Friday, December 31, 2010

Happy New Year- +45 Days Post Transplant

One year or  365 days, 525,600 minutes, however you want to define it.....guess what?  There is only 6 hours left of this decade.    Then it's a fresh new slate my friends.  Exactly one year ago, I was sitting at home with my family.  I was doped up on Vicodin.  I had recently had a cyst removed from my chest which was causing excruciating pain.  But I wasn't going to let that get me down.  At least I could be loopy with my  loved ones . My kids all wanted to stay awake for the ball to drop.  We all settled in the living room in front of the fire watching Ryan Seacrest.   Mikey and the kids were falling asleep.   Me, the one on Vicodin was awake, go figure?  At midnight I filled all the champagne glasses with sparkling apple cider. ( Ahhh, so long are the days freezing our butts off at First Night in Boston).  Well, at least Emily stayed awake with me.  We toasted the new year and went to bed!  

I can remember telling my friend Beth that my resolution was that it was going to make it the be the "Year of the Jeanie".  Yup,  I was finally going to take time out for myself.  I was joining a book club, taking my training to the next level of training for a triathlon, and making it a priority to spend quality time with my girlfriends.   

Despite some setbacks like the constant unexplained pain in my chest and then the broken sternum, that is what I did.  I spent beautiful winter days out in the woods with Beth and the dogs snowshoeing.  We also grew to love running outside in the cold with the dogs.  Perfect days to run were days that were 30 degrees or above.  And we had many of them!  Beth and I got out there everyday we could and we loved it!  I joined a book club and finally was enjoying reading.  Not to mention the wine and the incredible women I met. 

The winter despite the mounds of snow we got, seem to fly by.  I was enjoying everyday outside being active. We were all looking forward to spring.   I was getting a lot of substitute opportunities at school, Mike was very busy traveling even internationally.  In fact, he took a business trip out to Israel.  While he was in Israel, I planned a big surprise 40th Birthday at our house.  I pulled it off and actually surprised Mike, which is not an easy thing to do.  We had an amazing party here with the help of my brother who helped me plan the whole thing.  My parents from Florida even came out to surprise him.  We had such a great time toasting and roasting Mikey! 

The spring in our house means baseball, baseball, baseball with a little soccer too.  With four kids, our weekends are spent on the fields.  Mitchy got his first two home runs!  The girls played t-ball for the first time and Mike was the coach.  Playing with their brothers in the yard over the years, certainly paid off.  They both were great.  Cam joined the soccer team and became quite a confident player.  I finally took a weekend spa trip with my lifetime friend Suzi.  With the warmer weather, came more and more opportunities to ride and run.  My first Triathlon was on Mother's Day; however, it was looking doubtful if I would be able to participate.    I was recovering from a broken sternum and had a lot of unexplained bone pain, which prevented me from hitting the pool. I had just completed a few months of physical therapy.   But a week before the race, my doctor gave me the thumbs up  to do the triathlon.  Despite never really training for the swim part, I did it!!  It felt amazing and I couldn't wait to do my next one. 

Our lives quickly took a drastic turn on June 3 .  That was the day that I found out that the cyst that I had removed (which had grown back on my chest) was really a malignant tumor.  That phone call I received that morning at 6:30 was my defining moment in the year 2010.  My life stopped as I once knew it.  That  feeling of invincible strength, was replaced with absolute fear and sadness.   I will never forget the doctor telling me in his office that morning that now I was a cancer patient and that my strength would be tested in so many ways but that I would become a  cancer survivor.  At the time, all I saw was his mouth moving and all I heard was the word CANCER.     One week later a bone marrow biopsy confirmed that  my cancer was a rare and incurable kind.  Lucky me!

I did wish for the "Year of Jeanie", right?  Holy Crap this is not what I intended.  Could I take it back?  Why didn't I just make a more simple resolution like no eating sugar or no swearing. Holy %$&@! 

My life and the life of my family has been tested this past year.  I am blessed to be +45 days post transplant.  I have been given a new chance on life!  My energy level is incredible.  Christmas was beautiful.  Santa was more than generous to our kids and seeing their eyes and expressions on their faces Christmas morning was priceless!  The magic of Christmas was so present this year in our home.  As Mikey likes to put it, Christmas went on without a hitch!  I even got to enjoy baking cookies with the kids!  We had my sister and her family, my brother, my mom and my mother in law  all here for an incredible Christmas dinner.  I have spent everyday of the Christmas vacation, playing with the kids and enjoying watching them learn and love ice skating.  Life is fantastic!

This year I had my darkest moments.  However, it has also been a year filled with love, support and friendship.  Our family, friends and neighbors have been there us in so many ways.  I feel more loved than I have in my whole life.  I feel closer to my family and friends than ever. I have seen how generous and loving people, even strangers can be.  When I think of the past year, I do not see it as negative.  I like to think of all the obstacles we faced as opportunities.  Opportunities to see learn more about life and the people in our lives.  I do hope the "opportunities" in the upcoming year are less scary and less stressful.  But nonetheless, I hope to continue to learn more about what this thing called life is all about.  I now no longer like to look too far into the future.  Today is great.  Today I feel strong and my family is together.  I  know first hand all that can change in a moment's notice. 

This New Years I think my Resolution or my focus will be to get back in the Game, the Game of Life!  To enjoy each day completely and to continue to see obstacles as opportunities that continue to strengthen us.  I wish you all a Happy New Year full of Love, Happiness and Health!


Saturday, December 18, 2010

Day +30 Post Transplant- Loving Feeling "Normal"

Good morning everyone!  I cannot believe it has been so long since I've last written.  I guess like everyone, I am getting caught up with all the preparations for Christmas.  It feels so good to say that.  I would have never thought that I would have the energy to do all that I've been doing this last week.  I keep waiting to wake up from this fantastic dream.  I feel "normal'.  Actually better than normal, freaking fantastic!!!  My energy is where it was prior to the transplant.  Granted I am not doing any real heavy lifting or exercise for that matter, but I have the energy to be up all day and keep up with the kids, the cooking, the laundry and all the fun preparations for Christmas.  I still have restrictions on exposing myself to crowded places, so thankfully my mom is here and is doing all the grocery shopping and taking the kids to activities.  She has been such an incredible help!  I think she is in shock as well at how great I'm doing.  I know Mike is.  He had planned on not traveling until the first of the year, but he took a last minute important trip this week because of how well I'm doing.

As I told a friend this week, mentally I feel like I could run a 5K.  Although physically I'm sure it would be a bust.  It truly amazes me how a positive attitude along with surrounding yourself with positive energy can really help the healing process.  This past week I went in for blood tests at my local hospital.  I received such a warm welcome from all my incredible nurses and doctor.  My results were great!  My numbers keep improving!  This Thursday  I'll be going back to Dana Farber.  I am hoping to get the thumbs up to be with extended family this Christmas!

It has been great to take a break from any heavy meds.  I will soon have to start up again.  The ongoing treatment includes the drug Revlimid.  I have was on Revlimid over the summer and I responded very well to it.  In a recent trial know as CALGB, patients were given a high dose of melphalan followed by a stem cell transplant followed by Revlimid , or were given melphalan, a stem cell transplant and a placebo.  The results of the trial were as follows: the Revlimid group had a 60% reduction in the risk of their disease progressing after 4 years!  Incredible!  Mike and I are so encouraged by this report. However, about 15 patients in the Revlimid group developed a secondary cancer.   The secondary cancer is called Acute Myeloid Leukemia (AML).   Although, it seems to me that an 8% risk in developing a treatable cancer is a small price to pay for controlling a terminal cancer and improving my quality of life,  it is still a little unsettling.  I know everything has risks.  I've seen some of the nasty side effects that high doses of chemo has my body.  And I am sure the more a person is on this "poison" the more damage it will do.  But what are my choices?  According to incredible experts at Dana Farber that I have entrusted with my life, this is my best path.

I would like to share with all of you a beautiful paper my son Mitchell (age 10) wrote in school.

                                    The Perfect Gift

         The perfect gift for me would be for my mom to not have cancer. I think this would be a perfect gift because since my mom has cancer she can’t have a lot of company. She also can’t go anywhere and I mean anywhere she can’t even go to our neighbor’s house. There are only two types of water she can have. For my mom not needing to go through this would be magnificent it would be by far the best gift ever. If she wasn’t sick she would be able to do so much activity with us that she can’t do right now. 

         The problem is that it can’t happen only if scientists find a cure for cancer. Every night I have gone to my bedroom window and I have prayed for this extremely special gift to come as soon as possible. Overall this gift would be extremely rare and special to my family. I really hope there is really magic in the world so this could happen one day.

           P.S I really hope this will happen on Christmas. 

How incredible is Mitch?  If only it was that easy to wish for a cure.  Hopefully his wish will come true.  For now, we will all be blessed knowing we are all together for this Christmas.  It will indeed be the most special one.  My kids keep asking me what I want.  And I tell them I have got my present early this year!  I have to still pinch myself everyday!  I am home and feeling great!

I hope you all are enjoying the last weekend before Christmas!  Let's all just wish for a little snow this week so we can have a white Christmas!

Love and Hugs,

Thursday, December 9, 2010

Day +21- And 1 week home today!

I hope you all are getting into the Holiday Spirit!  It seems like it is even coming quicker this year.  I don't know if it is because at our house we are getting a little late start on it or what?  Our kids are still finalizing their Santa Lists.  We told them their deadline was this weekend.  But our house is all decked out in beautiful lights for Santa!  We also just received in the mail our Christmas Cards for this year.  They are so beautiful and I cannot wait to mail them out!  An incredible woman from California named Nancy who used to work for Mike's company offered to make them for us.  I should mention, that Mike has never even met this woman.  I am in amazement everyday of the generosity and kindness of so many who have helped our family in so many ways this past year.  Our family also continues to receive home cooked  meals during the week by wonderful people in our community even during the most busiest time of the year.  I also receive daily beautiful cards of encouragement and prayers by so many.  Even people whom I have never met are sending me messages on a daily basis.  I am so touched by the beautiful human spirit of so many and it gives me so much strength and happiness. 

Today marks day 21 since my transplant and 1 week home today! I owe so many of you phone calls, so I thought I would give you all an update.   We went down to Dana Farber today for some blood tests and a followup with Dr. Munshi.  In his words, "I'm a rockstar!"  Yup, my numbers are doing what they should.  They are continuing to grow!  No, this doesn't mean I got the thumbs up to ditch the gloves and mask and go out to dinner.  However, I did get the ok to floss my teeth.  Oh it's the little things these days! 

We also discussed where we go from here.  My next appointment in Boston is not until the 23rd.  I will however go for a followup and blood tests next Thursday with my local Oncologist Dr. Hakimian.  Then probably at the end of January I will most likely start a 5th cycle of Dexamethasone, Revlimid and  Velcade.  Yup, you read that right.  That was the chemo cocktail I had all summer long.    Even though I did have the potent chemo Melphalan in the hospital, there are still Myeloma cells in my body.  Recent research supports doing a 5th and 6th cycle of this Dex, Rev. and Velcade for patients following a stem cell transplant and then continuing with a Revlimid maintenance.  This will hopefully keep my myeloma quiet for at least 3 years.  We were a surprised to hear that I would need to do this treatment again.  But as Dr. Munshi explained to us, the Myeloma world is changing at a rapid speed.  He just attended a conference last week where these studies are being discussed and recommended.  I am so fortunate to be a patient of these brilliant doctors in the cancer institute driving these clinical trials.

Well that is all for now.  Mike, my mom and the kids should be coming home any minute from the Holiday Concert that Cam was in tonight. It makes me sad to be missing all these special times but hopefully this will be the only concert I miss for a very long time. I think I'll  have some of that pumpkin ice cream in the freezer, my doctor wrote me a prescription to eat more!


Tuesday, December 7, 2010

So Blessed To Be Home!

Hello everyone!  Yes it is actually me!  I am sorry for my absence over the last few days.  Today is Day +18 since my transplant and I am writing this blog entry in my home on my comfy couch with my Flower by my feet surrounded by incredible Christmas lights and decorations.  It is just Flower and I.  The boys are at basketball with Papa and the girls are in a performance of Alice in Wonderland tonight and Mike and Nana went to go see and film it for me.  I am sad that I will miss their performance and I am unable to watch the boys play but I am feeling so thankful and blessed to be home.

My welcome home, how can I even begin to describe it?  I'll try my best to take you on my journey home.  I cannot tell you how truly amazing it was to hear the word "Discharge".  Mike and I were amazed at how smooth and quick it was.  One of the most difficult parts was saying thank you  and good-bye to the incredible nurses and staff the Brigham who took such incredible care of me.  They were there on my saddest darkest days and cared for me in such a loving and supportive way.  I am so grateful for each and everyone of them and I will never forget them.

While waiting for Mike to pick me up and take me home I ordered one last chocolate shake.  Yummy!  My favorite thing on the hospital menu and I sure am them missing them!  When Mike arrived, our nurse Nori informed him that he could hug me. For 2 weeks he would come to visit  we could not even touch each other.  No hugs, no kisses.  But today he wrapped his arms around me and held me tight and kissed me on the cheek.  I tear up now just thinking about how amazing that felt.

My nurse Nori and I

After saying our tearful good-byes to the hospital staff,  I was wheeled out of the Transplant Pod with my mask and gloves on.  When the big doors opened and I was wheeled out to the elevator hallway my heart began pounding and tears ran down my face.  I was actually leaving!

While in the hospital lobby waiting for our car to arrive my head began to spin.  There were people everywhere coming and going.  Sirens  and cars beeping were heard.  People coughing and sneezing.  It all seemed so overwhelming.  For three weeks I had been in a protective bubble.  And now I'm free.  The chaos of life was all around me.  Was I ready?  The noise, the lights, the germs.  It all seemed so scary.  Then all of a sudden I looked up and a friendly face was in front of me.  My incredible nurse Marty who was with me during my Stem Cell Collection.  It was wonderful to see her.  She was just picking her lunch up and just happened to be walking by.   She actually visited me during my transplant stay. She was amazed I was leaving the hospital already.   She is one of those beautiful souls I had the fortune to be blessed with.  What a special gift to see her as I was leaving.

Our car finally arrived and it was time.  As I was wheeled out into brisk December air, a sense of calm filled my body.   I was going home!  Once we were in the car and driving, Mike and I both began to cry.    We did it!  And now I was coming home.  All of our emotions of the last 6 months poured out.  I was sitting in our car with a new chance on life.  How blessed are we?  We drove with my window opened.  The cold air felt amazing.  After 3 weeks in that tiny fishbowl I finally was feeling fresh air.  As we pulled into our road we were greeted with signs welcoming me home.  There were balloons and red bows all in my front yard.  Wow!  I looked at Mike and he told me he had nothing to do with it.  I still to this day do not know all who did that for me.  But I want you to know how much I love and appreciate you.  What a homecoming!

As we opened the door I was greeted by my very loving and excited dog Flower.  She finally had mommy home.  She could barely control herself she was so excited.  My mom and dad were in the kitchen with open arms and smiles on their faces.  It was so wonderful to see them and give them both big hugs finally.  They have been so incredibly supportive and helpful to our family while I was in the hospital.  It was evident as I looked around my beautiful and now decorated home, that our family  while mommy was away, was cared for in such a loving and wonderful way.

We got home in just enough time for us to surprise the kids at the bus stop. Mike drove me down the bus stop and my parents walked with Flower.  As we were anxiously awaiting my friend Shayna pulled up beside us in her car.  She has just delivered dinner to us.  I jumped out of the car (with mask and gloves on) and gave her a big hug!  It was so fitting that I would see her at that very moment.  Shayna is a four year breast cancer survivor.  She also was the person I went to see during the first few days after I heard the terrible news that I had cancer.  She has been such an inspiration to me and has given me so much strength even during my darkest days. 

  I was bursting at the seams waiting and anticipating for the bus to arrive. Once it did, I hopped out of the car.  The kids leaped out of the bus and ran to me with open arms and the biggest smiles.  They all dropped their backpacks and hugged!  What a precious moment.  I missed my babies so much and it felt so good to hold them. It was a moment I will hold close in my heart forever and I believe they will too. 

When we got home the next several hours were spent with the kids sharing with me all their school and art work from the last few weeks.  Mitch had a beautiful book his class put together of stories the kids wrote for me.  So precious!  It is incredible the support my kids have received from all their classmates and teachers.  And the creativity these kids have amazes me.  I will treasure these stories forever.

My first night home can best be described as perfect.  Sitting around cuddled with my kids, sitting at the dinner table with my parents, Mike and the kids and the best part tucking my kids in.  One of my favorite things in the world to do.  I missed tucking them in so much. They all fell asleep with smiles on their faces.  And falling asleep in my husband's arms in our own bed......absolute heaven!  Mike and I both enjoyed the best night sleep in probably over the last 6 months.

On Friday night my brother Rob spent with us to celebrate his 32nd birthday.  What a wonderful gift to be able to spend it with him all together. 

The next several days, my body felt tremendous fatigue and I battled a fever along with the chills.  Mike was on the phone with the doctors and we were all scared I was heading back to the hospital.  Just walking up and down the stairs or staying vertical for too long I became lightheaded.   A constant reminder of how much I need to rest.  Monday, Mike and I headed down to Dana Farber.  My big day out!   While checking in we ran into our friend Kristin Porter a friend from college.  She and I have been corresponding via Facebook for the last month.  We both just looked into each other's eyes and cried.  She is also a mother and wife with an incurable rare cancer like me.  We hadn't seen each other in 20 years.  And now here we were both standing in the lobby at Dana Farber, bald, and forever changed since our diagnosis.  The connection I felt with her at that very moment of eyes locking, again one of those moments I will never forget.  We looked at each other with tears rolling down our face and both said,  " How did this happen?"  Kristen was there for a scan and unfortunately it was a tough one.  Although her body has responded to treatments she does have a tumor that is growing and she receiving the sad news that she needs to do more rounds of chemo.  Please keep her in your thoughts and prayers.   

While sitting in the lobby my emotions got the best of me.  I was sad for Kristen and her family.  I felt blessed to be out of the hospital but couldn't help being scared for the future.  At the same time, crazy for me to even admit this, but I think it once again hit me that I am a cancer patient.  You would think that 6 months of chemo, a bald head and stem transplant I would have come to that realization. But I'm telling you, there is a still a part of me that is in denial. Yet sitting in that lobby accompanied by so many others it slams you right in the face.  This will always be a part of my life. I will always be a cancer patient.  Hopefully I will enjoy many years of life.  And hopefully my cancer will be treated like a chronic disease.  But it will always be with me. I will forever be a blue card member at the Dana Farber.

I received great news at the hospital.  My blood pressure was the highest it had been in long time, 100/60.  I had no temperature and my blood results were pretty good. My WBC and platelet count was good.   My Absolute Neutraphil Count did go down from 2000 to 600.  So I received another Neupogen Shot and hopefully that gets things going in the right direction again.  I promised to drink more so they, let me go without receiving additional fluids.  I am heading  back on Thursday for more labs and hopefully continued progress.

Words cannot express the happiness I feel being at home with my family.  Although I am isolated to my home with only trips out to the doctor's office, I couldn't be more happy.  I am trying to continue to be patient with my body and to listen to it.  It is challenging not to physically help at home in the capacity that I would like to  and it will continue to be my daily struggle.  But I am trying to remind myself that just physically being here is a gift and that slowly I will begin to be able to do more. I wish that I could call friends and family and ask them to come over and visit, but right now the risk is too high.  Please know that I am thinking of all of you and missing you.

  I read last night about the sad news about Elizabeth Edward's failing health.  I am so sad for her.  I recently saw her on a tv show while in the hospital.  She said that her only wish was to be around for the next 8 years.  By that time  her son would be 18 and she could see the man he would become and her daughter would be 30 and hopefully married with a child on the way.  It is sad to hear that her wish does not look like it is going to come true.  She is in my thoughts and prayers and I wish her peace in her last days surrounded by friends and family. 

I am truly blessed to be surrounded with so much love and support by family and friends.  You continue to inspire me every day and give me so much strength.   Christmas has come early to my family this year!


Thursday, December 2, 2010

Day +14 I'm On My Way Home!

I cannot believe this day has arrived.  I am at a loss words to express the emotions I am feeling right now.  A few moments ago I had my Hickman Line removed from my chest.  My incredible nurse Nori held my hand the whole time as tears fell down my face.  Not from any pain I was feeling from the procedure, but for the incredible emotions I am feeling.  I cannot believe after the last 6 months of fear and uncertainty, the last 3 weeks being away from my family,  I am coming home.  I am leaving this hospital with a whole new chance on life.  I am so incredibly thankful for the incredible hospital team at Brigham and Women's Hospital and Dana Farber and of course  my local Oncologist Office at Southern NH Medical.  Because of all of you,  the incredible  advances in medicine, the incredible love and support I received from my family, friends, neighbors and even strangers, I am coming home .  I feel so incredibly blessed and am so thankful for this beautiful day.  The future is always uncertain but this very day is an incredible day and  one I will never forget. 

Love to all of  you for giving me my life!


Wednesday, December 1, 2010

Lucky Day +13!!!!!

Ok my lucky number is 13!!!  Today I am +13 days old since my Stem Cell Transplant and I heard the news I have been waiting for.....I hit my numbers!!!  Wahoo!!  I feel like jumping up and down on my bed in my fishbowl.  I am close to getting outta here!!!  So,  ready  for a little medical lesson.  The key number we have been waiting for is called my Absolute Neutrophil Count.  Neutrophils are the key components in the system of defense against infection.  It is calculated by multiplying the WBC times the % of neutrophils in the differential WBC.  Ok who really needs to know all this???  I just wanted to sound smart for a minute.   What really matters is this Absolute Neutrophil Count needs to be at least 500 for at least 2 days and I am at 716!!!!!!!  Yipya!!!!!  I cannot tell you how incredibly happy I am. 

Dr. Mushi my Oncologist at Dana Farber just came in to congratulate me and I completely broke down in tears.  I am so incredibly thankful and feel so blessed.  This was the longest 17 days of my life.  And I made it through without any major complications!!!!  I cannot thank all of you enough for all your continued love, support and prayers.  Although I have a long road ahead of me and I will have to live a pretty isolated and strict life for a few months, I will be home with my family and hopefully close to cancer free!! 

I will keep you posted but hopefully tomorrow I will be getting my Hickman Line out and packing up the fishbowl!!!  Get ready Sawtelle Rd.  I'm coming home!