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"!

Saturday, July 17, 2010

Answers

Sorry it has been a while since I have updated this blog - each day seems to be waiting for the phone to ring, talking to the insurance, working with my PCP (Primary care Doctor) and office to get the right notes, referrals and paperwork to the insurance, talking to the oncologist office to fill the gaps and working with Dr. Barnes as we anxiously awaited the results of the bone marrow biopsy and then ultimately the slides of my original CT biopsy that had been shipped to Vermont and eventually made its way to Mass General pathology.   As you can imagine working with 2 different hospitals, and 3 doctors has been quite the juggle.  All so worth it in the end - the RIGHT diagnosis to start treatment.


Bone Marrow biopsy results!
The bone marrow biopsy results came in and Dr. Barnes called us first thing on Monday letting us know that there was lymphoma in the spine and bone and the diagnosis didn't match the original pathology report.  He talked about the other possibilities and we were now up to 5 different types of lymphoma - including Berketts (?) and  a type of Hodgkins Lymphoma.  Although he reassured us that the prognosis was the same, treatment would be different for each.  When he gave us those results the slides had not reached MGH and he recommended that if there is a variance we would need another biopsy to be conclusive.

Another biopsy?
If possible we could get the biopsy at MGH, but if it can be done locally and shipped out specifically the way they need it for slides to be made we could have it done here.  We made calls to pathology at Cooley Dickinson to understand their process and also to the insurance to find out what was "covered".
So we scheduled a surgical biopsy at Cooley Dickinson - with Dr. Marvelli - who has been so flexible with his schedule to get us in very quickly each time we have called.  Again, we are so blessed.  Sometimes it scares me knowing they all have seen my CT biopsy and  scans that they know how fast this "thing" is growing inside of me...

Insurance craziness...
In the meantime we have been stressed about tests done "out of plan" that may cost us "out of pocket".... Thinking that notes may have been sent to help to get those tests at MGH approved, we still had not received word.  The oncologist office gave us the name of the case worker at HNE and we made the call to talk through what is going on currently with all of my tests, visits, and eventual treatment.  Joyce was so great - we talked and she let us know what we still needed and then referred us to the case nurse.  Ann was another great person to talk to putting us at ease with the stress of not knowing the system and what to do moving forward for referrals and more.  She recommended we talk to the oncologist to get the notes for the out of plan tests and hopefully they will be approved if they were needed.

The phone call
After we called Cooley Dickinson pathology to track where the slides were en route to MGH - we found out they had been sent.  Then we got the call that they had been received and were being reviewed.
It was a full day of waiting for the call --- MGH pathology had received the slides and Dr. Barnes was working to get the results for us.  We talked to him a couple times and let him know we have the surgical biopsy on the books for Thursday.  When he said we might not have the results until Thursday --- well... we pushed again --- wanting the results.  Before long we got another call from Dr. Barnes.  I had encouraged Steve to go to the gym and was able to 3 way him into the call with Dr. Barnes (gotta love technology).

Bottom Line
The best part of talking to Dr. Barnes is that he is so professional, gets right to the point, shares the facts, asks if we have any questions, gives us some action and is extremely clear!  He shared his notes from our visit and the call so rather than taking this from my notes (that I so diligently took during the call)  - I can take it from his.

.... surprisingly her bone marrow biopsy shows nodular lymphocyte predominant Hodgkin lymphoma.  NLPHL is a rare disease (5% of all HL) that normally presents in young men as limited stage disease.  Stage IV disease an extremely rare event in this disease.  However 5-10 % of patients with NLPHL will transform into DLBCL. (Diffuse Large B Cell Lymphoma).  It appears this is the case for Nancy.

Treatment:
No surgical biopsy is needed as the treatment target is DLBCL and because of the CNS relapse risk there is additional treatment needed recommended to have at MGH.

Doctors like to speak in acronyms and treatment for cancer has a long list!
My treatment will be RCHOP (C is for Chemo)
6 cycles of RCHOP with  repeat PET scans after 3 and 6 with Methotrexate on day 15 of cycles 2,4,6
It will be 4 months of office visits, chemo and trips to Boston for treatment and follow up.

Good news -- Bad News --- Good news
So it's curable, treatable and the target DLBCL (common) a cancer that is treated often and can be easily done locally where I can sleep in my own bed and not have to make the 4 hour round trip drive to Boston.  Having the added complication of my cancer originating as NLPHL needs to be treated in Boston so they can get blood tests results timely and I am able to do this as an outpatient and not sleep in   the hospital.  (Not sure I would like the beds - I am more of a Marriott girl...  and where would Steve sleep?  I think we are staying at the Marriott)  :(  So we go to Boston and they can check up on me and I can say hi to Dr. Barnes, Sophie and Chad (his support guy - more on Chad later).

In the beginning it was all so scary I really didn't know if I was going to live or die -- talking to the best doctors in the world (I have now ranked them personally!) - Dr. Len, Dr. Barnes & Dr. Mullen--- has put my mind and psyche at ease.

Yes - I am strong - I will beat this thing, harder than anyone!  Watch, wait and see....



Mom sent me flowers right at the beginning of all this craziness.  I love my family and my friends and colleagues so much!  Everyone has been so wonderful --- I am so blessed.    I have been participating in this online workshop on my other blog - Mountain of Dreams - and this is a picture of the flowers with my expression of my biggest strengths and weakness.  It truly has come out in this experience!  

Our family sends our love and appreciation to all of you.  I have been keeping this off my "wall" on Facebook, but I have been able to get this news out and share the blog with many.  Please leave a comment if you stop by!  I have received so many notes of love, support and care and offers to help it has been incredible.  I have kept EVERY ONE of them!   And I just got another vase of flowers from the ACS Employer Initiative team yesterday...  so very sweet that I am surrounded with such love and support!  I have the best support network anyone could ever dream of.

Thank you


More later.... there is definitely more to tell ---

4 comments:

Karen said...

You've been on my mind and heart Nancy. I am so glad that you are getting such good medical advice. You are undoubtedly the strongest and HEALTHIEST person I know. I will be praying for you every single day as you work toward total recovery and for Steve as he does everything in his power to keep you comfortable and happy, as I know he will!

Nancy E said...

Thank you Karen! Your words are heartfelt... Having an amazing caregiver is the key, someone who is by your side mentally and physically every day. I am truly blessed.

Katrina Alderson said...

Hey there lady,
Just wanted you to know everybody here is thinking about you, knowing you will be the most beautiful bald woman in the entire world. Go Fight Win!
Katrina

Elizabeth said...

Hi Nancy,
My son-in-law, who is a marathon runner, directed me to your site. I have recently lost 60 pounds and am preparing to run a 5K. But more than that, nine years ago our youngest son was diagnosed with lymphoma, went through treatment, and has been healthy since, completely in remission. He ran his first marathon, in Vermont, on Memorial Day weekend. Cancer is an awful disease, but a hurdle in the road of life. Your family and friends will get you through, and you'll be running marathons again. I really believe in the power of prayer and miracles, and you and your family are in my prayers. God bless.