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!

Love,
Jeanie

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,
Jeanie
xo

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!

Love
Jeanie
xo

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-
Jeanie

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. 

Love
Jeanie

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!!

Jeanie
xo

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.


Thanks.
Mike

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!

xo
Jeanie

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!
Love
Jeanie

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-
Jeanie

























Wednesday, November 17, 2010

What A Difference A Day Makes

Good Morning All-
Well I finally got some much needed sleep.  After a great visit with my cousin Courtney who works at the hospital, I dozed off for a good 6 solid hours!  Unfortunately when I woke up I felt like I had been run over by a freight train.  Wow, that Melphalan is some powerful stuff!!  I guess this means it is doing its job.  So far I am feeling completely wiped from any energy I might have and of course I have somee nausea.  The nurses are great here and keep giving me nausea meds but I haven't felt too much relief yet.  I woke up and found a lot of hair on my pillow. So I guess I'll be saying goodbye to what little hair I have on my head.  Yesterday my scalp felt like I had a pin cushion and pins and needles were being poked into it.  After my shower whenever I touched my head the hair just fell off like a shedding dog.  I am glad I buzzed it when I did I think it would have been that much more difficult to watch big clumps fall out.  Still it is hard to believe that in a few days I will be completely bald.  Of course, no one is really making much of a fashion statement here in the "fish bowls". 

Well, I am going to try to get a little rest now. Today is day 2 of treatment.  Thanks for all your love and support.

Love
Jeanie

Tuesday, November 16, 2010

Video from the Fishbowl

As mentioned, Jeanie has successfully "staged" the Fishbowl.  See the video below:

video

Some Views From My Fishbowl!

Rght before receiving the Melphalan
Doesn't my room look cozy!  Love my blanket!
A sign my kids made me after I received  after I got home from my stem cell collection

Me swimming in my fishbowl!

Check out the sliding glass doors!

The Brown Chocolate  Bag.... The Melphalan!





Broadcasting Live From the Fishbowl

Guest Commentary


video

So, here we are in the "Fishbowl", another name for Jeanie's hotel room for the next 3 weeks.  It's been about 24 hours after showing up at Brigham and Women's and Jean is ready to begin the next step in her Autologous Stem Cell Transplant ( ASTC or, what Dr. Hakimian refers to as Stem Cell Rescue! ).  The Hickman Line is in, all the levels and pre-chemo checks are complete, and the Melphalan ( AKA "The Brown Bag" - see below ) has begun to flow.



Jeanie's spirits are high and are helped by being surrounded by wonderful things to remind her of all the support, prayers, and thoughts out there to support her through this. Despite the drawbacks of size and isolation that define the "Fishbowl", she has already made it as close to home as it could be.


The next 24 hours could bring some changes, but I know Jeanie's incredible strength and courage will bring her through this.

IMike

Day 1-4:00 AM and Wide Awake

It is 4AM and I'm wide awake so I thought I would fill you all in on what has happened since arrival yesterday afternoon.  First off let me tell you about my "beautiful suite".  Apparently it is one of 3 suites on the floor because I have my own private shower.  My room is at the most a 10x8 space.  But I do have a window.  Granted, the view is more hospital rooms. But I  have a window nonetheless.  A glass sliding door separates me from the nurses station.  So I do feel like I am in a giant bubble or aquarium.  But I have a privacy curtain I can close with a remote from my bed.  Pretty cool, huh?  I know you are all envious!

I don't think I got more than 2 hours sleep tonight.  It seemed like every hour either a nurse or doctor was in to poke me.  At around 12 I was informed that my labs showed that I had a low potassium level, so they hooked me up to an IV and I have been given 4 bags of potassium.  But now instead of an IV in my arm I have my Hickman Line.  So the IV is attached to a line on my chest. On a positive note I can use my hands and move my arms!

Yesterday was a long day.  We checked in at around 1:00 PM.  After doing some necessary paperwork such as a Health Proxy (which I don't plan on needing) I went in for some lab work.  I found out my WBC went up to 220,000!  Pretty cool considering  it was 55,000 last Wednesday.  After that it was down to the Cardio Unit to get my line put in.  The doctors gave me a wonderful cocktail and I slept through the procedure.  When I woke up I had IV tubes coming out of my chest.  Pretty wild.  It was a little painful during the night but that seems to be getting better. 

My nurse Robyn is great.  She only has one other patient here so she gives me a lot of attention.  We were just chatting about running and the fact that I signed up to do a Sprint Triathlon in May.  I think I might of convinced her to do as well!  All the fun begins today.  I will be learning all about oral health care and living in a sterile environment.  Gloves and masks will be mandatory when entering my room.  I will be receiving anti-nausea meds at around 11 and then I will be receiving my first dose of Melphalan (big time chemo) at around 12. From what I hear this is very pretty powerful stuff with some not so pleasant side effects.

 Well it's time to get poked again.   Oh I wish I could have a nice Pumpkin Spice Latte right now!  I wonder what's on the hospital menu for breakfast? 

Wish me luck for today.  I'll let you know how it goes!

Love,
Jeanie

Monday, November 15, 2010

And So It Begins

It is hard to believe the day I have long awaited and dreaded is finally here.  Today I get admitted to Brigham and Woman's Hospital in Boston where I will a resident/patient for at least the next weeks.  It is crazy how fast time has passed since my diagnosis in June.  For a while it seemed as though days just passed and I was completely checked out of life.  When I found out I had cancer  I  felt like I had died inside.  I felt like my life was taken away from me without warning.  I was petrified, sad, lonely, and angry.  It also had seemed like the cancer progressed quite quickly.  My bone pain was so severe that no pain meds seemed to take it away.  I was weak, in chronic pain and unable to sleep.  Caring for my family was not even an option.  The first two months loved ones stepped in and cared for my children, cooked for them, did the grocery shopping.  All this happened while I laid uncomfortably and scared in my chair.  To put it bluntly, the summer sucked!  Well, for me anyways, fortunately my kids seemed to have a pretty good vacation and were kept busy.  I will be forever grateful for all of you who made that possible.

When September rolled around things started to improve.  The chemo was working!  I was off all pain meds and had no pain!  It was amazing.  I could pick my kids up and give them big hugs!  Heck I ran my own 5K for Multiple Myeloma!  Which happened to be one of the most amazing days of my life.  I was happy again!  Loving life and enjoying every moment.  Cancer was not defining me.  Yes it is a big piece of my life, but it is not going to define me or ruin my life.  I have enjoyed so much the last couple months of being the active mom and wife I love to be.  I have loved the homework, being a taxi, cheering on my kids in the games, even the nagging that is inevitable.  I am so grateful for all your prayers, support and positive energy.  It is because of all you that I believe I have responded so well to treatment and feel so strong today!

The last couple of weeks I have spent preparing for this very day.  I took the plunge and had my hair buzzed.  It was so hard, but I was surrounded by friends and family and I will never forget that night.  I can't say that I am actually getting used to the buzz look.  However, I can get ready so much quicker!   It is rather amusing, I have not lost a single strand of my hair to the Cytoxin.  I'll probably be the one patient who doesn't lose their hair!

Yesterday was a very tough day.  Our wonderful friends Barbara and Ed Koonz are taking care of the kids.  They will be staying with them until Thursday.  I stayed strong when we dropped them off and then completely lost it in the car.  It was definitely one of the most difficult moments of my life.  I am scared for them .  I know they will be in incredible hands, but I am sad they need to go through this.  The next time they see me it will be in a scary hospital and we will all be having to wear gloves and masks.  I pray they all stay healthy so they can visit me this weekend.   We talked to them this morning.  They all sound nervous.  Please keep them in your prayers. They are all so precious and have stayed strong for me, but as a mom I can hear in their voices how scared they really are.

Last night we went out to dinner with Jay and Beth.  We had a great time and after an emotional goodbye we went in the car only to find a message that registration had opened up for the Sudbury Spring Triathlon in May. Immediately Beth called me.  It was a sign!  So she insisted that Mike and I sign up.  So that is exactly what we did last night.  Hopefully my training can begin by Feb.  Of course Beth thinks it will begin Dec. 5th!

Well I am all packed up.  Quickest pack job ever. I small bag for 3 weeks.  I can't bring a whole lot.  I also have a bag filled with beautiful pictures all the kids and friends have made me and my banner from the 5K "Cancer Sucks".  And you know me I love photos.  So I have lots of frames filled with photos that make me smile and photo books.  I have my toys, PC, iPhone, headphones, and  suduko puzzles.  I am also am bringing a beautiful blanket friends of mine had made that has a photo of my family on it.  It was our Christmas photo from last year taken the day after Thanksgiving when we chopped down our Christmas Tree.  Also my friend Brenda brought by a beautiful colorful blanket she made me and the most wonderful Squg pillow. It is a pillow filled with memory foam, beautifully decorated.  Squg stands for a squeeze and hug.  And when you hug it is feels just like the big hugs I get from my kids every day. Brenda also gave ones to all my kids and they have them with them.  What a beautiful gift!

Well, it is like fate. My favorite song that has been my song through out this journey just came on...Glitter in the Air by Pink.  I love that song!  I guess it is time to take my shower and head to Boston.  We are expected to be in the hospital at 1pm.  I'll keep you all posted.  Love to you!

Jeanie
xoxox

Thursday, November 11, 2010

Final Collection!

Final Collection!

Well we finished up my final collection on Wednesday at around 2:00.  Finally I was FREE!!!  Literally to move my arms around after 3 consecutive days and get out of that bed.  I was overwhelmed at how emotional I got when I said good bye to the nurses.  They had been incredible to me.  My Transplant Nurse Muriel in the photo above handing me my final collection bag has been so supportive for the last 4 months.  I won't see Muriel until after my transplant.  As I was giving her a hug goodbye my emotions got the best of me.  She assured me that I will come through this with flying colors!!  Next it was time to say good-bye to all the people I met in the collection room that will be receiving their transplants next with along with me.  Our eyes met and without words we understood each other exactly.  We are all fearful of what next week will bring.  But somehow knowing that we are all going through it together left us all with a little peace of mind. 

Fortunately there was not much traffic and we made it home just in time to meet the kids at the bus stop.  Their faces were priceless.  They all dropped their backpacks and ran to me.  It was a beautiful moment.  I had missed them all so much!  When we walked to the driveway, Flower just about knocked me over she was so excited to me!  What a welcome!  When I walked in the door there was a big homemade welcome home sign made by the kids with a big rainbow on it.  Oh it felt so great to be home, my favorite place to be in the world. 

Today, was a great day.  The kids had no school because of Veteran's Day so we spent a nice morning lounging in our pj's .  After spending a great morning together the kids all went off and had some fun with friends.  I spent a good part of the afternoon getting things organized for the kids for next week.  Tonight I received a call from Muriel my Transplant Nurse.  She called to let me know that I collected over 10.12 million stem cells.  I am psyched!! I did it!  I got over my goal!  So next week I will be receiving 5.5 million of those beautiful stemmies and the remainder will be kept in storage.  Hopefully I won't need them, but if I do they will be waiting for me.

Tomorrow my beautiful friend Beth is having a lunch for me with many of my close friends.  I am so looking forward to spending the afternoon with them.   It is hard to believe that in just a few short days I will be heading down to Boston and checking in to the hospital.  I am going to try to fully enjoy and cherish these next 3 days and try not to let my anxiety get the best of me.  Thank you all for your love and support.  I wish you all a beautiful peaceful night!

Love,
Jeanie

Wednesday, November 10, 2010

Day 3 Still Here!

Good Morning!  Well we received the call at 11 pm last night that we were 50,000 stem cells short of the 8 million needed!  So here we are again!  On the bright side I get to have another one of the yummy blueberry muffins they have here for breakfast.  I also get to spend the day watching my favorite shows on Hulu and chatting with my transplant buddies I will be spending lots of time with next week.

Mike and I are exhausted.  It is so tough sitting in a room with no windows for 8-9 hours a day.  At least I have a bed to lie in.  Mike has to sit in an uncomfortable chair all day.  My veins have been beat up.  Yesterday I had an incidence where my hand blew up and was actually turning blue.  Apparently it was the anti-coagualants.  It freaked me out.  They had to pull out my line and start new one in a new vein.  Although I have wonderful veins, all the nurses have told me, they have taken a beating.  I am one of the only patients in here without my hickman line put in.  I receive that on Monday.  I am wishing I already had it in put on.  Oh well!  My advice to anyone getting a stem cell transplant, get your line put in prior to the collection to save your veins and the pain of all the poking!

We are missing the kids and Flower so much.  The kids seem to be doing great; however, Mimi told us today that Flower finally ate after 3 days.  Poor baby misses her mommy and daddy.  We are hoping to go home tonight.  I have 4 days until I head to the hospital and I want to be home.  I have things to do, and hugs and kisses to give to my kids before I am in isolation for 3 weeks.

Well gotta go for now as I am ready to get hooked up again. 

Tuesday, November 9, 2010

Day 2 of Stem Cell Collection

Day 2 Begins!!!  Well we arrived here at the Jimmy Fund Collection Center at 7AM.  I was just told by the nurse that we actually collected 5.75 million stem cells.  That is enough for 2 stem cell transplants!  The goal is to collect 10 million.  My white blood count is still pretty low, about 50.  Usually for Multiple Myeloma Patients the count is expected to be about 200.  So my collection process is a little slower.  So they boosted me again with another Neupogen Shot!  So hopefully we will be in full collection mode today!  And hopefully we will meet our goal of 10 million today.

Today almost every bed is full.  I have enjoyed talking with everyone around me hearing their stories.  The young man next to me is only 24 and diagnosed with Multiple Myeloma.  So sad, he is so young.  This disease has robbed him of most of his pelvis bone and hips and he is on crutches and can not walk.  He will be one of my transplant buddies next week.  I also have met a man with Non-Hodgkins Lymphoma and he has a very positive attitude as well.  He will be another one of my buddies next week. 

I am full of emotions today.  I finally feel like I am not the only one with this disease.  I am surrounded by people who are going through the same scary process with me.  Most of them already have their Hickman Lines put in.  We all here with the same fears and anxieties.  Next week at this time I will be receiving some very high doses of chemo and I will be settling in for my 3 week stay at the Brigham and Woman's Hospital.  I am missing my kids and dog so much and I've only been away for 24 hours.  Three weeks is going to feel like an eternity.  But I know that I need to go through this process to hopefully get my life back.  I know that I am in wonderful hands here and I feel so blessed to be at one of the world's best Cancer Institute.

We will keep you posted.  I will be hooked up to the big collection machine in about 10 minutes.  So I need to enjoy my last few minutes of moving my arms around.  Mike will be taking over my blog for the rest of  the day.

Thanks for all your support, messages and prayers. 

Love,
Jeanie xo

Monday, November 8, 2010

Day 1 of Stem Cell Collection...Done!


Day 1 of stem collection has been completed.  Yup 10 hours in a bed in one position and that is what we collected.  It is like liquid gold.  Tomorrow morning we will get the complete count of what was collected.  In order to have a Autologous Stem Cell Transplant it is required that you have at least 2 million stem cells collected.  Our goal is to collect enough for at least 2 transplants.  So we are keeping our fingers crossed.  I received another dose of the Neupogen Shots tonight so hopefully overnight tonight I will be popping out lots of stemmies.


The whole process was pretty non-eventful.  Other than the fact that I had to lay down in one position for the whole day and keep my arms straight and not moving (difficult for me), it really wasn't that big of a deal.  I did have occasional numbness in my hands and feet do to the fact that my blood was depleting calcium from me during the collection.  So the nurse just kept increasing my calcium.   I cannot believe how exhausted I am from doing nothing all day.  I mean I know my body is going crazy producing all these stemmies, but really I am wiped!  Mike and I checked into a hotel close to the hospital.  We went out for dinner and I literally was falling asleep at the table.  Tomorrow is another full day.  We head out to the hospital at 6:45.  We are hoping to hear good results from today's collection.

Well good night everyone.  I am going to get some much needed sleep.

Love -

Jeanie



More on the stem cell party

It's Suzi here reporting from Jeanie's stem cell collection party!  Once again, I'm in awe of Jeanie.  She looks amazing, even with her arm taped to a pillow and tubes in both arms, she's beautiful. And, her spirits are great.  I was wondering what to expect when I arrived this morning.  I knew what to expect at SNHMC for chemo treatments - a fun morning of conversation and awesome nurses.  Such a personal experience there.  When I arrived here at Dana Farber for day 1 of Jeanie's stem cell collection, Mike greeted me in the waiting room and walked me through the patient area to where Jeanie's bed is, and I saw her hooked up to the giant machine that Mike fondly nicknamed the giant thinga-majig.  What an amazing piece of equipment!  It looks like a color-coded road map.  Watching it take the blood and separate out the stem cells is unbelievable! Every now and then, one of the machines starts beeping, and in seconds a nurse appears to check things out. The nurses here are so knowledgeable and reassuring, and I know that Jeanie is in superb hands.  And with all of this happening, she has a smile on her face.  That's the best medicine for all of us!

Hugs!
Suzi

Karen's observation

  I am sitting here with Jeanie as the collection of stem cells are under way!  Of course to no one's surprise, Jeanie is in great spirits and looks amazing!!  My journey here was no easy task.  My sister-in-law Donna picked me up at 9:30 to go to Jeanie.  Chronic fear of highways has left me frustrated not being able to be with her as much as I would like to.  We ended up getting lost 5 minutes away from our destination which ended up with lots of laughs on the way.  When we arrived my heart was beating out of chest, not knowing what to expect, seeing I don't make it a habit of watching stem cells being collected every day!  I was told to wait to wait outside until someone came and got me.  Thank God the wait was about 30 seconds.  When I approached the room I took lots of deep breaths.  I found Jeanie in positive spirits and as always still looking amazing.  Jean was accompanied by hubby Mike and life long friend Suzie. So far everything is looking good, more to be revieled shortly.  Keep thinking positive thoughrs for Jeanie because it is working.

                                            Love Jeanie's sister,
                                                Karen

Let the Collection Begin!

More from Mike:


Good news..the numbers look good and the collection has begun.  Based on the information provided it looks like it will take 2 days to collect the needed stem cells to reach the magic number of 10 million stem cells for the autologous transplant next week.  The "Super-Duper-Stem-Cell-Collection-Thing-A-Majig" was fired up by our nurse Marty ( shortly after she presented me with the history of the Cobe Spectra Auto PBSC aphersis machine after she heard my not so technical reference to the machine in my earlier post ).  It looks like stem cells will be collected for the next 6 hours and then we will have to return tomorrow to collect the balance.

And now for the photos as promised:


And for those wondering how Jean will keep her arms still for the next 6 hours:

video

Ready, Set..Collect

Guest Commentary by Mike
Much to the chagrin of our dog Flower, the day began much earlier than expected.  With the alarm set to 4:30A, Jeanie and I do what every person does that's worried about sleeping through the alarm does..we woke up early..about an hour earlier than the alarm.  Flower continued to stare at us as if saying "Really..do I have to get up too?" in between massive dog yoga stretches as we grabbed our stuff and headed out the door to Boston for the day.  Fortunately, the "circus" that occurs every school morning will be directed by my Mom ( aka "Mimi" to those under her command ) and we have a great support network of friends in the afternoon managing the activity-filled Monday afternoon. 

We arrived to the blood donor center in the Jimmy Fund building around 6:45 and we were promptly delivered to our "space for the day" cramped in between others here for much the same reason, stem cell collection for later use.  Jeanie just had her blood draws and we are waiting for the go-ahead signal ( acceptable level stem cell counts ) to move forward with collection.  Keep your fingers crossed that the next blog will include a picture of Jeanie hooked up to the "Super-Duper-Stem-Cell-Collection-Thing-A-Majig".  In the meantime..take a look at the photo above, smile, and be thankful that we aren't blogging live from a proctologist's office.