Aftermath

Hi Everybody,

this is perhaps the hardest post I've faced since this journey began. I hesitate to call it a journey, because I'd rather not sully a word so full of possibility with the sadness and strife that cancer carries, but like so much of our lives recently I feel this is out of my control. It is a journey, better or worse. I'm going to begin with our lives as they were 24 hours ago.

Treatment ended on August 21st with Sarah's final radiation therapy session. It was a huge moment. Since January we have been living in the haze of this disease, always looking ahead to the next obstacle, or the next benchmark. Radiation was the final piece of the puzzle, or so we thought. One thing we hadn't really discussed, probably for lack of energy, was the recovery. We had a moment of exhilaration followed by a deep sadness. Treating the cancer is only a portion of the whole. Chemo and radiation take an unbelievable toll on the body. Sarah's oncologist admitted that the next step is where Western Medicine really fails the patient. All of a sudden you are on your own. He explained that it will take the better part of year for her body to rebuild and recover from the harsh effects of the treatment.

I've often spoken here about the distortion of time that we've experienced over the last 8 months. We had been living in slow motion, away from the rest of the world. As soon as treatment ended I could hear that clock start to tick again, but now everything is different. We suffered a fairly severe financial blow from the cumulative expenses of the cancer. Medical bills are only a portion. Sarah's lost wages, added child care, and a myriad of other expenses have been a constant drain. Without the generosity shown to us by our friends and family we would have been without hope, so a big thank you to everyone who has contributed their time, effort or money. We feel truly blessed knowing that so many people out there care so deeply.

Since January we've been in a battle over temporary disability benefits. Sarah has been denied twice, on the grounds that she should be able to work after 11 months, instead of the 12 required. All doctors involved strongly disagree, but it's no the doctors who get to make the decision. Even after we found out that Sarah would have to have another surgery to remove the teratoma in her pelvic region, and even with the lung damage caused by the bleomycin during chemo, our appeal was denied. Apparently 70% of applicants are denied up front, but that's no consolation given our current situation. After two denials we are now required to go before a judge and plead our case. As of Friday morning our case was strong, but now I believe it to be undeniable.

Friday was the final PET scan in the treatment cycle. Sarah drove to Stanford by herself for this one while Marek and I stayed home and waited. The PET scan requires the injection of a radioactive isotope, which leaves Sarah radiating at a dangerous level for hours after. This means she has to stay away from children and pregnant or nursing mothers for about six hours. Scary, I know. This was basically the test that would show us that all of the Hodgkin's was gone, that no active cancer cells remained. It was the final step in the treatment, a formality basically, and a reason to celebrate.

Once Sarah got home we all piled into the car and headed into Santa Cruz to meet our friends for dinner. We were expecting a call from the oncologist with a brief interpretation of the test before we saw him on Monday. This call changed everything. From the first words Dr. Wu sounded concerned, which is never a good sign. The Hodgkin's is totally gone, which is great, but there's something else. The teratoma that had shown no activity at the time of the previous scan was now showing activity. In addition to that there's another mass showing PET positive, which can mean active cancer cells. We see Dr. Wu on Monday, and from there we'll be sent to the Palo Alto Medical Foundation to meet with a new oncology team.

The Hodgkin's is gone, but by some cruel stroke of circumstance there may be a new cancer to deal with. We were standing at the finish line, and when we crossed there was no rest or resolution. I'd like to say that we're staying positive, but it took everything we had to beat the first cancer. This just feels like too much. As of now we are very short on details, but I'll be back here as soon as we have something to report. I would have liked nothing more than to deliver a happy ending to this story, but like through most of this experience we are waiting and hoping for the best.

Until then, thank you for all of the love and support,

Dan, Sarah, and Marek