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!

Love,
Jeanie
xo