It's not over until the Fat Lady Sings.....

NOW we just need to find a Fat Lady radiologist!  HA!
All jokes aside, I have been very lax on updating this blog for a few reasons.
One is that Blogger says I have used up all my photo space and can't post images anymore - BOO!  I need to imbed pics and that is just too much extra work for me right now.
Two is that I have been overwhelmed.  Work and life in general has not been so easy to juggle since chemo and I had to give myself a break.  HR has been great at work as well as my supervisor and all the great people I work with at the Society.  I have such high expectations of myself, it is so hard not to work at 100%.
Three is that I really don't know what is next.  And I guess I am in that denial stage of not knowing and just staying positive that this will be just another blip on the screen and life will continue to get back to normal.

They found something on the final PET scan and Dr. Mullally pushed because of my symptoms to do another quick PET so we could be sure it was all gone.  Well, lo and behold it wasn't gone.  Just a little piece, but it did show an increase and after consulting with Dr. Barnes the next course of action is to remove my spleen.  We had a quick visit to Dr. Barnes where my blood levels were just about normal (not quite) and he made the recommendation to remove the spleen, biopsy it and then take the next steps once we get those results.  It could be more cancer, or we could rectify the situation with removing the spleen.

 We then met with Dr. Yoon in preps to get my spleen removed 3 weeks from that day.  Dr. Yoon was to the point and shared with us the procedure and the need for immune shots so I could have that 3 week prep in my body before surgery.  He gave us a low down on the recovery and knowing what a committed runner I am (obsessed? crazy?) he realized it would take a lot to hold me back and recommended 2-3 weeks (with others he recommends 3-4 weeks) and realizes that he would have to put my legs in a cast to stop me from running.  He pegged me quickly don't you think?  I smiled and felt strong.... all I could think about was the Boston marathon, Snowbird and Mt Hood.   ALL still on the calendar, all systems go --- just need to get this behind us.

Bottom line - surgery is this next Monday at the Wang Building at Mass General at 7:30.  They are removing my spleen and say I will be in recovery at the hospital for 2-3 days.   Steve is going to be with me the entire time and I am truly thankful for our neighbors, Mike, Fabiola, Christian, Marissa & Evan who are going to take care of Schuyler and keep him in school.

Thank you all for your prayers and support, flowers, Itunes giftcards & CHOCOLATE!    I will post more when I know more.  In the meantime, the Dream Team is running Boston because we have to KICK this beast of a disease!   You can now LIKE us on Facebook!  I am only 1/2 way to my goal so all of your donations are appreciated.  I have put in some major miles the past 2 weeks getting ready for this FORCED taper.....

2 quick photos to show you my hair is coming back!  Now let's just pray I don't have more chemo in the stars!

Hope & Inspiration: The Wall of Hope and the Healing Garden

Photo of the picture of Lynne Graziano-Morin with her Dr Gebhart - the doc she trusts!  :)  Lynne has been a great friend and true resource for me.  I think you can read her story below -- it in itself is a true story of hope and faith in surviving cancer.  I feel truly fortunate to have her as a friend and someone I trust to help me get this diagnosis as quick as possible.  She directed us to Diane Smith the head nurse at Mass General Cancer Center to get our intial appointment with Dr. Hochberg that we had to cancel for insurance reasons.  and then was also just able to help us quickly navigate the system and get real feedback -- and she always answers my phone call.  :)

The Healing Garden on the ninth floor outside Children's Oncology area.  A calm and beautiful spot overlooking the city of Boston and the Charles River

It's all about HOPE - from Children's Oncology area at Mass General

As we walked around to the wig shop and talked to the lady there who was so nice - preparing for the months to come....  we passed these felt "quilt" squares and these words in particular were my favorite of the more than 40 hanging from the ceiling.  The words alone give strength, hope and share such love.  :)  

(Side note:  These pics were taken with Steve's new Iphone.... not bad eh?)  :)

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 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)