Day 1: Déjà vu

Day 1 of summer camp, also known as CAR-T therapy got off to a familiar start.

One request I made of my transplant team was to keep me from sitting at the hospital all day after having my PICC line installed as we wait for a room to open up.

Back in 2009, when I had my first stem cell transplant, I went in early in the morning to have a port installed in my chest. I then waited for about eight hours in the basement for a room to open up. That experience had a terrible effect on my mental health as I began a month-long hospital stay.

I didn't want a repeat of that so I asked to do what we could to avoid it.

No such luck.

There was some foreshadowing of the problem on Monday when I met with Dr. Boughan for the last time before treatment started. As I sat in the examination room, I heard her asking about me and she told the transplant coordinator she didn't see me on the schedule for admitting on the upcoming Wednesday.

It was true, I wasn't there.

I was then added as the fourth admit for the day. 

The problem was, as of Monday, the transplant floor had 26 rooms and each was occupied. 

It doesn't seem easy to schedule the transplant floor. I'm aware of this because it's never known when a transplant patient will be discharged due to the nature of the treatment and each person's immune system responding differently.

There may be a target date but the odds of hitting that can't be very high.

As a result, I didn't get a room until 6:30 p.m.

It was a long, frustrating day.

We started with lunch in the cafeteria after my PICC line install and then decided to head over to the Natural History Museum. We returned to the hospital around 3:00 p.m. and at that point, I emailed the transplant coordinator for an update.

She asked if I had called the bedding department for an update.

Fortunately, earlier in the day I had bumped into one of the nurses I have seen each time I was here for an appointment and she updated me on the CT scan I was supposed to have and how I would be notified about my room. 

Until then, I had no idea how I'd find out about the room. That was another oversight by my team, which by that point the list had been growing.

On Monday, I was told they'd call in a prescription to my pharmacy for some mouth sores that were developing. 

As of today, still no prescription.

My transplant coordinator responded to my email and said she had an appointment with the team at 4:00 p.m. and would look into the room situation. By then, Paulette had had enough and decided to call.

I'm not sure what she said but I can imagine.

Anyway, at that point, I decided we were going to go do something fun with the kids rather than to wait this out so we headed over to the Art Museum.

After checking out the first floor, I needed a break so I sat down on a bench while the rest of the family headed over for a snack.

I had a million thoughts pass through my head.

Ten years ago, one thing that really helped me get through eight months of chemotherapy and a month-long stay in the hospital for the stem cell transplant was the fact I had full confidence in Dr. Friedman and his staff and Dr. Cooper and her staff for the transplant.

Dr. Friedman is a rock star. If he's supposed to call or email, you're getting a call or an email. If he's supposed to call in a prescription, that prescription is going to be there.

As I sat on that bench in the Art Museum, I began to question my current team. From the missed prescription to the failure to add me to the schedule and to now enduring the long wait for a room after pleading to avoid that, I wasn't sure I wanted to continue down this path.

I thought about options.

There was the bad situation I was in and maybe some worse options but I was close to talking myself into heading home rather than back to the hospital.

Then the phone rang and it was a 216-844-XXXX number. I knew who it was. 

I didn't answer.

My mind was made up. I was going home. Maybe I'd head over on Thursday to talk to Dr. Friedman. Maybe I'd call the Cleveland Clinic. I wasn't sure but I knew I didn't want to wait any longer. This wasn't how I wanted to start another 3-4 week stay in the hospital.

Paulette and the kids returned and she asked if there was an update. I told her they called. She asked why I didn't answer and I told her how I felt.

If you know Paulette, you know she has a way of telling you what to do without really telling you what to do.

What sounded like, "Honey, I know you're frustrated but this is the plan and this is the best thing for you," was translated by my brain as, "Get your ass up, get back to the car and we're heading to the hospital or I'm going to kick your ass."

She was right. 

This is the best thing for me and here I sit. It's 3:45 a.m. on Thursday morning and in a few hours I'll begin the CAR-T therapy that could put an end to my marriage to Mantle Cell Lymphoma or at least extend my time with it in remission.

We got into my room, 3010, right around 6:30 and the kids helped Paulette unpack my two suitcases and they organized and decorated the room. They hung out until about 8:30 and then I kicked them out so they could get home and take care of my dog.

We didn't get into the room in time for me to order dinner from the cafeteria so we had to use Uber Eats to have food delivered.

Paulette will work from the hospital on Thursday so I'll have company most of the day.

As of now, I'm still not connected to any machines. It's basically just a sleepover until my treatment begins.

I did take a handful of pills. Some were to prevent seizures others were to prevent the buildup of uric acid and others had different purposes.

My TV isn't working yet but I do have a selection of movies so I decided to watch Invincible for the 97th time while I did some reading and writing.

I finally decided to call it a night right about midnight.

I got tucked into the bed and cuddled up just in time for the nurses assistant to come in for vital signs.

That took a few minutes and I once again tried to get some sleep.

The bed is really cool. It's a self-inflating air mattress, so when I move or roll over, the bed quickly inflates to even things out.

Whoever invented it deserves a few throat punches.

This thing is miserable. You move and it inflates. Even when you don't move it decides to inflate. It's frustrating.

If I wasn't so lazy, I'd figure out how to pull out the sofa bed and sleep on that.

I did forget my pillow and comfy blanket so I'm stuck with the hospital issued bedding, which didn't help my cause.

I've had three different nurses since 6:30. All seem nice and one attended Kent State, so we have that in common. 

My morning should start around 6:00 a.m. with more vital signs and my nurse told me during the 3:00 a.m. vital signs check/blood draw that I would be hooked up to fluids in the morning to prep me for chemo, which has yet to be finalized. It should happen at some point early in the afternoon.

I'm hoping to have my TV fixed and my chair swapped out for a recliner, which would certainly help my mental state.

On Facebook, a friend asked for the address to send me goodies. The address is:

Seidman Cancer Center, 11100 Euclid Avenue, Room 3010, Cleveland, OH 44106 

I'm pretty good on snacks and drinks and books and puzzle books. Cards would be great and uplifting and I do go through Muscle Milk pretty quickly so if you are looking to send something, don't go overboard.

I can't tell you how appreciative I am of all the well wishes and support I've received from everybody. I think the mental approach to all of this is just as important as how my body responds to the treatment and you folks have done such a tremendous job of helping out. You'll never know just how much you have helped.

Thanks to Rachel Kumher for her gift box we received today--complete with a giant copy of the Mueller Report--and some other goodies and I also want to thank John Hruska and Sheila McGarry for dropping off the Irish stew on Sunday. It was delicious and great to catch up with some old neighbors.

Many people have asked about visitors. I'm not exactly sure yet on full visitation hours and rules but I believe you're OK to visit until about 9:00 p.m. I start chemo on Thursday and that will run through Sunday. My well-being will certainly be affected and I'll be susceptible to infections and fevers, etc., so please do check with me or Paulette prior to visiting.

I would hold off on any visitation plans from Monday, June 10-Friday, June 14. I get the cell infusion on the 10th and the greatest risk for the side effects is up to five days after. During that time, Paulette will be with me pretty much 24/7.

It's now 4:05 a.m. and I'm ready to again attempt to sleep for a bit. I know from experience I won't ever get 7-8 hours of sleep at one time. The plan is to sleep when I need it or when my body tells me it's time.

Otherwise, I'll occupy myself with my Spanish lessons, learning the guitar, and reading from one of the 10 books I packed. I'm also doing some writing and have some ideas on some projects I'd like to work on in the future.

But, I'm taking everything as it comes. Minute by minute, day by day.

Here's a quick untitled, unfinished poem that came to me as I sat in my uncomfortable chair and listened to the noises coming from the hallway. It's a silly AABB rhyme scheme. I personally prefer free verse poetry, but this will have to do.

Anti-slip socks
A door with no locks

The infirm crowd the halls
As beeping machines echo through the walls

Fight, fight to survive
All I want to do is stay alive