Here we are! I have been expectantly longing for this day – halfway through treatment! only 15 more to go! I am on the downslope of this program. We were running slow last night – about an hour late for the festivities.
The music last night was non-descript, but it was good. It wasn’t Disney or top 50 or classic rock or anything like that. It was folksy and mellow. I was quite pleased with the soothing nature of the music.
Today is the first day where my treatment is around lunch time. My appointment is at 2:15. I am hoping to get there, get on the table and then get in my car and drive back to Scranton to be home by 6:00 or 7:00. The latest treatment in the next 15 days is 3:00 pm. All treatments are between 12:45 and 3:00.
My hair has gone from male patterned baldness to “you look like a cancer patient” or “you are close to half a mullet.” The hair from my ear to the left side of the top of my head has either come out or is falling out. It is disheartening to take a shower, wash your hair, and have your hand covered in hair that has fallen out of your head.
I have been biking the last two days, but today I am going to pack the car and go for a short walk on the river trail. Do you know that there are eels in the Schuylkill River? American Eels. Yuck.
I finished reading my 3rd book of this experience. I read Nick Foles’ autobiography Believe It. It is kind of embarrassing to say – as a life long Eagles fan. It took me two years to read that sucker. As a good fan, I should have read it as soon as it came out – as close to their super bowl win as possible. I also read Michael Lewis’ book The Fifth Risk. I like Michael Lewis as a writer. He wrote Moneyball, which has changed how most sports teams construct their rosters. He also wrote The Blind Side, which was turned into a move about 10 years ago. The Fifth Risk is about the transition of the Trump White House to power after the 2016 election. I like reading books about the crazies inside the White House (I read Bob Woodward’s book and a book by Robert Strauss called Worst President Ever – which was about James Buchanan but had some parallels to the current administration). I just finished up Birds of Pray – the story of the faith of the 2018 Eagles team that won the super bowl. It was good stuff and an easy read.
Each day I walk to and from the hospital. Alongside of me there are scores of people walking to and from working at the hospital or at UPenn. It was pouring last night – a big thunderstorm was rolling through the city. As it slowed a little bit, I decided to give it a shot and walk back to my apartment. That may have been a mistake. The thunderstorm did not slow as much as I thought it did. I spent some time hanging out under the overhangs of buildings at UPenn and stood under a bridge or two on the way home. As I walked down Walnut St, I turned behind me to see there was no one walking on the sidewalk behind – matching the no one who was walking in front of me. At that moment, when I was fairly soaked, I realized that I was the only idiot to venture out in the storm. I made it back to the apartment very wet, and knowing I was quite an idiot. I was in no rush to get back – could have waited things out at the hospital.
Asking for your prayers in helping us work out housing for the next 15 days of treatment. This apartment has been a blessing. It is close to the hospital, I can get out and exercise, and it is centrally located in the city. However, we were only able to rent it for one month when we got started. We are looking into a grant for a place to stay from July 18-August 2. Jenn is working on the details. The owners of this place want to rent it to someone else for that time period. There are some other places that are available close to UPenn that would also work. It would be easy to stay here or move to another place in University City if we have to. Our prayers are for a grant for housing for the last 10 days of treatment.
The #1 proton radiation machine was kicking it last night. I got to the hospital at 5:30 for a 5:45 appointment. I immediately got a message to get changed into the hospital gown getup and was immediately called to the proton room. I didn’t even have time to cool down from walking to the hospital in the blazing heat. It took a little longer than usual on the table, but I was done by 6:00. Yahoo!
I brought my bike down to my apartment this weekend. Every day I walk across the Walnut Street bridge to and from the hospital. Everyday I see the Schuylkill River trail under the bridge and think to myself, “That would be fun to ride my bike on.” I went for a bike ride yesterday – went about 10 miles. It was great. And….it made me tired. I was ready for bed around 9:00 last night.
I got into the proton room last night and the therapist asked what kind of music I wanted. I knew that Wednesday night was bad music night because the regular guy is off on Wednesdays. I asked, “What do you have on?” Both therapists replied, “Disney!!!” “Good heavens. Let’s go with Motown.” So – My Girl, I Heard it Through the Grapevine, and a couple of other classic songs. Much better than Disney songs.
In recent weeks I noticed there are some fairly rough haircuts in the radiation waiting room. Some people shave their head. Some people don’t – just have some bald patch somewhere on their head. Many people wear hats. Well…I am joining the rough haircut group. I am looking forward to August 1 when I can shave my head. Until then, my hair is long enough to go in different directions and there is a nice bald patch as well…
If you follow Scranton news, there will be a special election for a new mayor of Scranton in November. The previous mayor resigned in the midst of a federal corruption investigation. So, should I put my hat in the ring? I have until next Wednesday to turn in my resume. I am really good at applying for jobs that I am not qualified for.
One of the last jobs I applied for was to be the reptile keeper at the Steamtown Aquarium. I figure I have thousands of hours of reptile keeping experience by watching stupid shows on Animal Planet and Nat Geo. I am all for stupid snake programs – especially the ones where they screw around with poisonous snakes. I learned enough from those programs (don’t screw around with poisonous snakes, snakes are good at escaping from cages, have plenty of anti-venom around, feed them mice). I would just need to fight my natural tendency to whack them when they get out of line. I learned everything I need to know about gators by watching the Crocodile Hunter decades ago (if they start to get ornery, jump on their back, tape their mouth closed and cover their eyes. Stay away from their mouth). I have everything I need to be the reptile keeper. I also once had a snake in my house. I expertly removed the snake from my house without peeing my pants. Unfortunately for me, I did not turn in a cover letter to go with my resume (which had no reptile keeping experience on it). I was not able to share my expert knowledge about reptile keeping. A couple of weeks later the Steamtown Aquarium let me know they were moving forward with the hiring process without me. It was their loss. This may or may not relate to the mayoral election in November.
I feel like I should update my Aquaphor situation. I have applied it to my head a couple of times. It is a greasy mess. It is better for babies butts.
I got back on the table last night for the first time in a couple of days. I am not sure I missed having my head bolted to the table for twenty minutes.
I am realizing that I need to wear glasses to each appointment. The mask that I wear is too close to my left eye. I think it pushes my eyelid down or messes with my eyelashes – when then messes with my left contact. I can take my glasses off for 20 minutes and not worry about screwing with my contact after radiation.
The music last night was classic rock blah – not memorable at all.
I was a bit congested last night – one of my concerns about this whole song and dance. It will be tough to lay still for 20 minutes if I can’t breath through my nose. I have been doing great breathing through my nose – but every so often I want to swallow or breath through my mouth. I am struggling to do that when I can’t move my jaw. It is weird, and sometimes makes me a bit claustrophobic.
It has been easy for me to figure out where my brain is getting blasted. the hair on the front left side of my head has fallen out. Over the weekend, I could pull the hair off of my head. The hair would fall off in big clumps when I washed my hair in the shower. It was stuck to my hat when I was wearing a hat. Now I am mostly bald in that area. My head looks like I have uneven male patterned baldness. I will keep wearing a hat and looking forward to August when I can shave my head.
I am two days away from being halfway done! I have three more weekends left until this is over. Looking forward to it!
This week the kids are at vacation Bible school at a local church. It is their second VBS of the summer. When churches have VBS during the day, I don’t like to call it VBS. I like to call it free babysitting. It is good stuff!
I am incredibly grateful for the amount of support we receive from all different seasons in our life. It is amazing and it is humbling! The Schwartz’ are definitely blessed people.
Yesterday was a rough day. I went golfing in the morning at a tournament in Lansdale. It rained the entire time. I couldn’t get a good grip on the clubs after about 6 holes…it was frustrating I couldn’t show off my golf skills that I hone once or twice a year.
I got to the hospital a little early to see the doctor before he left for the day. I felt a little rushed in talking with him – but did have some time to chat through how things are going. I sat in the waiting room for awhile and started falling asleep – I knew it was time to start moving around. As I walked around the waiting room I heard rumors that the proton machines weren’t working. Some were being restored while others weren’t up and going. I got a message about 30 minutes later that they had to cancel my appointment – and would have to make it up on August 1. Boo. I don’t want this stretching out further than it has to. I have been thinking – I could ask them just to blast me in the head twice in one day to get me back on schedule. But then I thought, “we are working with my brain, settle down. Let the doctors do their thing.” I can’t control this roller coaster. I must trust.
I woke up this morning with a ton of hair on my pillow. The hair above my left temple is mostly gone. It is another wake up call that this is real. I washed my hair in the shower this morning and there were so many more hairs coming out. I can just pull hair out of the left side of my head.
I had a quiet afternoon yesterday. Jenn and the kids drove back to Scranton in the morning. My plan was to go to the movies in the afternoon and then get some dinner. Unfortunately for me, it cost $13.99 to see a movie on Sunday afternoon. I thought that was absurd. So no movie for me. I ended up going to a shopping complex and walking around some stores. I went to Target and Ross and then thought it would be fun to walk around Bed, Bath and Beyond to see what they sell that I have absolutely no use for. I found a ton of such things.
Can you believe this shit? Nothing but questions for it. At what point did someone say, “I sit on so many eggs – I wish there was something that would help me not break them”? How much did the person testing this seat cushion get paid to plop down on nature’s finest? Is there a proper technique/protocol for sitting on an egg? What kind of eggs were tested…chicken, quail, ostrich? Do they have some sort of insurance with purchase that will cover a new pair of pants for me when I sit on the egg and it breaks all over my pants? Isn’t there anything else they could sit on besides sitting on an egg? How many people actually sit on eggs? Is it a viral challenge that I have just not heard about?
There are always big decision that come along with cancer. A week or two ago one of the nurses gave me a bunch of sample tubes of Aquaphor. She asked if I had heard about Aquaphor. I said, “Well, sure. That is the stuff that burnt the crap out of my son’s butt when we used it as diaper cream.” We had tried different balms for his diaper-rashed butt. The one that completely didn’t work was Aquaphor. There were some serious, unforgettable screams when we were using it.
The nurse told me that I should apply the Aquaphor to my coconut when my hair falls out and my head starts to sunburn. It will help to keep my skin moisturized. However, I am in a bind about what to do. It is a big decision with lots of questions..If Aquaphor wasn’t good for my son’s butt, why is it good for my head? Am I wrong in referring to Aquaphor as ass cream…as in “Jenn, they gave me some ass cream to put on my head!”? Is Aquaphor meant for heads or poopers? What if it is meant for both??? (Is that a mind blowing question or what?). If Aquaphor is no good for Schwartz skin, should I get me some butt paste? Is there any left over Desitin from when Gabe was a baby? There are so many ass creams…which is best? Do I need booger wipes as well?
Friday morning we were able to catch up with some good friends from Scranton that had moved to south central PA a couple of years ago. They have children who are close to our kids’ ages. It was a good and refreshing couple of hours. The kids were playing at a playground – so we were out in the heat for awhile. The heat took a bunch out of us, but it was good to catch them!
We stopped back at my mom’s house for a bit in the afternoon and then headed to the UPenn hospital. Jenn’s college roommate was in the ICU at UPenn. She was married last month – and three days later diagnosed with stage 4 cancer. She has been at UPenn for the last month.
We got to the hospital early and went to visit Jenn’s roommate. Her father was in the room with her. He and his son-in-law were making the decision to take her off of life support. We had some time to spend with her father – trying to encourage him and speak words of grace and peace to him. We then went to the waiting room to catch her husband. Tried again to share words of grace and peace – and also – be sure they are taking care of themselves. We then walked a block away and got a quick dinner. We went into a CVS next store to get a care package for the family (a whole lot of chocolate). As we got back to the hospital, Jenn took the care package back to the ICU and I went to the radiation center.
It took me about an hour to get through radiation. Jenn spent the time with the family. I walked back to my apartment to get some clothes I needed for the weekend and returned to the hospital. The family decided to take her off of life support. Jenn staying in the room with her friend and her friend’s new husband. I sat in the waiting room with her father and in-laws. It was a very, very sad night. The doctor came into the room at 10:18 to pronounce the death. Jenn then came into the waiting room to tell the family that her friend has passed. Many hugs. Many “I’m sorry, we are very sad for you.”
Tragic, rough, very sad.
I am glad Jenn was there to be with the family. She has a strong pastoral presence for those settings.
I have been mentioning that one of Jenn’s friends was diagnosed with stage 4 cancer a few weeks ago. Sadly, she passed away Friday night. Please pray for her father and husband.
Please keep praying for Jenn and the kids. I think the boys are having a tough time figuring out what is going on. Emma has an understanding of what I am going through and is sad about it. The boys don’t understand and are showing their wrestling with things through acting out toward me. Jenn is carrying a huge burden as well – I am in Philly, she has the kids all week while working two jobs.
I finished my 12th treatment on Friday night. I am getting closer to number 15 – which will be halfway finished – all downhill from there! My appointment was at 6:15, but I got a call in the morning saying that they are running slow – could I come at 8:00. I learned that all of the proton machines were down in the morning – causing the delay. I still went to the appointment around 6:00 – they had tried to catch up – and the two people in front of me did not show up. I ended up in the machine only about 20 minutes after the original appointment. The radiation therapy went by quickly – especially with the long version of Stairway to Heaven on the radio. I was right close to the last blasting by the time the song was over.
One more trip to the blasting chamber down – 19 more to go. Some thoughts:
We were about 30 minutes late tonight.
No music tonight – the regular technician doesn’t work on Wednesday nights – so the lady who doesn’t have musical taste was there – and there was no music on. That gave me a chance to let the music play in my head. Started first with My Life is in Your Hands. (https://www.youtube.com/watch?v=AS6tQYJVO80) This song has been the theme of my cancer journey since I was diagnosed. After that I went with a mix of songs from Les Miserables. Les Miserables is indisputably the best musical ever. I can remember falling asleep to that music many nights when I was in middle school. When I waste time on youtube, I do one of four things: watch clips of the TV show Whose Line is it Anyway, watch clips of old Eagles or Phillies highlights, find performances of Les Miserables or watch clips of late night show – mostly Jimmy Kimmel or Stephen Colbert. Les Miserables is a good way to let 15 minutes go by.
The last two days have been a little weird as I get blasted in the head. I got a little claustrophobic yesterday. I wanted to breathe through my mouth about 15 minutes in, but couldn’t because the mask is so tight to my face and I couldn’t move my lips. Tonight – the mask with messing with my eyelashes. I think that everytime I blinked, looked up or looked down, my eyelashes hit the mask. It is a weird feeling.
I am less than impressed with the selection of food in the hospital cafeteria after 7:00 at night. My treatments have been around 6:00 pm most nights – and running late. Afterwards, it is nice to walk to the cafeteria, grab a bite to eat and something to drink. Most of the stations are closed after 7:00, so today I got a packaged roast beef sandwich on a pretzel roll and one of those Naked brand fruit shakes. The sandwich part of the roast beef sandwich was greasy/slimy/something awful. I managed a couple of bites. The drink tasted like Emergen-C – that crap that you convince yourself to take when you have a cold. It will lessen the length of the cold…right? Two sips of the drink and then into the recycling. I don’t want to be too much of a complainer, but thumbs down tonight.
Speaking of needing something to drink – holy crap – walking to and from the hospital today was like walking in a pool. So hot and sweaty! I put my shirt back on after treatment, and it was soaking wet. Yuck.
Anyway – happy 4th of July – be sure to eat too much and don’t blow your hand off with fireworks!