I have been home for almost one week and I am a tired monkey. I get a bunch of sleep at night. But by 300 in the afternoon, I am dragging. It is 3:20 now and I am ready to sleep for a bit.
We are still amazed and grateful for the support we have received over the past months. We are almost without words – but thank you are two good ones to use. We tried to walk this path in the past by ourselves. It didn’t work for us. It took us years to recover from the pain, heartache and exhaustion that we went through. Things are different this time. We are trying to be mindful in asking for help and taking time to rest. We are trying to care for the hearts of our kids and walk with them as they wrestle through what is going on. It will take us time to take a deep breath after this summer.
Now that I am home, there are some next steps to come:
- I will have about a month to rest and recover from the radiation. The next couple of weeks will be full of resting. Fatigue in the weeks following radiation is the toughest.
- I will be intentional in catching up with Jenn and the kids this month. It has been difficult on every person in the family for me to be away.
- I have a follow up appointment at UPenn in the beginning of September. I will check in with the radiation oncologist. I will have a MRI as a new baseline for treatment. I will also have an appointment with the oncologist to set up chemo. My guess is that I will start chemo in the early fall. We want to check in with my doctor at MD Anderson before starting chemo.
- Amazingly enough, the school year is starting soon. It will be time to get the kids ready and get them to 4th, 1st and Pre-K sooner than we think.
There is a bell in the radiation waiting room everyone rings when they are finished their treatment. As you know, I got to ring it on Thursday. One of my friends from the waiting room took a picture of me ringing the bell. It was the last thing I did in my treatment. You can see that I got to take the mask home with me. So glad to get to ring the bell!
Early in my pastoral career a friend and I went to a conference at Princeton Seminary. We took some time to go into the bookstore on campus. We found some Princeton Alumni shirts on the clearance racks and we naturally bought them. We went back to the conference and showed off our new purchase to everyone we saw – including one of the speakers. We delighted that the shirts only cost us $10. After relating the cost to her, the speaker looked back at us and said, “That is great, but I paid a little more for my shirt.” Roasted.
I wore the hell out of that shirt. I finally retired it a few years ago when the collar wore away and there were holes all through it.
I now have my second alumni shirt from an Ivy League school.
I now have my second alumni shirt from an Ivy League school. I figure I earned this one. I gave more than the $20 I paid for the shirt in the bookstore. I gave a bunch of my brain and UPenn ended up with a ton of money for my treatment. I deserve the shirt. I am going to pull a Nathan or Gabe and wear it all week long.
The kids have taken to wearing the headbands I bought a couple of weeks ago when my hair started falling out. They wear them to be like their dad. I am not sure what Gabe was doing, but I like it!
I am writing this from the luxury of my dining room table in Scranton! Sitting next to me are two things – our super dog Kelcie and the stupid mask that I am turning into a jello mold. It is good to be home! I can’t be more happy – it has been a long summer!
I was laying on the table yesterday during my last treatment with a couple of thoughts going through my mind. First, I was counting down the pulses of the machine – three positions and twelve pulses per position. That went quickly. Second, I pondered what to do when I was done. Do I just start crying? Do I start screaming unashamedly? Do I jump up and down and bounce off the walls for awhile? All seemed valid options, but just didn’t seem to have the panache I wanted. I came to a quick conclusion. My best course would be to streak the hospital. That would be the statement I wanted to make.
Unfortunately for me, I did not have the balls to do it. But hell – I am finished with radiation! I got to ring the bell they have in the waiting room for people who are finished! I will share a picture in a bit.
I am incredibly thankful and grateful for making it through and making it home!
I was chatting with one of the radiation therapists today. He asked me what I would do when I get home – how would I celebrate finishing? I first confirmed with him that I get to keep the mask. He said I did. I told him my wife and I were talking about turning it into a jello mold. We are planning a jello party sometime soon. We will use that mask to make as many jello molds as we can and invite people over for jello. You are invited!
The fella told me that he just had someone else finish up today and take the mask. That guy was going to take the mask home and smash it. Can’t make too much jello with a smashed mask!
It has been a couple of days since I have posted anything. My apologies! It has been a crazy couple of days. Here are some thoughts:
- I am not sure what is happening in the world this week. My appointments yesterday and today were at 1:30. Both days I got to the hospital by 1:00. Each day I was called into the proton room at 1:15. I was finished at 1:37 both days. Crazy world. Sometimes things get turned upside down.
- I have one more friggin day of radiation! There are many emotions involved, but joy and gratefulness are leading the way. Looking forward to getting home tomorrow night and hugging some kids and the wife.
- There has been a bunch of nondescript classic rock in the proton room over the last couple of days. Today was some country music – Ring of Fire by Johnny Cash led the way.
- 25 minutes x 30 days – that is a bunch of Pandora I get to listen to. There were songs lyrics I thought were questionable while having my head bolted to a table and a laser shot into my head (Knocking on Heaven’s Door). My favorite song was Stand By Me which I heard a couple of times. It is a fun song that I can play on my ukulele. The toughest song for me to listen to in the last week was We Will Rock You by Queen. Isn’t it the law that when you hear that song, you have to be stomping your feet? Can’t do that when you are supposed to be lying still.
- The last couple of days have been crazy…
- Over the weekend Jenn and the kids came down to Philly to hangout at my mom’s house. We got to meet my nephew Parker for the first time – he was born in June and is pretty cool. I was golfing with my brother on Sunday morning and was pleasantly surprised that I kept my score under 100. Lots of napping Sunday afternoon – and still tired to start the week.
- Monday – I packed things up at my mom’s house and drove to the city. My appointment was at 12:45 – so I drove directly to the hospital. I waited for 2-3 hours to get into the proton room. After the appointment, I went and checked into my apartment for this week. This week I am staying on the far side of Drexel Univ – about a mile from the hospital. It is about 2 miles from the other apartments I had been staying in. I unloaded some stuff from the car into the apartment and took the car back to the garage we had a spot in for the month of July. From the garage I walked to the hospital and met a friend for dinner. We went to a cheesesteak place on Market Street called Sonnys. I had a cheesesteak with bacon on it – the bacon made the sandwich. Not only was it good food, but it was great company. I got back to my apartment and looked around to grab some clothes, but then realized that I left the suitcase in the car…two miles away. So – after a two mile walk, I got my suitcase and dragged it back to the apartment. It was a good 4 mile jaunt later at night. Got back, took a shower, bed.
- Tuesday – major props to the pastor of my church – Jesse Miller at City Lights Church in Scranton. I think he is the person who drove the farthest to hang out with me. We spent a couple of hours together debating the essentials of life: should cream filled donuts be outlawed…what time in the morning is too early to eat sushi…and other assorted things! I got to the hospital for my appointment at 1:00 – and was done by 1:37. I thought that was great! I then started walking to the car in the garage. I had plans to meet friends for dinner. I walked the mile to the garage (in the blasted heat) and when I got there I realized I forgot the key fob to get out of the garage. Dammit! Two mile walk back to the apartment to get the key fob. Then a two mile walk back to the garage to get the car. I then drove out of the city to meet some friends for dinner. We ate at a Japanese buffet. I am a little embarrassed about the amount of sushi I ate. But it was delicious – as were all of the different salads at the buffet. Again – good food, but great company! Then back to the garage and a two mile walk to the apartment. Lots of sleep Tuesday night.
- Today was not as bad – walked to get the car today. We only paid for July at the garage – so no place to park the car tomorrow. I got the car out and parked it at the hospital. The ticket at the hospital has a price for 24 hours of parking – so the car is staying there all night. I will get it tomorrow, drive to the apartment, pack my stuff and back to the hospital for my treatment.
- Tomorrow morning is packing and getting to the hospital. When I left today they told me there was a time slot open at 11:30 for the proton machine. Maybe I will be able to slip into that time – and get out of Philly earlier. I will stop and catch some dear friends on the way home and try to be home by bed time.
- Please pray that the car will make it back to Scranton. I am concerned about some of the noises it is making while I drive. I need about 130 more miles before getting it to a repair shop.
- Been singing this for most of the afternoon…https://www.youtube.com/watch?v=IddP8AAIGTQ
- I was listening to the Phillies while writing this. They lost the game, 5-1. Tomorrow is a must win game – they must go 3-3 in these six games against teams in the playoff race. they must show themselves to be a contender when playing against the better teams in the league. As a true Philly fan, I am somewhere between little hope and hopeless for the rest of the season.
Doesn’t that look good…4 to go? It was a slow day yesterday for proton radiation – about an hour and a half slow – but a good day…
- Jenn is in town with the kids this weekend. She took the boys to see an ortho doctor in the morning. She then left the kids at my mom’s house and came down to the hospital. She got to wait an hour with me in the waiting room. Probably not too much fun for her, but good to not be alone.
- I have worked up a camaraderie with some other patients. It is a good balm to get a smile from them and and have a cohort of people who are bearing a similar burden.
- A punch in the gut: Jenn took Nathan to the ortho doctor to check out his ankle. They took some X-rays to see what was going on. Turns out he has a bone spur that causes some issues. The appointment went well. We will watch and follow up if necessary. On the way home Nathan asked Jenn, “Mommy, does this mean I have brain cancer too?”
- That is the naivety of a 6 year old – but also the fear and wrestling of a 6 year old whose father has cancer. I can’t wait to get radiation finished in order to ease that boy’s heart a bit.
- I have failed this radiation treatment in a couple of ways. I have been staying near Rittenhouse Square in Philly and then walking to the hospital each day. Failure #1 is that I didn’t know or take advantage of being just a few blocks away from a Federal Donuts. I walked by it a couple of days ago and felt stupid – I had been in the city for a month and hadn’t visited one of the best donut places in the city. Failure #2 – I have yet to have a cheesesteak while in Philly. That failure will be remedied on Monday night.
Here is a non-exhaustive list of ways to talk with some who has cancer that I have learned over the past 9.5 years:
- Do more listening than talking.
- Ask 10 times as many questions as advice you give.
- Join a cancer patient in the pain and discomfort that cancer causes. “You have cancer” are the three scariest words in the English language when they are used together. It is painful, awful, and disruptive. Those words vault a person into listlessly significant personal wrestlings of mortality, quality of life and uncertainty. Join the patient in the disruption. Have compassion for these wrestlings. Quick and easy answers are usually not helpful. Share in the pain and heartache of a cancer diagnosis.
- Speaking of quick and easy answers: things you see on television or things that worked for friends or friends of your friends are mostly useless. I can’t tell you how many people told me I need to consume more anti-oxidants or eat red grapes and red food – because Dr. Oz said so. Such tips are unhelpful. There is no cure for every cancer. When I am told such things, I recognize that the person has no idea about my cancer – trying to be helpful and just grasping at straws. But really, have I been through surgery, chemo and radiation because I didn’t eat enough red grapes or beets?
- It doesn’t matter how I got cancer. I may have smoked for 40 years and ended up with lung cancer. The reality in that situation is that I have cancer. I am fighting for my life.
- Deal with your cancer junk before encountering my cancer. My grandfather passed away from cancer around 1992. His cancer journey has little to speak into my cancer journey. Technology was different. Life is different. Each cancer journey is different. My journey is different than our friend’s journey who was recently diagnosed with stage 4 cancer and passed away a month later. My journey is different than every other journey in the proton radiation waiting room.
- Don’t be more upset about my cancer than I am. I don’t want to be in a position where I am reassuring you about my cancer.
- Cancer is difficult and it holistically affects life. Cancer affects each person physically, emotionally, financially, relationally, vocationally and socially.
- Cancer affects families as well. Ask about how the family is doing. Take care of the family alongside the patient. No one travels a cancer journey alone. Significant others are just as affected and are just as powerless in the outcome as the cancer patient. Significant others also will bear a bigger burden in the family when the spouse is fighting cancer. They have a large burden to carry.
- Any sort of compassion and thoughtfulness is greatly appreciated. Send a text “Thinking of you and praying for you.” Call and leave a voicemail. Send an email.
- From a Christian perspective, please pray for people with cancer. Pray for healing. That would be fantastic. Also pray for more of God in the cancer journey. Pray for more faith. What is the point of having faith if it doesn’t speak into a cancer journey? Pray for more joy in the midst of sorrow. Pray that God’s goodness and mercy would guide in the walk through the valley of the shadow of death.