Monday, August 26, 2013

EPIC, not tragic

Today wasn't a marathon...and it wasn't a sprint.  It was a leisurely 3.1 miles to be exact. And very symbolic of the distance we have gone in this journey.  Today we participated in the Head for the Cure KC 5k.  What started as a few coworkers getting together to run in honor of Dow, bloomed into a massive turnout of support from, friends, family, coworkers, and a plethora of lives who have been touched by Dow.  The overwhelming turnout was comforting and humbling and we would like to say a big thank you to those who have shown our family support in so many ways.

This week also marked the halfway point for chemotherapy and radiation treatment.  Before our new life, I had no idea what these two treatments entailed.  I will now give you some insight into our past three weeks and the 3 weeks to come.  First, Dow went for a trial radiation run.  They fit his head with a  mesh mask and mapped his brain tumor location with pre/post MRI and CT scans.  They then pinpointed the exact spots that would receive the radiation.  He has now gone everyday, Monday through Friday for 30 minute doses of radiation.

One hour prior to the radiation he must take his chemotherapy.  For those of you unfamiliar with the potency of Temodar, the instructions from the oncology nurse were very specific.  Dow cannot eat two hours prior to chemo and one hour post chemo.  This medication is so strong that we are not to come into contact with the medication itself nor any of Dow's bodily fluids. The remnants of chemicals that may be secreted in saliva or sweat could cause illness in a non cancer patient.  He now lives in pants and long sleeve shirts at home with Sloane and I so that we do not have direct skin-to-skin contact with him in case of sweating.   He does all of his own laundry seperately so that I am not put at risk of handling any chemical residue that may be on them. The human touch is a very powerful thing and we have always been an affectionate couple.  Not being able to give me a kiss goodnight and not being able to pick our daughter up if he's been sweating has been extremely difficult.

As far as side effects go, Dow has had hardly any.  He has strictly adhered to medical instructions, diet, and supplements.  Whether his phenomenal tolerance is due to this or his shear determination, we will probably never know.  Whatever it is, it's working.  He still has good energy, a great appetite, and continues to remain physically and mentally active.  His first round of labs came back completely perfect and his weight has not budged a single pound in either direction.  As of this week the only real side effect has been that the hair where radiation takes place has finally fallen out.  So he has taken this opportunity to shave his head and do a little less in the primping department.

Being at the midway point of treatment brings relief and angst.  Knowing how well this leg of the race is going makes it much easier to handle. Though, with the end of standard of care treatment comes the foreboding feeling of finding out if, and how well it worked; and where we go from here.  Plans have always been to continue on with the DCVAX trial, but the fear of hearing the words that all of this effort has had no impact on remaining cancer cells is paralyzing and  would be like receiving diagnoses all over again.  There is no real way of telling how well treatment is working, just monitoring symptoms  and occasional MRIs. Given how well everything has gone up to this point, I can't imagine this being anything but EPIC, not tragic.

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