Monday, February 08, 2010

The next chapter of the story

When I left you, dear readers, I was busy crabbing about the miscommunications surrounding my MRIs.  Ugh.  A lot of that emotion was being driven by fear, mainly fear of the unknown.  I did make it through the week, though I kept wondering, am I going to Columbus?  Am I not?  What is next??  On Thursday I carried my cellphone everywhere I went so as not to miss a call from them.  I got home a bit later than normal and discovered that the NP left a message on our answering machine at 6pm.  ARGH... the curse of having more than one phone number listed in my record!!!

On the message the NP told me that everything remained stable from my November scans.  So, again, nothing new, nothing grew.  She said that Dr. O had not yet read the reports so she would be talking to him on Friday, and instructed me to call back on Friday afternoon.  Upon hearing this, I burst into tears... more waiting!  Jim came over to comfort me.  He had heard the message when she left it and he was reminding me that "stable" equals "good news".  Of course he was right, but at that moment all I could feel was the stress of still not knowing what was going to happen next.  At that point (Thursday night) we hadn't done any of the things that need to be done if we are going to be away for several days.  The list includes: getting laundry done so we can pack the girls' things for staying at Grandma's and packing our own things; stopping mail service; making a reservation at the dog kennel; etc. etc. etc.  Throughout the evening I collected myself and did see the good news in the message.  Of course I was a bit disappointed that there was no shrinkage; I had hoped that with all the immunologic symptoms I've been experiencing (low thyroid, joint pain) that shrinkage would follow.  It's possible that these lesions are just dead or dying tissue though, so that is what I am visualizing and hoping for at this point.

On Friday I called Dr. O's office to let them know to call me on my cell phone, so I wouldn't miss a call, and that is where the NP called me at midday.  She told me that Dr. O didn't think I would benefit from any more IL-2 at this point.  As we talked, she was very apologetic, but I reassured her that I understood and agreed.  If the scans had shown any positive change, I would have gladly gone back for more treatment, but I just couldn't imagine putting myself through it again if I've remained stable all this time, especially given the toxicity of the stuff.  She explained that they would send the results up to Dr. Rini here and that Dr. O would call him to discuss. 

So, that chapter is closed.  I had already emailed Dr. R and HIS NP, Shari, to ask if by chance they had received any of my results yet, before I even heard back from OSU.  They had not, though Shari confirmed that my brain MRI was normal.  (so there, I still haven't lost ALL of my marbles yet)  Dr. R was traveling but was gracious enough to email back and forth with me a bit.  According to him, "I would propose no treatment until your disease worsens. Often pts can have many months of stability after IL2. We should see you in 3 months with CT scan."  I am hopefull that the word "until" becomes "unless" over time.  But at any rate, this buys me some time... time to continue healing from the IL-2.  Time to work on projects at home that I have had mental but not physical energy for.  Time to spend with the family and with friends!  Time to refocus my energy at work and work on some things I have wanted to accomplish.

2 comments:

sherri said...

Fingers crossed that "until" morphs into "unless" Liz. My reading of your report seems like all good news. Enjoy yourself, your family, and your time.

Rachel said...

Best of luck with it, Liz. Sounds like good news!