Ready or not, I’m back in Iowa City, preparing to undergo my second modified stem cell transplant in less than four months. I was at the University of Iowa Cancer Center all day for tests.
It was more grueling than I expected. Except for almost an hour wait, my second PET scan in two months went off without a hitch. The staff here didn’t want me reading or working on the computer before the scan, especially since the lesions in my skull are a special focus.
Apparently they’ve studied the issue; stimulating one’s brain while the radioactive glucose is circulating can create false positives. It’s attention to detail like this that won me over in the end. The team here really knows their stuff!
As the long day wound down, Ryan, the tech operating my heart echo ultrasound, saw something that concerned him. While he sought out the counsel of others in the department (and set up an additional test), I couldn’t help thinking, “What if they find something that makes transplanting again too risky? How awesome would that be!”
Warped thinking! Alas, other than my cancer, I continue to be in excellent health. I traveled for ten days and so far, I’m not sick. It’s a sign. No escape now!
Several friends and readers have asked what my schedule is going to be while I’m here in Iowa. Always subject to change, this is what I know:
Thursday 10/15/15 Pre-transplant testing
Friday 10/16/15 See Dr. Tricot, PICC line outpatient surgery
Saturday, 10/17/15 Check into BMT Unit, Velcade and dex infusions,
oral thalidomide and high dose melphalan IV
Sunday, 10/18/15 Thalidomide and dex, rest
Monday, 10/19/15 Repeat Saturday’s four drug regimen
Tuesday, 10/20/15 First two of four stem cell infusions
Wednesday 10/21/15 Stem cell infusions three and four
I’m not sure if Day Zero will be Tuesday or Wednesday. I’ve been told it’s very unusual for them to be dealing with so many bags of stem cells. Since it only took me four days to harvest almost 8 million cells this summer, many of the bags are a result of the 12 day long ordeal I faced trying to collect 9 million cells at Mayo Clinic in Rochester, Minnesota, way back in 2007.
Of course, that was before Mozobil. It’s expensive (the price is coming down, but I’ve heard it can still run as high as $30,000 a shot) but it did the trick this summer. Next week the plan is for the nurses to infuse me with over 8 million of my own stem cells; so many it will take two full days. That’s 22 different bags of cells!
Normally this is an anticlimactic part of the process. But I passed out in July as they infused me with 18 bags of cells. I can barely remember a thing.
I think my body had just had enough; three days of testing, an ungodly amount of growth factor, followed by four days to harvest, then melphalan, surgery to implant three different catheters, an infection and all the rest. Staff reasoned it was a reaction to the preservative in so many bags of stem cells.
I was an outpatient this summer, yet I spent 14 days in the BMT unit. So this time I’ll start as an inpatient. There are several benefits to this. First, I won’t feel like a yo-yo; in and out of the hospital. Secondly, all of the excitement will take place bedside, in my own room. Last time I was literally stuck (pun intended) in a small waiting area in the hall until I crashed and they admitted me.
Rooms are at a premium here. I was advised it would be better to check in and stay; otherwise there may not be a room available on the main floor if I need it.
Finally, being an inpatient takes away the stress on me and the caregivers by committee I employed this summer. Outpatients need to have a caregiver with them 24/7. Although it’s nice to have friends and family around, patients that stay on the unit aren’t required to have a caregiver present.
What happens after next Wednesday? I know I continue to get thalidomide, Velcade and dex for five days. I’m just not sure which five days.
It goes without saying I was pretty sick this summer. Diarrhea for a month and unable to eat much for two weeks. My newly implanted chest power port became infected and needed to be removed the following week. I was on IV antibiotics most of my stay–and an additional week after returning home.
Fortunately were able to avoid the waves of nausea that haunted me following my first SCT in 2011. One reason: helpful tips I received from readers and other patients I interviewed for the book I wrote about stem cell transplants the next year.
Look, I understand the risks I’m taking. I know I’ll be uncomfortable. I haven’t felt like I’m nearing recovery from this summer’s SCT until this week. This week! My legs are finally getting stronger. I climbed a set of stairs today and didn’t need to push hard or pause on the way up. My GI tract is almost back to normal.
I lost five or six pounds of muscle last time. I was already too thin!
I have hope I can do it better this time. I just returned from buying an exercise mat and bands to use during my stay. Unless I’m a lot sicker than this summer, I plan to do whatever it takes not to waste away again.
I know, I know. I can hear the heads shaking and experienced SCT survivors smiling knowingly: he’ll be singing a different tune in seven to ten days.
I don’t disagree. Doesn’t mean I can’t try.
Feel good and keep smiling! Pat