Wednesday, August 8, 2012

I'm In Remission, So What's Wrong?

I cannot believe how many times I have wanted to sit behind my laptop and write.  This blog began for me as a great way to share with friends and family on my progress, to reach out to those affected by Myeloma, and lastly if I am being completely honest, a free source of therapy for me.  Yet time and time again I seem to find excuses for not writing.  Some days while at the lake with my kids  or while I am out watering my garden, thoughts and sometimes entire blog posts will enter my mind .  Yet, I never take the time to write or type them.  So lately I've questioned myself why I stopped.  And I guess it's because writing for me has always been about being honest and open.  And lately, that is becoming more and more difficult to do.

It easier to get up each day, and stay busy entertaining the kids, running errands, trying to keep up with the garden and lawn (which is pretty pathetic now thanks to the lack of rain), keeping up with my recent obsession with Pinterest and my new found love for restoring furniture, choosing new paint colors for every room in my house, and whatever else I keep my mind busy doing,  than it is to stop and reflect about what is really going on with me.

I feel like lately I am stuck in a temporary in-between stage.   Although I am considered "in remission", I am still on a maintenance regimen consisting of Revlimid and Dexamethasone 3 weeks out of every month, and I have monthly infusions,    My hair is slowly growing out ( I can actually make a tiny ponytail), and I have regained some of the loss muscle and weight back.  To most people I must look healthy and like life is back to normal.  In fact, most people no longer ask how I am doing.  Maybe they are afraid to ask, or just assume that is everything is fine.  Honestly, it feels good to no longer receive the gloom and sad looks I was used to receiving a couple years ago as a sick cancer patient and mother of four young children.

So what's the problem?  I know right?  That is what I keep asking myself.  Well, for those of us who read up on Myeloma daily, we know that this disease is still incurable.  That it really does not go truly in remission.  Up until a few years ago a 3 year life expectancy was the best one would have.  Fortunately with Revimid patients are living longer.  The goal is to keep it at bay for as long as possible with the hopes that when I do relapse, my body will respond to the therapy.  And if it doesn't,  hopefully a new treatment is available. Ultimately, however the Myeloma usually wins the battle.    Daily, I Google Myeloma and read up on every little piece of new news that is published.  Of course what also pops up are far too many obituaries of Myeloma patients who have lost their battle.  I follow many blogs from Myeloma bloggers and although many of their stories inspire me, there are also several that write about their struggles with relapsing.

Although I try not to think about if and when I relapse, it of course enters my mind often especially during the late hours of the night.  So although I am so very blessed to be "in remission", it is challenging at times knowing I have a ticking time bomb inside.

 Running used to help me through some of those challenging moments.  I felt strong running, almost invincible.  Crossing the finish line at The Boston Marathon was so powerful.  I had so many doubts in my mind, even putting aside the extreme of that heat that day. For well over 6 or 7 months I have watch my endurance decrease.  My body screams at me when I have passed the threshold.  Whether it is the long term effects from being on Revlimid or perhaps the disease itself, the bottom line, my body has changed.  Lately I haven't even had the desire to get out there and run, let alone hit the gym.  I know the endorphins I get from exercise help, and that my body needs to stay strong, so why aren't I out there doing it?  At the same time, Mike is training for his first marathon this fall.  This should also motivate me.  But no.  I am crazy proud of him, but I really don't feel the need or desire to join him.  What the hell is wrong with me?

 Sometimes I feel like the days pass and I can't feel passionate about much.    Also as I mentioned, my energy has been pretty low as well.  I know that a lot of that is side effects of the Revlimid and the lack of sleep due to the steroid and just being a busy mom.  But I was desperate for some change.

 A couple of months ago I talked with Dr. H about slowly coming off my anti-depressant.  I had been on a couple different drugs since my diagnosis.  I ended up staying on Effexor which also has an added benefit of helping out with the hot flashes from being put in menapause.  But the past few months I realized more and more that I was beginning to feel like I was going through the motions in life.   I don't ever really feel like I can be really happy or sad for that matter. Also my energy has felt like it has been zapped.  So after reading up on all the different side effects of Effexor, I thought I would try coming off of it and see if I felt any different,

Well the first week pretty much sucked.  My head was in a constant cloud.  I had dizzy spells and felt like my brain was buzzing.  I had a new found respect for anyone going through drug withdrawals.  Day after day I waited for that to subside.  It finally did after about 5 days.  Then it was the tears.  Once the floodgates were opened they just wouldn't stop.    This was right around the same time of Marty's ride that I previously posted.  It was such an inspirational  day.  It was a day full of emotion.  When we got home that night from Maine, my son Mitch knocked at my bedroom door.  He just looked at me with tears in his eyes and told me he was really sad. He said to me "I guess you are one of the few lucky ones who is living".  Gulp!  Yup, you try looking in your 11 year old son's eyes and come up with a quick response to that one.  I just held him and cried and said "Yes I am".

Mike and I were up late that evening on the patio.  Basically him trying to console me.  As always he stayed strong and tried to pick up all the pieces to put me back together again.

From that teary moment there came many many more.  In fact, I couldn't hide the tears from the kids.  It reminded me so much of those first few weeks after I was diagnosed.  One look at the kids and my eyes filled up.  Wow maybe I really didn't need to be thrown into reality?  Maybe it was good to be numb.  Well after a few days of tears, I turned into bitchy mom who had no grip on life.  My poor kids and Mike.  I didn't even get like this when I was on the higher doses of Dex a couple of years ago.

To top it off we were heading to Maine to spend a week with our closest friends and their kids.  There was going to be a total of 28 of us vacationing together for a week (divided in 4 homes).   Although we vacationed together last year and had a blast, the thought of it sent me in complete panic mode.  I have been isolating myself, avoiding big social scenes.  I couldn't handle myself, let along 28 people .

I so much wanted to stay home and just send Mike with the kids.  But deep down inside I told myself that I needed to go.  What would happen if next year I was sick again and couldn't go?  I knew how important it was to Mike and the kids.  I couldn't let them down.  I struggled for a couple of days, and then resorted to calling my doctor and getting back on my anti-depressant.  We went to Maine and had a great week.  The kids had a blast and I did have fun, especially on those fast tube rides.  When I became too overwhelmed I would just tell everyone that I was tired and went to bed early.  I am happy I decided to go, I wished that I could have enjoyed myself even more.  I guess I did the best I could do.

Last week when I was in for my monthly infusion I sat with Dr. H and the nurses and opened up to them.  They are so used to me coming in and seeing happy Jeanie telling them that everything was fine.  Well that day they got an ear full.  My favorite nurse Leslie held my hand, as her eyes filled with tears and told me that she expected this to happen.  She went on to say that some cancer patients go to therapy when they are first diagnosed and work on the mental stuff as well as undergo all their treatment.  Others like me, dive into beating down cancer with all of the chemo treatment and then expel their other energy keeping everything else in their life (ie: kids, house, marriage flowing).  So now comes the mental baggage with being a cancer patient with an incurable cancer.

I had tried therapy when I was first diagnosed, but it really didn't do much for me.  I am not sure if  the therapist was the right fit or what.  Or maybe it just wasn't my time.  I don't view therapy as a sign of weakness.  In fact, I find it to be a sign of strength.  I know I can't carry on keeping myself busy, trying to avoid at all costs any down time.  For me, the only down time I allow myself is at night.  And I know how well that goes for me.  Not!  Hence the insomnia and my nightly dose of Ativan.

So in two days it will be my 42nd birthday. Cheers to me.  A couple of years ago I never thought I would be here today.   I have decided to give myself the gift of me.  That means the good, the bad and the ugly.  It is time for me to finally do the dirty work of digging deep and facing my fears.  This time around, it is not training to complete a marathon, but rather, explore all the hidden crap of fear, sadness and anger.  I am so so tired of this in-between life.  For those of you who know me, but don't want to ask me how I'm doing.  Now you know.  Not so great.  I  struggle with this "new life" of being a survivor everyday.  So please forgive me for putting up a wall around me and not staying in touch.  I miss being engaged in life socially, trust me.  But I guess until you walked in my shoes, you really don't know.  There is no manual on how to get to try to get back that life you once had.  I know that cancer will always be a part of me.  I didn't ask for it, but it's here.  I don't want it to define me, or limit me, more than it has to.  It has sucked way too much out of me physically and emotionally and it is really starting to annoy me.

So stay tuned.  I'm hoping to start shedding a little more light in my life.

For all my Myeloma friends, I usually I take my Revlimid and Dex in the morning.  I held off and took them tonight.  I'm hoping this means I'll be be able to actually get some sleep. We shall see!

Sweet Dreams-

Monday, July 2, 2012

Let's Hear It For Marty And His Cure For Cancer Tour!

Tomorrow morning we will be all leaving the house early to cheer on Marty Perlmutter who has traveled on a 1,400 bike journey from Jacksonville, Florida to York, Maine.  He is riding to honor his best friend, Roy Gross, who lost his battle with Multiple Myeloma in March, 2012.  Marty has set a goal to raise $20,000 for the Multiple Myeloma Research Foundation.

Marty is staying in Nashua, NH tonight after traveling 100 long hot miles today.  Tomorrow morning my husband Mike will be joining Marty, as he completes his journey to Maine.  Mike was so inspired by Marty and asked if he could join him for a few miles. During the last couple of years, Mike has taken up cycling.  He has participated in several sprint triathlons and charity rides.   After talking with him, Mike convinced himself to ride the 80 plus miles with Marty tomorrow.  This will be Mike's longest ride to date.   I am so overwhelmed with love and pride for my Mikey.  There truly exists nothing that man will not do to support me.  As I sit to write this blog, my eyes are filled with tears.  He is the hardest working man I know, yet he always makes his family a priority in his life.  And now he is going above and beyond riding along with Marty supporting the fight against Multiple Myeloma.  Everyday Mike shows me how determined he is to support me in every way to continue to fight this crappy disease that robs the lives of so many people everyday, like Marty's best friend Roy.  I don't know how I got so lucky that June '92 back in UNH!  Mikey, you are my one and only one and you continue to give me butterflies everyday!

I will be sure to take lots of photos tomorrow.  The kids have packed up our cow bells, pom poms and signs.  We will all be leaving early tomorrow morning to give them a fun send off as they hit the pavement.  Of course, then the kids and I will go home and chill for about 4 hours and we will travel to York to see them get to the finish line at the beautiful Nubble Light in York, Maine!s

If you would like to view Marty's blog please click on the link below:   

Also Marty's web page for donations is:

Tuesday, June 5, 2012

2 Years Later....From Sadness To Heart Prints

June 3, that date will forever be a day that I will always remember.  It was 2 years ago exactly, that I received a call that forever changed my life.  That morning started off just like every morning.  Enjoying a nice hot cup of coffee, sitting with my dog Flower for a few peaceful moments before the morning craze of making lunches and getting all 4 kids off to the bus on time.  I can recall that I was looking ahead to my morning workout after the kids got on the bus.  I was already planning my workout schedules for the last few weeks of school, knowing that once the kids were on vacation, workouts would be more challenging to squeeze in.  Instead, our days would be spent having fun at the lake and beach and entertaining my kids for the summer.

As a Type A girl who is constantly planning her days ahead, my big stresses in life were getting my kids up and out of the house in the morning (with as little drama as possible), making sure beds were made and the house was clean (yes, I am a total neat freak), all laundry was done and put away, morning workouts done, grass was cut and green, the fridge was packed with healthy yummy food, kids homework and projects and driving my kids to all their after school activities and sports.  And of course, making sure the house was orderly and somewhat calm when my husband came home on a Friday night after traveling all week.  Day in and day out this is what my days looked like.  I seemed to fill my days completely allowing myself very little time to sit and ponder and think about what more life had to offer.  Or to think about relationships I wanted to work on or goals (other than fitness) I wanted to set for myself.  Life was pretty great.  It was pretty predictable and very routine, just the way I liked it.  

But one phone call received on the morning of June 3, changed all that.  In other words, it disrupted the neat and tidy little package of my" predictable scheduled life".  That call was from a Plastic Surgeon who removed an "annoying cyst" on my sternum, that ended up to be a malignant tumor.  A tumor that today, I am so grateful existed.  I was one of the lucky ones who actually had a tumor that exposed itself and all the destruction that was taking place inside my physically fit body.  From the outside I looked strong and in great shape.  Yet inside my cells were being plagued with cancer and my bones were weakening.  Over 80% of my plasma cells were being destroyed by Multiple Myeloma.  Many patients are not so lucky.  In fact many do not even discover that they are sick until their kidneys are no longer functioning.  

I was a strong healthy woman who felt great.  I was in the best shape of my life.   How could I have cancer? How could I have an incurable cancer with one of the poorest survival rates when I feel so great?  I never smoked, I ate healthy, exercised, wore sunblock.  Yes, I enjoyed my nightly glass of wine.  But cancer!  No freaking way!!!  This was a cruel joke!!  

This was no joke.  It was real.  Who am I kidding?   It was hell! My hell!   Mike and I were slammed right in the face with the brutal reality that life was not going to be the way we had planned it out to be.  Someone else was in charge and it wasn't us.  We were helpless, terrified and desperate.  We had a life with plans.  We had 4 busy kids and a busy life and we did not have room for unexpected surprises like this.  I can't be getting sick.  I can't be dying. This was NOT Fair!  I was a good person.  And good things should not happen like this to good people.  What did we do to deserve this???

Wow, were we ever naive.  Cancer has no prejudices.  It doesn't matter how good you are, how healthy you are, how successful you are.  Cancer affects everyone.  And I guess my number was up.  So I was the one sitting in the oncologist office squeezing my husbands hand every so tightly as the doctor was giving us my diagnosis.   It was just like how you would imagine it to be, an outer body experience.  I could see the doctor mouth moving and and sounds coming from his voice.  Yet I could not even focus on what he was saying.  My husband Mike was asking the questions, staying strong and I just sat there totally unfocused and in total disbelief.  In my mind, I was dying.  I had very little hope and I had never felt so lonely, scared, mad and heartbroken.

Today, it is June 4, 2012.  The last few months since my last post have been a whirlwind of exciting life changing moments. Where to begin?  I think a photo of one of the greatest moments in my life will get us started!

Suz and I crossing the finish line of this year's Boston Marathon!

The Boston Marathon was such an incredible experience.  It was one of hottest days on record for the race.  Over 4,000 registered runners decided not to run on that hot morning.  Suz and I definitely had some anxiety as the temperatures climbed that morning.  I know for a fact, our families were not very happy that we were running on such a hot day.  Mike, my parents, and my sister as well as many friends and extended family members were hoping I would drop out.  But Suz and I had trained so hard for this day.  It was such an incredible honor to be running as part of the MMRF Power Team.  Together Suz and I raised over $8,000 with the help of so many supportive friends and family (thank you all so much).  We felt so honored to be running, we couldn't possibly drop out.  Fortunately for us, the city of Boston came out and supported us, cheered for us, gave us ice, water, oranges, Popsicles, and everything else we could possibly need to help us  run the 26.2 challenging miles!  We met so many inspirational runners along the way.  The MMRF Power Team was a group of the most inspirational loving people all running in memory or in honor of their loved ones affected by Multiple Myeloma.  Each one of their stories touched me in so many ways.  I know that seeing me run gave those who had loved ones struggling with this disease, so much hope for brighter days ahead.

When we approached Heartbreak Hill, Suzi's sister Lolly met us with a big sign with our names on it and ran with us up the challenging hills.  I can vividly recall one moment when Lolly and Suzi were running ahead of me.  Spectators were yelling" Go Suzi and Jeanie !" I became so overwhelmed just thinking about all that had occurred over the last 2 years.  How blessed I have truly been.  To go from feeling so sad and helpless and weak to conquering each step of  Heartbreak Hill in the blazing hot sun.  The crowd, the excitement, the emotions, my exhaustion, it all become so overwhelming and the tears strolled down my face.  And it hit me.  Life is so freaking incredible!!  This is what it means to really live your best and be all that you can be!  Cancer has indeed brought me a gift.  The smell, the taste, the joy of life!  Damn it is fantastic!  And it just keeps getting better and better!

I knew that our families were at mile 25 with the MMRF.  I think the heat and exhaustion got the best of me at about mile 21.  I lost track of what mile I was at.  Suz ran ahead ,( gotta love my Energizer Bunny) chatting with our husbands on the phone letting them know we were coming. My legs were moving but my mind was drifting.  I felt as though I was once again in one of those outer body experiences.  I could see the spectators cheering us on, but I couldn't make out what they were saying.  My body wanted me to stop, but I kept going.   I just wanted to see the kids. I knew that once I saw the kids and Mike I knew I would be only a mile away from finishing.  Suz grabbed another bag of ice from the bag of spectators and threw it under my hat. It had to be almost 90 degrees.  Suz was getting very concerned and tried to get me to keep talking.  I finally got the energy to ask what mile we were at.  Just I asked we saw the mile 25 marker and saw the big orange flags.   The MMRF fans were just ahead!.  Our incredible husbands and amazing kids were there cheering us on.  They were there in hot sun all day giving out water and cheering on all the runners.  Suz and I were so proud of them.  When they saw us at mile 25, their smiles brought tears to our eyes.  They looked so proud and excited and of course very relieved seeing us still looking strong and determined to finish.  I know for me it was one of those life changing moments I will never forget.  I stopped and hugged everyone supporting the MMRF.  I didn't even know some of them.  But I thanked each and everyone of them and gave them a big hug, as tears rolled down my face.  Just seeing them all gave me renewed energy.  Suz and I held hands as we ran the last 1/4 mile.  We did it!  We finished!  Final time: 5:23.02.

The greatest support system in the world.  Our families!  

Suz and I.  I absolutely love love this woman!  I am so lucky to have her in my life!  Together holding hands as we  approached the finish line!

Next on the agenda was our surprise trip to Disney.  The kids had absolutely no idea!  We woke them up on a  Friday morning at 5:30 AM and surprised them with the fact that they were not going to school and that the car was all packed up and we were heading to the airport.  Our first lag was to Dulles Airport.  So  as far as they knew, we were heading to DC.  Mike and I were bursting inside.  Our total Type A son Cam started to search on the IPhone in the car for things to do in Washington DC.  By the time we got to Boston Logan Airport (about an hour drive), he had the whole 
trip planned out.

Once we got to DC, Mike ran in the bathroom and came out with a Mickey T-shirt. It was the exact shirt he wore 17 years ago when he proposed to me in Disney World.  Our kids were totally shocked when we announced the surprise that we were actually spending the week in Disney.  In fact, our son Cam who is never without words, was completely speechless for the first time in his life!

We had a incredible week. The kids kept us going 14 hour days everyday.  We never stopped,  and still we didn't see everything.  It was so great to just have a whole week of fun with the kids!  Our last night there, Mike and the kids surprised me.  Just as Cinderella's castle was all lit up in pink and purple, Mike took out a ring that he and Sarah picked out at the park.  Mike once again almost 17  years later, 4 beautiful children later, a cancer diagnosis later, pledged his love and commitment to me.  It was beautiful.  Needless to say I crying with happiness just like the day he proposed to me. 

When we got back to New Hampshire, my parents flew up from Florida to watch the kids while Mike and I flew to Bali, Indonesia!  Wow, I still can't believe all the traveling we have done.  I went years without going anywhere, and the miles that we have flown this year is just crazy!  We literally were home for less than 5 days, and then we flew across the world. This time it was just Mike and I.  The furthest we ever went away together since having the kids, was Vegas and that was for a long weekend.  So before we got on that plane, we took a ride over to our lawyer and completed our Will.  Just in case!  Thankfully we didn't need to use it.  But we felt more like responsible parents having completed it.  After getting the Will done and spending countless hours figuring out the kids schedules for my folks and making calendars for them with every possible activity, responsibility, appointments, etc. it was time to get on that plane and head overseas!  After a very long delay in Chicago, we finally headed to Hong Kong.  After hours and hours of traveling (I think it was over 30 including the layovers, we finally landed.  We were only checked into our beautiful hotel for less than 12 hours.  But we managed to squeeze in a fun night out with one of Mike's friend/coworker who showed us some of the city's great night spots!  Our next stop was about a 5 1/2  hour flight to Bali.  

Bali was an incredible trip.  It was our first experience going on a Platinum Club Trip.  I am so proud of Mike for having such a successful last few years (even with all that we had going on) and being recognized for his efforts and earning this trip.  Although we didn't know many of the people on the trip at first, by the end of the week we connected with so many people who work for his company from all over the globe.  The accommodations were beautiful.  And every evening there was a beautiful gift in our room.  The gifts included beautiful handcrafted treasures from the people of Bali.  We were fortunate enough to have guided tours around Bali.  We saw so many beautiful Temples as well as little villages and the beautiful rice fields in the countryside as well as the lush jungles.  Unfortunately, to get to these remote areas, we spent way too many hours on a bus driving around in the crazy streets of Bali.  The streets are narrow and the cars travel on the left side of the road.  The road is filled with buses, cars, countless mopeds sometimes with a family of 4-5 including an infant, wild dogs, chickens and roosters.  Oh and no one uses directional signals at all.  It is a free for all.  Yet no one seems to have road rage???  Of course all of us on the bus were having anxiety attacks!  But somehow we all made it out alive, and none of our buses got into an accident. 

 One of the most memorable nights we all dressed in sarongs that were given to us as a gift.  All our buses received a police escort to a small village.  Once we got to our destination, we were greeted by the whole village.  Over 400 men, women and children lined the streets all dressed in their finest beautiful traditional clothing.  They sang and danced as they formed a parade.  We then joined the parade, which led us to a beautiful Temple.  It was decorated so beautifully, as if it was a wedding. The entire village served trays of incredible traditional food to us,  while we were entertained by beautiful traditional music and dance.  It was such a special night.  

Getting Ready to go on the bus all dressed for dinner!

At the Temple for Incredible dinner and night hosted by the most wonderful people of Bali

Stopping for lunch along the countryside!

We also had the awesome experience of playing with dolphins!  It was incredible.  They are the smartest, most playful creatures!  I wish they have hidden one in my suitcase to take home.  

Giving Kisses!

And a hug!

Even Mikey got some loves  from our little friend!

One of other awesome Bali adventures was driving to the jungle and going on an elephant safari.  That's right, we rode the elephants!  Incredible!  Our guide has giving elephant rides for over 12 years. We rode through the jungle, which was full of so many sounds and sights, including the "Tsunami", (as our guide called it)  every time our elephant needed to relieve himself.  I would not want to be the one responsible for cleaning that mess, Yikes!  

The elephant actually placed this wreath over our heads!

We had such an incredible time.  It was so wonderful just to be that fun loving couple spending so much time together exploring and and just being "us".   After the crazy unexpected path our lives took two years ago, to be where we are today is just pure bliss.  I am so grateful to my mom and dad who came out and watch the kids and made it possible for Mike and I to take this trip of a lifetime.  Love you Mom and Dad!  Maybe next year we can book you again?  Lol!

Since we have been back from our adventures, we have celebrated some great events:

Our Beautiful Sarah on her 9th Birthday!

Our Beautiful Emily on her 9th Birthday!

Me and my girlies at Sarah' s first piano recital!  Sarah was a rockstar!

School will be ending in a couple of weeks.  Yeah!! I think I just might be more excited than the kids.  It is hard to believe, Mitch and Cam will be graduating from Upper Elementary School and be going into 7th Grade at the Middle School.  Sarah and Emily will be graduating from the Elementary School and heading to the 4the Grade.  All my babies are growing up!  Our nights and weekends are spent most of the time at the baseball field (when it isn't cancelled for rain).  Mitch has been selected once again this year to be on the Hollis/Brookline All Star Team!  We are so proud of him and can't wait for the many games ahead!  Sarah and Emily have their big gymnastics show this weekend!  Most of their days at home are spent doing back walkovers and cartwheels!  And Cam has been very busy starting his lawn mowing service.  He already has two customers on our street!  With all the rain we have been getting he will be pretty busy over the weekend!  He is quite the little Entrepreneur.  And his new favorite show is Shark Tank and he has been taking mental notes!  I expect to see him on that show someday!

I have not retired my running sneakers.  However I am enjoying nice shorter runs with my favorite 4 legged running partner Flower.  I am not missing the long training runs.  As a family we will be participating in the Hollis 5K coming up on June 14!  I also have dusted off my boxing gloves.  I have gotten back into another one of my passions that I took a break from over the last couple of years.  It feels so great to hit and kick that bag and get my butt kicked a few days a week with kickboxing and cross fit training.  On my days off from my workouts I look forward to carving out more important time to catch up with friends going out for lunch, coffee, shopping and taking our dogs out to play.  I realize I have not been the best at taking time for those special relationships that I am so lucky to have.  So that is going to be one of my priorities this summer.  It is all about bringing back balance in my life.

On this second anniversary since my diagnosis,  I would like to take this opportunity to look Cancer right in the face and say a few things to it:


You may have smacked us right in the face with your unexpected and unwanted arrival.  
You may have scared us and made us sick to our stomachs with fear and sadness.
You may have made me lose my hair, made me weak, and made me stare at death right in the face.
You may have put fear in my poor innocent children.  You may have made them grow up and face the harsh reality of life that they may lose their mommy.
You may have made my husband feel helpless and scared and think that he may lose the love of his life.
You may have made my parents feel like they can no longer protect me and that they may lose their baby girl.
You may have made my sister and brother think they are going to lose their sister.
You may have made my friends feel helpless and scared and desperate to do something to take the pain away.
Although we did not choose to have you in our life and have all of this negative energy that comes along with you,
we do thank you for the hidden blessings we have discovered because of you.  The little whispers in life that we may have ignored before.  All the precious beautiful moments that we may have been too busy to notice and enjoy.  We thank you for our new found open spirit to celebrate life everyday and take risks and adventures that we may not have taken before.  We thank you for pointing out all of the beautiful relationships we have with so many wonderful people in our lives who have shown us just how amazingly loving and supportive people are.  We thank you for reminding us to tell our loved ones everyday just how much we love and appreciate them.  
We know how blessed we are that YOU have not yet won this battle.  You have however taken the lives of TOO many loved ones close to us and continue to show your presence with TOO many.  Every day we hear of a new loved one struggling with your unwanted arrival,  our hearts sadden and tears are shed.  However, YOU will not break our spirit.  We will be stronger and ready to fight,  if and when you return.  Until then, WE LIVE, WE LOVE, AND WE CELEBRATE!

Love and Hugs,

Wednesday, April 4, 2012

Learning and Allowing Oneself To Live

It is a beautiful day here in New Hampshire.  The sun is shining and feels so so good.  I just got back from spending time with my close friend Beth at the dog park with our puppies followed by lunch outside at one of our favorite local spots.  Today reminded me of the days we would spend together before my cancer diagnosis.  Just  2 girlfriends chatting about life while watching our dogs run freely through the woods.  It felt so familiar and so comforting.  Yet it has been absent from my life for way too long.  But why?

Beth and I talked about this very subject today.  Why had it been so long since we spent time together doing what we love best?  Is it that life has just gotten too busy?  We all have busy lives with kids, work, sports, family obligations, etc......  But is that reason enough not to do that the simple things in life that bring us so much joy?

Lately during my runs, I have thinking about life since cancer, more specific life, since remission.  I have found that I have thrown myself back into completely dedicating myself to my family.  I have always loved being a mom and a wife.  It has brought me so much joy and happiness.  During the year of treatment and recovery from my transplant, it was torture for me to step back from my responsibilities.  We were fortunate to have my parents as well as close friends come in and help with the kids and many of the household duties, so Mike could focus on work and I could focus on getting better.  My children actually became very independent.  My parents had them trained like a well oiled machine.

Today, my kids have willingly allowed Mommy to come back and assume many responsibilities as I am willing to accept.  My poor mom and dad will be so disappointed when they come to visit and watch the kids in May.  All their hard work!  A part of me knows that I should be proud of the independent kids they became.  And I am, however, there is still a bigger piece of me that really missed being able to do for them.  I feel like they had to grow up so much when I was sick.  And I'm sure that guilt and sadness supports my desire to continue to do for them.  But digging deeper, I am realizing that I have not allowed myself to do once in a while step away and do more things for me, like spending time with girlfriends, embracing those beautiful relationships I am so fortunate to have.  It is almost as if I feel like I am selfish to want to spend time away from the family.  Crazy, huh?

  Today I confessed to Beth these feelings.  Fortunately for me, she is one of those special friends who truly support me and stands by me without judgement. In fact, she got it. Gosh I have missed her! She completely understood my crazy messed up thoughts.  It was as if a cloud of guilt I have been carrying was lifted away.  The guilt of not being a good friend and being active again with friends in life.  I have shut myself off from life in a lot of ways.  Filling my days with being the best mom and wife I can be and training for this marathon, all while trying to stay mentally and physically strong while living Multiple Myeloma.

The medications I am on have taken their toll on me.  I find myself very fatigued.  Who is tired these days right?  And add to that training for a marathon.  Anyone would be tired, right?  But I know myself better than that.  I used to be able to just go go go all day long like the energizer bunny.  And now, the long runs wipe me out.  No longer do I  relish in the "runner's high"  I used to enjoy.  Instead, I physically pay for my runs with feeling wiped out and tired for the rest of the day until I collapse in bed.  Running this marathon is more than just a bucket item for me.  Training for it has played such a huge part for me in fighting off the depression of living with an incurable cancer.  It has proved to me that cancer has not robbed me of my strength.  It has showed my kids how strong I am and that Mommy is once again healthy.  I ran every step of the 26.2 through Boston back in 1992 with Suzi. It was a time when we just graduated college and we had our whole lives ahead of us.  Now 20 years later, married with children with lifetime experiences, ups and downs, and cancer, we are running it again together!  What a beautiful way to celebrate life all at the same time as raising money for the Multiple Myeloma Foundation, an organization near and dear to us.  I have come turns with the fact that my days of running a sub 8 mile are gone.  In fact lately I am lucky to run a 10.20 mile. How is this possible after months and months of hard training?   I struggle keeping my blood sugar level balanced and hydrating enough, side effects I believe are related to the Revlimid maintenance drug I am on.  So why do I feel the need to do this marathon, given all of this?

Beth and I talked about my anxiety about the race.  And she keeps telling me to stop calling it a race.  Call it a "day".  She admitted that a part of her wishes I wasn't doing it, because she knows how much I have been struggling.  However Beth is a competitive athlete herself and can understand the drive and desire that comes with endurance races. She did ask me what I see after this marathon? Will there be more in my future? And you know what, I finally admitted that I am looking forward to living more balanced.  Trying to find that runner's high again.  Maybe that means only running a couple miles a day.  I used to think that settling like this would mean that I am accepting my limitations and my fate with this disease. Maybe it just in my head that I am hitting this rock wall with running.  Maybe it is not really a physical thing at all.   But slowly I am beginning to allow myself to start being more honest and accept it and not take it as a sign of weakness.

Living life with Multiple Myeloma.  This is a day to day learning experience.  There is no how to guide.  It's getting up in the morning and doing what feels best that day.  The other day a fellow Multiple Myeloma friend called me to inform me that he has had a relapse.  This is only after a short 2 year remission.  This is a gentle reminder of how precious life is.  These days of feeling strong and being able run whether it's 4 miles or 20 miles. No one knows what tomorrow will bring.  Today I know that I got up, had a great morning with my kids, ran 4 miles, and then spent the afternoon spending time with one of favorite people on this planet. And now I am able to share all of that with you while waiting for my kids to get off the bus and share their day with me.  Not a bad day!

Hope you were able to carve some precious moments to yourself as well.  If you would like to support me in my efforts to raise money for the Multiple Myeloma Research Foundation, please click on the link below:

Love to you all-

Wednesday, March 28, 2012

The Marathon is Less Than 3 Weeks Away...So Why I Am I Doing This?

Here it is less than 3 weeks before the big run, The Boston Marathon.  The last time I ran that challenging course was back in 1992.  This year I am fortunate to be running as a member  of the MMRF Power Team.  The Multiple Myeloma Research Foundation is an organization very near and dear to my heart, as I am a Multiple Myeloma Survior.

I have been blessed to be a stay at home mother with two sets of twins.  Back in 2010, at the age of 39, ( my children were 9 and 7 ) I made the commitment to get into the best shape of my life and participate in my first triathlon.  Training was going very well.   I had a few setbacks however.  I developed what looked like a cyst on my chest.  I saw my doctor and she removed the cyst in her office.  She sent a sample to the lab and it came back benign.  However the area on my chest where the cyst was located, was still tender.  One day in the gym, I was working out with a friend tossing a medicine ball back and forth.  Unfortunately, one toss resulted in a direct hit on my chest where the cyst was removed.  It just about knocked the wind out of me.  The pain was excruciating.  I later went to to the Emergency Room for an X-Ray.  No break was confirmed.  It looked as though I just badly bruised my sternum.

I learned to deal with the pain of my sternum healing and did physical therapy while  continuing my training.  I  completed my first triathlon in May.   My next race was a triathlon in July.

Life came to a complete halt in June 2010. My cyst on my chest grew back and I had it removed by a plastic surgeon in May.  I received a call a week later, with the unexpected news.  It was a malignant tumor.  Before I knew it I found myself receiving my first bone marrow biopsy.  It was confirmed by my oncologist that I had Multiple Myeloma.

It seemed as though along the the shock of receiving news that I had an incurable cancer, I began to experience excruciating pain in my ribs and sternum.  It was confirmed that I had indeed broken my sternum with the medicine ball incident.  Apparently my x-ray was misread.  Also I had a few broken ribs.  The disease was weakening my bones.  I began my chemotherapy regimen in July 2010.

I went from  being in the best shape of my life, to being a cancer patient supported 24 hours a day on morphine.  My body appeared to be weakening by the day, along with my spirit and hope.   My children saw me go from "super woman" to a tired, weak, depressed soul.

Our lives quickly become consumed with doctor visits, pills and chemotherapy.  By late August, I felt relief from the bone pain and began to gain some of my energy back. I started back running and in September I ran the MMRF Race for Research 5K in Boston.   In November 2010, I went in for my life saving Stem Cell Transplant where I received an autologous stem cell transplant. The recovery was slow.  But in March I found myself ready to regaining my strength and building back the muscle and endurance I had lost.  I started with lifting light weights.  But returned quickly to my first love, running.  Not only did I start to regain my strength but also started to rebuild my broken spirit.

In October 2011, less than 11 months after my stem cell transplant, I completed the Bay State Marathon.  The race was an incredible challenge.  I battled fatigue and severe dehydration the last 5 miles.  Once I crossed the finish line I was quickly carried to the medical tent where I received some much needed fluids.

I have trained all winter (fortunately outside thanks to Mother Nature) for the Boston  currently in a complete remission. Today, there is no myeloma detected.  However, I am still on a maintenance regimen consisting of Revlimid and Dexamethasone, to improve the quality of my life and prolong the recurrence of the disease.   Although my legs have endured the long miles logged, my endurance has been my biggest challenge.  The side  effects of fatigue from the medicine I am on have taken it's 'toll.  What might just be a cold for someone becomes a month long struggle for me.  As soon as I start to feel strong and energetic, it seems like I hit a wall plagued with illness and or fatigue.  This is life as a Multiple Myeloma Patient.

It has been a struggle to keep my spirits high especially during these last few crucial weeks before the marathon.  I have learned that I need to re-evaluate and set realistic goals for myself,  even if that means taking days off from my training. Even today, I was planning on running a good 7-10 miles; however, I am still struggling with feeling run down with a nagging cough from over a month ago.  So, I took the day off.   Completing the course in less than 4 hours will probably not be feasible.  However being blessed to be running each and every 26.2 miles of that challenging course with my MMRF Power Team Shirt , albeit it however long takes me to finish,  is reward enough for me. I am proud to be running and raising money to support the MMRF and their goal to cure Multiple Myeloma, a disease that has taken the lives of so many.  It has challenged me in more ways than I ever thought possible.  It has changed the priorities in my life completely.  Although the future may be unknown, today I am strong in mind, body and spirit.  Running has renewed that broken spirit.  I run today because I can.

If you would like to support me in my efforts running this year's Boston Marathon in LESS than 3 WEEKS (Yikes) with the MMRF Power Team, please click on the link below:

Friday, February 24, 2012

Embracing Each And Every Day The Good, The Bad And The Unexpected

I can't believe how quickly time seems to be passing by.  It is already the end of February and here in New England it almost feels like we haven't even had winter.  Usually by this time we are all feeling pretty housebound and desperate for warm days, sunny skies, and to be able to see the ground beneath the several feet of snow.  But this winter we have been blessed with days in fifties and no snow on the ground at all.  OK, not such good news for skiing and my love of snowshoeing.  But the fact that I have been able to run outside all winter and that we have not had to shovel or snow blow the driveway....... I am loving it!

Up until a couple of weeks ago, my training for the Boston Marathon had going really well.  I had been really sticking to a training program which involves following a nice running program averaging about several 4-6 mile runs a week and then a nice long run once a week.  Also hitting the gym for some weight training.  I have also been really committed to learning all I can about fueling during my runs so that I do not end up in the medical tent this marathon.  Much to my surprise it has really made a difference in the way I feel during my runs, as well as my recovery.  As I was saying, I really had been feeling great and was gearing up for my long runs coming up in the next several weeks.

Well, as things seem to go, just as I was feeling great I hit a few brick walls.  When I was out in California I experienced some "womanly issues".  This was a quite surprise to me. as my doctor had confirmed to me that I was post-menopausal. My menopause was drug-induced thanks to a shot of Lupron before my stem cell transplant.  Last spring/ summer I had the joy of experiencing some major hot flashes and all the other lovely things that come along with menopause.  I really had it in my mind that I was now past all that.  But to my surprise out in California all that came to a halt.  I called my doctor right away and she confirmed with me that I would need to go for an ultrasounds as soon as I got home from my trip.    So that is what I did.  Like most tests, it took several days to get the results.  When I did get the results,  the phone call went something like this......" Can you talk?  We found a few concerns with your ultrasound.  "  Oh crap, here we go again.  Apparently I had a thickening Endometrian wall and Hydronephrosis (blockage of the kidney).  What the hell was that?  The nurse explained vaguely that there appeared to be a blockage of my kidney and that we would have to schedule a CT Scan and I would need to see a OBGyn Specialist for another ultrasound and perhaps a procedure.

I got off the phone and just wanted to cry.  What did all this mean?  Does this have anything to do with all the chemicals I continue to push in my body to keep my Myeloma quiet; ie: Revlimid and all the risks of secondary cancers associated with it?  Mike was away on business but I knew I had to tell him.  I caught him while he was driving.  He pulled over and began looking all this stuff up.  We did as we have been told by doctors many times not to do....we googled.  Together we read that  these two conditions exist, the thickening of the Endometrian Wall and Hydronephrosis  in stage 3 cervical cancer.  Really?  Come on!!!!!  This cannot be happening!!!   Mike did his best to calm me down, but I could hear in his voice his concern.  He offered to fly home early, but I told him there was no reason.  We had to wait until I had the additional tests to really find out what was going on.  We promised each other we would try to remain calm and not freak out.  What ever the situation was, we would deal with it, just as we had done before.

I was fortunate enough to get a CT Scan right the very same week.  Mike was home and took me.  We both were scared with so many thought running through our heads.  We both felt like we were paralyzed.  We had no focus on anything but worrying.  The next day we went to see the OBGyn Specialist.  When we arrived at the doctor's office we were escorted to her office.  We were told she wanted to speak with us first.  Oh brother.  In the past, sitting with the doctor has not usually meant good news.  She could see the concern in both of us.  Mike and I sat down and squeezed each other's hands.  At this point we just wanted to know what we were dealing with, what ever it was.  Just tell us!  Well, immediately addressed all our concerns.  And then quickly dismissed all that we had been so worried about.  She explained that she was going to do another ultrasound and take a sample of the Endometrium wall to rule out any abnormalities.  Cervical cancer was not a concern at all.  Damn WebMd!  And we know better!  Ugh!

So in to the ultrasound room I went.  Everything looked good to her, in fact very good.  In fact most young women would LOVE to see what she saw on the screen.   Yup I was a spring chicken again!  She saw follicles, lots of follicles!  I was ovulating!  Really?  Heck even in my twenties I had trouble with that.  In fact Mike and I had to go through Invitro-fertilization to have our four beautiful babies.  And now I was ovulating?  It was as if we reversed the clock!  My Endometrium wall was thin as it should be and everything looked great.  She still did take a sample (ouch!) just to confirm that all was OK.  I guess Mike and the kids are going to have to be prepared to ride the hormone roller coaster with me.  And on the bright side when I do go through Menopause again, at least I'll know what to expect!

As soon as we walked out of her office, I received a call from my other doctor's office with my CT Scan results.  Everything looked normal. The kidney looked fine.  There were no blockages and no concerns. Ok so went from thinking I was dying to now being a fertile young thing with a great looking functioning kidney!  What the heck!  What a roller coaster ride.  Mike and I fell into each others arms and let out a few tears.  He looked it me and said OK, can we now go out for coffee and make some travel plans this year?

So lesson learned..... Stay off WebMD.  Yeah like I'll do that the next time.  Probably not!  We are our worst enemies.

So I got back to my running last week and in fact Suzi and I did 16 miles last Friday.  It was a beautiful February day.  It hit almost 50 degrees during our run!  I had been battling a cough on and on but other than that, I felt great.  I was pumped to pass the 16 mile mark and I was looking forward to hitting 20 the following week.  But as things go, I once again hit a wall.  Saturday I woke up feeling worn out and coughing more.  By Sunday morning I had the chills and a very high fever.  So off to the emergency center we went.  They did a chest x-ray.  Although my lungs looked OK, they treated me for pneumonia and gave me a shot ( a booster to jump start things) , and inhaler and prescription for antibiotics.   So this meant a week without running.  I focused on eating well and getting some much needed rest.  Thursday was treatment day at the hospital.  Usually the nurse starts off my appointments with asking if I had any hospital visits, scans, x-rays since my last visit.  This time I had to answer yes to all those questions thanks to my eventful last few weeks.  Thankfully all my blood work came back normal.  I slept during my 3 hours in the Infusion Room.  After a bag of fluids and my Zometa infusion I was free to go home!

This morning I finally felt like I was getting some energy back and my cough has finally for the most part gone away.  Mike, Flower and I went for a very slow 3.2 mile jog.  It felt so great to move again.  I took it very slow.  I know it is going to take some time to get back to where I was. I am hoping to get a few 3-5 mile runs in Florida and hopefully in a couple weeks I'll tackle that 20 miler.  The Boston Marathon is only 7 weeks away.  I just keep reminding myself that I am better prepared for this one.  I am not trying to break any records.  I just want to feel good running it and have fun and to avoid the med tent so that I can celebrate at the finish line!  It is going to feel so good running with the MMRF Power Team!  Please visit my link to my fundraising page  I have a big goal of raising $5000 and I'm hoping to get there.  Anyone who would like to honor a loved one who is fighting a cancer battle or has lost their fight, I would be be so honored to wear their name on my running shirt.  With your donation I will honor your loved one as I run the many miles to the finish line.

So like seemed to get back to hectic normal.  It seems like the kids are getting busier and busier and therefore  I am getting busier and busier.  Having four very active kids all the same ages in different after school activities doesn't leave much time to be lazy.  Between karate, baseball camp, piano, gymnastics team, basketball, ski club, and drama practice and homework, the endless piles of laundry, grocery shopping and cleaning and keeping up with my running it feels like there isn't enough time in the day.  But busy is good. Busy equals normal!  And normal is nice for a change.  After my little health scare Mike and I decided we are longer going to put things off.  We need to embrace these healthy days!  So we decided to start filling up our calendar.  Next week, I am taking the kids to Ft. Myers, FL to visit my parents for a week.  We are so excited!  My parents are counting down the hours until we get there.  In April we are planning a surprise trip (details soon!)  And recently Mike was awarded with Salesman of the Year!  I am so proud of him!  He is so dedicated to his job and it is wonderful that he has been recognized for all of his incredible efforts.  In the past 3 years he has been the top salesman of the year.  And to think they have been the most stressful years here at home.  As part of his recognition, he has been awarded an all expense paid trip for two to Bali, Indonesia!!!!!!  Yup all the way across the world to Bali!!  My parents are coming to stay with our kids and we are going to have a second honeymoon in Bali!!!  We just confirmed our trip and made our reservations to go on an Elephant Safari (I get to ride on an elephant) and to swim with Dolphins!!  I still cannot believe we are doing this.  Before cancer I don't think we would ever get on a plane together and leave our kids behind and fly across the world for a week.  But there is no way we are passing this up!  This will be a trip of a lifetime! Not to mention my parents are very excited to spend the week with the kids and Flower!  So between all the traveling and baseball season, it is going to be a very busy spring.

This past week a couple of my dear friends have lost their mothers to cancer.  My friend Shayna's mother  lost her courageous fight after years battling esophageal cancer.  She was an incredible strong woman who lived a full life and kept an amazing attitude despite her many years fighting this terrible disease.  Also, my friend Leslie lost her mother very quickly after a recent diagnosis of Leukemia.  My heart and prayers are with them during this very sad difficult time.  At my friend Leslie's mom's funeral service the minister said alarming message in his sermon.  He told us that at each funeral we are reminded that we are closer to being "in the box" than outside "the box".  I could see around me that everyone was shocked as I was at his statement.  In fact at the cemetery my friend Melissa and I talked about how we thought his message was very morbid.  I still do think he could have stated it more appropriately but I think I am understanding his message more.  Every day is truly a gift.  We really don't know when we wake up in the morning if today will be our last day.  So every day should be embraced.  We don't know when our time will be "to be in the box".  I still can't believe he put it that way.

Barbara, a high school friend of mine has recently been diagnosed with Neuroendocrine Cancer.   She is just beginning her battle.  Every time I hear of a new person diagnosed my heart aches for them.  Just knowing firsthand the fear that comes along with a cancer diagnosis.  As I read her CaringBridge updates tears roll down my face.  I feel like I am holding on to each update waiting for more positive news.  My prayers and thoughts are with Barbara as they begin this roller coaster ride.

 Recently at dinner Mike and I had a talk with the kids.  We said a prayer for our friends who lost their mothers.  We talked about how blessed we feel that I was doing so well.  In keeping it "real" we also talked about the fact that we should embrace all these healthy days that are a gift.  Our kids know that I may likely relapse at some point and that is why I stay on maintenance medication.  They asked what we would do when the cancer comes back.  We explained that we would fight that much harder this time and that together as a family we would get through it.  My beautiful sensitive Sarah broke down in tears and cried.  She told me that she can never lose me because she wouldn't know how to live without me.  My beautiful baby.  I am so truly blessed in so many ways.

I hope you all enjoy the weekend ahead.  Ours will be busy as usual.  The kids have ski club tonight.  I will be going to support my friend Shayna celebrate her beautiful mother's life and mourn her loss.  Tomorrow between flag football, birthday parties and play dates I'll be heading to the salon hoping my stylist can do something with this crazy hair!  The kids begin their February Vacation after today so it will be time to pull out the shorts and flip flops for sunny Florida!

Embrace today and Enjoy!


Friday, January 27, 2012

A Trip of A Lifetime!

I'm back from California!  Although I just returned on Tuesday night, it seems like so long ago.  Yesterday, I was back in the infusion chair for several hours.  I was in for my monthly Zometa infusion.  My labs came back with my potassium low, which meant it was not going to be a quick visit.  After receiving a bag of fluids and potassium, about 4 hours later,  I was given the thumbs up to leave!  Never a dull moment living with MM!

Well,  that's enough with the drama, now on to the fun stuff!  What a trip Suzi and I had!  We were busy from the time we stepped off that airplane on Friday!  Let me first start off with saying how CRAZY the drivers are in LA!!  Everyone is in a rush to go who knows where!  Not to mention the multiple 5 lane freeways!  Thankfully we had a our little GPS friend "Betty" on my Iphone who got us everywhere! Sometimes she led us the long not so scenic way, but she got us there!  Our first day we headed to lunch at the Ivy in Hollywood!  No celebrity sitings, but we had an incredible lunch!  After that we headed to Rodeo Drive!

The next day, we hit Hollywood Boulevard!  It was fun to see the Hollywood stars  and visit the Wax Museum.  It is crazy to see how dirty Hollywood Blvd. is and how run down and not so glamorous it really is.    Once we got our  fair share, we headed out to the hills.  Yup, we did our own tour of Beverly Hills.  We just followed the numerous tour buses and headed to Robertson Blvd.  Our GPS buddy Betty led us some pretty crazy narrow hilly roads.  But we were able to find Michael Jackson's house!

Once we got our share of LA we headed out to Pasadena.  Ahhhh...... there was a definite slower pace there.  What a beautiful city!  It is full of beautiful shops and incredible restaurants.  Everything is beautiful and clean.  The drivers are polite and drive slower!  It has a little New England Charm to it, but on a larger scale.  Our first night we enjoyed a delicious dinner at a great Mediterranean restaurant.  We were able to walk everywhere from our hotel.  After dinner, we walked a couple miles back to our hotel, but realized we needed a chocolate fix.  So we headed out again and found a delicious pastry shop where we purchased cupcakes!  Again, we walked back to the hotel, put on our comfy pjs and indulged!

The next morning, Suz and I headed out to do a 12 mile run.  We were both a bit nervous. We hadn't run over 10 in a while.  We headed out towards the Rose Bowl to do our run.  We quickly were distracted by the incredible smells and sights!  The air smelled like Eucalyptus!  The flowers and lush greenery were beautiful and definitely a nice welcoming change to brown New England!   As we got closer to the stadium we noticed a lot of runners.  Well, it turned out that the Rose Bowl Half Marathon happened to be going on.  So what  did we do, join in!  We had a blast!  It was definitely a great way to see the city.  And for a few miles we were led on a dirt rocky trail with some challenging hills!  The spectators cheering us all on carried us through!  Although we didn't have a bib number, we were definitely invested in this race!  We crossed the finish line which ended right in the stadium with the crowd cheering and the announcing commenting on our smiling faces!  Once we finished the race, the people at the finish line tried to grab our timing chips on our ankles.  Oops !!!  We of course didn't have any!  The race was great!  We are definitely getting excited to run the Boston Marathon in April!  I am just so happy Suzi was able to run without any pain in her hip and I didn't have to visit the med tent!  After the excitement of finishing the race, we then realized we were still several miles from the hotel.  Trying to get our legs to move again was a bit of a challenge!  After we climbed the first hill, they loosened up and we ran back to the hotel!

Suz and I at the finish line at the Rose Bowl Half Marathon, Pasadena, CA

After we showered we got ready to meet some very special people for lunch.  Let me start by sharing with you, that since I was diagnosed I have been in touch with a guy named Mike from California who is also a Multiple Myeloma survivor.  During the first few weeks of my diagnosis when I wasn't getting much sleep at night, I spent a lot of time researching my cancer.  I was desperately looking for anything positive.  In a sea of negativity, one night I received a glimmer of hope.  I was on the MMRF facebook page.  There was a question about how Multiple Myeloma was affecting your life.  I decided to write in. In my words, it was quite clear that I was scared.  Mike responded to me about his situation. From that initial contact, our relationship blossomed from corresponding in long emails,  to text messages,  to long conversations on the phone.  Mike, was also 40 when he was diagnosed.  As an avid boxer and mountain biker he was in great shape.  Multiple Myeloma attacked him fast and furious, as he was in renal failure at diagnosis.  He had recently completed his transplant when he reached out to me.  His honesty and willingness to share his experiences with me helped me tremendously.  Although we had never met, I felt this incredible connection to him.  As we both were dealt the similar cards.  Mike and wife drove out to Pasadena to meet us.  As I exited the elevator in the hotel lobby I spotted Mike and his beautiful wife Kathy.  Tears filled my eyes as we greeted each other with a big hug.  That moment was so overwhelming.  I felt so connected to both of them.  We traveled a similar journey in a lot of ways together, although we had never met before that moment.  We all talked effortlessly at lunch.  Time seemed to stand still.  I could of spent hours chatting with them. Here we were sitting across from each other both currently enjoying life in remission!  We are both enjoying getting back into shape and figuring out life living with an incurable cancer.   When we walked back to the hotel and got ready to say good bye I felt sad.  I wished so much that my husband Mike could have met them. I felt so close to them and didn't want our visit to end.  Suz and I both encouraged them to come out and visit us in New England.  I really hope they do some day.  Mike and Kathy are two beautiful blessings that came into my life with cancer!

My good friend Mike and I in Pasadena!

After another awesome day spent in Pasadena we headed to Burbank for the Ellen Show!  Suz and I were so excited.  When we got to the Warner Brother's Studio we registered and we were handed our VIP Tickets!  There were so many people there.  At this point, we really didn't know what the significance of VIP tickets was.  There were several people with them.  We had also put together a present for Ellen.  It was here birthday this week so we figured, why not.  You should have seen us in Pasadena trying to pick out the perfect gift bag and card.  It is not everyday you get the opportunity to pick out a card for someone as special as Ellen!  In the hotel, we spent about an hour writing a message in her card.  We put together (with the help from our friends at the MMRF) a bag full of goodies!  A MMRF Power Team Shirt, and hat and socks, along with pom poms and Multiple Myeloma burgundy bracelet.  We also included a fun hair clip Sarah and Emily made for Ellen.  We were thrilled when people from her show collected our gift. Hopefully Ellen received it!  

Before the show started, Suz and I headed over to a local bar for a couple of glasses of wine to celebrate and loosen up!  We were so excited and nervous at the same time.  Suz had written to Ellen several times about my story.  Also our friend Alicia over at the MMRF had got in touch with a member from Ellen's production team.   Although we tried not to get our hopes up, we were hoping to have the opportunity either on or off camera to talk with Ellen.  She has made such a difference in so many people's lives.  She uses her platform in such a positive way.  It would be so incredible to share my story and educate her a little about Multiple Myeloma.  It is such an unknown cancer with such a low 5 year survival rate that affects 20,000 people every year.  Just the remote possibility of Ellen being touched and inspired to give this disease a little attention would be so wonderful.


Well the time came to take a seat in the studio.  With our VIP tickets in hand, we were told we could take a seat in the second row from the stage.  At this time, our tickets did not have our name on them or any other identification.  The studio began to fill up with music, excitement and energy!  About 1 minute before Ellen was introduced on stage, a member from her production team came up to us and confirmed that we were in fact Suzi and Jeanie!  Before we could even react, Ellen came out on stage! The show was so much fun!  Ellen danced right by us!  She is even more adorable in person!  We were very surprised that the show runs like a live show with no takes.  Ellen also doesn't interact a whole lot with the audience.  But it was a lot of fun to be there.  Sam Worthington from Avitar was there.  He was adorable and very charming.  Also Michael Strahan, former NFL Giant's player and current sport's commentator.  He was hot to say the least and so funny!  Also Ellen had the very first interview with Seal since the announcement of his separation from Heidi Klum.  Seal definitely has a presence.  He is so tall and handsome.  Who knows what the real situation is, but he came across very loving and such a gentleman.  And in fact, sounds like he is very much in love with his wife.  Although, it was very awkward hearing him sing "Let's Stay Together" based on his current marital status.  

All during the show there were unexpected moments.  Suzi and I kept thinking are we going to be called up on stage?  Why did the producers point us out?  Ellen sat in her chair and announced she had a letter to read.  And our hearts began to pound.  Unfortunately it wasn't our letter.  Before we knew it the show was over.  Ellen came out on stage one more time when the cameras stopped rolling.  We thought, maybe this is it.  But instead she informed the audience that the paparazzi was outside hoping to get information from the audience about Seal's interview.  There was a little part of us that was crushed.  We almost wished that the producer never approached us.  The show ran long, and perhaps they were planning on doing something but ran out of time.  We will never know.  It wasn't that we wanted a moment of fame, we were really just hoping to give Multiple Myeloma some much needed attention.  I am still hopeful that she will be touched by our gift and card.

Well that is a little recap of our fun girls long weekend away!  It was a trip full of fun, excitement and emotions!  I am getting back to my "mommy world" now.  I have a sick boy home from school today. Yesterday with the day spent at the hospital  I haven't had any time to run this week.  I am hoping to get in a nice long run this weekend!  The Boston Marathon is only 79 days away.  I feel so blessed to be healthy and strong enough to be running!  I would love to honor all those who are fighting for the lives and those who have lost their fight.  Please visit my page if you would like to sponsor me.  I will proudly write your loved one's name on my running shirt!  Every little bit helps and together we will run miles to save lives!  The innovative treatments that are being funded by the MMRF are also being used in over 30 other cancers.  The MMRF has recently been awarded by the Charity Navigator, America's premier independent evaluator of charitable organizations, its 4-star rating.  It is the highest rating possible for the ninth consecutive year, demonstrating exceptional fiscal responsibility in the MMRF's efforts to bring patients the next generation of treatments and find a cure for multiple myeloma.  You can be sure your donation will go directly to improving and extending the lives of so many.

Enjoy all your blessings this weekend!

Wednesday, January 18, 2012

A New Year.... New Adventures!

Happy New Year!  I cannot believe it has been so long since I last posted.  That is an indication of how well life is going.  Life has resumed to it's busy pace.  Lately it has been hard to carve out some quiet time to myself to reflect and to write.  Today before the kids rushed off to school I was giving them all a lecture about being responsible for their gloves, hats, etc.  Yup the small stuff matters again, yeah!

The holidays this year were wonderful.  It was great to be my energetic self again.  I cherished every moment of decorating the house, picking out special presents, the wrapping and of course all of the baking.  The smells and sounds of Christmas that fill our home is absolute heaven!  After being so sick last year, it was so great to have a big hand in creating the "magic" of Christmas!

After the holidays, as I was packing up all many boxes of decorations, I couldn't help think what next Christmas may bring.  I can only hope and pray that life continues to blossom and that we will be all together celebrating.

In my previous posts you may have read how my friend Suzi and I won VIP Tickets to the Ellen Show at the MMRF Fall Gala in October.  Well the time has finally come and we are flying out to California on Friday.  We are so excited!  It is so funny how irony works.  When I first got diagnosed with Multiple Myeloma in June 2010, Suzi wrote to the Ellen Show.  She shared my story and all the efforts we have been making with the Multiple Myeloma Research Foundation.  Although we never heard back from anyone from the show, I believe it planted the seed for what was to come.  So in October at the Gala when Suzi and I saw the auction item for the The Ellen Show, we knew we had to bid.  When we found out we won the tickets we were so thrilled!

We are not quite sure what VIP tickets mean.  What we do know is that we will be at the studio on Monday, January, 23 for the taping of her show.  I think it may air on Tuesday, Jan. 24.  We hope we get the chance to meet her.  The MMRF is putting together a fun package that we can hopefully give to Ellen personally.  I will be sure to post lots of pictures!  Look for Suz and I dancing in the audience!

In addition to getting ready for my trip I am in week 14 of my training for the Boston Marathon.  This Friday Suz and I will be doing our long 12 mile run in California!  It's been so cold around here lately so we have had to run indoors.  It will be so great to run outside!  I think we will definitely make it a nice coastal run!  Hard to believe race day is only 88 days away.  This time around, I am following a comprehensive running/strength training schedule from the book The Marathon Method, by Tom Holland.    Hopefully being better prepared in my training as well as with my nutrition and fueling I will avoid the medical tent this race!

Please click on the link to visit my fundraising page.  We are running as part of the MMRF PowerTeam!  My fundraising goal is $4000.00  I appreciate any contributions!  If you would like to honor a loved one who is battling cancer today or has lost the big fight, please sponsor me a $1 per mile for the big day, and  I will wear your loved one's name on my running shirt!

I will keep you all posted with our adventures in California.  Now time to figure out what to pack!  Have a great day!