he 3rd floor along Walnut St. in Philly – a family busy street. There is a bus stop right under my apartment. The bus that goes to 53rd and Walnut stops there – as does a bus that takes people to Upper Darby. All stops are announced as the doors open. There are many car horns and construction vehicles throughout the night. Bleh.
I found these two suckers in a pair of shorts that I hadn’t worn since last summer. The shorts had been sitting in my drawer all wrinkled. I was afraid of them because they were wrinkled and I wasn’t sure what to do with them. So – I just threw them in the laundry. Through Jenn’s laundry magic, the wrinkles disappeared and I brought them to Philly with me. When I first put the shorts on, I went through the pockets and found this $100. My thoughts: “Man, that is quite a blessing for me. How can I spend this? Should I get dinner somewhere nice here in the city? Let me check out Amazon. Should I go to a couple of Phillies games?” After some consideration, I knew it would be better to give the money away as a blessing to others. I had met one person in the waiting room from Scranton. She was college-aged and just finishing up her treatments. I gave her one of the $50 bills. I am going to buy a gift card for a restaurant with the other and give it to the receptionist. She is a good person to say hi to when you walk into the radiation department. She has remembered my name from day 1. “In every way I have shown you that it is necessary to help the weak by laboring like this and to remember the words of the Lord Jesus, because he said, ‘It is more blessed to give than to receive.'” (Acts 20:35)