Feed your FAITH and your fears will starve .

Tuesday, November 22, 2011

Very. Long. Day.

We were up bright and early this morning (according to our normal time zone) to meet with Dr. Sugarbaker.  We arrived at his office at 9:15 am and didn't leave until 2:00 pm.  Ugh.  Dr. Sugarbaker is very nice but in a Bostonian sort of way.  He is definitely not a hugger, much to Trent's dismay.  He said that he would do a Left Extrapleural Pneumonectomy.  Essentially he would take out the entire left lung, part of the pericardium, part of the diaphragm, and the pleural lining.  He said that Trent was lucky because he has huge lungs and the missing lung would likely not affect him too much.  After some time the right lung would grow some to compensate for the loss of the left lung.  He also predicted that Trent would probably breath better after the surgery than he is now because of the obstruction by the tumor.  He said he has patients who still do landscaping and play tennis.  That was good to hear.  We talked about only doing a lobectomy and he said that by doing that we would only spare approximately 12% of Trent's lung function and the risk for recurrent tumors was greater.  He also wants to do intraoperative chemo and possibly some treatments afterward.  He mentioned radiation but that determination will be made post surgery.  H believes he can get Trent back into the land of NED.  (No Evidence of Disease) That's good news! 

Trent would be in the hospital for 7-8 days, then would have to stay in Boston for 2-3 weeks following surgery.  Dr. Sugarbaker said it would take 3-6 months for Trent to be 100% but he would feel pretty good by the time he was allowed to go home.  He also said that flying would not be a problem. 

After we met with Dr. Sugarbaker we headed over to the Dana-Farber Cancer Institute to meet with Dr. D'Adamo, a medical oncologist.  He apparently had not gotten the memo about the intraoperative chemo.  He examined Trent, we talked about what chemo agents Trent has used and what was successful.  Then he left the room to look and Trent's scans.  Trent and I were both asleep in the exam room.  When he finally came back he launched into a ten minute lecture on sarcoma.  Hello!?!  We have been doing this for 1 1/2 years now!  We KNOW what sarcoma is!  He finally admitted that he didn't do intraoperative chemo much and hadn't done it for years.  What?  I was getting really annoyed.  We had just sat in his office for over two hours and we were both exhausted and he had given us nothing.  Not one thing that he said was something we didn't already know.  I told him we were expecting him to give us intraoperative chemo and he needed to talk to Dr. Sugarbaker and get back with us tomorrow.  Then we left. 

That was a very big downer on a very long day.  Neither one of us had eaten all day long and we were so tired.  We will be coming home as soon as we get a flight.  The surgery is scheduled for Dec. 8th.  Hopefully tomorrow we will know about the chemo part of the surgery.  I am ready to end this Very. Long. Day.

6 comments:

  1. UGH.. sorry for the delay. How frustrating, but, brighter days are coming! Extra prayers being said for your sweet family. We love you.

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  2. That truly is the most miserable thing I've heard in a very long time. It's hard not to be completely annoyed. But, best to you as always. Hope your trip home is good:)

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  3. I like NED, long live the land of NED!! There is a special flag for the land of NED, it has been through many battles and will carry you through yours !!!!!
    We love you guys like crazy Keep up the fight!

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  4. I am sorry for your long day, but glad to hear the other news! Good luck and we love you.

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  5. i don't handle irritation well, so i can't imagine how even more bothersome it all was for you two. keep hanging in there! ::hugs::

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  6. The first two paragraphs of this post have my jaw on the floor. THAT IS AMAZING!! "he'll probably breath better after the surgery" = unreal! "the missing lung will likely not affect him much" = WOW! "back to the land of NED" = HOORAY! Seriously, I can't get over it.
    The final two paragraphs made me want to reach through the computer and shake Dr. D'. SO SORRY you had to end with frustration.
    Hope you have a Happy Thanksgiving!

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