The Diary

Started out at Banner Gateway Medical Center where the techs installed a double port into my jugular vein. I was a little apprehensive but it was amazing. Nancy drove me across to the cancer center. They had our room set with the Apheresis machine. It draws blood from one port into a centrifuge that separates the blood into different levels based on weight. The nurse adjusts the machine to draw T-Cell rich blood cells. The remainder of the blood is pumped back into my body. The process takes 3 to 4 hours. Bring a book or iPad. The transport team is responsible for getting the blood safely to the lab in California. It will be refined, re-engineered, and grown for a couple weeks before shipping back.

New medications were sent to my local pharmacy by my CAR-T pharmacist. Things can get confusing with multiple pills taken different times of the day. I put together a spreadsheet that included all of my vitamins and supplements. You have to use it as a checklist when you take your pills. It can get pretty confusing.

Met with my CAR-T team. Brian, the program coordinator, gave me my schedule and reviewed my binder to give me additional information. I signed releases and other paperwork to get the ball rolling. Haley, the pharmacist, went over the new drugs and gave me an updated spreadsheet. She also let me know which supplements I needed to discontinue during the treatment. Dr. Ulrickson, my oncology and hematology expert, answered questions about my immune system and how it will be affected after my hospitalization. I feel like I am in good hands.

PICC line installed at Banner Gateway Medical Center to start the day. Then drove across the parking lot to Banner MD Anderson Cancer Center for my first chemo infusion. Two more days of chemo followed by two days getting Neupogen shots before I enter the hospital to get my energized T-Cells back.

Met an old friend. Bob, in the infusion room. He's been volunteering here for years. The clinic stopped using volunteers in the unit because of covid restrictions. He's back now doing what he does best. The staff and patients love him. I get my T-Cells back in 4 days.

Spending three or four hours with my son Nick and some awesome oncology nurses isn't too bad. But next time I want to see more Cardinal shirts and less Seahawk shirts. Some headaches but a couple Tylenol solves that problem. Go Cardinals!

Visited the cancer center for Neupogen shots yesterday and today. Yesterday the side effects from my chemo started kicking in. Nausea and constipation are not a good mix. Good news, they gave me meds for those side effects and things were resolved before revisiting the cancer center today. Tomorrow, they will let me know when a room opens up. Then I will get my T-Cells and remain in the hospital while they manage the side effects of this treatment. I should be out in a couple weeks or sooner.

Slept in our own bed last night. How sweet it is. Returned to Banner MD Anderson Cancer Center for labs and assessment by an NP or PA from the team. I was a little shaky from all the drugs and lack of movement the last couple weeks so Nancy grabbed a wheelchair for me. My brain isn't as sharp as usual. You'll see I get tongue tied during my video. Maybe it's a little neurotoxicity. They said everything looks good.

Our first day away from the hospital and cancer center in weeks. We don't need to return to the cancer center until tomorrow morning for labs and assessment. Good day to sleep in and relax. Read and watched college football. Watched the Arizona sunset with Nancy tonight.

Two days ago, I felt I needed a wheelchair to navigate from our car through the cancer center for labs and my appointment. I felt a little shaky. Maybe is was a combination of all the meds and lying around for two weeks. Today I was able to get around on my own two feet. Labs looked good except I was low on potassium. The nurse gave me a pill. The physician assistant reviewed my labs and viewed my tumor. She said I am on track. The T-Cells are doing their job. I need to continue to keep moving and drink enough water (4 - 16 oz bottles per day).

We had a lot of trick or treaters came to the door tonight. My wife passed out the candy. Next year will be fun because we'll get to visit the kids and grandkids to see their costumes. It's not fun living in a bubble but we are making the best of it.

More energy today. Learn to manage your meds. You should get a checklist from your CAR-T team pharmacist. Go through the same process each time you are scheduled to take meds. I have my pill bottles in a little bin with the checklist. I take pills from each bottle and put them into a small Dixie cup turning each bottle upside down after I pull each pill. I also numbered the bottles with a Sharpie pen. It is easy to get confused if you don't have a system. Don't take calls or allow yourself to get distracted while you are doing this. Check off each bill on the list after you take them. This is my system. You might have a better way but you need to figure it out beforehand.

Reinforcements arrive from NYC. My brother Ed flew in to help support us. The meds I take prevents me from driving. There is still an outside chance of a neurotoxic event for up to 60 days after the infusion. So my brother can drive me around and rescue me if my brain goes bonkers. You are required to live within 30 to 40 minutes from the cancer center in case of emergency. Fortunately I do. Some people move into the Marriott Courtyard across the street if they live too far away.

I showed my Incentive Spirometer. You will get one when you go through CAR-T. It helps you exercise your lungs and prevents fluids building up. When CRS hit me, I knew it because my lung capacity was impacted and I could see it when using my Spirometer.

Back to Banner MD Anderson Cancer Center for labs and meeting with PA or NP to see where things stand. I feel good. I am on track. But my hair is starting to look like Gollum's from Lord of the Rings...MY PRECIOUS.

PET Scan day. Okay they suit you up and bring you to your private room to inject a radioactive solution into your body. They give you an hour to let it circulate before the scan. Note the many caution signs. The solution adheres to cancerous cells and lights up so the doctors can see if the treatment is having an impact. You usually have to wait for the radiologist to review the scan and forward it to your doctor. Chances are that you won't know the results for a few days.

HIGH ANXIETY! 2nd PET Scan 90 days after CAR-T. Okay they suit you up and bring you to your private room to inject a radioactive solution into your body. They give you an hour to let it circulate before the scan. Note the many caution signs. The solution adheres to cancerous cells and lights up so the doctors can see if the treatment is having an impact. No cancer! Hooray! Make sure you drink a lot of water to allow the radioactive substance to flush through your body. No, you won't glow at night if you don't.

IVIG boosts my immune system by infusing a donor's healthy antibodies into my blood stream.

For me, this was great because it helps me through cough and cold season. It is usually delivered monthly. Everyone's immune system operates differently. For me, my labs continued to show weakness so my doctor recommended it.

My dear wife, my ultimate caregiver, ordered custom wrist bands supporting my cancer fight and sent them out to family and friends. Each day while I was in the hospital she brought more pictures to add to my album. This was a loving way to show that I wasn't alone. This video explains the process and shows some of the many people that showed their support. What do you think? Let us know if you have any other ways you've been supported or how you've been a support to someone with cancer.