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Apr 28-May 04

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Ray did not have the PET scan on Wednesday.  Long story short is that the insurance didn't approve it timely so he was unable to have it but we did leave the house at 6:15am on Wednesday in hopes that it had been approved overnight so we proceeded with our trip to Boston.  Once we found out it was not approved and BWH said we could pay for it out of pocket (over $5K) we decided not to do that.  When everything was rescheduled I asked for a call back from either Dr Bueno's nurse (Donna) or PA (Kathy) to discuss what could be done about his pain.  It had been a very rough few days and I will spare you the details.  We left Boston and were over halfway home when the phone rang.  Ray spoke to Donna for a few minutes then I got VERY mad and told her if I couldn't turn around and have him be seen by someone down there then I was driving straight to the ER at Catholic Medical Center because his pain was not controlled.  She told me to take a deep breathe and I wanted to reach through the phone... We were on the side of Route 3 at this point and she assured us she would call right back.  I found the nearest exit and we parked until she called us back.  She did call back very quickly and told us they agreed to see him and would do a CT scan to see why there was so much pain.  They were not sure if the pain was related to his hernia surgery from 2-17 or if it was something new.

The CT scan revealed fluid and a new tumor in his abdomen (in addition to the one they found while doing the hernia surgery).  They decided to admit him and have him seen by oncology while there.  Yesterday, they drained 2.2 liters of fluid from his abdomen.  Think about a 2 liter bottle of soda.  It was that plus some.  They told him it equals about 6 pounds.  He met with a team of 4 people from oncology and they were going to review the case and come up with a plan.  Ray only spent one night at BWH and they recently lifted the no visitor policy so I was able to visit his room then brought him home last night.

Ray has another CT scan next Wednesday then will meet with the new oncologist, Dr David Kwiatkowski, also known as Dr K.   This oncologist specializes with mesothelioma and since it's now metastasized we need all the prayers and specialists we can get.  We've heard words such as more chemo and immunotherapy so we will see what he has to say.  

A little funny - my mom is Polish and my dad always teased her about the "damn polacks" and as most of you know I lost my dad in January 2020 to Pancreatic Cancer.  Ray was diagnosed in February 2020.  Ray said my dad must be mad at him to send him a Polish doctor (Dr Kwiatkowski).  I'm glad Ray's sense of humor is back since he feels so much better after being drained.

Will update after next Wednesday's appointments.

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