Full Steam Ahead!

Today, Paulette and I met at University Hospital's Seidman Cancer Center downtown with my transplant team: Dr. Boughan and Dr. Kapoor and Ann Verde, who is my transplant coordinator. We followed that up with a visit to UH Geauga for what should be my final dose of chemotherapy before the real fun starts in 10 days.

The real fun is, of course, the CAR-T Therapy clinical trial I will participate in.

First things first, let's recap the last week.

Dr. Friedman had told me the chemotherapy I was getting this time around wasn't as intense as what I received 10 years ago in my first at-bat with Mantle Cell Lymphoma. My memory isn't what it once was so I'll take his word on it, but I really, really don't remember feeling as awful as I did this week during any point of my previous treatment--aside from the high-dose chemo I received in the week prior to my stem cell transplant.

My first dose came on Friday, May 10. I felt awful the whole weekend and finally came around on Monday, just in time for dose No. 2. That dose left me feeling ill all week. 

Imagine how you feel when you have the flu. Multiply it a couple of times and add a migraine headache complete with eye-blocking auras and you'll know I felt for the week. The only times I left the house during the week were to go to the hospital.

I spent much of the day in my recliner and even spent several hours throughout the night in the chair to help me find some comfort.

We tried both Zofran and Compazine for the nausea but neither seemed to work well. Dr. Friedman then prescribed a third anti-nausea medication and a more powerful pain reliever. 

Friday was a rough day.

I had to report to the hospital for blood work and chemo and I had an emotional breakdown.

Honestly, I have controlled my emotions for the most part. The first time, 10 years ago, there were so many unknowns. Everything was so scary. 

Now, I have so much confidence in my medical team and seeing so many familiar faces only encourages my strength. I love those people and they provide a certain level of comfort.

But, every now and then, "it" just hits me.

Friday morning was one of those moments. I was exhausted--mentally and physically--from the long week. I was thinking ahead to more weeks of this miserable feeling. 

The good news is the chemo I received that day did not affect me the way the previous two doses had. The first dose was a long drip of Rituxan followed by Bendeka and Velcade. On Friday and today, it was just a shot of Velcade.

The shots do have side effects but they have been minimal, which leaves me hopeful that I might get out to cover a baseball/softball game or track meet later this week.

So far, today has been my most energetic day. I have had little to no side effects of the chemotherapy. I do have a horrible migraine, but I can deal with the pain. I'd much rather have it than to have no energy and constant nausea.

Now, back to today's meeting regarding my upcoming CAR-T Therapy, which is a clinical trial.

The ball is rolling...very quickly.

On Tuesday, I'll head back to the hospital for quite a few pre-therapy tests including an EKG, echocardiogram and some other pulmonary function tests. They need to be sure my heart and lungs are working well enough for the therapy. 

I'll spend most of the day downtown and even a bit longer now that they added a bone marrow biopsy to my schedule. Just what I needed...a long needle inserted into my lower back. I wonder if I can bring my vaporizor to the hospital? Cue the Cheech and Chong soundtrack.

We also received our schedule, which made this whole thing all too real.

I thought getting chemo again would be the kick in the nuts but I guess I've accepted chemo as a "normal" way of life now.

The transplant or CAR-T Therapy, that's what makes this all so real again.

Fortunately, my emotions were well behaved and we made it through the meeting and learned where I'll spend my summer vacation.

The good news is I won't receive any more chemo until I begin CAR-T Therapy. The bad news is May 30 is racing here.

I will head downtown on May 30 for T-cell collection. The procedure itself isn't anything scary. It's basically a blood draw where they pull the T-cells out of the blood and then return the blood back into my body.

They'll then take those T-cells and modify them in the lab. Once ready, they'll infuse them back into my body to fight the disease.

I am scheduled to be admitted to Seidman on June 5, the day my kids get out of school.

On June 6, I'll get my first of four straight days of chemotherapy to somewhat beat down my immune system.

Unlike the stem cell transplant, CAR-T does not require the immune system to be totally eliminated, which is a good thing. The chemo won't be as strong either.

Then, on June 10, they'll reinfuse my t-cells back into my body and begin the 12-14 day monitoring period.

Mainly, they'll watch me for signs of Cytokine Release Syndrome (CRS), one of the main side effects of CAR-T Therapy.

I will receive a drug called Tocilizumab on the same day as the infusion. Something about protein blockers and, well, I think I missed that day of chemistry, but you get the idea.

The three main drugs I will receive are the Tocilizumab, Cyclophosphamide and Fludarabine. The doctors gave me a packet on each drug. Like an idiot, I read the side effects. 

What a mistake. 

"This drug may sometimes cause deadly autoimmune diseases." "Tuberculosis has been seen in patients started on this drug." "Very bad and sometimes deadly infections have happened in patients who take this drug."

I should have treated those packets of paper like I did my high school homework and ignored them. I'd certainly have a better mental state at this point in time.

If all goes well, I should probably leave the hospital somewhere during the last week of June. That means I'll be hospitalized from May 30-late June, so about 3-3 1/2 weeks. I spent four weeks in the hospital during my stem cell transplant in 2009. 

It sucks.

I hate the isolation. I hate being away from my family. 

The good news is I'll have a pull-out couch and can have overnight guests this time so Paulette can stay or someone else can stay (no snorers) to keep me company.

To be honest, it's not the nights I'm worried about. When it's bedtime, I'm good. I would love some day time visitors, so let me know if you want to come out.

I'm not sure about the precautions they take with visitors, as far as masks, etc. I'm sure there will be a time shortly after the infusion where I'll have a weakened immune system. That's probably not the best time to visit.

I do have some new decorations for my hospital room.

Of course, I'll take Mr. Hare's Book of Happy Thoughts along with all the pictures Jackson's kindergarten class drew for me 10 years ago. I have some drawings from Chelsey and my niece's kindergarten class created a book for me too. The Eastlake North softball team also created a poster board for me. I have covered the team for the last few years and was happy to receive that.

Jackson also created a new version of the "Fish Tank," which is pictured at the top of the blog. That was pretty cool. For those of you who haven't read the old Caring Bridge blog, the Fish Tank originated when Jackson first visited me in the hospital. As an infant, he was hospitalized for a week or so with a staph infection. We took him to the hospital a few years later and showed him the fish tank he loved to see when he was a baby. His eyes would light up as he watched the fish dart from side to side.

When he saw I didn't have a fish tank, he drew one for me. I took it everywhere. 

Eventually, my friend, Karen Florio, turned Jackson's art into a piece of stained glass, which now hangs in my kitchen window.

I'll spend the next week or so preparing myself for the CAR-T Therapy and the long hospital stay. I have my reading material, my laptop so I can keep up my anti-Trump Facebook postings (come on, you didn't think you'd get a break?) and my iPad so I can Facetime the family and continue to learn Spanish and Chinese.

For now, I'm going to get ready for tomorrow's big day of testing. I never was any good at taking tests.