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!


Monday, November 29, 2010

Day +11- I Miss My Precious Little Angels!

Lying in bed in my little fishbowl, I look around at all the happy and colorful pictures made by my little artists at home.  It's been 14 long days now since I have been home with my kids.  I think what has gotten me through to this point, besides being heavily medicated and exhausted, is that I have not opened myself up to the emotions and pain of being away from my kids.  I have constantly redirected my thoughts and energy.  If I allow myself to go down the path of sadness and sorrow, I am afraid I won't be able to find my way back.  However, today I'm giving myself permission to not only feel the sadness, but to feel the immense joy and love every time I think of my kids.

Mitchell, or as I like to call him Mitchy, or just Mitch ( if his friends are around),  is the oldest kid in our family ( by 7 mins ).   He can also be the most mature and can be the most quiet at times.  As anyone that knows him will tell you, he is very easy going .   He has an absolute passion for the game of  baseball and I love to watch him play  .He reminds me a lot of myself when I was a kid.  He is very sensitive and if you just look at him the wrong way, his eyes will fill up with tears.  However, his sensitivities help him make friends easily and he often puts others before himself. He also sends me emails on a regular basis just to make sure that I know he is thinking of me.    In the past six months, my relationship with Mitchy has definitely gotten stronger.  He often would crawl into bed with Mike and I after having bad dreams and would tell me that they often involved bad things happening to me.  As a Mom, I can't tell you how hard it is to hear your child tell you that he is afraid you're going to die.  And how am I supposed to respond when the future is so uncertain?  However, I am so proud of him to have the courage to talk to me about it.  He called me the other day and he told me how he almost cried in class because he was thinking of me.  I just can't wait to get home and give him a big reassuring hug.

Cameron, or as like to call him, Mr. C or Cam.  Cam may be 7 minutes younger than his brother, but, he was ready to rule the world coming out of the womb.  I would bet any amount of money that Cam would be described by most as the most "inquisitive" kid they have ever met.  Oftentimes, "Excuse Me" is followed by endless questions upon questions about almost anything.  Thank God for google, as I no longer have the answers.  He is also the most excitable and energetic of all our kids.  Usually he is the first up and is often my only partner for morning coffee at 5:30 and of course, he is the last one to shut his light off at night (unless we shut it off for him and remove the book that is plastered on his face ).  I never thought I'd say this, but it's been very quiet in the fishbowl and I miss the questions.  I have derived a lot of strength in the past six months from Cam.  He would often give me big reassuring hugs and would tell me that everything would be OK,and that chemo is better than dying.  But those were the only signs of any emotion he has shown.  However, I am thankful that in the last couple of months, with the help of people like his teacher Mr. Putnam, Cam has been able to express and share his feelings through ways such as poetry (see his poem in my previous post) and other things such as wearing a red ribbon for cancer awareness. One of the big memories I will forever have is the night of the Buzz party when Cam shaved his head with me. Though I can't believe I am saying this, I dream of my first morning at home with a cup of coffee in my hand and Cam by my side asking me endless questions.

 Sarah or "Bear" as we love to call her is next.  She is the oldest daughter by 1 minute.  She is also the most sensitive and often dramatic one of the bunch.   I like to describe her as a very highly sensitive little girl who is not afraid of showing her emotions.   She is not a morning person, so we all tend to be extra cautious those first precious moments in the morning, for they can really set the tone for the day!  On a more positive note she is definitely the most cuddly huggable one in our family.  For the past six months she has been attached to my hip. She knows me so well.  She tells me she knows when I am about to cry because she can see her reflection in my eyes.   She is first to grab a tissue and wipe my tears.  She writes me daily little notes of how much she loves me.  I am staring at a beautiful picture she made.  On one side is a happy mommy with yellow hair and big smile.   On the other side is a picture of mommy with a bald head with tears and a sad face.  She has always been so intuned with how I feel.  On the night of the buzz party, she never left my side.  She rubbed my back and held my hand most of the night.  And the morning after, she kept removing my bandanna and rubbing my head and telling me how beautiful I was.  Like Mitch, she often was in bed with us in the morning.  She also has had many bad dreams about mommy dying and how sad she was. But everyday I have been in the hospital her voice is always positive.  And she ends each conversation telling me she is sending me big hugs and kisses.  I can't wait to have a big Sarah Bear Hug when I get home.

Emily of Mon Ami as Mikey likes to call her is our youngest.  She is my "little me".  She looks just like I did at her age.   She is our "Flower Child".  She wakes up every morning, hair perfectly groomed with a big smile on her face.  She is always in a bubbly happy mood.  She dances through life and her motto is "keep those rainbows in your head".  She is so easy going and is so patient especially with her sister. She loves school and wearing dresses, playing soccer and dancing and butterflies.  She loves just about everything in life.  Her favorites are turtles and rainbows.  My walls in my fishbowl are covered with turtle and rainbow pictures.  In the past six months she has not showed much emotion.  She just gives me big hugs and kisses and tells me to keep those rainbows in my head. So sweet!   She doesn't like looking at my bald head too much.  She tells me I am beautiful and then covers my head up quickly.  Emily does have a passion for reading.  Often times I would go into her bedroom to turn off her light and tuck her in,  I find her nose in a book titled "My Mother Has Cancer".   I know deep down she is worried but she doesn't allow her head to come out of the clouds or rainbows. I love my little Mon Ami and can't wait to give her a big hug!

My kids have certainly been my strength during the last six months.  Telling them I have cancer was the hardest thing I have ever had to do.  The boys being 10 had a little more understanding of how scary that word is.  The first thing that came to their mind was, " is mommy gong to die?"  The girls on the other hand just understood that I was sick and going to lose my hair.  I don't think they truly had a grasp of what it was all about.  My children have seen my husband and I cry more than they should have to in a lifetime.  Although we have tried to remain strong for them, they know that mommy and daddy are scared.    Although it pains me so much to think of all that they have to endure at such a young age, I amazed at how resilient they are.  They have gone through the last months with so much courage and grace.  I am truly blessed and proud to be their Mom and I couldn't be more in love!
Love Always,
Mitch, Cam, Sarah, and Emily's Mom

Sunday, November 28, 2010

Oh George! Enough Already!!

Ok, I think I have a problem. I really need some separation from George.  Our relationship is getting out of hand.  For those of you who do not know, George is my IV.  He and I have had a real intimate relationship for the last week.  Like non-stop!  I mean enough already.  I  would really like to get out of bed and go to the bathroom without George coming in with me.  I feel completely helpless around my little fishbowl because I need to wheel George around with me everywhere I go.  And there doesn't seem to be an end in sight.  George has 4 more bags of potassium for me to run all night.  So generous of George, in the season of giving!  Any advice on letting him go easy?

Day +10 My Numbers Are Slowly Rising

Well it's Day +10 since the transplant.  I am happy to report that my White Blood  Count finally has taken a move in the right direction.  Wahoo!  My numbers are slowly increasing.  This is what we have been waiting for!  Finally!  Hopefully the numbers will increase at a rapid rate of the next several days.  I wish I could say my energy has increased.  But that is not the case.  I guess all this stem cell grafting takes a toll on the body.  I slept until 9 this morning!  The nurses couldn't believe it.  I usually up and showered before 8. 

My parents came in this morning.  We had a great visit.  It sounds like they are really enjoying all the Dreyer Chaos,   They shared some funny stories with me.  It was so great to see them.  After visiting me they were going to see My Aunt Mary and Uncle Jerry.

After they left I managed to stay awake long enough to eat lunch and then I took a long nap.  I still feel like I could sleep for hours.  I have never felt so exhausted in my life. I just realized it will be 14 days tomorrow that I have been in this bed in this fishbowl.  Crazy!  It probably is good I sleep most of the time or I would probably be climbing the walls by now.

Mike informed me that he brought up the 20 bins of Christmas decorations.  I think he is overwhelmed with it all.  I did let him  know that it usually takes me over a week to put it all up.  The kids are having fun going through all the decorations.  Check out the photo he sent to me:

Sarah and Emily dressing up Flower!
It looks like a brisk cold day outside.  I cannot wait to feel the cold on my face!  Hopefully this will be a healing week for me and I'll be looking at going home by next weekend.  Please keep your prayers and positive thoughts coming.  I dream of the day I can leave and give Mike and the kids a big hug!  Until then I am going to sleep, sleep , and sleep some more!


Saturday, November 27, 2010

Day +9- Finally Awake.... Well For A Little Bit!

Well hello! I have missed you all! I can't believe I missed a day of writing. I think this neutropenic state got the best of me. I have hit bottom low both with my white blood count and my energy. Yesterday I woke up completely wiped out. My blood pressure has been very low. My last reading was 72/46. Talk about being relaxed. Yikes! How low can it go?   I started to get some dizzy spells when trying to stand up so the doctors recommended that I receive a blood transfusion. This is very common with transplant patients but it did freak me out a bit. After I was informed of the minimal risks and signed the waiver they hooked up a bag of blood to George. During my blood transfusion my sister Karen and her husband David came to visit. We had a great visit. All was good until I started to feel very hot and very itchy on my back. In fact my back felt like it was on fire! So the nurse quickly unhooked me from the second bag of blood and gave my some Benedryl via IV. Apparently, I was having a reaction of some sort. So needless to say after the Benedry it was night night Jeanie for a good solid three hours.

Mike came to visit last night. We had a great time hanging out. Yesterday he took the kids to a tree farm to pick the perfect tree. And that is exactly what they did!  Here's a photo of it!

I have to be honest, when I received this photo from Mike my eyes filled with tears and I lost it.  Fortunately my nurse was in my room to comfort me.  The moment just got the best of  me.  I was so happy to see the beautiful smiles on their faces and so happy Mike continued our tradition,, but I was so sad I wasn't there with them .  Damn Cancer!  But they picked a beautiful tree and Sunday will be decorating day. 

Mike also brought me some beautiful gifts the kids' classes made me.  Sarah's second grade class put together a joke book for me.  The kids all wrote their own funny riddles and drawings accompanying them.  It was adorable and so funny.  I just can't believe how talented these kids are!
Looking at my joke book.   How do you like the mask and glove attire?

Emily's second grade class made a beautiful rainbow flag for me.  Made with colorful paper flowers. In the center of each flower is inspirational word like : strength, hope, rainbow, happy, smile.  It is beautiful and so bright and colorful! 
My rainbow flag made by Emily's class

Cam's class put together an incredible book of poetry for me.  It is beautiful .  I cannot believe the powerful words these fifth graders put together.  Poems about strength and survival. All coming from fifth graders!  I was speechless!  Cam's  poem is so powerful.  He hasn't expressed his sadness too much to us over the last few months.  I am so glad he has found a way to do that! Brings tears to my eyes every time I read it. 
Me looking at my Poetry Book

This is Cam's beautiful poem to me!

Cam's poem


I cannot even begin to tell you how much these little homemade gifts mean to me.  I am overwhelmed with emotions.  We do not give the youth population enough credit.  These kids are so talented and the words that they come up with.  They use such powerful words and it amazes me how strong these kids are dealing with the very scary subject of cancer and a sick parent.  I feel so blessed and thankful that my children attend such incredible schools and have such supportive wonderful teachers and that they are in classrooms filled with supportive classmates. 

Physically I feel like I have been through a war.  I feel beat up (not defeated) but beat up and weak.  The tiny mirror in my room shows me the physical affects I have had from the crummy chemo.  But aside from the fatigue, the baldness, the weight I've lost, and the yellowish tone to my face ,I'm determined more than ever.  Today my labs show that my white blood count hasn't begun to rebound.  I am hooked back up to George with bags of fluids that will run overnight.  My blood pressure is still low and my body is very dehydrated.  Hopefully tomorrow, my stem cells will start to graft and we will see my numbers start to climb.

Today I actually slept until 8:20!  I could believe it!  And Leslie and Beth were here by 8:40.  It was so great to see them.  They brought me a beautiful ornament that has an angel inside it that lights up.  We hung it on George to add a little Christmas spirit!

George with a little Christmas Spirit!

I also wanted to share with you a photo that my friend Leslie texted to me on Thanksgiving Morning.  Leslie is not only a wonderful friend but she is also a Kick Ass Kickboxing Instructor.  She held a special Turkey Day Morning Class and these incredible women in the photo dedicated their class to me!  They are holding up my bandanna from my Multiple Myeloma 5K Run!  How cool is that!

Well, I started this post around 1 this afternoon but fell sell asleep until 5:20.  Crazy how much I sleep!!  Thank you for your continued thoughts, prayers and wonderful messages.  Tomorrow is Day +10 and I am very hopeful that my numbers will start to climb.  I hope to move in the stationary bike by Tues or Wednesday and get these legs moving!  George will continue to feed  me necessary fluids during the night, and hopefully tomorrow we will find my blood pressure a more normal range.   I hope you all have a a wonderful night with your families.  I just got a text from Mike that it is snowing in New Hampshire!

Love Always,

Thursday, November 25, 2010

Day +7- Happy Thanksgiving

Family Photo Thanksgiving 2009

Happy Thanksgiving!  This photo was taken last year the day after Thanksgiving.  It was a beautiful balmy November day.  We took our annual road trip to Sterling, MA to pick  our Christmas Tree and chop it down.  It is a nice family tradition that we have been doing for the last 12 years.   Our children look forward to it every year.    My brother Rob joined us,    After a beautiful hike into the Christmas Tree Farm we found the perfect tree.  After Mike chopped it down and tied it to the roof of the car it was time to stop at our favorite little lunch place  on a big farm in Sterling.  After a great lunch, we took Flower out of the car and we let the kids and Flower run around in the beautiful Autumn sun.  Rob took this beautiful photo which was later used as our photo on our Christmas Card.  It was a beautiful and fun day!
Our Family Photo at Our Buzz Party Night

What a difference a year makes  There will be no Thanksgiving dinner with the family for me.  There will be no chopping down the Christmas Tree for me.  Instead I am lying in a hospital bed in my tiny fishbowl of a room, with a Hickman Line attached to my chest, a bald head,,16 pounds lighter,with an incurable cancer diagnosis.  How did all this happen?  Who would have ever known how much could change in one year?  Would I have appreciated that last Thanksgiving that much more had I known what the future held?  What would I have done differently?  I don't even know where to begin. 

It is hard to believe that it has been over  6 months since my Multiple Myeloma diagnosis.   It is so remarkably true, one phone call changes your life forever.  I will never forget that dreaded phone call and the fear I felt on that day.  How could life be perfectly fine one day, and the next come crumbling down?  I was 39 years old in the best shape of my life looking forward to the lazy hot summer days with the kids at the beach and lake, ready to take on another triathlon, and then I get the call that I have Multiple Myeloma, an incurable cancer. 

As I sit here in my hospital bed with an IV attached to my Hickman line in my chest and a hat on my bald head I am pouring with emotions on this Thanksgiving Day. Anyone who knows me knows how much I love the holidays.  I  love to host Thanksgiving at my house with all the traditional fixings from dinner to pies.  I also love love going out the next day and chopping down our Christmas Tree and then bringing it home.  The Christmas music stays on for the next month and I love to transform  my house to a Christmas Wonderland.  This is my absolute favorite time of year!  I love making crafts with the kids, filling out the Christmas Cards, baking almost everyday during the season and just being with the kids everyday as their anticipation rises as we get closer to the big day. 

But this year I find myself in a hospital bed recovering from a stem cell transplant. My energy level is low as my white blood count has not yet begun to increase.  I find myself sleeping most of the day away.  I am still attached to this IV as my blood pressure is scary low.  Being very susceptible to any germs right now, my visitors lately have been very few.  So it is very lonely in here and I have lots of time to think and reflect.  Yesterday I found myself very sad.  Sad that this has all happened.  Sad that I am going to miss out on a wonderful day with my family.  Sad that our lives have been forever changed since that phone call in June.

It has been a tough 6 months emotionally for me and my family and friends.  Physically the chemotherapy and drug regimen has taken a significant toll on my body.  Lately I feel like the chemo has literally sucked the life out of me.  Just walking up and down the hallway or to the bathroom exhausts me. 

At the same time I also feel a tremendous amount of peace.  I am so blessed to be in one of the finest Hospitals in the world under the care of the best doctors who intimately know my type of cancer.  The nurses have been so supportive to me in so many ways.  I am blessed to have been healthy enough to go through the actual transplant. So far my body is responding very well and here I am at day +7 with no major complications.  Hopefully this procedure will add years to my life and keep my cancer quiet for a little while. 

I also feel incredibly blessed and thankful for my loving and supportive family and friends.  I am overwhelmed by the out pour of love and support my family has received.  I can not imaging going through this journey without all of you.  I have developed some incredible new friendships with amazing people in our small town of Brookline.  I have been so touched by your love, generosity and support. Barbara and Ed words cannot express how grateful Mike and I are for you.  You took our children and cared for them and loved them as if they were your own.  You truly are special people and we are so grateful to have you in our life.  To my friends I have had for years,  Our bond is so strong and unbreakable.  You have been there for me and my family every step of the way.  You have helped me in so many countless ways to stay positive and strong. You were there for me on my darkest days, during my chemo days, the day I shaved my head.   You have showed me what true loving friendship is all about.  There is nothing I wouldn't do for all of you.  I love you with all my heart and soul.

My family has been amazing.  My parents were with us on the day we received that dreaded call. I know how difficult that was for your to hear that your baby has cancer.  Yet you stay so strong for my children.  I will never forget that. You have dropped everything and have stayed at our home helping out in every way to look after my children and love them and try to keep some sense of normalcy for them  I love you so much!   My mother-in-law Trish came with Mike and I to the doctors to receive the dreaded news.  Thank you so much for your love and support especially on that difficult day and for all the days you have spent with us at doctors visits,  You always have such a calming reassuring presence and you have helped me so much.  My sister and brother  and sister and brother-in-laws you have all been so incredibly supportive.  Karen your beautiful messages that you write me everyday inspire me to be stronger.  I love you all so much and I am truly blessed to have you all in my life.  To my extended family my aunts and uncles and cousins your love, support, phone calls, messages mean so much to me. I love you all so much and I am so fortunate to have you in my life.

This Thanksgiving I am truly thankful for all the blessings in my life.  I am amazed at how much I have learned and experienced in the last year.  Family, friends, wonderful neighbors that is the true meaning of Thanksgiving.  You have blessed my life in so many beautiful ways.  I wish you all a wonderful Thanksgiving full of beautiful memories!


Wednesday, November 24, 2010

Day +6 Zapped of all Energy!

Well I've made it to day +6!  Hard to believe it has been 6 days since my life saving stem cell transplant.  I have confirmation from my labs that my white blood count is bottoming out. Even without the lab reports I could tell you that.  My energy level is also close to zero.  Never have I have experienced such a level of complete exhaustion.  I did manage to drag myself out of bed, take a shower and go for a little walk.  But I think that will be the extent of my exercise today.  Other than exhaustion, my stomach issues seem to have resolved for the time being.

Last night while Mike was here the nurse brought us discharge information.  Although that is still quite a while away, it was great to even hear the word discharge.  It sounds like things will be pretty strict for me for about 3 months after I get home.  I should avoid public places, so I guess I wont be going to any movie theaters or shopping malls.  I can \have visitors, but they will need to wear masks and gloves.  And my kids are unfortunately not going to be able to have friends over the house for a while.  I will also have to follow a pretty strict diet.  And the big thing......Flower can no longer sleep in the bed with us.  This will probably be the biggest obstacle yet.  Her usual spot is right in the middle of Mike and I stretched out.  Mike has a couple of weeks to break her of this. Poor thing.  She already is missing her mom and confused.  Sarah has excitedly offered to share her bed, so we'll see if Flower takes her up on it. 

Mike also brought me in two of my favorite things....chapstick and yogurt covered pretzels.  Oh it sure is the little things in life!!  I am a happy girl!!  And my lips sure need the moisturizing!  Once again when Mike left last night, I couldn't hold back the tears.  I miss him and the kids so much and dream of the day I can leave this place and be home.  Every time I tell myself to be strong and not cry when he leaves.  But I can't . I can only imagine how long and sad the ride home must be for him.  He is such a strong man but I know how incredibly difficult this for him. 

Well that is all that is going on here.  I hope you all are having fun preparing for your wonderful Thanksgiving Feasts and family!  Let's all count our blessings this Thanksgiving! 

Love to you all-

Tuesday, November 23, 2010

Bottoming Out!

I have hit pretty much rock bottom as they put it.  Yup I am reporting from my fishbowl with zero immune system.  Pretty scary.  I am actually quite relieved I am in my bubble in this moment.  I got the results from my doctor this morning and they informed me that I am indeed in what is considered a neutropenic state.  And it seems along with my white blood count, my energy has gone down as well.  I did manage to take a little "power walk" outside my bubble this morning but I have spent most of the day either sleeping or just lying in bed daydreaming. 

I am waiting for Mike to come in and see me.  He should be here any moment.  I wasn't able to come yesterday, and it seems like a lifetime ago that I have seen him.  It gets pretty lonely in here.  Fortunately my nurses are fantastic and keep me smiling and laughing.  Thanks for all your wonderful messages and for all of you who are helping my family through your prayers, thoughts, emails, and wonderful meals that you are making.  I wish I had the energy to respond to all of your individually but you know who you are.  I am so blessed to have all of you in my life and I will be forever grateful to you all. 

Well I don't have too much more to excite you with and I don't have a whole lot of energy to type today.  Just know that I am feeling ok and my body is doing all that it is supposed to be doing. With each day my health and energy will improve. 


Monday, November 22, 2010

Day +4 Time Goes By.... So Slowly.....

Today marks day 7 of being in the hospital and more importantly Day +4 since my stem cell transplant.  Today I am definitely sleepy and my stomach is feeling pretty blah.  Apparently I haven't reached a neutronpenic state yet (zero white blood cells) but I am getting pretty low.  So as Mike blogged now more than ever I need to be careful of everything.  Kind of scary.  You spend your whole life building up an immune system and now it's to set to zero.  Before all this cancer business I was usually very healthy despite having 4 school aged children.  I hope to one day get that back.  But for now, I need to use all precautions.  Any little infection could set me back and keep me here so much longer than I want to be or even worse, well you know.  I don't even want to go there.  So I am trying not to be paranoid but it is challenging.  Talk about becoming a germa-phobe! 

As much as I am going stir crazy in this little fishbowl and I am missing all my freedoms and of course my 4 lovebugs, Mike and Flower, it is a little comforting knowing I am here.  My vitals are checked every couple hours and I have nurse just a call button away.  So right now the docs tell me my job is to report to them any changes I feel or notice.  I guess I don't have too many other distractions.  All I can say I am so grateful for technology.  It is so great getting all your messages and following your lives on Facebook.  Keep the updates coming.  You know, the joys of Thanksgiving, eating too much,  the family arguments.  I want to hear it all!  And who out there is going out for Black Friday?  Keep me amused! 

As far as me.  Not too much on my agenda.   It's looking like a good day to take a long nap.  Can you believe I am saying that?  Anyone who knows me knows how weird it sounds coming from me.  But I must say I am mastering the nap quite well.  Great way to pass the time. 

I heard from Mike it was a little chaotic morning at the Dreyer household.  The kids missed the bus for the first time, a bookcase came off the wall, and Emily almost went to school in just a shirt and tights! Small stuff right!   Mike is doing amazing and is probably really getting an insight into the fun but sometimes crazy life as a stay at home mom.  Of course he also is balancing work and having a sick wife in the hospital at the same time.  Nuts!  But he is holding it together.  Have I told you all how incredible he is?  I am truly blessed having him as my husband and this too shall pass.  At least he caught Emily going out the door before he got a call from the school to bring her in some pants!!

Hope you all are enjoying your day.  Time to order some broth for lunch!!


Sunday, November 21, 2010

Important Note From Mike - Please Read if you are Visiting

Hi All.

The following has just been updated.

I just wanted to put a short and very important note out there.

If you are considering visiting in the next 5 days..please read below:

Jean's white blood cell count is approaching zero and her immune system is extremely compromised.  To make it clear, she will have very little, if any, immunity to any of the normal everyday sicknesses and germs that we fight off and have built an immunity upon over a lifetime. 

If you have been sick recently, have been exposed to large groups of people that may have been sick, or even don't feel well, sorry to be blunt, but PLEASE DO NOT VISIT.  The rules are posted on the door to the ward.

In addition, I spoke to the nurses/doctors and they made the following additional precautions:
1.  No children
2.  No more than 2 people in the "Fishbowl" at a time
3.  No hugging or kissing

 This is a not just a matter of convenience, but could be a matter of life or death for Jeanie and the other 9 patients on the ward.

Finally, as a rule of thumb, please text or jeanie if you are coming in.  She will have the phone off if she is sleeping or not feeling well.


Day 3 Sleep, Sleep and More Sleep

Well I  made it to day 3!!  The time seems to pass quicker when all you do is sleep.  It is amazing how much sleeping I have been doing.  I literally stay awake long enough to swallow pills or to get hooked up to IV and then off to dreamland I go.  Yesterday Mike surprised me with a visit with the kids.  It was so amazing to see them.  They all look like they grew. It was so great to give them all big hugs even if everyone was behind masks and gloves.  I just wish that I had more energy for their visit.  I was literally fighting to stay awake 10 minutes into their visit.  After we said our tearful goodbyes, Mike stayed in the room for a few minutes.  Am I glad he did.  While talking to him I began to notice my tongue swelling and I was talking like someone had grabbed hold of my tongue.  Pretty freaky!  I know Mike was scared but I actually started to laugh.  I sounded ridiculous.  The nurse quickly came in with Benedryl she pushed through my line.  And within a few minutes my tongue shrunk and I was talking normal.  They think it was an allergic reaction to one of the nausea meds they gave me.

Well that was enough excitement for one day.  The rest of the day I literally spent sleeping.  Every couple hours the nurses would check my vitals.  My blood pressure at one point was so low, the nurse had to take it 3 more times to be sure she read it right.  I also battled a killer headache that is probably due to the fact that I am dehydrated.  So I have been on a constant IV for the last 10 hours.  I will finally get unhooked at 8 this morning.

Well I am trying to prepare myself for my shower this morning.  As much as it feels amazing to get out of this bed and take a hot shower, every day I do, I leave the shower with less hair. It really is hard to see the towel full of little pieces of hair.  I have a tiny mirror in my room and from the looks of it, I don't have much more hair on my head.

It is really surreal for me to think that I walked into this hospital almost a week ago on my own two feet and physically feeling great.  Today I barely have the energy to walk from my bed to my chair.  I know they need to knock you down before you get better, but I wonder how much more of this I need to bare.  Have I bottomed out yet, or is there still more to go?   When will I start to rebound?  And mentally how am I going to get through this?  This certainly will be my biggest mental challenge of my life.  I need to try to stay in the moment or else I think I will go crazy. 

Well that's all for now.  I hope you all enjoy your day. Get out and enjoy every moment and get some fresh air for me!


Saturday, November 20, 2010

Day 2 Of A Beautiful New Life

Well Good Morning!  I feel like I have been in complete hibernation.  I don't think I have slept this much my whole life.  After sleeping most of the day and night away yesterday, I woke up this morning to the nurse's rounds pretty good!  I have been hooked up continuously to an IV due to the fact that I have not been able to eat or drink much.  So I woke up this morning at around 4 and caught up with Grey's Anatomy and Private Practice on Hulu.  Awesome episodes!  Gotta love Hulu.  I am just psyched I can actually stay away finally to watch something. Finally I was detached from my IV.  So after my nurse carefully bandaged up my hickman line, I jumped out of bed (well that is a little exaggeration) to take a nice hot shower.  So after a nice hot shower I got my sweats on and actually left my room and took a stroll to the refrigerator to get an apple juice.  Exciting times my friends!!  I left the bed!!

I just got my labs back and all is good so far.  My WBC is continuing to drop and has not yet bottomed out.  So far no additional platelets are needed.  I will just need to be hooked up to George again to get more Potassium.  It looks like a cloudy day outside.  Did I mention I am lucky enough to have a window?.  What I wouldn't do to step outside and get fresh air.  But I guess that will need to wait a few weeks.  I cannot believe how good I feel today.  I had a great phone conversation with all my kids this morning.  I miss them so much.  I love looking at all their photos but I miss how sweet they smell and how good it feels to hug them.  Hopefully tomorrow they will be coming in to visit.  Today my dad and my brother are coming in.  I am looking forward to seeing them. 

I am waiting for the doctors to make their rounds.  All I know is that I feel rested and I actually ate a pancake this morning.  It is all good!!  So I am feeling so blessed to be feeling well this morning.  I know I have some tough days ahead but in this very moment I feel good, stronger and so blessed.  Today is Day 2 of a whole new beautiful life for me! 

Thank you for all your continuing thoughts and prayers!

Friday, November 19, 2010

A Little Glimps of Day Zero-My Stem Cell Transplant

Well I finally have a little energy this morning to fill you all in on the actual transplant.  Leading up to the actual transplant my wonderful nurse Diane gave me Benedryl and Zofran and lots of fluids via IV.  Apparently the preservative that the stem cells are in lets out a terrible smell that can actually make the patient pretty sick. So to try to prevent that she gave me all the good drugs.  Mike was here along with my mom and dad. We saw the cooler arrive at the nurses station.  The goods had arrived!

A member of the clergy came in and actually blessed my stem cells. It was a beautiful and emotional ceremony. My mom held my bag of stem cells with me as they were blessed.  To think of the long road it took to get to this point. The emotional distress, the days upon days of appointments and chemo and drugs.  The three long days collecting the stem cells.  And now here we were. Now I was ready to accept these stem cells and hope they restore all the damage the chemotherapy has caused to my bone marrow.  Once the blessing was done, the bag of stem cells was hooked up to my IV.  Right away we began to smell a very gross smell.  Kind of like a mixture of rotten eggs, and basil. Not very pleasant!  The nurse got me a mask to wear but the smell was so overwhelming, I actually began to taste it.  Immediately my body responded and the nurse was fetching for the bed pan.  I sat there getting sick over and over until nothing was left in me.  Kind of anti climatic after the beautiful ceremony we had just had moment before. 

After all that was over, my body begged to sleep.  Mike and my parents left and I slept the rest of the afternoon away.  The nurses kept giving me Zofran to try to ward off any nausea. But it keep creeping back.  Last night again I found myself getting sick over and over again.  It is a very lonely feeling getting so violently ill in a hospital without my husband there by my side.    I cleaned myself up and called Mike and cried.

I  cried myself to sleep. And stayed asleep until the 3AM Vital checks. Still feeling nauseous I slept until about 7 this morning.  I took a shower this morning and the little hair I have on my head is quickly disappearing and I have noticed there is no need to shave my legs (a little bonus I guess!)

I am looking forward to seeing Beth this morning and Mike.  Today is Day 1 of the rest of my life!!  I hope each day will get better and better and I will begin feeling stronger and stronger.  Thank you for all your love, support and prayers. Even in my darkest moments I truly believe I come out the other side to a more positive outlook because of all your love and support.

Me absolutely exhausted from all the Benedryl and Ativan
Mom and Dad here for the Big Moment!
All 5.75 Million Stemmies!!

During The Transplant!

Thursday, November 18, 2010

The Countdown-1 More Hour Until Stem Cell Rescue

We are about 1 hour before Stem Cell Rescue! Mike, myself and my IV Pole we call George just took a stroll about 30 feet in each direction of the short hallway outside my room.  Right now I am getting pumped with lots of fluids.  Next comes the good stuff. I will be getting some Benedryl and Zofran.  And then the stem cells will arrive.  We are going to have them blessed.  I feel at this point I can use all the blessings I can get.

Mikey will take some photos of the event.  For now, we are watching mindless tv.  Mikey is enjoying the last few moments that my room is not stinky.  Apparently the solution (DMSO) the stem cells are preserved in let out a gas that is similar to a rotten egg smell.  I guess I won't be getting too many visitors soon.

The Morning Of Day Zero

I just woke up from a very much needed sleep.  It is amazing how powerful this Melphalan is.  And I know I am only feeling the begining effects of it. Right now just feeling nausea and that wiped out feeling again.  I was just told by the nurse that I am very dehydrated so I guess I need to drink up.  I haven't had much of an appetite.  So time to drink up!

Yesterday I had a very busy day with visitors.  It was great to see everyone.  The morning started out with Mike and his mom who were here for most of the day.  Then I had a nice visit from a woman who works in the hospital who is a Reiki Master.  She performed  Reiki on my for about 20 minutes.  It was wonderful!!  I felt so peaceful and was able to escape from this little fishbowl for awhile.

Then came along Suzi, and then My Aunt Sue, my sister Karen and my cousin Suzanne.  It was so great to see all of them.  My aunt brought me a huge rainbow mylar balloon.  My room is full of  rainbows and bright colors it is great.  Every nurse that comes in wants to stay in here!  After a nice visit Mikey literally kicked them out so that I could rest.  He is so protective!  They all understood, and I was exhausted.

I was ready to take a nap when a nurse came in and offered to shave my head.  For the past couple of days I wake up to  hair all over my pillow.  When I take a shower lots of it falls out all on to my hands.  And when I was drying off my towel was covered in it.  It's really falling out!  So much for trying to be one patient that doesn't lose their hair.  Mine is falling out as fast just like the little remaining leaves on the trees outside.  As the hair follicles die, it causes your scalp to hurt.  It feels like pins and needles are being stuck in to a giant pin cushion, which is my head.  So this wonderful nurse came in with her buzzer and shaved it right down to the scalp!  Yup I'm pretty much bald!

Well after that fun was over, Mike brought in a special suprise guest, My funny Uncle John!  He always brings a big smile to my face.  As many of you know him, he is also a little follicle challenged.  So we laughed  how he could put on a johnny and walk up and down the hallway with a mask and gloves and he could definitely pass a patient!

After all the visitors left Mike and I were alone in the room.  I called the kids.  I miss them so much.  They sound incredible on the phone but I miss all of their hugs and kisses.  Mitch got on the the phone and confessed to me that while he was in class he thought of me and he got very sad and tried to hold back the tears.  That broke my heart.  This is so difficult on all of them.  I know I need to go through this but I still have my moments where I am so sad that they need to go through this.  How scary for the kids and Mike with having me in here for 3 weeks and knowing I am going to feel very sick before I start to get better.  Especially knowing the fact that I walked into this hospital feeling absolutely healthy and fine. 

I am now starting to really feel the fatigue everyone tells you about that chemo can cause.  Just taking a slow stroll up and down the hallway wipes me out.  My appetite is no longer there and the thought of food makes me a little sick.  Even with my hair as short as it is, I still woke up to it all over my pillow.  It is happening right before my eyes.  As they say, they need to bring you down all the way down before you can be brought back up.  So I guess I am heading in the down slope right now.  Before Mike left last night, I just lost it in his arms.  If felt good to be honest with him and just let all my emotions show, but at the same time I know how difficult this is for him.  After he left, I cried myself to sleep.

Well today is what they consider my Rebirth Day, Day Zero!!  I will be receiving my 5 million stem cells back.  The chemo has destroyed all my bone marrow and now its time for the stem cells to come back in and do their job. This will be happening at around noon time.  As Mikey puts it this is the time they reboot my system!  We'll be sure to take photos of the event.

Thank you for all your love and support.  Being stuck in this fishbowl is very difficult but your incredible messages keep me going. 
Love  to you all-