My journey - battling lymphoma

Recently I celebrated my 46th birthday. I love celebrating birthdays! Then I participated as a co-captain for our local "Quabog" Relay For Life and the Pack 57 Rocks! Cub Scout Team. This was the time frame that I had discovered an uneasiness in my stomach and growth in my spleen and stomach. After weeks of monitoring, my husband Steve took me to the doctor who felt the lumps and ordered a CT scan. The CT scan showed a massive area, my spleen enlarged to twice its size and an additional growth lower in my stomach. Next was the localized CT guided biopsy and subsequent PET scan. The biopsy showed positive for lymphoma and most likely Diffuse Large B-cell Lymphoma.

This is my online journal sharing my experience through battling this cancer that has abruptly entered my life for no apparent reason. The story is documented here if you want to start from the beginning, you can check the archives on the side bar.

As a top competitive master athlete this year winning my age group at the Marine Corps Marathon and placing 3rd in the New England Trail Running Championship I have been truly excited with my results of late and am a truly driven athlete. Driven by goals.... my goal right now.... to beat this "thing"!

Friday, July 9, 2010

Second Opinion: Talking to the Expert (part one)

Today we traveled to Boston we our hope that the pre-authorization from the insurance would come through in time to approve our visit to Mass General Cancer Center - one of the best cancer centers in the country.  Many of the docs trained and have worked at Dana Farber and they have first class lymphoma specialists on staff.  In a rush we have pushed to get an appointment with the recommendation from Dr. Len to see the best - make sure there is nothing out of the ordinary and get the RIGHT diagnosis right from the start.  As common as the lymphoma may be, in today's medicine there are so many different types of lymphoma and slight differences in treatment that really make a difference in the treatment and eventual cure of the disease.

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 endocrinologyorthopedics,respiratory disordersgeriatricsdigestive disordersneurology and neurosurgerykidney diseaseheartrheumatologycancerurologygynecology, 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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