Side note: Our insurance would not allow as we had originally hoped to see the docs at Mass General first as they are "out of plan". Our plan (as we never get sick) is an HMO and we have had luck with it of course until this hit me and we wanted to go "out" for diagnosis. The insurance people we call have been very helpful, but policy is written and well, you need to know what is covered and how to get it covered before going out and getting it first. Unless you want to pay you are at their mercy. It has been a challenge and frustration for us, but hopefully will all work out in the end - end goal - success and cure. In the meantime, we had to cancel our quickly made appointment with Dr. Hochberg (from Dana Farber and Mass General) --- and wait for an in plan consult before reaching for a second opinion.
Once we had our appointment with Dr Deb Smith and received diagnosis we talked to her about second opinion and with Cooley Dickinson having a relationship with Mass General she also was helpful and supportive. We got an almost immediate appointment with Dr. Jeffrey Barnes for Friday (today).... my friend Lynne at LLS did the research and we received great feedback and recommendation of his skills and experience at the Farber and Mass General.
The trip was 1.5 hours and nerve wrecking for me.... my stomach is uncomfortable in the car (Steve would joke that is it like I swallowed a couple of tennis balls) and the stress of what type of news (additional cancer... more complications.... whatever the case scenerio - reality) I would receive was FREAKING me out and nausea set in just from my nerves. It is so crazy when it is your life they are talking about how it can really mess with your psyche. I am pretty tough most all the time, but boy this has truly challenged my ongoing optimism and hope.
Side note: Going through all of this at the same time my friend Judy's sister in law passed away from cancer the day I had my biopsy - and she has been such a strong supporter of mine - it has been tough to hear about Jan's death and the effect on her husband and children. Judy calls me to see how I am doing and has this dismal voice..... I respond that I only want hopeful, happy, upbeat phone calls -- no "poor me" stuff... she then smiles and laughs and reminds me that she is at a funeral.... :( But now she calls with optimism as she is my friend and would do anything for me. :)
We beat the morning traffic making phone calls along the way. We were able to talk to Samantha who sent her well wishes and hopes. She is now working at a preschool / daycare in Natick and really happy in the Boston area. We arrived at the Yawkey Building at Mass General, drove to the top of the parking garage and got the last spot! Luck was on our side! :)
Massachusetts General consistently ranks as one of the country's top hospitals in U.S. News and World Report. In 2007, MGH ranked 5th overall from among 5,462 medical centers with a #1 ranking in psychiatry[1] as well as high rankings in endocrinology, orthopedics,respiratory disorders, geriatrics, digestive disorders, neurology and neurosurgery, kidney disease, heart, rheumatology, cancer, urology, gynecology, and ear, nose, and throat.
Lynne Grazianno-Morin, who I met when working for the New England Division of the American Cancer Society is now with the Leukemia Lymphoma Society and has been an incredible resource for me. Not only as a cancer patient in the Boston area having survived cancer 3 times, she is the patient services director and knows so many great connections at "The Farber" and MGH. We got to the Yawkey Building early - and were able to check in and then go to the 8th floor where you see pediatric oncology and all these great felt quilt squares with words of hope... faith... success.... inspiration made by the children and children of patients at the cancer center. I used Steve's Iphone to take pics, because for some crazy reason I didn't bring a camera (those of you who know me well know I never leave home without a camera). :)
We then went to the Wall of Hope - read a few stories and saw Lynne's story and her picture with her trusted Doctor Gebhart. She is truly and inspiration and a rock! Her optimism and hope each time I talk to her just feels so good. She has been amazing for me to have as a friend through this time.
Before going back to the waiting room we stopped by the Healing Garden which overlooked the city of Boston. A very quiet place for cancer patients to go and relax while at the hospital - outside in the fresh air -- truly a beautiful place, a place of solace and peace.
My name was called and my ID checked (over and over at both hospitals they ask name and date of birth -- making sure you are who you are!). We were escorted to the patient room and weighed, pulse and blood pressure. They are always amazed at my low BP and pulse.... :) 109/60 and my pulse was higher today (probably because I was SO nervous) at 70. The other thing is they all think I am so skinny -- which is such a compliment, because I work so hard to maintain my weight (146) and fitness.
Dr. Barnes comes into the room and begins the consult with explanation of lymphoma, his background and my current condition from his knowledge once he hears what we have to say about how we got to this point.
MORE ... (to be continued)
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