Monday, February 13, 2012

Who is Ewing?

I'm still processing the information from our visit with Dr Holt today.  First, the good stuff - the incision itself looks okay but the redness & swelling she said was from fluid build up.  She said I could be retaining 10-12 pounds of fluid and that it could last for 6-8 weeks, but she did send me to radiology to have a drain put in.  I won't get into the gross details but they removed a boatload of fluid & the incision feels better already!  She also said my hips hurt from fluid buildup.  More good news, she said walking is the best form of exercise right now - no elliptical or anything like that - and she recommends walking outside.  She said try to do up to an hour a day & once I can tolerate that move to trying to do it twice a day.  In a few weeks it will be okay to do upper body weight training too.  So I'm psyched to get outside & walk tomorrow!  Its sore tonight from all the poking & prodding & the drain being installed, but it definitely feels better without all that fluid in there.  Maybe my pants will fit now!  I do have this hideous "sack" contraption to tote around with me which sucks.  I can't go to work with that thing or sit for a long time so looks like I'm working at home this week.

The other things we learned are more troublesome and confusing.  The diagnosis has been changed to a Ewing's sarcoma, which is even rarer.  Typically it occurs in the bone but is also known to happen in soft tissue.  Dr Holt feels good about the surgery - she told us all she did & it was pretty extensive to remove a small tumor.  The pathologist doesn't seem to think that the margins were clear but that appears to be a debate they will have internally.  The Sarcoma Board will review my case on Wednesday when a final treatment plan will be determined, but Dr Holt is recommending radiation therapy for 5-7 weeks followed by 3-6 months of chemo.  She said the oncologists may feel differently & they will get it all hashed out this week & she will call Wednesday with more information.

The breast findings are concerning and there could be more changes to the treatment plan pending the results of those biopsies.  Kendall said we don't really know a lot more than we did this morning, but I think we do.  Its just as we are increasingly learning in this journey - there aren't any definitive answers.  I cannot imagine how challenging that is for the physicians - to want to answer their patient's questions but to know that they really just don't (or can't) know for sure.

Until we know more, it seems pretty much like the balance of this year is going to be filled with doctor visits, hospital stays & the like.  Sucks, but it is what it is.  We will cherish each new bit of information we get, continue to ask hard questions and evaluate the options.  I see Dr Holt again on Tuesday next week to get the stitches & drain removed, but I will be talking to her this week as well after the board discussion.

More details as we know them.

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