Thursday, March 25, 2010

In the Business of Making Stem Cells

Good news is that I no longer need the third round of ICE chemotherapy that we had originally been planning for. Because my "b" symptoms have subsided, there are no palpable lymph nodes, and I've bounced back well from the first two rounds it was decided between Dr. Dailey and my new oncologist down at Yale, Dr. Cooper, that we should go ahead into the stem cell transplant. It was explained to me that there is a delicate balance between giving not enough and giving too much chemo. Since I received the extra chemo administered in the pediatric regimen, I've gotten nearly as much as an adult would in three cycles. This should have effectively put me in remission. They don't want to give me too much more of this chemo at the risk of wiping out my bone marrow's capability to produce new cells. This makes me ecstatic as it means that I may never have to be an inpatient again!

So, here we are. This week I have been in the bone-wrenching business that is making stem cells. Starting Monday I have had a double-dose shot of Neupogen every day and I'll be continuing those shots through Sunday. The Neupogen is forcing my bone marrow to create great amounts of stem cells - so much so that they'll be pushed out of my marrow and into my bloodstream so that they can be fished out. I get the shots in the back of the arm. They don't hurt - just burn some as the drug is going in, but really not bad at all. I'm used to them as I would receive them during my ABVD chemo treatments, though this is twice the amount per shot so that means twice the amount of burning. I also thought it would mean twice the amount of bone pain as my marrow is being worked so hard, but that really hasn't been the case. Every once in a while I'll feel whopping pain in my back and in my hips mostly, but I'm able to kick it with a couple of Extra Strength Tylenol. I haven't had to fill the vicodin prescriptions I've been holding onto. However, driving to the cancer center every day for the shot has gotten old. I have never been able to leisurely sleep in since all of this is started. Every day there is some kind of appointment that I need to get to. But, you do what you have to do and that's it.

On Monday I need to be at Yale New Haven Hospital's Smilow Cancer Center at 7:15 a.m. for what is hopefully my first day of stem cell collection, pending my cell amounts are high enough. The next order of business will be to asses my veins and see if they are viable enough to use for the collection procedure. Otherwise, I'll have to have another type of catheter inserted in my chest, which they will do with local anesthesia that morning. Then I will be hooked up to the apheresis machine which will pull out my blood, snatch out the stem cells, and put the filtered blood back in. I'll come back and do this for however many days it takes until they have enough for them to store and freeze for later use. After that comes the scary, high-dose chemo and then the re-transplant of those stem cells I collected pre-chemo. These cells will help to rebuild my bone marrow and immune system which the chemo will have wiped out completely. To be blunt, without the stem cell rescue, the chemo would kill me.

Over the last several days I've had myriad of emotions starting from total fear and dread to where I am now, which is again focused on getting myself strong and ready to kick ass. I've had much blood work done to be sent down to Yale and have had to fill out lots of paperwork and read over consent forms, the most disheartening being the "Consent to Receive High-Dose Therapy with Stem Cell Rescue for the Treatment of Hodgkin's Disease." This document is a doozy and what sent me into a mild anxiety attack on Sunday. Basically, it's full disclosure of all the possible side effects that could occur, it gives some harsh statistics and numbers, and talks about the risk factors, which include leaving me susceptible to future cancers like untreatable leukemias.

But I have a lot going for me and I like to think that I'm not the "typical" patient. Overall, I did really well with the ICE chemotherapy and Dr. Dailey tells me that many of his patients who go through the stem cell transplant procedure find the ICE to be more difficult than the BEAM chemotherapy that I have to come. I'm hoping that this is the case for me. I am strong. I have been walking every day but the 3 dead-to-the-world post-chemo days, have been working out with exercise bands and doing yoga at home as I'm not allowed around the germs a studio would contain. I've been eating well - lots of organic and whole foods, and my blood cells have also made a good showing with time. Right now, my white blood cells are again so low that I'm neutropenic and am again on prophylactic antibiotics, but that's to be expected, and I'm 1 point higher than what I dropped to after the first ICE round. Tomorrow I'll find out if I need a blood transfusion to get me up to the required levels before I can go through with Monday's procedure.

To balance out the medical jargon, I've found it most helpful to talk with real people that have gone through this. It's helpful to hear that there's a light at the end of the tunnel and that the whole process really isn't that bad. Today I spoke to Ethan Zohn, the winner of "Survivor Africa." He's in his thirties and went through chemo for Hodgkin's Lymphoma, relapsed quickly, and was back in for ICE chemo followed by a stem cell transplant. I've been following his path all along as he was diagnosed in 2009 just a couple months ahead of me. I was connected with him through my friend Jack at the I'm Too Young for This! Cancer Foundation.

Talking with Ethan certainly helped to quell a lot of my fears and helped to reinforce my beliefs in a lot of mechanisms that I've been using to get through everything I've been through so far. He is also a big advocate of exercise, yoga, visualizations, meditating, and diet and gave me a lot of tips for how turning to them helped him get through his transplant. He told me how there were days that he wasn't able to eat hardly anything because of the nausea but that he would force himself to at least drink a shake or a smoothie to get something in and also was devout about downing lots of fluids. He also told me how important it was for him to get up and move/exercise every day even while in isolation. Some days that meant just getting the motivation to get to the shower, but when he was feeling a little stronger he had exercise bands and weights that he brought with him, would do yoga stretches, etc. and swears that this made such a difference for him. I'll be packing them in my bag as well.

He told me that he wouldn't kid me, that it's not going to be easy, but that it's manageable and you get through it. He told me not to be shy, not to try to be a hero, and to ask for what I need when I need it. He told me that I have science on my side and assured me that within 30 days he was back at the gym and walking outside and that he's feeling stronger and that he's there at any time if I have any questions. This is what I'm talking about when I'm talking about being part of this great cancer community.

During his treatments Ethan recorded video blogs for Here are links to a couple that I found helpful:


  1. Seriously, how lucky for Ethan Zohn that he got to speak with YOU! xoxo

  2. That's great that you dont have to go through the 3rd round of ICE :) woo :)
    I hope the apheresis and everything goes well, including the BEAM and that the cells take back when "reinserted" haha :)
    I'm personally still in the stupid waiting game, dumb docs dont have any answers for me :(
    anyway, stay awesome, I'm looking forward to your next post :)

  3. Hi Karin -

    I've been following your blog for a while, and I love how you write - it's so real and full of spirit! I was hoping to include a link to your blog in the next issue of my website's newsletter, the Practical Cancer Guide Newsletter. Please let me know if this is okay with you - and I hope Monday goes well!

    Ali Maloy