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."

New Developments

IT has been an exciting and busy week.   My sister Margie  married Dr. George Harton.  It was a beautiful and meaningful wedding which included all the grandchildren, all 21 of them.  Many people attended from Baltimore and all over the USA.  We were especially happy to see old friends that we hadn't seen for almost 50 years.  
The music was beautiful at the wedding with Dr. Wendy Harton Benner playing violin and Allan Heer at the organ.  All family members took part with scripture reading by Ruth Harton Kennedy and Yvonne Harton Towfighi.   Maurice Harton was best man and Andrea Peak Stewart was matron of honor.  Kevin and Andy Peak escorted their Mom in.  Luckily she could hold on to their 2 arms until she got to George because unfortunately she had fractured her foot in 2 places after a fall in the middle of the night at her condo.  She made it through the ceremony and most of the reception but ended up at the local Urgent Care Center instead of the planned honeymoon trip.   One of the most precious parts of the wedding was when the younger grandchildren processed down the aisle each holding a beautiful flower that they presented to their grandparents.   The older grandchildren took part in ushering, and making sure that the guest book was signed.
Other news this week:    I  received word from Johns Hopkins  (The Kimmel Comprehensive Cancer Center ) that I should make another trip up there for further analysis of my shrinking tumor and what options are open to me now that weren't back in April.
Right after I received word from those doctors, the Referrel Coordinator for GI/Immunology clinical Trials  called me  about a trial that I probably can qualify for.   I would take one or 2 pills for 28 days called Rapamycin and Medformin.  I would be monitored every 15 days which means travel up there twice a month for 4 months.  After the 4 months, if all was working well (side effects minimal), the length of time for traveling up there could be extended.
So, Ruthie will drive us up there on August 21, spend the night, have testing and CT scan again and then return the next day after the conference.  We will discuss the trial and any other options they may have.  My oncologist is very encouraging about this.
I wish it weren't so far but, I guess we can look at it as not getting bored in our old age:)
It has been a good and exciting week and when I went in for chemo today, my dear doctor told me it wasn't necessary if I was going up there next week:):):)   Woohoo!!!  .  
I am praising the Lord and thanking Him for direction at this point in my life.  

MRI Report

The tumor in my pancreas measured in February 1.9 x 1.6 cm.  (In November, 2016, it measured about 4 x 3 cms).     It now measures 1 x 0.7 cm.   "The liver is normal in size and signal intensity.  There is no abnormal postcontrast enhancement within the liver."   Since I am not acquainted with medical terminology I can only quote what was stated.  I have not yet met with my oncologist to have it all explained.  
This afternoon I sent the report and the CD of the MRI to the Johns Hopkins Outpatient group who will present it at their tumor board meeting.  They meet every week.  I asked them to please review it and provide information on any available trials or immunotherapy as an option to chemo.  We shall see what their advice will be.

Week after chemo #12 and MRI

This week has been interesting in that I went swimming on Monday, feeling much better.  The day after I got the pump off (last Thursday) was such a sick day.  I did not have the abundance of diarrhea but certainly the nausea was as bad.  I just don't think I could stand more than one really bad, sick day like those days if I had to endure more.  But, thanks be to God, I only have to endure that one day.  Sure, the days surrounding that day are not the best, but not like that day.
Yesterday I was tired and lazy and didn't go swimming or walking.   I wonder if that was related to the episode I had this AM from Afib.?   I also noticed yesterday and all weekend that Neuropathy in my feet was bothering much more.  Actually, my oncologist took me off one of the drugs that has that as its side effect but that didn't seem to change this time at all in my feet, only in my hands and throat.
Anyway, this AM I woke up very early, like 3:30 AM.  I began feeling the Afib episode coming on which I haven't had for many months.  I thought, of all days to have this happen, the day of the MRI.
Agustin, who is very kind to rub my feet helped me relax by massaging my feet so very early in the AM. He covered me since I was feeling cold and "clammy" too.    I took my bp meds very early, hoping the Metoprolol ER would kick in and slow down my heart pounding.  I guess it did somewhat but when Margie came to get me for the MRI I was so weak and felt so awful.  But, we went forth as planned and when we got there, I didn't have to wait long at all.
I must say that we have the VERY BEST radiology facility and caring workers and techs in the brand new building instead of going all the way to the hospital.  Nothing against the workers at the hospital but what a good experience to go to the new facility:)
I was so weak, I had to lie down while they inserted the dye.   And, just for the record, one poke was all she needed to do the job, no pain and no bruising:)
I did the MRI and lost my Afib episode right there in the tube.   When I walked in there, I almost fainted and when i walked out I was in normal sinus rhythm.   To me, these episodes, which happen rarely, are the most disconcerting and uncomfortable experiences I have had to go through.
AS I went into the "tank", I thanked the Lord for everyone who was praying for me plus, asking the Lord to please help me get through the Afib episode.
For anyone who has never had an MRI, you are equipped with a comfortable knee pillow, headphones to block out the noise of the machine (sounds like the workers out on the road doing construction with drills:) and also through which you can hear instructions while the images are being taken.  During the instructions, you hear "Hold your breath"   Now, "Let out your breath".  Since I am a swimmer and a singer, holding my breath is no problem.
About half way through the 20 minute (?) procedure, laying perfectly still, with a wash cloth covering my eyes in case I was claustrophobic, I noticed my heart rate was back to normal and I no longer felt abnormal.   I was so happy when I could walk out of there, feeling fine.  They even had a wheel chair there for me in case I needed it.  But, with all my family praying, the Lord brought me through another day of challenge.
The report will be sent to my oncologist and I will go in to pick up the CD and report to mail to Johns Hopkins by Friday hopefully.

       "Thank you Lord for this day and for this hour and for this minute which are all gifts from you."