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Tuesday, September 27, 2011

September Setbacks

Reunion Faces
One thing I feel tremendously grateful for is that our wedding—and the entire time I spent in Mass, reuniting with friends and family—was completely carefree. Cancer couldn't have been further from my mind. All I was thinking about was celebration, and the feeling of coming back full circle to greet the people I'd never gotten a chance to say goodbye to in the first place.
Of course, everyone had the same question for me: when are you coming back for good?
"Oh, about six months," I'd say casually. "Just gotta go back and get this stem-cell thing done with, snip-snap, and as soon as I've recovered I'll be back! Probably right around the end of winter, don't see a need to rush back for February, ha-ha."
However, there was a hidden subtext in my response that I didn't understand at the time. That subtext was: This cancer is in the bag. I've got this under control. It's all going to go exactly as planned, I'm sure of it.
The thing is, five days after we returned to California, I learned that cancer is never in the bag, except maybe several years into remission. Or perhaps longer than that, I'm not sure. I have no control. Plans are made to be changed. And nothing is guaranteed.

On Thursday the 8th of September, the day after I returned to Visalia, I had my third PET scan which was intended to clear me to progress on to my Stem-Cell Transplant. The following Monday, Sept 12, I had my second bone marrow biopsy, which was scheduled with the same purposes. So nonchalant and un-preturbed did  I feel that I'd actually laid there ass-up on the table singing I've Got You Babe to Annie while the doctor plunged for marrow.
Everything was going swimmingly until my Oncologist left the room to look up my PET scan results. When he returned, he placed a hand on my shoulder and said, "I'm sorry, but your PET scan results are not normal." What? "Your scan shows spots in your liver and spleen," he continued,"that weren't there in July."
Is it surprising to hear that this was just as shocking to me as being told I had cancer in the first place? 
I had been so focused on my positive thinking and I'm-just-going-to-cruise-right-through-this attitude, it hadn't even occurred to me that there could be setbacks, not to mention a relapse. The conversation that followed was pretty short. He recommended to follow up with my doctors at Stanford. He said there was nothing I could have done to prevent this from happening. He also used the words "game-changer." That I understood.

The following week was perhaps the most harrowing I've experienced since beginning this cancer journey. There were no immediate answers, only vague clues as to what the answers might be. We didn't have any results yet about cancer in the blood or bone marrow. We didn't understand how it could have come back so quickly in my liver and spleen, a mere four weeks after my last chemo.
Existential Crisis Face
We did learn that, after one look at the PET report, the Stanford docs had decided to cancel the original October Stem Cell Transplant. We also learned that they planned to switch from an Autogolous transplant, where you use your own stem cells, to an Allogenic Transplant, where you use the stem cells of a donor. Without understanding the specifics of these decisions, it definitely felt like the ante was being upped somehow. Which left me and a few other members of my family to the Week of the Existential Crisis.
You see, up until this point, I'd never really confronted the reality of dying. When people would ask me if I thought about dying, I would say no and mean it. I told them I'd only think about dying when the medical people gave me a reason to think I should. 
Now, it seemed, maybe that time had come. Not having kicked the cancer wham-bam as planned, I began to surmise that I might need to start coming to terms with the possibility that I might not be able to beat it in the end. I'm not trying to be dramatic. It just starts to look like a very fine line between "I won't think about dying, I only want to manifest positive energy!" and sheer denial. 

So, I thought about it. And I cried about it. Cried to myself in the afternoon, cried at night with Annie, and cried in front of my parents over steak salads at Tahoe Joe's. I think it is healthy. I like to be prepared for things. Getting some grieving in ahead of time seemed to be a good a way as any to be prepared. Especially with only confusion as background noise.
I'd like to stress here that this is not a call for everyone else to freak out. I am not dying. I have learned a lot in the past two weeks about the state of my disease and the treatments being planned around it. I just want to make clear that uncertainty is emotionally difficult. And to share a great way I've learned to deal with it.
For obvious reasons, Annie and I have been seeing a Cancer Counselor (my title) since June. He is a wonderful, kind, insightful therapist who really helps us get grounded and take all this in stride. Anyway, in the Week of the Existential Crisis, he told us this story:

Once upon a time, there was a Chinese farmer. One day, the farmer inherited a fine horse, one of the finest-looking horses in the land.
"You are so lucky!" his neighbor said. "Your horse will bring you nothing but wealth and prosperity!"
"We'll see," said the farmer.
Soon after, his horse ran away.
"What a tragedy!" his neighbor said. "Your horse has vanished and without him your farm is sure to go to ruin!"
"We'll see," said the farmer.
Soon after, his horse came back, followed by five other horses as fine and powerful as he.
"What luck!" said the neighbor. "Now your farm is sure to be five times as successful as before, and you shall be one of the most prosperous farmers in the land!"
"We'll see," said the farmer.
Soon after, the farmer's son was training one of the new horses, and fell and broke his leg.
"What a tragedy!" said the farmer's neighbor. "Your son will forever be crippled, and he will never be able to maintain the farm as you have done."
"We'll see," said the farmer.
Soon after, the local warlord started summoning all the young men in the land, most likely to fight to the death in a war with a nearby kingdom.
"What luck!" said the neighbor. 
And so it goes...

I think the point he was trying to make is pretty obvious. So now we are practicing not attaching too much emotional significance to every single turn of events. It's less exhausting that way.
Proceeding along those lines: The cancer is back. The prevailing theory is that only a portion of the population of the original cancer cells were affected by the initial chemotherapy. When my scans appeared clear in July, many of them had been killed off, but a smaller group was left to grow. That group is now being targeted by different, stronger chemotherapies, which I travel to Stanford to receive. An allogenic transplant is being prepared, which means I'll need a donor. (If you'd like to join the National Bone Marrow Registry, you could be the one for me!) Docs explain that an Allogenic transplant is preferable at this point because my own immune system isn't up to the task of fighting off mutant Cancer Cells. Hopefully, I can get someone else's cells that are. 

As for Annie and my honeymoon, we spent an all-expenses paid week at the luxurious Stanford Hospital, in a shared room with a variety of roommates. At least she got an actual cot instead of a fold-out vinyl recliner! I also made some art courtesy of the bedside-art program:
I think I will save the details of the Hospital Honeymoon experience for a later post. I have plenty to say on the topic! 
As for everything else, all I can say is, we shall see.


  1. What an intense turn of events. I do like the perspective of trying not to take every turn of events too emotionally, but I also agree a lot of crying and grieving along the way is definitely healthy, as well. I am so saddened by this, but hopefully this is just another turn of events towards a complete recovery. Thinking of you!

  2. Sending positive energy your way many times each day...

  3. Out there in the land of bone morrow is a match just for you. Love the wedding pictures !

  4. You look beautiful. You are stronger than most, and I think your introspection and thoughtful perspective will get you through-- you are amazing! Love you, Kia