Wednesday, September 5, 2012

Only 2 more times!

Wow, only 2 more times to get hooked up to those poisons.  Unbelievable.  The question of the week seems to be what happens next.  I've given this some thought on the personal level (will get to that in a minute) but on the medical level its pretty straightforward.

First I will have 3 scans on Monday - a routine mammogram (its been 6 months since the debacle with trying to biopsy 2 spots found on breast MRI that weren't there), a CT scan of the chest and an MRI of the pelvis.  The chest CT is to look for new masses that could appear in my chest.  The pelvis MRI will cover the left groin area where the original tumor was.  These are the 2 most likely places for recurrence/metastases so they will be checked every 3 months for 2 years.  The breast mammogram will be annually with the breast MRI in between.  About once a year they will do a PET scan to make sure there are no new bone masses since Ewing's is typically a bone cancer.  And once a year they will do labs just to check all my levels but mine is not a cancer with a blood marker so it won't tell us anything about cancer.

Although most cancer research looks at 5 year survival rates, both my oncologist & my surgeon have said that the first 2 years are really the most critical.  Once we get past 2 years that recurrence risk goes way down so the scans will be further apart after that.

Next week I will see Dr Keedy on Thursday.  We will go over the scans from Monday & talk about what happens next.  I will need to get the port removed - my vote is for sooner rather than later.  Especially before we start scuba.  We will look at my labs, which I'm sure will be crappy from this week's treatment (& will likely necessitate a transfusion).  But that will pretty much be my "release" visit to go back to "normal" life.

So that brings me to the personal.  What to do now?  No matter how much I don't want or like to think of it this way, pretty much all aspects of my life & my family's life has been centered around cancer to one extent or another for the last 9 months.  It just has - there is no real way to avoid that when you've been thru what we've been thru.  No matter how much I have tried to keep the family's life normal, we have all taken a beating from this.  So, what do I do now?

First, I think I have to give myself some time to re-acclimate.  I will probably need to keep using some disability because it will take a couple weeks to recover just from this treatment.  I will miss my nurses and my interactions at Vanderbilt but I am planning to embrace my job - to start traveling again, to jump back into things I've not been able to do. 

So, what am I most looking forward to about finishing this journey?
  • not feeling sick, hazy or tired all the time
  • not having frequent but unpredictable stomach aches & cramps
  • fat foot/leg going away (is that too much to hope for?)
  • growing back my hair
  • starting to exercise again (i'm aiming for an october 1st start on this one)
  • not taking anymore steroids & the associated bloating
  • the feeling of triumph that it was freakin' hideous but i did it
  • hanging onto the lessons i've learned & relying on other people

What will I miss about this?
  • the nurses
  • slowing down & taking my time

And so it goes, the mental gymnastics of the next phase have begun!!!

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1 comment:

  1. Just two more! Yay! So very, very happy for you all!


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