Monday, February 15, 2010

The Game Plan

Here's a breakdown of my current understanding of where this crazy road will take me over the next few months. There's lots that will be happening in between these milestones, but these are the highlights. I by no means have it all figured out yet and there are lots of variables on the timing of things, but after a meeting with my new cancer-kicking team at Yale, lots of online research and scans through my spiral-bound "Yale Cancer Center Autologous Stem Cell Transplant Program Patient and Family Resource Guide," this is how things are shaping up in my head:

-Now: More hormone injections, ultrasounds and blood work

-Wednesday, Feb 17
: Egg retrieval surgery, ICSI happens, and we'll know if the eggs fertilize by the next day - they'll incubate those that do fertilize and freeze the ones that grow to 8 cells becoming embryos.

-Thursday, Feb 18-Sunday, Feb 21: The last hoorah - recovering from surgery and trip to Philly to run up the Rocky stairs and eat a cheesesteak then down to Virginia to spend some down time with my college roomie and her fiancee.

-Tuesday, Feb 23-Thursday, Feb 25: Pediatric ICE high-dose chemotherapy begins as an inpatient at Hartford Hospital. It consists of Ifosfamide, Carboplatin, and Etoposide and is often used against recurring lymphomas and those preparing for a stem cell transplant. Because I am "young and strong" they are given me the higher dose high-dose chemo given to children because they can more easily bounce back from it. The chemo infusion will last over three days and I'll be in the hospital for all of it so that I can be monitored for my symptoms, given the correct amount of fluids, etc.

-Back home to recover for approximately two weeks: I'll be receiving shots of Neulasta during the off-time – same premise as the Neup shots I'm used to from the first go-around, but more hard-core.

-Once my blood counts recover I'll go back for a second and likely a third 3-day in-patient ICE infusion with two weeks recovery between each

-Down to Yale for a PET-CT Scan: The goal is that the ICE will have put me into complete remission (no signs of cancer). From here on out, I'll be under the care of Dr. Cooper and his stem cell transplant team at Smilow Cancer Center at Yale.

-One week's worth of Neupogen shots twice a day to skyrocket my blood cell count and force me to create millions of stem cells, the creators of all other cells. Normally there is only 1 stem cell per unit found in our blood as most live in the bone marrow. They are going to pump me up so hard with the Neupogen that the stem cells will be forced to push out into my blood and the goal is to get 5,000,000 per unit. And I thought I had bone pain during ABVD while my marrow was working hard. The nurse told me plainly that I may feel like I'm having a heart attack because the bone pain, especially in my sternum, will be so bad.

-Pending a high enough count, it's time for stem cell collection: I'll be hooked up to an apheresis machine for 2 two 3 hours at a time for 1 to 5 days depending on how quickly my body produces the stem cells. I'll have an IV pulling blood out of one arm; the blood will travel through the apheresis machine which will scan for stem cells and trap them inside of it; then my filtered blood will go back into my body via an IV in my other arm. This is all an outpatient procedure. What they collect will be bagged and frozen in storage.

-One to one-and-a-half weeks to recover.

-High-dose chemo part II: I'll go through six days of another high-dose chemo regimen called BEAM (Carmustine (BICNU), Etoposide, Cytarabine (Arabinoside), and Melphalan). This regimen is so toxic that the stem cell transplant is required as a recovery method from it. A normal body would not be able to rebound from it which is why a new infusion of blood cells is required for survival/cure. I'll go down to Yale to receive BEAM chemo every morning for three hours then come back home and a nurse will come to our house and administer it every evening for another three hours. I'm told that I will have a lot of diarrhea. In the words of my new oncology nurse at Yale, Erin, "I will think that I am going to pass gas, but it is not going to be gas ... ." I like her candid nature already.

-On day 7 of that week, my frozen stem cells will be re-infused into my now blood cancer-free body: Leading up to this we'll be counting up to it as in "Day -6," "Day -5" as I go through the BEAM. It all leads up to the day of the re-infusion: "Day 0," meaning that my body is starting from scratch and as I move forward it is Day +1, Day +2, etc. It's a rebirth in a way. I'll be starting from scratch with no abnormal, mutated cancer cells.

-Two-week hospital/hotel stay: After my stem cells are re-infused will be the most delicate and dangerous time. The effects of the BEAM will kick in and my white blood cell count will literally be down to zero. Added bonus, I'm told that my entire body will smell like a combination of "garlic and creamed corn" as a result of the preservatives frozen with my blood. It will take the stem cells some time to create the red and white blood cells and platelets that my body needs. Stem cells are the "mother cells" which in a way, "give birth," to all of the cells in our body. Half of patients that go through this spike a fever afterward and I will need to be checked every day and receive multiple blood transfusions. Plus, my immune defenses will be nonexistent. Because of this, I will be put up at a hotel that is five minutes from Yale so that I can easily get back and forth. I won't be allowed to be left alone and I won't be allowed to go to restaurants or any public places, just the hospital and the hotel for 12-14 days.

-Lots of antibiotics and scans for a long, long time

Overall, the ICE will be about two months and the stem cell transplantation process takes about 3 months so it's looking like June will be when I begin to get my life back again - new blood cells and all. I'm very ready to get started. I feel like I have a good understanding, at least enough to know the many questions that I still have, and I'm so very grateful that this opportunity for a second chance at beating this cancer exists. There is a 30-50% cure rate after high-dose chemo and stem cell transplantation and after Dr. Cooper met me and assessed my specific situation, he said I have a 65% chance at success for a forever cure. This is the same chance Lance Armstrong was given at the onset of his treatment and look what he's done since. I don't doubt for a second that I'll make it through this and come out stronger and more full of life than I've ever, ever been. It's just going to be one hell of a few months.


  1. holy crap and she maintains her optimism. you constantly keep me in check. we always always think about you. thank you so much for keeping everyone up to date. I met a guy the other day who did stem cell and he's been feeling incredible for 2 years now. we heart you lots!!!

  2. Karin - you have to be one of the most intelligent people I've ever met. Thank you for understanding all the information they threw at you, and sharing it with everyone who loves you. We'll be looking forward to celebrating your return to health at your next birthday in June! Let me know when our quartet can come in and sing to you ... Judy xoxo