The allogeneic stem cell transplant is a go. After several attempts (this is the fourth), it is going to happen. I am being admitted to Sloan-Kettering on Thursday – as in two days – to start the process. The past two weeks have been full of travel and pre-transplant testing, preparation, paperwork, organizing, packing and lots of anxiety.
During the allogeneic (donor) stem cell transplant, I will receive my sister's stem cells, a type of immunotherapy. They will mature inside of me into new white blood cells and will replace my own "broken" immune system with her strong one. The goal is for her defensive cells to destroy and defend against any lymphoma cells within me or any that may creep in while her cells are settling in. I will get five days of lead-in chemotherapy (Fludarabine and Melphalan) along with some immuno suppressant drugs primarily to weaken my immune system enough to let hers in. Hopefully the chemo has some anti-lymphoma effect as well, but it is really the donor stem cells that are my next form of therapy.
I am not in "perfect" remission, but after much review from the top docs in the world it was decided that this is the best time and the best shot. I had a good response to my last therapy, considered a "partial remission," and may never get this clear again. My track record has shown that the lymphoma I have is aggressive and adaptable and comes back after every treatment drug even with an initial response to it. It's unknown whether my body could handle any of the few chemo regimens that are left to try without damaging it permanently and forever closing my bridge to transplant. So, here we go. The time is now: we've got to jump on the chance that we have.
I am feeling relatively strong right now, rising back from the very difficult clinical trial drugs. My sister is in the best shape of her life as she's been hiking in the mountains of Nevada all day every day for work. All has happened very quickly. I got the final word that we were pulling the trigger last Wednesday at 6:30pm and my sister hopped a cross country red eye flight from Vegas after her roommate had to drive into the boonies of the Spring Hill Mountains to get her off the campsite. She made it into Sloan-Kettering to complete all of her donor testing the next afternoon. She is here, safe and ready for action. My Sloan transplant doc, Craig Sauter, has been AMAZING in pulling strings to get the logistics moving so we don't give the lymphoma any longer of a window to grow back. I am extremely confident and comfortable with the team there and have nothing but good things to say about them.
On Thursday (Day -7), I'll get a minor surgery to insert a different type of catheter line in my chest so that I can receive many things into my body at once. On Friday I will start the lead-in drug therapy. In the meantime, my sister will start her Neupogen shots at home with my mom on Saturday to stimulate her bone marrow and push her stem cells into her blood stream.
After five days of chemo, Thursday June 16, will be transplant day (day 0). My sister will be hooked up to the apheresis machine at Sloan to pull out her stem cells and the bag will then be brought up to me on the transplant floor to be sent into my bloodstream. By the time I leave the hospital the hope is that I will have 100% Kristen blood ... pretty close to tiger blood.
My sister is a tough, capable and strong woman. She is a tattooed rugby player who chisels rocks and chain saws trees to blaze hiking trails for a living. She's worked and camped in the Southern California desert for 10 days at a time and now camps with her crew nightly in the Nevada mountains – one evening being so cold they had to do the penguin huddle for warmth. I have no doubt that her stem cells will kick some lymphoma ass once we get them in there and no doubt that she will breeze through this process. However, as confident as I am that she'll be okay, it doesn't make it any easier to watch her go through this and to know the pain and the worry that surrounds her. It's extremely difficult to watch my little sister endure any hardships and to think that I'm at the center of this one can be unbearable at times.
After the actual transplant day (day 0), I will be in an isolation room not allowed to leave for 3-6 weeks depending on how quickly my blood counts recover and if I am eating and drinking on my own. I can have limited visitors as long as they are not sick, nor been around anyone that has been sick, and they have to wear a mask, gloves, and gown while in my room. My parents and siblings are planning trips and I look forward to their companionship along with funny movie watching, Wii games, lots of writing and the visits from Integrative Medicine practitioners – I hear the foot massages they provide are fantastic! In all reality, as crazy as it makes me to even think about being locked up in that room, I'm sure that I'll be kept very busy with doctors, nurses, PCAs, physical therapists, dietitians, social workers, art and music therapists, meditation therapists and all that comes with a prolonged hospital stay. I'll have my laptop and internet connection, which will certainly be a saving grace. And of course, my husband with me by my side.
Once released from the hospital, I'll need to stay in NYC for another 60-100 days so that I'm able to be closely monitored. I'll need to go back to the clinic for checks very frequently. Craig will be hopping around the city for overnights in the beginning, but once I'm discharged, we'll be staying together at the American Cancer Society's Hope Lodge. Summer in the City it is! Once I'm out of the hospital, I'll be able to be outside and do things, often with a mask and gloves and super precautions, but I will be able to be active and recoup. I see a lot of time on blankets in Central Park in my future.
It will be tough and of course there is some fear associated with the risks, especially of graft vs. host disease that can come with my sister's cells attacking my body's healthy cells and systems, but I am very hopeful. Again, she is a perfect match to my DNA so the risk is much lowered. The doctors will constantly be controlling her/my immune system with immunosuppressants as things progress. Dr. Sauter explained it like letting a team of horses in – they'll be out and running, but we'll have the reigns to pull back on if they go too wild. It'll be a delicate balance of giving them enough, but not too much, freedom to do their job. There have been many signs revealed to me that this is the right time to throw my ace in the hole and take a chance at a forever cure. I have a lot of positives going for me and my particular case. Despite being nearly seven months since we first tried for this transplant, I actually feel stronger and more ready than ever. It didn't feel right those first several times but now it does and that must mean something.
I'm certainly exhausted and highly sensitive, worked up and unstable as I try to get everything in order, but with each day and each check on the To-Do List, all becomes less menacing. I will miss our home, my comforts here, and my Sammy dog very greatly – that will be one difficult goodbye. But mixed into all of this week's preparation has been some wonderful moments as well. Craig and I floated our kayaks down the river. Sammy and I hiked all the way to the ridgeline lookout (something I haven't been able to do in quite some time. It took me many rest stops to catch my breath, but we did it). I've been reunited with my sister. The weather has been unbelievably perfect: hot, sunny, light breeze. I saw one of my favorite artists Ray LaMontagne play in Central Park and I met John Mayer there, touched his arm and told him I loved his music. Friends came over with an incredible meal for us. We got to spend time with our ridiculously adorable niece and nephew and catch up with my mother-, sister-, and brother-in-law. I've had daily breakfasts in the morning sun on our porch. I'd say that's a pretty good start to summer.
I have a day-and-a-half of freedom left and a lot of clothes to pack, but I'm learning that I don't have to figure it all out right now, everything will work out in its own time. I'm grateful that I have this shot and I'm going to take it no matter how scary it is. I know I can handle it now. The future holds too many unknowns and the past has left me with many scars to deal with. I don't want to miss my train out of this. Let's roll.