See-saw

We're used to having a doctor tell us "the answer," and not just put a bunch of options in front of us to let us choose from.  If you have a sinus infection, they don't say you could take amoxicillin or Cipro, and here are the differences; they basically pick one for you, and tell you why.  They write the prescription, and off you go.

The treatment decision for WM wasn't anything like that.  I felt that the doctors would lay out a spectrum of possible treatments, point toward one, and then go to great lengths to push the decision back to me.  At first, it seemed almost like a guessing game: what question should I ask to get him to make a strong recommendation?  Should the first one he pointed to be the one to pick?  I guess it's because much less is known about the disease than is known about sinus infections, and that none of the treatment options is a sure thing.  It's not a sure thing that amoxicillin will knock out your sinus infection either, but it's a pretty good bet, and if it doesn't work, the Cipro is almost sure to work.  (Unless, of course, you've got one of the new "super" bugs.)

So this led to an emotional see-saw ride over the last few weeks.  At first, after consulting with the Bing team at DFCI, I was leaning toward the trial.  A few days later, the nurse-practitioner called with my lab results, and told me that I was well qualified for the trial.  So I decided the trial was the right thing.  But then Dr. Treon called me that same night, and said that I should strongly consider the Velcade/Dex/Rituxan chemotherapy, because of the level of marrow invasion.  I talked to my family doctor, and then to my hematologist, and made up my mind:  the chemotherapy was the right way to go.

Over the next few days, I started reading some scary things about the side effects of the chemo.  I stayed the course, though: it was important to make a decision and move forward.  My hematologist chipped away at my resolve by saying that he would support the trial, but I remained steadfast.

Finally (at least I hope it's final), Dr. Treon called again to ask me to reconsider the trial.  He had some new information that made it sound like it might be a better option after all.  So now I changed my mind again, and am headed for the trial.

Did I say emotional see-saw?  More like a roller coaster.  I told both doctors - Dr. Treon in Boston and my local hematologist - about my feelings.  They said that with cancer, they believe that it needs to be a joint, informed decision.  As more information became available over the last few weeks, the decision parameters changed, and it was up to me to choose the path.  But even though I've learned a lot over the last month, I'm still a neophyte compared to either of the doctors.