Tuesday, October 15, 2013

Ob-La-De, Ob-La-Da...Life Goes On, Even in Limbo

It's been exactly four weeks since the end of chemo/radiation round 1.  MRI day came and went leaving a bittersweet ending to chapter one of this epic story.  Dow's oncologist and the local radiologist both gave great MRI readings, just a small spot that appeared to be a mini-stroke from surgery.  We then had to wait for the central reading center to agree, cue a constant pit in our stomachs for 4 days. Finally, the news was that the DCVax trial group read this minuscule spot as possible "pseudo-progression."  What this means is that there was an abnormal spot, but they could not decipher whether it was radiation necrosis (damage from total head radiation) or tumor growth. This news did not exclude Dow from the trial completely, just put him in a waiting period.

Now what? Limbo and a stressful weekend spent weighing every possible option and coming to the conclusion that we did not want to immediately eliminate any option.  After consulting each other and countless personal medical connections, we made the decision to follow our original plan.   We will stick out the waiting period for DCVax. For 60 days Dow will comply with a regimen of chemo that puts him on a 5 day on and 28 day off cycle.  He has already completed the first 5 day cycle and feels great.  When this is finished, they will rescan his head and then  decide whether they will admit him in the trial or not.  After the initial MRI read his oncologist ordered a PET scan just to get another look.  Those results have come back clean, and were read as damage from radiation treatment.  This is just confirmation that sticking to the plan is the right decision and we just hope the trial group agrees in 6 weeks.

I've discovered that even in states of pain, panic, and limbo, life goes on.  We have established a new normal and this has become part of our everyday lives.   We've incorporated so many unaccustomed practices, but have also gotten back to a few of the old ones.  We have managed a short getaway to Nashville, a fabulous departure from the last 3 months.  Just the two of us, traveling, exploring, learning and genuinely enjoying each other's  company. All the things our partnership were built on.

This weekend we were lucky enough to celebrate the 2nd birthday of our greatest accomplishment, Sloane.  This little lady has put everything in perspective and has proven a million times over through this entire process, that we made the right decision to bring her into the world. Birthday cake and balloons were our only worry this weekend, nice.  We are now just 3 short weeks from welcoming Sloane's baby brother into this crazy world.  So many emotions arise when thinking about this, but I know that if he's anything like his sister, we will all be fine.

It's been difficult to explain to people that the only real way to track this disease is through symptoms.  Just because a scan doesn't show tumor growth, does not mean the cancer cells are gone.  It just really means they aren't currently growing.  All these treatments are practiced with the hopes that they will stop or retard regrowth, not necessarily cure.  As long as Dow feels good and has no symptoms, which is the case; I am happy. Life goes on.

1 comment:

  1. Susan, thank you so much for including us on this journey. Good luck with your upcoming delivery! And keep up the positive out look!! Hugs.