We Are Hopeful………… May 2017

Our trip to Houston was good and we were surprised at what we learned.  Right out of the gate Dr. Sugarbaker says “Yes, surgery on the pleural lining of both lungs is doable”!!!!  The question following the yes was ‘so what are you doing with the spot in your stomach?’.

So to make sure everyone knows where we are at – Tim has one spot in his abdomoen – not on or in an organ, just in the gut and it is in a difficult spot, but the good news about that spot is it hasn’t advanced in a very long time and the rest of the gut looks good (according to the scan).  Then Tim has spread of disease to the pleural lining of both lungs.  Okay, back to the Houston meeting….
The Dr. said he can do surgery on the lungs to remove the disease, but will it be worth it if we still have a spot in the abdomen that is producing mucin, making the disease spread.  So he wanted to know what Tim and I were doing to get rid of that spot.  Well, we felt quite silly not having an answer for him.  We told him due to its location we were of the understanding that surgery couldn’t be done to remove it.  He suggested we get other opinions as there are a couple of other options to possibly address the issue (i.e. SRBT, Cryotherapy/Tumor Ablation).
The short of it (if I can possibly do that is), he suggested finishing the 4 rounds of chemo.  Once that is done, we will want to have someone go in to Tim’s tummy laparoscopically to take a look around to confirm that what is in the stomach can be removed.  Once confirmed he would go through whatever procedure we decided on to remove that tumor (or anything else in there).  Once healed from that procedure, Dr. Sugarbaker would perform surgery on one lung.  We would be in the hospital for 10 days – 2 weeks then come home to heal for about 6 weeks.  After that another trip down to Sugarbaker to do the other lung, stay in the hospital and then home.  In a perfect world after ALL OF THAT, Tim would be back to No Evidence of Disease.
Sounds great right?  We can’t say it sounds great because there are so many ‘what ifs’ and there is so much to get through all of this, but we do think it sounds VERY HOPEFUL.
We are very happy with the visit.  We LOVED everyone at Baylor – what an incredible team of people.  They put Tim through some testing and the Dr. was very impressed with Tim’s health.  His words were ‘you are young, you are healthy and now is the time to be innovative and aggressive to get rid of this disease’, then wrapped it up with ‘hey, its only your life, right?’.
Tim and I really liked him.  We got a very good feeling from our meeting with him.  We are cautiously optimistic and are thrilled to have Hope for a complete treatment.
Our next steps is a PET scan here.  Once done we will send it down to Houston.  We know when doing this scan 5 years ago when Tim was full of cancer it showed nothing.  So we’re not sure what we will see if anything, but it is a smart test to do and something the Dr. needs/wants.  Then we will push through the last 3 rounds of chemo.  We are working to figure out IF we can do the lap procedure while Tim is doing chemo, just so we can get moving with this.  It might not be possible due to the antibody agent that Tim has in his chemo concoction.  We might need to be off chemo for 6 weeks prior to the lap procedure.  Once that procedure is done, we will have a good idea of what we are dealing with and if a clean up of the belly is possible, then on to lung clean up :-)
Thanks to the Arena, Simpson and Hewlett families for ensuring our girls were picked up, dropped off and carted around while we were gone.  Thanks to my Mommy and Daddy for being here at the house to take care of everything.  Thanks to Dave for the airport drop off and Lynn for the pick up.  Thanks to ALL OF YOU for the endless thoughts, prayers and love.  We feel it.  It IS working.
XOXO, Denise
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