Monday, November 7, 2011

Scan Storm

Two days after getting my less-than-desirable PET Scan report, we lost power at our home in Connecticut, along with just about everyone in our state. We had no heat, hot water, lights, internet, cable, or electricity. We remained out of power for 7 days. There are still 45,000 customers out of electricity here in Connecticut and I feel greatly for them: the scenario can be quite frustrating. The timing of it all was impeccable because for Craig and me, it actually provided a very welcome distraction from the realities of the news that I got. 

We spent the week in the comfort of neighbors' company with unexpected sleepovers, rotating dinners among all of our houses, lots of laughs and indoor camping. I got good use out of my long underwear and all of our blankets. It was confirmed once again that we have the best friends, neighbors and family. 

Lights out pizza party 
After a long day of doctor meetings at Sloan-Kettering on Friday, Craig and I came home to the beckoning beam of our driveway floodlight and the sound of our neighbor in our basement rewiring the electricity from our generator to our main switchboard. We came in to the heat pumping from our pellet stove and the house whirring with that buzz we all take for granted. It was glorious to be able to sleep upstairs in our bed for the first time in a week, rather than bundled on a couch or air mattress. 

The symbolism of it all was kind of eerie. The plug was pulled out of me for a while there, but there is still light. Yes, there is the dark light of hot spots on my PET Scan, but there is also the promising light that is new experimental drugs and a lymphocyte boost. All of that light came flying at me violently twelve days ago when I first learned the news. My friend Meredith's mother, Julie, generously drove me into Manhattan and killed time while I endured my PET Scan then went to meet with Dr. Sauter to go over the results right afterward. 

He walked into the room and said: "How's your back feeling?" and proceeded to rub the middle of it asking me if it was sore. I knew immediately what that question meant. He informed me that there were some hot spots on vertebrate on my spine, two new lymph nodes lighting up in my right chest, and that the spot on my right hip/sacrum had grown more prominent since my last scan. In short, it looks like the lymphoma is on the rise again despite my new immune system.

The good news is that more tests confirmed that I received a perfect graft from my sister and now have a fully functioning immune system again. I am completely off of immuno suppressant drugs. Her cells are within me thriving and doing wonders for me, as evidenced by how well my foot has healed – I am walking and hiking and working out on it. However, the graft between us was so perfect that her cells are in there living lovingly and comfortably. This is why I have not had any Graft vs. Host Disease symptoms: my sister’s cells and my own body have synced together seamlessly – everything that we hoped for, a rarity of beauty. Unfortunately, that also means that my body has not gotten the desired Graft vs. Lymphoma effect.  

The words swirled as Dr. Sauter pulled up my scan and we looked through it together, taking a 3D tour from my brain to my pelvis. I was doing my best to hold it together until he reached out and gave me a hug and I lost it.

I looked at him and said: “But I was supposed to go back to work on Monday. What am I supposed to do?” It was the first time that I have cried in a doctor’s office. He gave me tissues and we took some comforting breaths together. I think it was as hard for him to deliver the news as it was for me to take it. Understandably, we’ve grown close over all of this and he wants nothing but the best for me. He had been so hopeful along with me, but admitted that he was more worried every time he saw me and saw how well I was doing.  Ironically, from the allo transplant standpoint that wasn’t really a great sign and we both knew it. From a quality of life standpoint, it’s been fantastic.

So, forward we move. Craig and I went back to Sloan this past Friday to further discuss options and realities with Dr. Sauter and also with Dr. Moskowitz, my lymphoma specialist there. Between their two incredible brains, we will find the best next step. They each spent so much time with us going over the science of it all and the goals, possibilities, and statistics. I am incredibly fortunate to have such kind, compassionate and smart, smart doctors in my corner. I am now again held in the care of both of them and my case is being brought up to the lymphoma and transplant teams to pick the brains of all the Sloan-Kettering oncologists in those specialties.

The whole situation is confusing and disappointing. I’m very sad and have not yet decided what path to take at this huge fork. More research and contemplation is needed. I want to make the best decision for my survivorship. The first step in that research will be a surgical biopsy tomorrow at Sloan. They will be performing a CT-Scan guided biopsy to extract a piece of the bone in my right sacrum to be analyzed by the pathologists. My doctors and I want to confirm the enemy that we’re working against here. Clinically, it is presenting like it is Hodgkin Lymphoma again, but there is the chance that the cancer could have morphed into Non-Hodgkin Lymphoma … or something else. It has been more than a year since my last biopsy and I’ve had much treatment and donor transplant since then so it makes sense to check.

Pending the results of tomorrow’s biopsy, the vague proposed plan is to endure a few cycles of another treatment drug that I have not yet tried – hopefully a targeted therapy that will leave me with minimal side effects. There are still a few drugs that I haven’t tried and new ones are on the horizon all the time. Once it’s determined that I’m in a more sufficient remission from the disease, we can try what’s called a Donor Lymphocyte Infusion (DLI). This will be a super booster injection of more of my sister’s lymphocytes (a type of white blood cell that fights disease).

The DLI process would be as easy as getting a blood transfusion, as my blood is now her blood. However, my body will always be my body and therefore foreign to her cells. The purpose of this DLI will be to push my immunity balance over the threshold and essentially force my sister’s cells to go after the lymphoma. Unfortunately, my body will be the collateral damage as we essentially force Graft vs. Host Disease on me with the intention of keeping it mild enough to be treatable, but aggressive enough to ramp up the allo transplant effect. For the most part, the undesired Graft vs. Host Disease and the desirable Graft vs. Lymphomia effect run in parallel. There is risk, but also promise, to the procedure.

In the words of Dr. Sauter, I’m a great patient, but I just have a very bad disease. Fortunately, there is nothing that is of immediate danger to me and that means there is time to consider my options, or even wait to make a move if I choose to do that. I feel good, considering, and I’m very resistant to not feeling well again.

UConn Huskies
I have been enjoying many wonderful moments amid the tears that are hard to stop from falling. Highlights include dressing up as one of my favorite literary characters Lisbeth Salander to pair with my husband as Home Improvement’s “Wilson,” hiking to our mountain ridge lookout, taking in a UConn football game and getting to play with my niece and nephew.

A perfect setting to all of this chaos, most of the trees in our yard are snapped, scarred, and splintered from the snowstorm. Like them, I feel broken but still hopeful that I too will heal with time. Right now nothing really makes sense: 18 inches of snow in October? Golden fall leaves coated in white flakes? Halloween canceled? The cancer is back? Talk about a warped reality. 

"The Girl with the Dragon Tattoo"
Hidey Ho, Neighbor!


  1. I'm keeping my fingers crossed, crossed, crossed for you!!!!! hoping the DLI will do something to kick out those yucky cells you got going on, and leave u still feeling pretty decent.

    you know what would be cool? if the biopsy showed that your hodge had morphed into a wimpy form of hodge. lol. I know its unrealistic, but yaknow.

    Times must be super super tough for you right now, and there is probably little that offers you solace at the moment. It makes me think of what I wrote in a card I gave to my BMT oncologist on the eve of my post-SCT PET scan: "regardless of what my next PET scan shows, the past few weeks at home have been amazing and have made everything to this point worth it." I hope that having felt good for the past few weeks has given you at least a bit of a recharge to tackle this stuff once again.

    As always, hang in there, and I'm hopin with you (and the rest of the world) for better things to come :)


  2. following your story and keeping you in my prayers and thoughts. These trials are terrible and yet you keep rising like a phoenix, not unlike Lisbeth. Kick that cancer ass.

  3. Karin,

    I love the way you differentiate the shades of light in your post and happy to hear that your friends and family are the brightest light of all. You are in my thoughts and prayers.

  4. Well, it ain't fair but you're handing it amazingly well. As always, I'm stunned by your strength and determination. We're all pulling for you.

  5. Continuing to think of you.

  6. Karin, we've never met,but i know your Mom and have been following your journey through her.You are so strong and amazing!I'm sorry you didn't get the news you hoped for.You have a wonderful family to get you through this!! You are always in my thoughts and prayers and will continue to be.It must be so hard,but stay strong.
    From someone who cares!

  7. Karin! Am praying for a miracle for you!!!