Saturday, July 5, 2014


glioBLASToma


Yesterday marked the one year anniversary of the day that forever changed our lives.  I recently went back and read that first entry.  I never go back and read my entries after I have posted them.   I find the writing process so painful, and yet cathartic that once I'm through it-I'm ready to move on to the next wave of emotions and information.  Seeing those words again didn't bring the initial heartache to the surface again like I thought it might.  It was actually a sense of relief.  I was so grief stricken and afraid of what might lie ahead of us.  The relief that rushed over me was that one year later: I am now the mother of not one, but two beautiful children, we have taken the well-traveled path of cancer treatment, life adjustment, and survival.  Reading that post this time around, knowing that Dow is still here and doing far better than I could have imagined, puts the fear I felt with every word typed to rest.

The past 10 weeks have been a roller coaster of emotions.  Just about the time I'd get around to posting an update, things would change.  The quick and dirty version goes like this:  In April, Dow started receiving Avastin infusions every two weeks, coupled with a double-blind receptor-based vaccine trial that warrants injections every so often.  We spent April and May traveling between KC and St Louis for treatments. At the beginning of June came the dreaded MRI.  Much to everyone's surprise, the results read out as not only non-progressive, but also the existing tumor had actually decreased in size by 75%.  We then spent the next few weeks tapering down Dow's steroid dose to eventually nothing.  By the middle of the month things were not quite right.  He seemed to be sleeping more and just seemed generally "off." On a particularly "bad" day the confusion seemed extreme (time deficits, and trouble with basic tasks) so I called the oncologist at KU.  She told me to take him to the ER and I did.

After 12 long hours in an ER bay we were finally sent to a room on the cardiac floor.  CT of his head showed no change, but he appeared to be hypoxic and need oxygen.   A chest CT to rule out a pulmonary embolism, but showed mild congestive heart failure and pulmonary edema.  All arrows pointed to a rare reaction to the Avastin.  This seemed to be nothing a dose of diuretics couldn't fix.  By the next morning he was off the oxygen and appeared slightly improved.  I went home for a few hours to spend time with Sloane and Brandt.  When I returned in the evening, things were amiss. Dow had a hauntingly absent gaze and the confusion had multiplied.   After attempting to shave and shower, it was very apparent something was wrong.  I notified the staff and they immediately called a code stroke.  A trip back to CT and general physical exams pointed to small focal seizures and not a stroke.  Over the next couple of days he continued to experience the seizures and with medication adjustments they finally improved.  Because of the new, severe symptoms a new MRI was ordered.

Dow was admitted on a Tuesday, and by Friday had markedly improved and seemed to be on the mend.  That afternoon we had a meeting with the rounding oncologist and her gaggle of residents.  The news was soul crushing.  The MRI showed aggressive tumor progression.  We were sent home to be with our family and to contemplate that we had several weeks to a few months at best to be together.  I immediately called the team at Washington University to schedule a meeting of the minds and sent every shred of information that had been collected during the hospital stay.  Finally, one week after getting that devastating news I received a call from Washington University.  Their team of experts said the scan was relatively unchanged from the scan done at the end of May.  They were not seeing progression, but increased swelling due to the steroid taper which in turn caused the series of seizures.  They felt that he should continue with the vaccine trial but venture down a different chemotherapy path due to the reaction he had with Avastin.

It seems hard to believe that two sets of experts can look at the same scans and see completely different images.  That's the reality with this horrid disease.  It's all a guessing game, and no one really knows exactly what is going on.  We just monitor by symptoms, which detrimental or benign, manifest in the same manor.  A scan, which should be an objective piece of information, ends up being subjective to whomever is looking at it.

We are sticking with the second opinion and clinging to the fact that we may have more time than we thought.  We will be celebrating this Independence Day feeling liberated.  Last year I felt it was so ironic to be shackled with this devastating news.  I didn't know what to expect, I didn't know how life was going to change, and I didn't even know if we'd be here together this year.  While life has changed dramatically, everyday is still a gift and we were able to share this milestone will our loved ones.

No comments:

Post a Comment