Johns Hopkins Visit, Aug. 21-22,2017

   We made very good time going up to Johns Hopkins for the CT scan and blood work considering everyone was all excited over the eclipse.   Everything went smoothly and we ended up  Monday evening treating ourselves to a delicious dinner on the harbor at the Rusty Scupper.   I must say the crab cake was the best I have ever eaten. 
    We were so thankful for Ruthie driving us up there again and taking notes at the meetings with the doctors on Tuesday.  The doctors who came in with their best recommendations from the way my tumor has shrunk and its' location were: 
 Dr. Amol Narang, Department of Radiation Oncology & Molecular Radiation Sciences and Dr. Richard Burkhart, Assistant Professor of Surgery and Oncology.
     We learned a lot on Tuesday about how they viewed my cancer and treatment which seems to be a very aggressive approach called a trial surgery and a bit "risky" from my viewpoint.
      I was told that I am a very good candidate for this and that no other hospital anywhere does this kind of surgery or would agree that this is the way to go. Basically it is called distal pancreatectomy which means that they would remove the tail of the pancreas (and tumor) after going through radiation on the tumor which would supposedly separate blood vessels and the artery from the tumor. 
    First, they would have me go up there for a special kind of scan where you are molded into a "cradle".  (Basically they mold something around you like a plastic bag that inflates with some kind of chemical and molds it to your body) All very fascinating with holding your breath for 30 seconds with a snorkel mouthpiece connected to some kind of tubing so your tumor doesn't move while they take the pictures. ( Found out tumors move when you breath:)      If all goes well on that test, the next step is the insertion of gold beads around the tumor (Endoscopic Ultrasound-Fiducial Placement)  This must take place no more than a week after a chemo treatment since it results in minimal acute and late toxicity (whatever that means?:)  I guess I would be worth a lot of money with gold beads inside me😁😁  Wonder what they do with them when they get them out after surgery?   Recycle? ☺☺
      After the beads are placed, the radiation on the tumor is for five days every day).   This is supposed to shrink the tumor even more.  All of these procedures must be done at JH.  According to the oncology surgeon, Dr. Burkhart,  JH is the only hospital that does this surgical trial!!
       Here is an interesting part about the tumor and its location.  It is located near an artery and tiny blood vessels. When it was larger, it was actually attached to the artery!!!  Since it has pulled away from the artery now, the radiation should be pulling it away from the blood vessels.   So when the surgery comes, they can use a scope to remove the tumor if there are no lesions on the liver, or at least no more than 3.  If  there are any lesions found, (even though they may not have shown up on scans or MRIs), they will be removed also if there are no more than 3.   More than 3, they close it all up and stop!!!!   The incision would be between my navel and my sternum as I understand it. Wonder if they cut into my diaphragm muscle, part of the singing apparatus?:)  Thrilling painful thought!!!  The tail of the pancreas would be removed.  
     Long range side effects could be diabetes 2.  Short term side effects can be nausea, infection, pneumonia,  you name it :)   Since it is a trial surgery, no one really knows the outcome until after the surgery, or that is the way I understand it. 
      I would be in the hospital for 5-8 days (?) and go home with a draining tube from the pancreas which I would be instructed on how to clean.  I would go up there again in 3 weeks for a check-up and then in another 3 weeks another check-up.  
      We arrived home very tired and overwhelmed with thinking of the choices I will have to make.  After all,  I am still 75 years old:)           These choices need prayer and thought.
        1.  I have the choice to treat this cancer aggressively as they propose;  
        2.  the choice of keeping on with the same chemo even though the side effects are not at all pleasant but go away after awhile!
        3.   the choice of another trial treated with  1 or 2 meds, Rapamycin and/or  Metformin. ( they are supposed to maintain the tumor to keep it from growing; There are a few other details attached to this trial like PET Scans, blood drawn, etc. plus monitoring side effects.  And trips up there of course.  Always about a 5 hour drive! 
        4. or the choice of stopping all treatment and letting the inevitable come when it comes.   My life has been lengthened by treating the tumor with some side effects and discomfort.  
        So, I ask everyone who reads this and wants to pray for me, please pray that I will know which choice to make within God's Will and His purpose for my life!    
          Hebrews 13:14  "For we have no permanent city here;  on the contrary, we seek the one to come."
           Isaiah 26:3-4  "Thou wilt keep him in perfect peace, whose mind is stayed on Thee, because He trusteth in Thee.  Trust Ye in the Lord for ever: For in the Lord  Jehovah is everlasting peace."