Saturday, March 12, 2011

My stem cell pre-test days

I'm getting ready to undergo an autologous stem cell transplant (the kind of transplant where the patient donates his own cells for later implantation). I had several appointments over the course of two days at Vanderbilt in order to figure out how my lymphoma is responding to the preparatory chemotherapy, to determine if I am healthy enough to have a stem cell transplant, and to establish baselines.

I was very grateful to have my precious wife with me throughout. She's a trooper. She schlepped all the papers and took notes and made sure we got home safely.

On day 1 (Thursday), my first appointment was at 9:30, so we ate breakfast and left home by 6:40. (Nothing else to eat until after the bone marrow biopsy.) With a detour for construction, we got there just in time for the 9:30 appointment. This appointment was with an insurance specialist who had done the research and knows that BC/BS will pay for the treatment with some copays and deductible, but won't pay for lodging during the 40-day treatment time. Vanderbilt has free lodging if we can get in, so maybe the lodging won't be a problem, either.

Our second appointment was with the social worker, who asked questions about the family, and whether I was ever depressed. She wanted to be sure I had a caregiver and a backup caregiver. She gave us a DVD that describes the stem cell process from a logistics perspective. We signed up Leilani as the primary caregiver, but we still need to find backup caregivers.
Backup caregiver job description: provide relief to the main caregiver for two days in a row so she can get rest and take care of things at home, or in case she gets sick. Live in the apartment with me and provide company, transportation to/from the hospital and accompany me to all my appointments; monitor for signs of fever and call/transport to hospital; take care of all needs in the apartment (meals, cleaning). (Apartment is furnished with kitchen, TV, wifi.) I should be able to dress and bathe myself, and I probably won't be throwing up thanks to powerful anti-nausea drugs. You can bring a laptop and do work while you wait with/for me at the hospital, but wifi and 3G are limited.
Next was a CXR - chest x-ray. Quick and painless.

Last appointment for the day was a bone marrow biopsy (BMBX). I was hungry all day because of this appointment (because of the sedation). They do BMBX differently at Vandy than they did at Huntsville. They only use "moderate sedation," meaning a smaller dose of Versed. Perhaps if they had waited a little longer for the Versed to take effect it might've gone better. I didn't feel a thing as I lay on my stomach and they prepped and numbed the top of my hip. But I groaned aloud as they actually extracted bone marrow three times, each time the nurse saying "I'm sorry." The pain lasted only for the second or two that they were actually extracting the marrow. Then I fell asleep. About 30 minutes later, they plopped me into a wheelchair, gave me extra-strength Tylenol, and handed me over to Leilani, who wheeled me to the door. I was able to walk with her the rest of the way to the car n the parking garage.

We had pricelined a Hampton Inn just a couple miles from the hospital. Usually $180/night, we got it for $50. (After taxes and mandatory parking fee, it was more like $90.) Thank you to our generous friends who gave us money to pay for such things. We strolled in the cold and slight drizzle to the nearby Joe's Crab Shack (the sedation had worn off so I was sore but practically normal). Since I had a PET scan the next day, I had to have low-carb food, so I ate a Cobb salad without avocado and with snow crab legs. It was good, but Leilani's crab nachos looked and smelled better. To our friends, thanks again!

Day 2 (Friday)

[Turned on the TV and saw the Japanese earthquake news. Oh God, have mercy!]

Breakfast (no carbs!) at the glorious free breakfast buffet at Hampton. I had to pass up everything but the eggs and sausage. No waffle. No yogurt. No juice. At least Leilani got to enjoy the treat. Nothing else for me to eat or drink until after the PET scan.

First appointment at 9:30 was pulmonary function test (PFT). (Leilani dropped me off so she could drive over and check out the Hospitality House lodging.) Some of the chemo drugs they use in stem cell transplant could have lung toxicities, so they needed to get this baseline. I sat in a chair with a clip on my nose and breathed through my mouth into this snorkel-like mouthpiece attached to a machine that measured my air capacity and chemistry.They had me to inhale as deeply as I could, and exhale as deeply as I could. That was remarkably hard work!

Next was labs. The nurse put in an IV and drew about 20 vials of blood.

Next appointment was with the stem cell nurse practitioner, Katie. She asked all the background questions and provided us with a draft calendar of events. Assuming that the PET scan I have this afternoon shows good progress, we start the stem cell process on 3/23 and go until about 5/11.
The stem cell process. The first week, they give me drugs to put my bones into overdrive and produce more stem cells. Then they harvest those stem cells from my blood through apheresis and freeze them for later. A few days later, they give me high-dose chemo for four days straight, then they let me rest a day and then they inject my stem cells back in. For the first two weeks, my blood will be weak-no white cells, low platelets, low everything. But then the stem cells will just automatically know where to go and they'll "engraft" and restart my immune system. I'll probably need blood transfusions during this time.
We then met Dr. Jagasia, one of Vandy's six stem cell transplant doctors. He said we're looking at about a 40% chance of cure through this process, depending on what today's PET scan shows. Chances are  better if the PET scan shows little or no activity. Honestly, I don't like those odds, but this treatment is my best option.

Next was an echo cardiogram. It's an ultrasound of the heart that took about 30 minutes. He imaged each of my heart's valves and measured my heart's ejection fraction, a measure of the heart's ability to squeeze.

Last was the all-important PET scan. After injecting radioactive sugar, I rested in a recliner for about an hour. Then they scanned me in the machine, looking for where I might be glowing. That got done at 5:00.

Leilani drove us to the nearest Cracker Barrel on our way home. Thanks again to our generous friends!

We got home at about 8:30 Friday night.

2 comments:

Marla said...

Wow! That is a huge commitment to seek medical treatment. But I don't guess you need me to tell you that. It just gives us a better idea of how to pray for you specifically and for your sweet family. Thanks for sharing.

Anonymous said...

Thanks for capturing your thoughts, feelings, and experiences through this blog, Andy. We are praying with you.