Bye bye Spleen! RIP!

If you don't need it - get rid of it!  If there may be cancer in there - just take it!

The weekend before the "knife" was a lot of fun at Mount Snow skiing with my "girls" for the last time this season and then out on the hill until last chair with Steve after skiing with the group.  The skiing has been so amazing this winter!  We have enjoyed every moment possible on the hill....  The Stratton race was the next day, we drove home knowing it would be more comfortable sleeping in our own bed before heading out in the morning.  Schuyler stayed with the Feliciano's, who truly have become such great friends of ours this season.  Sunday, Schuyler raced, Steve coached and I took photos of all the racers...  I love the energy of the kids on the course and so proud of Schuyler & his friends as they ski by... my photography has been such a great focus for me during my "cancer" and I feel I have taken it to a new level.  It is always great to focus on something you are passionate about when shit is hitting the fan.  :)  Just kidding.  But just like my marathons, I have been spending time training, or sorting through thousands of ski photos to take my mind off what "may be".  I have such an incredible support system on the mountain... all the parents in the ski club, all the coaches at Devo & Comp and of course my incredible family.

After the Stratton race we were headed straight home after a little Schuyler search to find him at the ceremony....  Once home we got Schuyler ready to spend the next few nights with our amazing friends/neighbors the Courchesne's.

Our trip to Boston in the morning on the Pike for almost 2 hours put us at the Wang Building of Mass General a few minutes late, we signed in and within 15 minutes "Nancy Cook" was called to the changing area.  I felt like I was in the army with these big plastic bags for my clothes and shoes.  I gave all my "valuables" to Steve - changed in the room and joined him back in the waiting room with my johnny & robe.  Pretty funny when everyone else was in street clothes.... even for that moment, just a bizarre feeling. They called my name again and I was brought to a gurney / spot in the waiting area - met the first of what seemed like 1000 nurses of the day.   This nurse took my vitals and initial bloodwork (they always seem to remark how low my vitals are - 110/50 BP & 50 pulse - all that running is good for a reaction I guess! ;)  She and many of the others seemed to be reading my file of how I ran the Chicago marathon while in treatment and just looked at me in disbelief and in awe at the same time.  I sort of felt like a "star". Steve was finally able to join me for a few minutes (it seemed like only a moment) and they whisked me away down the hall.  Pretty funny how all the orderlies know each other as you move around this HUGE hospital - they smile and are just so sweet.  

They found me a spot in the hall - and the anesthesiologist, a short woman with a huge smile and friendly manner began my "interview" - She promised they weren't going to do the surgery in the hall and showed me the room.  I then met a few more nurses and "team" that would be taking care of me.  Mass General is a teaching hospital and there are many people that again were reading my chart and making me smile with their comments about my running.  :)  (I like that).  :)   My surgery was scheduled for 7:45 am and we were on time.

Funny part is that is all I remember now that I am writing this.... I remember seeing Dr. Yoon wandering in the hall and he shook my hand, said hi and .... well it seems to be a blur.  The drugs were real good because honestly I don't remember anything until I woke up and saw Steve there with me in the recovery area.  I remember that we didn't get to a room until around 5ish that day.  Long day!  I remember my friend Robin Popp came to visit :)  It was great to see her, but I felt so out of it.  Steve was so patient, I guess he just had a long wait for me the entire day.  They said the surgery was a complete success, the initial findings did not indicate any cancer, but the spleen is so big it would take days to biopsy it.  

Finally in the room I was regaining my sense, although in quite a bit of pain from the surgery.  They had tried different pain killers, some that made me nauseous.... my throat was really sore and it was just exhausting.  Steve had his computer out and was right there by my side.  Such a lucky girl.

The lady next to me had her husband or friend there and it was around 9 pm that they wanted to kick them out because of visiting hours.  We had hoped that we could talk them in to letting Steve stay because I was so nervous and anxious, but I didn't have the energy to fight with the nurses.  :(  So he made the trip home that night.  I slept a little, only to be awaken it seemed every couple hours because my roomie and I were on separate times for vitals.  Steve came back first thing in the morning and the plan was to get me home that day...  I desperately wanted to be home in my own bed and getting some sleep so I could heel. :)

Dr. Barnes stopped for a visit during the day - remarked that I looked great, the surgery went well and again no initial signs of cancer.  They had biopsied one "slice" - but needed until Friday or Monday for the results.  To have my spleen removed was the least invasive of all the options.... I just prayed that we would not find more cancer.  Dr. Yoon stopped by too.  He was happy with the surgery results, meaning no complications.  He was a little wary about me going home so soon, but knew that was my goal and made it clear that I had to have enough strength but it was possible.

The last of the 1000 nurses and "team" working on my care was Kristin (sp) and she was awesome.  The goal was to get the catheter out and to be able to walk to the bathroom and back.   Give me a goal - I am there!  She found me sitting up on the window cil ready to go - and she checked me out.  It was 3 pm and we were bound to beat the Pike traffic that afternoon.  

The ride home was really tough.  Bumps were awful and I braced myself for the potholes on the side roads after getting off the Pike.  It was pretty painful.  Once home I could rest.   Recovery this week has been slower than I really wanted it to be, up until yesterday the bumps were just excruciating to my stomach.  Schuyler went to the mountain but we stayed home where Steve did some major driveway repair from the rain, mud and flooding.  

I am so blessed and thankful for all my family and friends.  Flowers, chocolate, cards, books and the coolest of packages to cheer me up have been flowing to the house.  Thank you all so much!

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!

RCHOP #6 - Enduring it till the end!

I wanted to label this "My last and final treatment cycle" or "The Light at the end of the Tunnel" or "The Finish Line that I have been waiting for..." or "it's OVER now"!  But the weirdness of it all surrounds me, with the accumulation of all the chemo inside of me, each round has been more difficult to take, and it isn't all about the treatment days, but the endurance of all the symptoms that follow.  I have some cancer survivor friends that have been prepping me for all of this, but I really just keep my eye on the pie, the last treatment, the upcoming hopefully CLEAN PET scan and my hair growing back, my stamina and my drive returning and more of that old "Nancy" that I miss.

I anticipated the last treatment as one that would be tough and really didn't want a self fullfilling prophecy, but knew it wouldn't be easy.  RCHOP 5 was tough enough, but this one - I just had a feeling.  I have been pushing myself to work as much as possible, keeping up on the important stuff and proud to be doing all that I can in this state of healing.  This week I decided I really need to get myself back on track and start the healing process.


We had our routine down as I said in RCHOP 5 and as usual we were a little late getting there for our chat with the Doc and intake nurse.  I decided to get on the scale backwards and not look at the number, knowing all that Halloween candy weight wouldn't make me happy.  :)  We joked and the nurse smiles as she asks me her usual "So - how are you feeling"?   I take the chance to tell her all my aches and pains and falls and stuff that she really probably doesn't need to know, but it seems like a great time to list them off.  :)
1. My chest is still aching from a fall in the trails before the 5K I ran on Saturday.
2. My toes are still black and blue and my right toe nail may fall off - still issues from the Chi Marathon
3. I have the sniffles - something Schuyler must have brought home
4. Feeling bloated and a little exhausted
But otherwise GREAT!  :)  She laughs and takes notes, probably thinking  I am crazy.  :)

The doc comes in and asks the same question and I get to tell him the fun story of how I body slammed the ground after tripping in the trail, probably because I can't feel my toes and pick up my feet as well as I used to? (OR at least that can be my excuse for now)  -- My friend said that if it doesn't get better I probably should get it checked out - so I told her that I was seeing the Doc and maybe he give me a 2 for 1 on the next check up.  He laughs.... and smiles...  and is so excited to share that all my test results are normal and good.  No anemia, blood levels are good and everything is in order!  Yay!  We really think that the exercise and good healthy food, prayers and healing surroundings really pay off and are so happy.  So after a bunch of ski talk, gear talk and getting excited for winter, we head to the CHAIR.  :)
Photo of Steve, me & Doc Mullally  (actually taken after the "high Five finish" as we were getting ready to leave.

That familiar chair (and there is an extra one for Steve) - oh so comfy with its pillow and blanket waiting (I know that I am napping later, so this is all good).  I load up my side tables with my ITouch, IPad and Mac -- get ready to do some Farming and then settle in for my nap. Those of you that don't follow me on Facebook, Farming has been my mindless distraction to get me through some of this and I must say I have an incredible Farm and Winery too!
 :)  Love the photo below --- with my new Smartwool boot/slippers.  :)

My inspirational jacket of the day was my Chicago Marathon 2008 jacket which reminded me of the HEAT wave I endured and still ran a 3:26 marathon (even though I truly complained at the end - hoping to run a 3:10 that day!) Steve still remembers me blaming him that I didn't get enough training in that marathon -- until we found out that they cancelled the race and asked all the runners to walk back after a certain point.  Crazy marathon experience that was!  We had our down jackets that morning as it was in the 40's at home when we left the house.  It was nice to have my down jacket with me - kind of like having a sleeping bag - definitely a comforting feeling.  Love my Marmot down jacket!

 The cheery nurse comes over to "stick" an d"juice" me and I get to meet the new girl too -- a long time nurse now in Oncology (when she got to see my blog she was a little stunned with it all - made me feel like the Wonder Woman that I am) --- but I am strong, I endured this whole thing, running the whole way.  :)  Once loaded up the Benedryl drip started and I was out --- They RCHO the chemo routine inside of me and I slept through most all of it.  Woke up around 12:30 starving!  We got 2 sandwiches at the Roadhouse and I ate that second one for lunch.  Yummy.

The end of the session I got some photos to share as I love to include photos with these posts.  Got one with the Doc this time.  He has been so amazing.  We feel so blessed to have found him and this office of amazing caregivers.  A comforting, relaxing, healing place to be treated.  I introduced myself to the other patient that was there and talked to her a little before leaving and wished her luck with her treatments.  Then to the back where the nurses mix the drugs -- with the kitchen in the back too.  "The Control Center" :)  It's like the backroom  or waitress station where it all happens.  :)  They are the greatest too.  The one nurse gives me a hug as I shared the print out of the RCHOP 5 post where I featured her photo -- She says "You have endured this like no one else - we are so proud of you" --- tears welled up in my eyes.  Who knew I would be sad saying goodbye?  I can't say enough about how great they were all to me at that office and how comforting it was to know I was getting rid of this cancer in my body --- the strongest way I know how.

We said goodbye, knowing we would be back the next day and later again to get checked more, but this time - I know that I won't be getting that "poison" in my body and it is going to be all about a healthier me in the future.  Cancer Free Me

SO the big Shot that was on Tuesday - used to give me chills and pain is now under control with Aleve and rest.
The Prednisone is totally no fun - but I know it is only 5 days of craziness, mood swings, retaining water, a little nausea, heartburn, etc...  But when this week is done --- it's done.  My hair is even starting to grow back a little and that has truly put a smile on my face.

Cheers to all of you and your sweet notes on facebook and daily mile and comments here on the blog.  I really appreciate all of your loving support and prayers.  Like I said - we are truly blessed to have such an incredible support group all across the country.  Thank you!    Please leave a comment if you stop by!  I love getting notes and comments here are read and posted!

RCHOP #5 - Angels in White

I realize that I needed to do a post about my #5 treatment,  but it all has been such a challenge lately that I haven't even finished sharing all that i wanted to share about the marathon.  We worked the schedule with Doc Mullally that I could delay #5 treatment because we were flying home on Monday.  On Tuesday I needed to get to Northampton for my blood tests and doctor visit before treatment begins on Wednesday.  I was truly on a high from the marathon and smiling ear to ear as I walked into the blood draw office, where our friend (who I still don't know her name) greeted us in her New England way ( a non-greeting, non smiling, let's get to it greeting).  I can't 'remember now what I said, but I was doing my best to make her smile that afternoon and was successful!  Or at least I got half a grin - which is HUGE here in New England, if you know the type, you know what i am talking about.  I was looking for her name on her lab coat and the only thing embroidered there was the hospital name "Cooley Dickinson Hospital" - so now we call her "Cooley".  She is the best draw in the East!  She never makes a mistake, always "gets" the vein - does a quick draw and we are done!  Gotta love it.  :)

Then off to see Doc Mullally..... he was all smiles as usual and the girls soon showed us to the exam room.  It is such a warm and inviting office with all the photos and the artwork on the walls.  As much as I hate to go to treatment because of the after affect - I really love it there (as far as oncologists offices go - LOL).  I had made him an 8x10 enlargement of me in the Chicago marathon alongside BatGirl (which is now my header of this blog).   I "autographed" it and put the times and date on there too- perfect for framing!  He commented "If that doesn't inspire you - I don't know what will!" as he walked to his office looking for a prominent place to put it.  He had asked us to call from Chicago when I finished so that he would know I was ok.  We text him my results when we were there and he was happy -- (not sure how I could tell that in his text - but I could.  :)) So now in the office we told him the story of the race and how it went - it was so fun to share and he was truly impressed with my performance - AMAZED actually.  He is an athlete (past ski racer, etc.) in his own right  -- dedicated to his fitness and family's fitness and it shows.  His support of me has been there and true.  We have appreciated that more than he knows..... in the office it was like going home to the team and sharing the results to all of them as they huddled around to see the photo and feel my energy.  I still was feeling the endorphins and the excitement of finishing the marathon and sharing the story made it all come back.  : )

The next day was treatment and we are finally in a routine, although when we are running late we miss those RoadHouse Breakfast sandwiches!  ;(  There always seems to be traffic across the bridge as we peek toward the river and wave to our boat at the Sportsman's Marina.  Barely making it there "on time" to sit and wait in the waiting room, Trista greets us with a smile and off we go with all our gear for the day (snacks, books, computers, nano, Ipad, MacBook and my IBM for work too) - finding our favorite chairs right by the nurses station.   

Angels in white above  -- these nurses have been a part of my treatment since the beginning.  They both make me smile.  They are my angels in white - the unsung heroes of the journey of so many cancer patients.  Funny I am wearing white today too and this photo is just real warming to me, knowing how I am on the last "leg" of this marathon! :)

My inspirational tech shirt of the day was my new 2010 Chicago marathon shirt which I LOVE (not only because of the accomplishment it stands for, but because it is Schuyler's birthday too! 10-10) I wore my new track jacket from the marathon too - which I love and thanks to Judy's recommendation I was able to get one of the last ones they had on the rack!  Once all comfy - the nurse came over set me up finding the perfect vein (which they still admire! :)) and the drip of drugs began.  This time was a little different in that the Benedryl HIT ME HARD -- stopped me in mid sentence where I couldn't keep typing.  I then passed out and slept until 1 pm.  Seriously it was crazy -- I vaguely remember the doc floating by and the nurses milling around, and Steve checking on me, but I was OUT.  So much for getting any work done.  I had my nano playing a playlist and it must have just kept me in that trance.  That and maybe I needed the rest?  So needless to say the treatment FLEW by and before I knew it, it was time to go ---

Earlier that week Alison from the National DetermiNation Team had asked me if I would speak on the nationwide Webex for staff at the American Cancer Society as the inspirational speaker.  I let her know I was in treatment and would do my best.  Well -- here it was time for that webex.....  and the room was empty of patients.  I asked Steve if he thought i could do it -- feeling like I had just slept for days..... and still a little fuzzy.... he said sure, if I wanted to I should.  So I called in.  I shared my story.  I shared my Chicago marathon experience and I shared a bit of my DetermiNation experience.  Half asleep, I hoped I was inspiring -- it was crazy though because the IV was still in my arm as I pulled the setup around the room to a small spot and the doc and nurses walked by...  The one thing I remember from that call was Ann McNamara from Illinois chiming in - saying hi -- she has been a friend for such a long time in my career at the Society.  Her strength and care and passion for the mission of the Society shines through every time she speaks.  She said through DetermiNation we (the ACS ) are "changing the way we look at cancer patients" - She is right.  survivors are strong - strong and determined.   Determined to survive, determined to finish and determined to made a difference in the fight against cancer.   I can relate.  Once you are put in the position that your life may be taken away from you by this disease and you get beyond that - you want to fight - you want to show "cancer" and others that it can't take you, can't take your spirit, and can't take your strength.   As hard as "IT"has tried --  --- I am "one touch chick" and "Super Vixen" and "Wonder Woman" and all those other great things that the cards portray sent from people from all over the country. -- My support group is immense.  My "team" of supporters are as strong and dedicated as I could only wish for -- they all want to see this disease eradicated.  The strength of all their prayers is heartfelt and true.

Above my latest self portrait taken right before leaving for Chicago when I was looking strong and still had some color in my face.  I guess it depends on the day.  Lately I have been avoiding the mirror unless I have that silly blonde wig on. :)

Thanks for stopping by -- it has taken me a while to write this as the treatments have been harder and harder to recover from.  It took a 2 full weeks this time! The symptoms get worse, my nausea is looming.  I feel & look sick.  My emotions have been going crazy and I have been pretty down and out and moody.  I am done with being bald - and can't wait for my hair to grow back.  My energy level is low, I am exhausted and need extra sleep, the heartburn is nasty and I don't have much of an appetite because my mouth feels burnt and my throat is a bit sore.  Don't worry - I manage to eat and have not lost any weight. :)  I think finally after 2 weeks I feel almost back to normal (or at least "during treatment" normal).  I can run this week again and that feels great despite the tingling in my hands and feet getting a little worse.  I still need to write about the DetermiNation experience at Chicago -- so stay tuned.  :)  And RCHOP #6 is NEXT WEEK!  My last treatment!  I can't believe it is finally here -- I think I am buying balloons!  :)  Yay!

Please leave a comment - I love to read the comments as they really give me strength & hope.  You are all my support group and cheering squad.  I love and appreciate you all!  :)

RCHOP #4 - Making some "head" way!

Officially we are more than half way there and making "head" way!  Funny reference to the head.  I thought I would get used to the look, and well I guess I have in my own way been proud of how strong I have been, but it is wearing on me....

  I keep the end goal in mind, and think early November the treatments will be all completed! Yay!  It is hard to share what this is really like, but I am doing my best to update this blog and keep writing about my experiences.  When I don't feel well I really don't feel like talking about it.  So much more fun to share happy and strong thoughts, than when I am down, weak, tired and feeling ALL the symptoms of what chemotherapy can bring.  Denial is sometimes what keeps me strong, denial that my body will get weak and that the symptoms that are truly bugging me are going to slow me down.  OK -- I admit it, I have cancer and the chemotherapy is getting to me!  I am so SICK of being sick!  I don't like the way I look, my bald head, lack of beautiful hair, sunken eyes, pale face and lack of energy that I know I have deep inside.

This is a late post for RCHOP #4 - as it was last week.  Of course having the actual treatment of the "poison" going in your body is one thing, but the reaction to it is another.  The accumulative build up of the so far 2 1/2 months is starting to take affect!  

Symptoms that are BUGGING me are: 

1. Moodiness -- I think I am going to beat someone up.  Best I stay home and not let people bother me.  I had a few instances last week where I have no patience with people.  I have a very short fuse and expect people to be nice to me.  If they irritate me I let them know!  My friend Jessica says it is the prednisone.  Fun times!

2. Tingling of my fingers and toes when I run -- I realize now that the blisters on my feet was actually the fact that I can't feel my feet.  The tingling of my fingers when I type is very odd... it is tough to run in the trails as I feel I am going to trip and break an ankle at any step.  

3. Nausea & Heartburn - taking pills for this, but really doesn't help much.  It could be a lot worse I realize, but my appetite has lessened and I really am eating for fuel right now.  When I eat and the heartburn acts up it is nasty - just hurts, and eating is truly no fun. :(

4. Mouth sores -- OK - I thought I would escape this one after going through methatrexate and not having anything, but it is evident with the last cold sore on my lips and the inside of my mouth just burning from whatever food I put inside that they have arrived.  I take lysine like I did before and that seems to help, but the burning in my mouth is not going away so fast this time.  :(  I feel ugly enough as it is without having sores on my mouth.... hopefully it stays internal. :(

5. Exhaustion -- is that a symptom?  I nap daily.  I get so exhausted late at night I take it out on the people around me (see moodiness above).  It is truly tiring to be treated over and over.   I get blurry, fuzzy, dizzy --- lack of focus at work and really need to take a break.  Which I am planning and have been doing more and more.  I really need my rest.  So I don't become a BEAR! :)

OK - enough complaining...... thanks for listening.....

___________________________________________

But with all that said -we received week SUCH GREAT NEWS from Doc Mullally with the results from the PET scan!  The PET scan showed tremendous results and minimal cancer remains in my body.  It works - it's gone!  My body is reacting well to the treatment and we are killing the cancer.  

Highlights from the Cooley Dickinson report:  "No metabolic activity is seen within supraclavicular nodes as was noted previously.  No activity is seen within a previously markedly metabolic pericardial node with node previously measured 9x16 cmm and now measures 10x7mm.   The spleen previously measured at 16cm in AP dimension is  now 12.5!  No metabolic activity suggestive of bone involvement.  Overall TREMENDOUS response to therapy has occurred with marked reduction of tumor volume & metabolic activity.  Mild residual metabolic activity remains.  SUV in the spleen has gone from 17 to 3.6.   

____________________________________________

Back to RCHOP #4 -- after meeting with the doctor and setting up shop in our usual place with my MAC, my work computer (which I am sorry - I didn't get to work) - my iTouch and iPad with Steve's headphones to listen to Pandora -- got my snacks and set up camp.  It has to be a funny sight if there are people in the waiting room to see us pile in to office with our bags ready for the day! :)  I downloaded a bunch of new music while they took some blood tests as my Blood Oxygen levels are getting lower (we hope to monitor them for Chicago - so I don't lose too much energy and may need some additional medication to combat).  Then listening to music and some new books on the IPad kept me busy throughout to the point where I did not even get a nap.  Which is a bummer, because the "Benedryl Nap" is amazing!  :)

New nurse in the office (training) -- didn't memorize her name, but she is all smiles and a joy to have in the back.  Her fun attitude and light heartedness made my day. 

Treatment ended around 4 pm on Monday so we were due back for the shot 24 hours later.  My mood was not good and I ended up in tears on the second day - accumulative affect of all of the drugs and time of treatment on my body.  I have no patience for "mean" people and just lost it.   It was good to talk to Dr Lindsay about it and I have since recovered.  :)


Inspirational Shirt of the Day:  2008 Boston Marathon
Charlie says that they are limiting the field to 25K runners so I best figure out if I am going to be in town to run this next year with the Dream Team!  :)  2009 was a good year for me, but before DetermiNation and before cancer!  My how things have changed in such a short time frame!


Halo Protex Skull Cap --- LOVE this cap --- need to get another black one!  :)   Wish it came in pink and dark purple...  for obvious reasons! :)

Below are some great photos of Dr. Lindsay's cute dog that wanders the office.  Her little feet are so quiet and soft and she really has a look of "love".

I love the photo with the patient's bag that says "Keep Calm" -- something I need to do right now, and always.  :)

Thanks for stopping by ---- please leave a comment --- I love to hear from everyone! 

Thank you to the BU for the flowers & Itunes certificate! 

Thank you to everyone for your cards and notes!  It truly means a lot to me!

RCHOP #3 - 1/2 way point!

Late on posting this experience, maybe because I am exhausted....  getting ready to balance Schuyler starting school, soccer practices & work deadlines... even though I have really paced myself and everyone is so understanding, the treatments are starting to wear on me.  I love the time getting Schuyler ready for school in the morning - although I am the drill sargeant mommy pushing to get him out of bed and ready.... and going to soccer is such a joy, watching him play and have fun with the friends he has grown to get to know and connect with here in Belchertown.  I love my life.  I love my community.  I love my family.  I am SO blessed.  


Vitals:  (all good)
117/60 - BP -- NORMAL
11.2 Blood Oxygen Levels (still good)
141 lbs (although I got down to 137 on our scale this week!  A little on the skinny side for me) 
63 pulse


So RCHOP #3 was a quickie (or maybe just felt like it because I slept through it!) --- they were able to get the drugs into me faster because I had no reactions the first time.  Our Dr. appointment was with Dr. Rockwell, with Dr. Mullally out of town on vacation.  She is awesome too.....  we love this place --- and would recommend it to anyone faced with a cancer diagnosis.  The office is beautifully decorated, comfortable and relaxing.  The docs are #1!  Dr. Mullally is just such a real person, smart, dedicated, caring and knowledgeble.  At the same time keeps you on target and is so encouraging.  We couldn't be happier --- crazy to say, when faced with cancer --- the sanctity of having a great doctor behind you is SO important. 


Treatment started with some Benedryl which made me drowsy and blurry -- so I couldn't work or blog or think for that matter.  Next thing I knew I was out!  Sleeping like a baby in the chair!  I haven't been sleeping well for various reasons, so maybe I really needed it this time!  Once awake I got to my Itunes, and my farming and a little work too.  :)  I take it all in small bites.  My neck gets cramped up when I am at the computer too much or I would be here more  :)  I need Karin for a massage and hopefully next week we can get that together!  :)


Before you know it it was over - 3 pm and I am out the door. The second day is the shot that has some latent side effects and we are working with Aleve & Tylenol to keep the pain away. I had all my appointments and to do list ready.  Managing the care and the multiple doctors and scans and bloodwork for the next couple weeks is a job in itself.  I have a repeat PET scan to see where we are with getting rid of this cancer -- can't wait to see those results!  Health insurance has denied our need to go to Mass General so we have been spending time with Dr. Mullally to work with his doctor contacts at Bay State to arrange my next Methatrexate treatment.  It will be inpatient and we need to set up time to consult with Dr. Mertens at Baystate Cancer Care.  We are happy that we don't have to switch all our care to Baystate and can stay with Dr. Mullally --- that was a huge concern for us!  Stress on so many levels getting this all together.  But we are "on the road" so to speak to getting it all done and... 

I am HALF way there!  

 #3 of 6 treatments means I am 1/2 way! 

 Yay!

Photo above:  Steve is so incredible.  At my side every step of the way, fueled with snacks, water & coffee!

This week has been challenging for me.  Running has become really tough after treatment, just exhausted and my legs feel like they weigh 100 pounds each.  My stomach is in knots and I am having a tough time breaking a 9 min / mile.  UGH. Maybe it is the predisone keeping me up not letting me sleep or just the side effects period.  : ( I have been getting out there though, and happy I have, but still getting really tired, and hope next week is better.  Chicago is less than 40 days away!  Need to make flight arrangements and my sister is putting the final touches on our costumes.  I am going to do it!   I have made my first fundraising goal of $1000 and raised that goal to 2010 -- just because it is 2010 and I think I can!  :)  So please support me if you can.  I really am so thankful and blessed for all my friends and family support.

Photo above:  Me & My Love

Photo below: 

I continue to wear

Inspirational shirt:  Mt. Washington Road Race - 7.5 miles to the top of Mt. Washington (2009)

Inspirational jacket:  Marine Corps Marathon (2009)

Ok - yes the Dr. said it is a little "freakish" pretty crazy for attempting to do this, but I am driven and all your comments and support have been so good for me to keep going.  My friends on facebook and daily mile have been so encouraging.  It really has been a virtual support system for me across the country.  

Thank you all who have sent cards and your handwritten thoughts to me.  I really really appreciate them and appreciate you all so much for thinking of me and supporting me through this craziness of a journey in my life.  

Methatrexate: Treatment #3

My prescribed treatment is 6 Rounds of RCHOP chemotherapy and every other cycle (2,4,6) is this treatment where I get a treatment of high dose Methatrexate chemotherapy.  Total treatments = 9

To get the proper tests in a timely manner to make crucial clinical decisions the location for my treatment is at Mass Gener‎al for the Methatrexate.  They wanted me to go stay in the hospital overnight, but Steve & I really want to stay with each other all the time so we pushed for outpatient and it was available.  So yesterday and today has been our trip to Boston.  We arrived at 7 AM on Monday, actually an hour early, guess Chad knows we run late!  :)  Armed with all our electronics, computers, Ipads, Ipods, and snacks for 2 long days --- we headed to the room.  LA was our assigned primary nurse.  A very tan vibrant smiley young nurse just back from a vacation in the islands.  :)  It was great to see her bounce around the room with all this energy.  She also is an aerobic instructor!  Makes me smile just thinking about her.  She was so on top of everything and just a joy to talk to -- as you know I love to talk and she listened.... it was great! :)  And she LOVED my veins --- and got the needle with the cute pink color clip in the first time!  She listened to me talk about my running, my crash and more....  :)  She remarked how she can't believe anyone could mess up "sticking" me.  :)  Oh the stories I could tell.....


Quick insert -- the volunteers in their magenta colored coats would come around and check on you periodically.  They were all so sweet and brought food and drinks.  The first man (in his 70's) gave us the intro on the first day and let us know that in a while this 93 year old man volunteer would be by and handing out lollipops, and even if I didn't want one that I really need to listen to his story and have a lollipop.  :)  Well, it was so sweet, this incredibly energetic 93 year old man telling us the story how he had been doing this for more than 20 years, and he found out a long time ago that dry mouth that comes with chemo is best treated with a lollipop.  :)  He was even so nice to pose for a photo.  :)

It was a long day of poison, but don't worry it's safe! --- yes that is what Dr. Barnes said --- we are going to poison you -- keep you hydrated, you hydrate more so the levels are safe for you to leave after the anecdote is given on the second day and you go home!  The drug was a nasty neon yellow.  I was so hydrated from the 2 days of prep and the hospital hydration I had to pee all the time.  AND it was that same nasty neon yellow.
My urine collection was the same color as the drug, so I know it was surely passing through my body.  (Cute eh?)

My inspirational shirt of the day was my Nike Marathon shirt.  I will never forget that marathon --- starting in the dark in San Fransisco, hanging out in the elite tent, and running with more than 20,000 women!  The best part was of course when Steve met me at the finish!  I also wore my Boston marathon jacket from 2010 -- always great to make an impression with a hometown marathon jacket!  :)

 Before lunch, Dr. Barnes stopped in with an intern (a ski racer, so we had a bunch to talk about too) :)  It was great to see and talk to him too.  I love this place.  Well -- wouldn't be here if I didn't have to, but glad I am here because I know I am in the best care possible.  A truly great feeling.  I was a little fuzzy, looking REALLY pale --- but doing ok.  

 I crack myself up sometimes....  When we were leaving and paying at the patient parking window on Fruit Street I go to look for my MGH bracelet for "proof" I am a patient and she says "Don't worry" ---- and I say "OH - the bald head gave it away" --  "I think I am going to start a trend, I think it looks pretty good don't you?"  --- She smiled and looked at Steve "Your husband loves you just the way you are, no matter what!"  We laughed and went to the elevator back to car, funny how the little things make others smile and how smiles are so contagious.  Try to make someone smile today and see how you feel inside.  :)  
But when I left I felt horrible.... like I had been hit by a bus.  Exhausted.  We checked in the Doubletree Bayside in South Boston on the Bay.  Beautiful spot.  I immediately fell asleep when we got back to the hotel. 

 Samantha came to go out to dinner at the Boston Beer Garden.  She is doing so well and it was so great to see her. We went to the Sugar Bowl for dessert and met the owner.  It was so funny, because even as sick as I felt... I started taking photos around and he thought I was from the Globe and going to make him famous.  :)  I took a photo of the group behind the counter.... Steve laughs and says "You collect people"  --- :)  "People love you". 

 It was such a nice compliment to me.  I love him so much.  He amazes me to the point where I often have tears in my eyes.  His love for me is so deep, so real, so true.  I realize that more now, today more than ever.  I AM the luckiest girl in the world.  Thankful for all that my life has to give.  More today - more than ever.

I woke up this morning all swollen -- my eyes, my legs, my feet -- I was 5 pounds heavier than yesterday.  From all that water, hopefully not from the Chicken Pot Pie and Rocky Road ice cream!  :)  Dr. Barnes promised it would go away..... YIKES.  Hated even looking in the mirror, my eyes were almost half shut.  Steve still thinks I am beautiful though.... gotta love that! :)   Steve hates this photo - but it shows just how bad I looked!  We took a walk out to the bay to get some fresh air and I could take some photographs.  It was nice to get outside between the 2 long days.

Day 2 is the Leucovorin the antecdote.  New nurse today -- she is nice, but I didn't see her as much as LA.  At the end she did some "education" so I would know how to handle the side effects and called herself the "Nagging Nurse.    Thinking this is not as scary and complicated as yesterday.  Waiting now for the lab results so we can go home and beat the traffic.  And take a nap in my own bed.  

I love the buttons that Amanda L. sent and had them on my camera bag:  "Chemo Sucks", "Nurses Favorite", "One Tough Chick" and "I love Pain Meds" 

The countdown continues ----  9 treatments total --- 3 treatments down ---- 1/3 of the way there.  Although the beginning of this felt so easy, so normal, now I am beginning to feel drained.  Feeling the "chemo brain" - forgetting things, and just not able to focus like I could before.  Need more sleep and I will try to keep hydrate.
My inspirational attire -- had to wear my 2008 Boston Marathon coat.  When in Boston - wear Boston.  Ask any fan.... Red Sox, Patriots, or Celtics!  :)  Boston is a very proud city.  Full of history, full of life.

Here comes the Nagging Nurse!  "The star patient has now gotten the go ahead" and we are out of here!  

And just to show --- again --- that I always look better with my "twin" -- my perfect match.... my love, and number one fan...

On facebook I was FULL of quotes today ---- they truly helped me through the day --- enjoy! 

"ABILITY is what you are capable of doing. MOTIVATION determines what you do. ATTITUDE determines how you will do it." - Lou Holtz

"We would never learn to be patient or brave if there was only joy in the world." - Helen Keller

"Surround yourself only with those that make you smile. Life is too precious to surround yourself with any negativity of any kind"  - Nancy Cook

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