Today we went to Rush Medical Center for my apharesis. I got comfortable on a hospital bed and made ready to sit there for the next two to three hours. They stuck IVs in both my arms and told me not to move them until the process was over. Blood was pumped out of my left arm, mixed with some anti-coagulant and sent into a centrifuge where the white blood cells were isolated and collected. The blood was then sent back into my right arm. This process isn’t painful but it is a tiring and you have to rely on someone else to scratch your nose.
After an hour and a half of this, my nurse gave me the news that the quantity of the specific type of cells they are collecting from me is in the normal range — but on the low side. This meant that instead of being done in another half hour, they calculated it would take a total of five hours and 20 minutes to get all they need. Yikes.
At any time during the procedure there was about a half a pint of blood out of my body. When it was finally done, all the blood in my body had been cycled out of me three times. They harvested about 300 milliliters of cells. I walked like a fawn for about 15 minutes afterwards but otherwise felt fine. That was my only shot at success. If the study sponsor doesn’t get enough of the specific cells they are looking for, then I’m kicked out of this trial.
I’d like to take a paragraph to express my love and appreciation to my wife, Tina. Not only did she sit there with me the entire time and scratch my nose. She did everything for me: fed me lunch, put headphones on me, put on music, adjusted my pillow, and when my bladder got too full to hold it anymore — yes, she did it all.
We are back in Atlanta now. Tomorrow I begin radiation and chemo.
We arrived in Chicago Thursday afternoon (9/15), checked into our hotel, and got some rest for our Friday appointment at Rush University Medical Center.
Today we met the Rush oncology team, led by doctor Aiken. They took a little blood for testing, did an EKG, put me through the standard neurological exam (hop on one foot, touch my finger to my nose then the doctors finger, follow the light with my eyes, reflexes, etc.). By the way, I pass this test every time with flying colors. Then they explained the clinical trial to us and fielded questions. He began with the bad. We’ve always known there is a 33% chance I can get placebo. There are a few milestones along the way where I could be disqualified, the first of which is the apharesis on Monday. We have one shot to get all the white blood cells required for the trial. Apparently the process failed for a couple of other patients. They were both small women. The doctor thinks I’m “stout” enough that it shouldn’t be a problem. If it’s not successful, there just isn’t time to do another one. Radiation and chemo typically need to happen between week four and six after surgery and we are almost at week seven.
All in all it was a good visit. The staff was incredibly accommodating and helpful. The team was optimistic and straight-shooting (see Heavy Stuff below, or skip it if you’re not comfortable with death talk).
More good news: The apharesis team said that I should load up on protein and calcium for Mondays procedure. They said I was all clear to eat just about anything I wanted and a glass of red wine wouldn’t be a bad idea either. This is great news considering we had reservations at Alinea tonight.
We had dinner tonight at Alinea — an amazing restaurant. The architecture, design, flavors, ingredients, creativity, presentation, staff — everything was phenomenal. Usually you need to make reservations months in advance. We got on the cancellation list and luckily someone must have cancelled. But Tina had written a compelling email to the restaurant and I think this played a part in our getting in. You see, the head chef and partner, Grant Achatz, had a stage 4 cancer of the mouth, from which he is fully recovered. It’s an inspiring story.
The meal was 18 courses and lasted three and a half hours. Eighteen courses of the most amazing, complex, creative dishes I’ve ever seen. Tina got the wine pairing and I got to sip on them without having to be covert. I just can’t describe how enjoyable the entire experience was.
At the end of the meal I braced myself for the (justifiably) steep check when the waiter informed us that the bill had been taken care of. All he would tell us is that someone called to take care of it and wanted to remain anonymous. We were floored. We can only say thank you here and hope the benefactor knows how much we appreciate the amazingly generous gesture.
I’ve been wondering how this cancer actually kills someone. So I asked Dr. Aiken and he explained. Typically, a GBM is discovered and successfully removed (gross total resection). Patients are monitored regularly. If there is a recurrence, can’t they just remove it again? Well, the answer is yes but here’s the deal: sometimes these tumors occur in an ideal location (as mine did). They are easy to access and not in critical parts of the brain. They say a huge chunk of your right temporal lobe could be removed and you’d be just fine. But the tumor could pop up in a more critical area and somewhere that is difficult to access. Removal can leave a patient in various states of… disability. It becomes a quality of life issue then. So we really have to make some tough decisions about where the line is that separates worth living or not. Needless to say this was a very difficult conversation for Tina to listen to. For me, not so much. Maybe that’s denial at work.