Sunday, May 01, 2011

from the ever-glamorous WAC* frontlines

[*War Against Cancer]

time has gotten away from me as usual, i am afraid, and so this update is a bit overdue. i am happy to report that, even though Andrew gets tired too easily and stays that way too long, things are strangely a little better here!

Andrew continues to struggle with significant fatigue and his nodes remain big and bright (deep in the heart of texas). however, things here are seem to finally be moving forward - but mainly by staying still!

even with recuts, repeat staining, and multiple pathologist and oncologist reviews at multiple places - no one can find the cancer even though everyone agrees it is still there. although no one can offer an alternative idea for what is going on, no one is comfortable/willing to treat without a histologic diagnosis. they all agree that high-dose chemo with stem cell transplant and radiation is in our future. it is just a matter of when.

our options at this point are to wait and see what happens and recheck a PET-CT in 2 months in hopes of finding a new way to get to the answer or to allow them to perform a sternotomy (crack the chest) to get more tissue in the hopes of getting a different result than previously occurred, which we think is nuts. (the thoracic surgeon agrees.) so we have gone into medical time-out. we are electing to wait and focus on non-medical symptom control for the fatigue and improving general wellness.

somehow this feels a lot different from the last 4 months of waiting and fear to both Andrew and me. unlike before when we had to be in a state of readiness to cancel everything and potentially move to another city on a few days notice for an indefinite time frame, now we are looking at having a known time frame for rest without the pressure to get complications healed or else really bad things will happen.

not having to consider treatment right now is a particularly good thing since our house and vehicles were moderately ravaged by the recent apocalyptic hail! we are going to need that time to get everything squared away with insurance and repaired. we feel, recent natural disaster aside, that this is a wonderful time for us to work on emotional healing, connect with other cancer patients and families through the local cancer support community, and just breathe. i think we each laughed more in the first few days after that appointment than in the previous 5 months all together!

Wednesday is Andrew's birthday. we are looking forward to reveling in the joy of being lucky enough to have one another as travel companions on this crazy journey. we hope you will take a few minutes Wednesday to celebrate with us in spirit, albeit from a distance!

special thanks to Miss Steinie for the amazing photos. i 'Dance Happy' just looking at them!


steinie said...

It was my pleasure and I hope I get to do it again and again and again!

Pam said...

What a wonderful post! You capture the essence of this crazy life-walk perfectly.

How nice to see and hear you both laugh and dance.

Cathy said...

Lovely photos - "dance happy" Love it!

Best to you both.

magnusmog said...

Happy Birthday to Andrew - lovely to see the two of you dancing. x