Too Low to Get Treatment

It's Wednesday, September 12th and it's time for my second treatment. Dale has to work, so I solicit Jennifer's assistance in going with me. She doesn't know how to play cribbage and has heard that's how Dale and I pass the time while the nasty drugs are seeping into my veins, so she agrees to accompany me.

Dr. Wendy's office draws some blood, and we talk with Dr. Wendy for just a bit about some of the weird side affects. Alopecia or hair loss isn't mentioned in the Adcetris patient booklet, but I'm assuming it's something like a conditioned response with my body. "Oh, this is chemo. Body, you know what to do. Shed all hair."

Then, Jennifer and I go join the circle of trust for my treatment. We set up the cribbage board and wait, and wait, and wait. I'm trying to teach Jennifer all of the intricacies of cribbage, so I'm not that conscious of how much time is slipping away.

(My sisters say that cribbage rules seem to say "Well, if it's the second Tuesday of the month and your name starts with the letter 'L,' give yourself two points." Hilarious!)

After about 30-45 minutes, one of the nurses approaches us. "Trish, your blood cell counts are so low that we can't treat you today. Instead, you need to get a shot of Neupogen every day for the next five days."

So, when I'm feeling absolutely miserable and have my blood drawn, my levels are great. But, when I feel good and am ready for another treatment, my levels are dangerously low. Weird!

They can't use Neulasta, which is the longer-lasting shot that stimulates my bone marrow to produce more cells because there's not the 15 days before my next treatment window that it needs.

I get one shot that day. Then, at 8:30 on Thursday morning, I get to drive down again to get another shot.

The American Fork office happens to be closed this Friday, so Friday, Saturday, and Sunday, I get to drive down to the Central Utah Clinic in Provo (directly west of UVRMC) every morning at 8:00 to get a shot. Yes, even on Sunday! Whew!

They're serious about that 8:00 a.m. time, I learn on Friday when I arrive at 8:12 a.m. instead. I have to wait about 30 minutes before they can finally give me the five-second shot. But I hear while I'm waiting that there were about 15 patients there that morning for their shots--most of them already in line by 7:55.

Note to self: be there early the next two days so I can be out of there earlier.

By Saturday, they don't have us meet them in the office. Instead, the nurses have formed an assembly line in the north lobby, where they have a list of names and a container of different medicines. You step up, announce your name and birthdate, they sort through the container to find your medicine, and give it to you. I was in the lobby for about 1.5 minutes on Sunday--total--because I was the first in line.