Getting to Massachusetts

Before I tell you about my experience at Dana Farber and Brigham and Women’s you should hear about my terrible experience getting there. Don’t worry folks my story gets a bit more positive but I think it’s important to share the negative so that maybe others can do something to avoid it happening to them.

Let’s go back to Jupiter Medical Center for a minute. My OBGYN doctors insisted I should stay there. A friend and my former Nurse Practitioner (when I lived in Massachusetts) made some calls and got me into one of the best cancer facilities in the world, Dana Farber with one of the best gynecological oncologists, The director of Gynecological Oncology, Dr. Berkowitz. Immediately my mother started making calls to get me on a plane and up to Boston. This was an acute situation and I needed to start treatment immediately if there was any hope I would survive. My mother called Delta and spent (I kid you not) about six hours trying to get us a ticket. She told them it was a medical emergency, that I needed to get to Boston immediately and that I couldn’t have a layover. After hours of arguing and pleading she became understandably frustrated. This is when the man on the phone told her, in a heavy foreign accent, “Calm down mam why don’t you have a drink of water”. How could she calm down, what would a drink of water do for her, her daughter was lying in a hospital room dying! Her first born, vibrant 28 year old daughter had advanced cancer and kidney failure and her only hope lay in a hospital thousands of miles away! She needed someone to help her but all she got was a man in a foreign country telling her to calm down there was nothing he could do.

My mother was finally able to get us a flight but not a direct one. Even though I had to be highly drugged(Dilauded), wheeled in a chair and receive several blood transfusions prior to flying they couldn’t find me a direct flight! Keep in mind nothing was done to improve my health while I lay in bed for a week at Jupiter Medical Center. I still had hydronephrosis and atrophy in my kidneys and a huge tumor. The pain was excruciation even with the IV pain medication. Now I was going to have to be taken off the IV and take pills. The doctors told me that being taken off the IV pain medication and put on oral pain medication would mean the pain would increase but I had no other choice.

The next morning, after the blood transfusions, my very dear friend and my mother drove me to the airport. Specifically we went to Palm Beach International. My friend was driving and she pulled up to the curb to let us out. A wheel chair was requested as I could not walk. Mostly I remember the pain, it was beyond description but I knew my only hope required I endure it. As my friend was trying to say good bye she was screamed at by one of the officers who directs traffic. “Move, Move, Move” They had given us maybe a minute to get out of the car, get a wheel chair and our small amount of luggage. We couldn’t move fast enough. No goodbyes, no moving slowly! I understand and respect that after 911 there are safety measures that need to be taken but this was beyond what was necessary. My poor friend was crying, who knows this could be the last time she will see me. They wouldn’t even let her say goodbye, it was heartbreaking for both her and I.

My mother checked our bags and started wheeling me through the airport. We got to security and as we were trying to go through one of the security guards noticed there was a bottle of water in our carry on bag, I believe that my friend was trying to be helpful and put some treats and water in our bag for the trip. This security guard completely freaked out!! They pulled my mother to the side to search her and then they started to search me. I could barely see and certainly couldn’t stand. My poor mom was in tears trying to explain the situation but they wouldn’t let her talk. The woman began searching me. I had to stand. She patted me down which caused me horrible, horrible pain. In front of all the other people the woman searched me, patted me down. All the time I couldn’t see my mother and had no idea where she was. Again, I understand the security issue after 911 but this was a bit much and a moment in my life I will never forget!

After the security felt I was not a risk they allowed me and my mother to go on the plane, without the water. I don’t remember very much from the flight. However, I do remember when we got off the plane and the pilot asked what was wrong. When my mother told him he said, “You should have told the Delta representatives this was a medical emergency this young girl should not have to deal with a lay over” My mother then told him about how she had and how she was treated. This pilot then said, “Sometimes I am embarrassed to say who I work for and this is one of those times”.

I think I will leave you with that quote!


susan said...

honey, I remember all too well those days, all the pain and fustration. I wish we could have done more to help you. You are always in my thoughts and prayers!

Ryan Reger said...

Every time, I hear about the awful things you had to endure, I always get a pain in my stomach, but at the same time I am inspired and proud to have such a courageous human being as my friend.

Anonymous said...

i am speachless...
..i know US custody and all the security checks so well since i have been going through all that many many times and i saw a lot..a lot what they did to ppl...but all these ppl have been healty..could walk ..had no pain...u got me? i CAN'T understand how some assh**** think they are something "better" only cuz they are working as security ppl at the airport..and the way they treated ya...i have to agree with ryan "get me a pain in my stomach"!!!!

Michelle said...

I work at Brigham and Women's, I'm glad that you got your care here and at DFCI. I can't believe how awful your trip here was, I feel so bad for you and your mom especially.