Breaking the silence

The 28th of this month is our sixth month mark.  What a bizarre time this has been.

The good news is that the Sutent is working.  Within the first week of taking it, Johan noticed a significant decrease in the amount of chest pain he had when coughing or sneezing.  The most exciting part was watching his skin lesion get smaller and smaller and smaller until it was like a dime-sized blister.  It had shrunk about an inch and a half (my best guestimation) in just over 2 weeks.  A few days later it popped.

After the enormous disappointment of learning that the IL-2 did not work our psyches needed this positivity.  But, as the days wear on, the reality of the situation becomes more clear.  More real.  While we are absolutely over the moon that this medicine is working, we both understand that, at any moment, it could stop working and things could very quickly deteriorate.  Emotionally, this is a strange Purgatory-like place to live.

Sutent is an oral medication which makes it easy and painless to take.  Johan takes one pill a day for 28 days followed by a 2-week break.  Then the cycle begins again.  We have a scan after the third cycle “to see if the tumors are shrinking” but, thanks to the skin lesion, we already know it is.  In very simple terms, Sutent cuts off the blood flow to the tumors so they can’t continue to nourish themselves and therefore don’t thrive.  Eventually the cancer will get smarter and find other ways to flourish but for now we’re happy to see a response.   There is no way to predict how long Johan’s body will continue to act this way so we’re trying desperately to live day-to-day, week to week, month to month.

Thankfully, Johan hasn’t had any adverse side effects.  Fatigue was certainly evident but easily manageable.  He also experienced a change in his taste buds.  Most foods were bland.  Things like mild mustard (which he loves) and peppermint toothpaste were painfully strong.  There were a few minor aches and pains but, really, compared to what it could have been, I am grateful it wasn’t grueling.

However, our celebrations about Sutent have been stifled.  Instead of running through the hills singing and rejoicing, we have been dealt a few other obstacles.  Yeah, I know.  That’s life but it still hurts. Cancer is only one of the battles we are fighting right now.  It isn’t anything I want to introduce here but, sadly, I can see the strain that the stress is putting on Johan.  This, combined with our new residence in Purgatory, is taking its toll on all of us.

We were so strong and passionate about not letting the cancer get the better of us, and I think we succeeded in that, but without a secure foundation to fall back on, we are realizing that our enthusiasm is rapidly fizzling out.  For now, we are coasting on fumes.  I can’t help but try to imagine where we’ll be in six more months.  Hopefully in a much better place.