Super Heroes

"The heroes in your life are those that get you through the tough times, your family, your friends. And as a cancer patient, you learn that your doctors & nurses are the super heroes that put it in high gear when you need them the most."   - Nancy Cook on cancer survivorship

It isn't easy being "sick" --- I hate being "less than perfect" period....  I will do whatever I can do to heal myself from within, listen to my body, figure it out and get better.  I hate even taking aspirin or advil or tylenol.   I believe the power of your mind and your faith will help you heal. Before all this I went to the doctor for my ACL knee surgery, and for all my check ups, routine mamograms, PAPs and annual visits, as well as anything that would just not "go away" -- like a bad case of poison ivy or excema.   Having cancer means getting used to going to the doctor.  It means if something is "off" and the symptoms become more than tolerable you need to call.  I am really not too good at that part, and will push the limit.  These last week I was not doing well, fevers, chills, aches, nausea, heartburn and really tired to the point where I couldn't focus.  All the worst symptoms at the same time.  We found out this week that people in chemo have died from low grade fever one week out and decided that we won't ever push that limit again...

And on top of all that - my mouth is BURNT where I can't taste anything, therefore eating is difficult and my energy is low.  I hate writing about the bad stuff, so of course all you hear on this blog is whatever I can do to pull myself up and out of it.  Steve stayed home again this past a couple days to be at my side.  I have been so tired and weak at times that I haven't had the energy to write and trying to keep in a positive mindset fighting the latest challenge with the insurance at the same time going through the aftermath of RCHOP #2.

I titled this post "Super Heros" for my docs --- feeling so incredibly blessed to have the best in charge of my care.  It was a rocky road in the beginning -- but once all was on course we had connected with these amazing doctors.  So here are some recent experiences to describe my "Super Hero" Docs -----


Dr.  Sean Mullally - my oncologist (Cooley Dickinson). 
He is my advocate that came a little late into my care, but this man has he been a shining star. I look forward to talking to him with Steve at his office, during treatment and when he returns my calls.  He always asks me about my athletics and life in a way that shows he really cares. His positive outlook and encouragement has been unwavering.  Working through the insurance issues of going to MGH for treatment was our latest hurdle and he has spent many hours on the phone to the insurance company, the insurance company physician and with Dr. Barnes to coordinate the referrals.  We were denied, but then approved at the last minute, but only for one of the 3 treatments.  He continues to work his contacts for all the options and we are still hoping for our  original plan and best case (and only case) scenario to go back to MGH.  There was one point where it was mentioned that I may need to change my care to another doctor and it really had me worried.  I don't want to change.  Make that happen.  I am so happy where I am and it hasn't been easy getting to that point.  Please whatever it takes - keep me in your care.  He was happy to hear that and said thank you to me.  "You are worth it" are words that he has said in the past and it really shows in his care.  We (Steve & I) have clicked so well with him and couldn't have asked for more.

Dr. Jeffrey Barnes - Oncology lymphoma specialist (MGH)
We had the sincere pleasure of seeing Dr. Barnes again this past Friday as a pre-visit to the high dose Methatrexate that I am getting at MGH.  As much as the trip is a trek across the state of Mass, it was actually really great to see him and get all of our questions answered.  He answers them without you even asking.  :)  That is how good he is. :)  A walking cancer encyclopedia --- just FULL of facts and figures and stories and history and MORE!  Steve & him click in that department (for some reason - not sure if it is the stress of knowing it is me dealing with cancer that gets me all fuzzy.... and I can't focus as well) -- Steve takes notes and asks questions --- it is always quite informative.  :)  So they are poisoning me and giving me the anecdote  - "Don't worry -- it's safe!"  :)  But that was all I heard.  That and I need to drink 4-6 L of water a day through the weekend, to the point where I will be cursing him because I have to pee all the time.  Such humor from such a smart man.  :)  He has this great smile and jumps on your questions to answer them plus more.   I feel confident, safe and secure in his hands and recommendations.  Although he sort of advised me not to run Mt. Toby this weekend.  He said I needed to drink so much water that it would be inhibited.  I looked for another race on Saturday to replace it and couldn't find anything.  I had it in my plan (which I have a hard time deterring from) and did it anyway.  He smiled today when he walked in the room (Steve said he probably figured I would run anyway) and saw my black and blues and scratched up arm.  He appreciates my dedication and drive - I can tell.  :)

My positive experiences from the beginning with all the doctors that have helped me along this journey have truly been amazing....
 - Trish - the front office at Dr. Levheim's office worked so hard on my case, making calls, putting through referrals and appointments and following up on everything - She is amazing!
 - Dr. Levheim -- always making herself available and following through on all that we need to get this done!
 - Dr. Marvelli - the surgeon we saw in case we needed a CAT scan fit us in at a moment's notice twice and we never did need to use his services.  He checked up on the CT guided CAT and was really so great to be an advocate right from the beginning when I was still so scared of this situation.
- Dr. Hartnell -- just makes me smile!
 - Dr. Ed Mullen -- put my mind at ease and talked to us for more than 1/2 hour when I really didn't know if I was going to live or die.
 - Dr. Len -- made himself available for conference call, education, and really helped us advocate for my care.


All these doctors have been sent to us from above and we so very blessed. 


On the boat with my #1 hero & caregiver - my husband and true love - Steve  

Thank you for stopping by - please leave a comment -- 

I love to hear from everyone and read every note.  

RCHOP Round 2 Treatment Day 1: The Patient that would never leave...

Marathon day at the doctor's office for Treatment Round 2 of the RCHOP regime.  We knew it would be --- getting all the meds in one day takes a long time.  We showed up at 9:30 and prepped waiting in the office, not to linger too long Doc Mullally got us in the treatment room to hook up the meds and caught up with us later.  Glad he did or we would have been there until 6!

We had our computers in hand and I caught up on some work emails, farmed my crops on Farmville and blogged a little sharing some of my latest photography.  I really need to read up on the book and take a class (planning an online class in Sept) --- I think that to know my camera would get me to a level of even better photography!  My friend Shelley is now designing a new cool watermark for me to use on my photos and I can't wait to see what she comes up with!  My new photo blogging friends have been so supportive of my work and have even ventured here to check up on me and my "journey" of cancer treatment.

I forgot my Nano so I connected to Pandora on my Ipad and fell asleep for almost 2 hours in the treatment room after everything got a little fuzzy on the computer.  Love the new function to harvest crops on my Ipad (very cool for all you farmers out there!) -- Yes YOU too need an IPad, they are very cool and SO fast.  :) Pandora radio is so cool too - you venture off into artists that are like the artists you like and select.  Off into sleep world I went and I needed it.  We have been so busy with our British visitors and Schuyler soccer camp #3 this week.  My life hasn't slowed down much at all!

Wore my "new blonde hair" today --- and all the office staff just loved it --- I showed them the cute slide show and voting arena on Twitpoll that I have set up.  SO fun.  Thinking again I may just have to highlight it when it comes back after all the great comments.  :)

MY inspirational shirt for this treatment was the Vermont City Marathon shirt from 2009.  This was my first marathon to run as a REAL elite with all the treatment.  More on that story here.  I ran a great race - not as fast I would have hoped, but still pretty great!  Raised $1100 for ACS and met a lot of amazing people!  It was my third VCM and hope to do it again as it is in my home town area and a lot of people I know run it every year as a full marathon or in a relay.  Great race --- the water, the kettle drums on the hill and a great expo and post race celebration!  Great memories there.

I am going to fill out my story for the Chicago Marathon media team and hope to be selected to be highlighted.  Chicago is only 61 days away! Also pitch a story to Coping Magazine (link on side bar) -- that was a great find -- if you haven't seen it check it out.  My friend Keith sent me an article about a woman blogger sharing her story and noted that I could have written that story.  Her blog is great too --- it is also on the side bar.  And most important to me I have shared my story with all my ACS colleagues, past and present, Relay, Employer, New England and more...  It has been so incredibly supporting to have such a "family" of support where I "work" and have so much passion for what we do as a Society.  I sent a note to our Corporate Communications and hope to be selected at some point to share my story on stage.  If it is this December I hope my friend Cara will join me as we can be up there as Wonder Woman & Bat Girl!  How fun would that be?  I will keep you posted and also share more on what we have in store for running Chicago IN COSTUME!  :)


As you can see we were there the entire day and had the place all to ourselves at the end of the day.  I was remembering the days as a waitress when you had that table in the corner that would NEVER leave...  so I made jokes that we were going to stay the night...  and when we finally left, I said "OK - you can all go home now".
What a LONG day!  We were all exhausted and stiff when finally getting up and out of that chair!

Thanks for stopping by --- here are some pics of me in treatment with the wonderful nurses in the back.  We love this office and are so blessed to have found these great doctors and nurses for some incredible support.

Please leave a note if you stop by!

RCHOP Treatment: Day 2

Chemo - referring to chemical therapy specific to the treatment prescribed to cure the cancer that is personally set up JUST for you.

My regimen is R-CHOP.  I found this great article that explains all the drugs here on LymphomaInfo.net .   Yesterday was a mixture and today specifically the R = Rituximab.  I needed to get the first dose of this one separate to monitor the side effects as it can be tough to take on the first treatment.

Drugs in the R-CHOP Regimen

The R-CHOP acronym is composed of the following drugs:

Rituximab - the magic bullet
Cyclophosphamide - Anti Neoplastic Agent
Hydoxydaunorubicin (doxorubicin) - an anthracycline antibiotic
Oncovin (vincristine) -- vinca alkaloid works to inhibit cell division
Prednisolone - a steroid that helps with anti-inflammation

"Cocktails" are served up in the back - the nurses station - we joked about this today when I was at the doctors for Day 2 of my treatment.  I will have to start a countdown clock to post here on the blog so you all know when I am done!  So the "bar tender" nurse in the back sets up the IV drugs as the patients come in ... today there were quite a few folks in for treatment - about 6 of us total.  Steve and one other caregiver topped it off.

It is interesting seeing the different types of patients and what they have to spend the time, most have ear buds and music, but some books and writing and like to talk to the others.  Others kick back in the comfy lounge chairs and take a snooze, often to the point of snoring..  (someone PLEASE wake me if I EVER start to snore).  :)  The ones chatting about their complaints of treatment and symptoms and being not so much fun was giving me bad feelings and wary of making any type of conversation with others .... and I turned up my Nano louder to my Country playlist of the day.  Complaints or Country music - tough choice, but my running music was just driving me crazy after taking my first prednisone this morning.  :)

I wore my tech T-shirt of the day for inspiration--- my 2007 Ford Ironman Triathlon 70.3 World Championship shirt --- a fond memory of racing in Clearwater Beach Florida.  Very proud of myself for making that trip and competing that day.  Check out the story here from my Mountain of Dreams blog.  Lots of great stories from my racing and running, including running tips and lately more photography challenges, but lots of inspiration none the less.  :)  I started this blog in 2006 as a writing outlet and a place to share my racing, running and triathlon experience, my photography and my life with others.  I love looking at the archives as well as the more recent posts mostly which have been on photography.  I house my race resume here and direct people here if they are looking for tips.  The best way to surf it is to go to the labels and click on what you are interested in.  I have a separate photography page now set up with Bloggers new interface and the challenges have been so much fun.

So I worked my time away on my IBM PC to try and catch up knowing I am not flying to Houston this week for the American Cancer Society Relay For Life  National Relay Summit.  It is hard for me knowing I will miss meeting some amazing people, new companies are invited specifically to attend and it is so important that they have a great experience, feel the Relay passion, enthusiasm, power and go home jazzed and ready to hit the ground running fueled with knowledge and resources and new relationships to grow in the National Team Program that I direct nationwide.  But -- I am proud as a good staff person that i have some amazing volunteers set up to facilitate and speak with my prepared powerpoint and tools.  Rene from Curves is amazing and Melanie from the Jaycees also fits the bill as a top level national volunteer.  I also have my great colleagues Kyla Harrison, Judy Reiching, Laura Donmoyer and Melissa Ames set to present and give the tools and answers.  I feel confident that everything will be great and so happy that I planned and got it all in place with all this hanging over me the past weeks it has been completely overwhelming.

SO I will miss the purple Kool-Aid, the purple boa's, the conversations in the hallway, hearing inspiration live, loud and clear, leadership volunteers from across the country --- it is a Relay Summer Camp for national leadership and my favorite conference of the year for lots of hugs and support.

Photo of my dear friend and Hall of Fame Member - Pat Flynn and I at the end of last year's National RFL Summit:

Oh ya - back to treatment....  that was me, so focused on my email and preparing that I forgot I was there... :)  I did get some symptoms, heartburn, headache, dry mouth and sore throat - that caused a flury of activity and doctor / nurse attention!  :)  It was funny - - same as when the man yesterday exhibited symptoms, they watch you like a hawk and slow down the treatment until the symptoms go away.  Very cool indeed.  Great teamwork and I love this place.

We got to meet Dr. Mullally's partner Dr. Lindsay Rockwell - a small lady - very bright, very very nice --- with very cold hands  (which I liked actually because I am burning up most of the time these days..).  She has this miniature Australian Shepherd dog that wanders around the office meeting and checking out everyone.  Very cute.  The interior decorating is all her too - says the nurses.. (i mentioned that they should have a braided rug in the middle of the floor and if it were up to her, they would!)  It is a very comfortable atmosphere and just a super office.  SO happy we are there for this trek.  :)

To be treated in the "Happy Valley" for cancer...  just gives it a new meaning.
My power song of the day?
Just Stand Up!  Love the words.
And I found a new Caregiver song too!
Umbrella - by Rihanna  - but you need to listen to the words from the mind of a cancer survivor.  :)

Here i am with my inspirational tshirt, my IBM on my lap with my headphones... pretty funny eh?  There is the nurses station in the back where they make the "cocktails" --- I asked if they want me to donate a blender for the cause, not sure if they got my humor....  :)  But some smiled.....  :)

Humor, Optimism & Strength will get me through - thanks for all your prayers and support!  And POWER thoughts as Amanda LaKier's girls have sent!  :)  You all rock!  And have some purple kool aid for me if you make the trek to Houston! :)

Steve was so gracious to take my picture again --- check it out they even gave me Relay purple for my bandage this time!  Thanks for stopping by and please leave a comment! :)

N

Click!

The one thing we have realized in going through this experience is that to be comfortable and matching with your physician can be so important for your psyche and ultimate health.  We were recommended to and got a immediate response for a doctor's visit with Dr. Sean Mullally.  

I am pretty proud of how organized I have been collecting all my records and getting copies of my scans.  When we talked to Dr. Mullally on the phone we let him know that we had all the notes from Dr. Barnes & our scans.  I think he was impressed.  Then when I showed up with my notebook and his copies for our visit, that topped it!  :)  We were on the right path and were so happy right from the start in his office.  

We waited in the room for the doctor --- got my weight & height checked.... same - same (except I think I am shrinking!  I swear I was closer to 5'7 when I started!)  :)

A little humor right from the start - Dr. Mullally says - "All new patients get the deluxe room, we are moving you...." and we laugh....  I respond - "That's me, always in for an upgrade - "  To a nice bright exam room with windows and some nice landscape photography that I of course had to check out....  :)

He comes in introduces himself (the guy stands about 7 feet tall - ok maybe an exaggeration, but he definitely is an athletic tall guy.... )  and we share our info with him...  

Then he says...

"Can we not talk about Lymphoma for a while?"  

We shared my background, primarily what I like to talk about is my athletics, achievements, my PR's, my ironmans, my marathons, my mountain running championships, my psycho runner attitude.....  

Then he asks Steve and he starts talking about coaching, racing and how we missed Mt. Hood ski camp.....  turns out that Dr. Mullally is a ski racer and raced with AJ Kitt. He and Steve talked more about skiing, ski racing, skis....  it was really great to have that connection.  VERY cool. 

Click!  Yes this was our doctor.  A great match indeed.  He understands the athlete psyche and can totally relate to us on many levels.  

Then we talked more about me --- what I do -- it started with patrolling at Killington and then the American Red Cross, then the American Cancer Society -- and I shared with him my passion for my "job" - the work I do with the Society, the 15 years of raising funds to fight cancer....  although we weren't supposed to talk about cancer right then..... it is and has been my life.  I am so passionate about what I do -- it truly came out when I was talking to him.  

So then we talked about my lymphoma, how he has been working with MGH and clinical trials in the Berkshires and then on to what was next, treatment.  He made sure we had all the information we needed....  and we came with questions so we got ALL our answers.  

We are ready for treatment.  Starting Monday.  4 months.  6 cycles of 3 weeks.  

Monday - Treatment

Cycles 2,4 and 6 include a visit to Boston MGH 

2 repeat PET CT scans to see that the cancer is gone.

I will lose my hair - Steve thinks that is going to be the next hard part.  They say within 2 weeks it will be gone, so we need to prepare.  Getting a consult from the Pink Petal Boutique and a wig?  Hats?  Scarves?  Wow - just crazy. 

 I worry a little, more about Schuyler's reaction.  I told him this morning the "plan" because he is gone for 2 weeks and I am a little worried that he will be scared when he sees me with no hair. So I need to do this right.  He has been so strong and smart and really seems to be handling it well.  Here is a fragment of our conversation.... 

"Mommy is going to lose her hair"

"No!  You will be ugly!" he says..... 

"No - mommy won't be ugly, it will be ok, I can wear a wig and maybe I can borrow one of your hats?"

"Ok - you can....  "

"Are you worried about me?  Please always know you can ask me questions, I know you must be scared, but mommy will be ok, this is a cancer that will be cured, the doctors can kill this cancer and I need all your love"  

There is more to come on this too --- he is so amazing and strong and has such a great support system of family and friends too.  

So here we go -- tomorrow is the day....  2 days in the doctors and then the side effects begin.  Pretty  scary for someone who doesn't even take aspirin and only occasional Tylenol.  Just not a drug person....  hate to mask the pain... but for some reason I think this fight needs drugs. 

Picture below is our beautiful family on Christmas Day 2009

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 ---

"The Docs"

Here is the list of doctors that have had influence on my care and psyche so far.....

My Primary Care Doc:

Lisa M Levheim MD

Family Practice

10 Turkey Hill Rd Hampshire Family Physicians

Belchertown , MA - 01007

413-323-7700

About Lisa Levheim, M.D.

Lisa Levheim practices as a Family Doctor at Hampshire Family Physicians in Belchertown, MA.

---

Female

---

Family Doctor

---

University of Massachusetts Medical School, '87

Hampshire Family Physicians

---

Joshua Mintz, M.D.
Office staff- Holly, Trish, Barb
Medical Assistants- Andrea and Tracie

The Specialist 

Dr. Jeffrey Barnes - MASS General Oncology Doc 

Barnes, Jeffrey A., MD, PHD

Board Certifications: Internal Medicine, American Board of Internal Medicine (expires: 12/31/2019)

• Phone: 617-724-4000

My Oncologist

Sean D. Mullally, MD is a board certified Medical oncologist/ hematologist. Dr. Mullally received his medical degree from Thomas Jefferson University in Philadelphia, Penn. He completed his internship, residency and fellowship at Baystate Medical Center/Tufts University School of Medicine. He is pleased to be in partnership with the Cancer Care Program at Cooley Dickinson Hospital and to be working in affiliation with the Massachussetts General Hospital Cancer Center.
Northampton Oncology and Hematology Associates
(413) 586-0029

Dr. Lindsay Rockwell

Lindsay Rockwell, DO received her medical degree from the University of New England College of Osteopathic Medicine. She completed her hematology and oncology fellowship, as well as an internal medicine residency, at Tufts University School of Medicine’s Western Campus at Baystate Medical Center in Springfield. She is board certified in internal medicine and medical oncology.
Northampton Oncology and Hematology Associates
(413) 586-0029

Dr. Marc Read - Radiologist / Friend / PSIA connection

Dr. Ed Mullen - Radiation Oncologist / Friend 

 Mt Snow J5 Dad connection

  American Cancer Society Deputy Chief Medical Officer

J. Leonard Lichtenfeld, MD, MACP 
- Dr. Lichtenfeld is Deputy Chief Medical Officer for the national office of the American Cancer Society
Link to Dr. Len's Blog

Christopher Marvelli, MD

Surgeon
Male - 10 years experience

Cooley Dickinson Practice Associates

76 Carlon Dr Unit A

Northampton, MA 01060

Biopsy

George Hartnell, MB, FRCP, FRCR

George Hartnell, MB, FRCP, FRCR, Vascular and Interventional Radiologist

Dr. George Hartnell, a cardiovascular specialist with more than 25 years experience in vascular and interventional radiology, is board certified in diagnostic radiology and holds a certificate of additional qualifications in vascular and interventional radiology. He is also a Fellow of the Society of Cardiovascular and Interventional Radiology and the American College of Cardiology.

As a member of the Cooley Dickinson medical staff, Dr. Hartnell specializes in the treatment of vascular diseases as well as minimally invasive treatment of cancers of the liver and kidney. For more information about interventional radiology visit http://www.sirweb.org.

Dr. Deb Smith - Oncologist

Deborah Smith, MD completed her internship and residency at Bronx Municipal Hospital Center in Bronx, N.Y., and she completed her fellowship in medical oncology at Roger Williams General Hospital in Providence, R.I. She is board certified in medical oncology.

Northampton Internal Medicine

(413) 584-9511

________________

It has been a crazy journey so far of a lot of waiting until yesterday when we finally got the diagnosis and the 2 hour consult with Dr Smith.  We are looking forward to getting the second opinion from Dr. Barnes tomorrow.    I hope to add more to this particular post as each of these great doctors have had a hand in the early part of my journey. 

Another Day - another needle... or maybe not....

Starting to think that it would be interesting to document how much time on the phone we have spent with different doctors, nurses, case coordinators and doctor offices in coordinating my care and management of my "case" to get the right diagnosis.   Because of variance in the results of my bone marrow biopsy showing lymphoma in my bones and spine, Dr. Barnes felt the need for possible more tests including a surgical biopsy that would take more tissue to be evaluated.  Dr. Smith agreed and we have been working with Dr. Levheim (PCP) as well to be sure that the insurance is in line to cover all these tests and visits.

We talked to Dr. Len again this morning - which again has grounded us to look at the situation, where we are and what we need to advocate for moving forward.  He again advised us with a lymphoma diagnosis there is so much variety in treatment we really need to be sure that the tests are done and the entire area looked at and reviewed in the PET CT scan and further biopsy tests if needed.

Then we talked to Dr. Barnes -- and found out he has not yet seen (and the Mass General Pathology Department) have not seen the slides yet as they went from Vermont to Cooley Dickinson before they could be sent.  He encouraged us to call Pathology at Cooley to expedite and track it to be sure they get it timely.  We called Cooley - it was sent yesterday - Mass General called us back - they got the slides.  Hopefully Dr. Barnes will be able to evaluate them and give us a definitive plan moving forward by tomorrow and we will be more in line for this diagnosis to be correct and we can start treatment!  :)  So I may or may not have another biopsy done before this is all said and done.  :)


(yes that was a smiley face because I have this lump (s) in my stomach that from the PET scan results shows the spleen at 2x the size it should be.)  :(  AND I really want it GONE.

The other round of calls has been with our health insurance and now we know our case worker and nurse point of contact by name and have direct numbers.  It has been a good morning for that as Joyce and Ann have been helpful and positive.  Policy is policy, pre-authorizations necessary and notes and reasons all needed from docs to get the paperwork done in time for 24-48 hr approval process.  Although with this rapid growing thing inside of me, it is sometimes tough to wait much longer. :(

So back to the original reason I started this post was my thinking about all the needles so far and the future of needles moving forward......

"You have GREAT veins!" --- is the comment I get from all the nurses when they look to put in the IV, the needle for blood tests and although my vein in my hand "rolled" on the first IV -- so far (knock, knock) my veins remain strong!  Good blood running through those strong veins is a GOOD thing!  Strong body - strong mind!  

The other aspect of all these tests is the NEEDLE.  The CT guided biopsy was an interesting experience laying there on the table in the CT scan as the doc had the needle poking in my belly for the sample.  It hurt so much I said "ouch!" -- which those of you who know me know I can handle pain pretty well.  The next BIG needle was the bone marrow biopsy from Dr. Barnes - and Steve, my husband, referred to it as the SPIKE.  My bones were so strong that he really had to push and grind in there with the spike (just my words.... don't worry) to get what he needed for fluid and blood.  It was done right in his office as "routine" and really, honestly  after the numbing he did prior -- I didn't feel a thing!  :)  Eeks.  Well - I was all prepared to be knocked out again today and more surgery for another biopsy - but .... no ....  not today.

And yes - - I am continuing to run - I ran yesterday and will today - more for my sanity I think, but I really want to hit this in the best shape possible.  And if I can continue to run, I don't want to stop now!  : )   Not sure if I will be able to race - at least not until this lump is gone, but as long as I can still run, I will run.  :)

Please keep us in your thoughts and prayers.....   we appreciate all your notes and kind words and encouragement and strength.  It has been tough to keep up on the voice mail, so please comment below!

We thank the Lord for all his guidance and care - as we as make the right choices and advocate for our health for the best chances of a complete cure.

Timeline

Here we go - this is a timeline of each point in the road on this journey to date....

June 1 (approx) - Felt a little sick on my runs, stomach just not right...

June 7 (approx) - Felt a lump in my stomach, maybe digestive issues, diet?  Tried various things... Steve helps to monitor and watch the size.  Stomach sick, appetite supressed, a little nausea are my other symptoms

June 18 - Lump has grown bigger, Steve encourages me to make an appointment with my doctor

June 23 - appointment with Dr. Levheim for evaluation of lump(s) found in abdomen area

June 25 - CT Scan at Cooley Dickinson

June 28 - appointment with Dr. Levheim

It's CANCER - Lymphoma - CT scan shows indicative results

June 29 - appointment with Dr. Marvelli - pre surgery biopsy appointment

July 1 - phone conference with Dr. Len

July 2 - CT guided biopsy with Dr. Hartnell

July 7 - Oncology consult with Dr. Deb Smith

It's Lymphoma - Diffuse Large B-Cell Lymphoma
Chemo - RHOP - 6 cycles at 3 weeks = 4 months

July 9 - Dr. Jeffrey Barnes at Mass General oncology consult, bone marrow biopsy, blood tests. Blood tests good - results on biopsy take 4 days
Potential of 3 different types of Bcell Lymphoma

July 12 - Echo Heart testing at Cooley Dickinson Hospital

July 12 - Phone with Dr. Barnes - bone marrow tests show other possibilities, including Hodgkins Lymphoma - still same prognosis, but with different and possible less toxic treatment.


Need to now schedule a surgical biopsy. If we have the biopsy at Mass General we can get results and action sooner. Waiting to hear from Dr. Smith to work to schedule surgical biopsy and expedite this surgical biopsy and get a good diagnosis right from the start, which was our advice from Dr. Len right at the beginning!

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)