Viva Las Vegas

Sitting on a plane heading to Las Vegas this morning I wonder, can the couple next to me tell that I am a cancer patient?  I am wearing my new jeans, a cute top, my wedge black open toe shoes with freshly new light blue painted toes and my hair is finally growing out be a little like Halle Berry’s short look!  I have to admit I’m looking pretty cute today!  Who would have thought?  A few months ago, I was in the transplant unit closer to death than I ever want to be.  And now I’m heading to Vegas to meet Mike for the weekend!  Wow, life has a way of taking some unexpected twists and turns. I love the direction it is going for me right now!

I have a direct 5 hour flight to Vegas this morning.  Seeing how I don’t particularly enjoy flying I thought I would keep my mind busy by blogging a bit about how life has been going.  I feel like life is getting busy once again for me.  Mike has been traveling for business just about every week now.  So I have resumed life as a busy stay at home mom with 4 kids with endless amounts of energy.  I have enjoyed not having to make my bi-weekly trips to the hospital for my Velcade infusions.  This adds about 12 hours to my week!  The mornings are usually spent dashing out to the bus stop with the kids by 7:30 and then enjoying my morning runs with Flower.  I have been averaging about 4-5 miles about 4 times a week.  Flower is getting her sexy little figure back!  And once a week, I work out with my trainer Kim.  I love my sessions with her.  And lately she has been kicking my butt! 

Last weekend, Mike and I and the kids kicked off our spring with all participating in the Groton Road Race.  The weather was perfect, sunny and 60!  The kids all ran the 2K and did an amazing job!  They all finished strong and sprinted to the finish line.  Mike and I ran the 5K with some of our closest friends.  I am so proud of Mike.  He has never particularly enjoyed running, but he has recently added running to his daily routine.  He has really taken control of his health and fitness and has gotten himself in incredible shape!  He is looking pretty damn hot!  He ran his best 5K yet!  I am so proud of him and the kids.

At the start of the race, my friend Anne found me at the starting line.  Anne is in incredible shape.  She is a fast runner and a tri-athlete.  We decided that we would run together.  The first mile I was able keep up with her.  By the 2 ½ mile point I was struggling to keep up.  We were definitely running at a fast pace and the weather was warm.  But I knew I had to finish strong.  My four kids were at the finish line waiting for me.  At about the last ½ mile Anne (who had been ahead me) waited for me and told me we were going to finish together!  She is one of those beautiful gems in the world!  She knew exactly what I needed at that moment and I am so thankful.   We headed to the finish line together taking off 13 seconds off my time from last year! I finished 7^th for my age class!   Take that Myeloma!!!   The smiles on my kids’ faces is one of those images I will never forget.  I knew right there at that moment I showed them that mommy was strong and determined.  Tears filled my eyes as my kids gave me a huge group hug!  I did it!  I was back! 

  

For the last couple of months, I have been battling with moments of sadness and depression.   I love the fact that I feel stronger every day and have recovered from the transplant.   It is wonderful to be able to be in public without a mask, be able to take care of my kids and the house, exercise, clean( anyone who knows me knows me knows that I am a bit of a clean freak) , shop, cook and resume all the activities that a short while ago I could not do.  I know that I should just embrace all this and feel blessed and enjoy all that is “today”.  But and that is a huge “BUT” it is still a daily struggle not to worry about the future.  I feel like I am a very informed Myeloma patient.  I keep up with the all the disease the treatment.  Although the knowledge makes me feel empowered I also have a sense of realism.  I am very fortunate to be one of the lucky ones to have had an almost “Complete Response” to treatment.  I do know however that this is not a Remission.  This disease at this point does not have a cure.  I am hopeful that being on maintenance regimen will prolong the disease progression and ultimately add years to my life.  However, I do find myself caught up with moments with my kids or Mike where I end up back on that roller coaster ride worried that I won’t be around in 10 or so years.  I try to stop myself from going on that ride, I really do.  However, sometimes I end up on it. 

Running has certainly helped me in so many ways.  Not only am I feeling my body getting stronger, but my mind as well.  I feel my strongest when I am running, almost invincible.  My anxiety level has gone done so much and my spirits seem to soar on the days I run.  I told Mike that every day I can get out and run is a great day.  So, that is what I am going to do.  Running that race last Sunday and finishing strong is exactly what I needed to do (thanks Anne J) for me, Mike and the kids.

Reflecting on life, I have noticed some things that I need to work on.  I don’t  know if it is the “chemo brain” I read about, but I find myself not being the multi-tasker I once prided myself with.  If I don’t write it down, forget it.  I am guilty of not returning phone calls, messages, and being a little bit of a flake.  Please be patient with me.  I find myself getting completely consumed by life at times and overwhelmed at times.  The noise and activity level of just my kids in the house is sometimes all that can handle.  I find myself pleading with my kids to be more patient and quieter.  Sometimes the thought of packing them all in the car and heading to an evening baseball or dance practice completely gets me stressed.  I recently explained to Mike that life seems to be moving on a fast train full speed ahead and I am not quite caught up.  I think I am trying to be the best that I can be for my kids.  I was out of commission for so long, I am trying to make up for lost times.  I know they can put their laundry away, make their beds, and get breakfast for themselves.  But you know what it feels good to do for them again.  They were doing so well being more independent and helping out around the house when my parents were here and I was in the hospital.  And now I find myself overcompensating and doing almost everything for them once again.  Back to country club living!  Is it the guilt that my kids even have to even think of cancer at such a young age?  In a way I am trying to make life easier for them again, but at times making my own life a little crazier. 

For example, before I even began packing for my trip to Vegas do you want a little insight into what mentally I needed to do?  My incredible Mother-In-Law is staying at the house and taking care of the kids.  The girls will be heading to my sister-in-law’s house to spend the weekend with their cousins.  So yesterday I packed up all their bags, sleeping bags and lined them up in the dining room.  I Packed up all the kids’ backpacks for school today and prepared their lunches.  I organized the boy’s sport bags with all their soccer/baseball gear and wrote out the sports schedules for the weekend.  And get this, I pre-sorted the vitamins, fluoride, into individual plastic bags for each day.    ( I need professional help, right?) I also stayed up folding every piece of laundry in the house and putting it away.  I think finally at about 11 PM  I began to think about packing.  So do you think I’m nuts yet or what?  I have four very capable kids, yet I find myself doing just about everything for them.  Just about the only think I don’t do is wipe their butts!!  Crazy I know.  I guess I feel like things have been so tough lately on them.  They deserve to have life be a little easier for them.  They deserve to be kids and enjoy life without all the worries and complications that come along with it.

So I guess my new challenge is finding the balance.  I know I need to empower my kids and get them doing more for themselves so that someday they move out of the houseJ  I also need to make time to spend quality time with friends family without feeling the guilt that I am away from the kids.  My friends have been so vital during the past year.  I need to nurture those relationships and keep them strong.  At times I feel like I was a burden in some ways.  They have been so supportive and strong for me.  I feel like I have been out of the loop for quite some time with what has been going on their lives.  I need to stop trying to fill every moment of every day doing, doing,  and doing.  I think for a while now, I have tried to do as much as I can today, because I fear that tomorrow I may not be able to.  It is OK to leave the dirty laundry and go out and enjoy lunch with a friend or favorite TV show with my kids. I am trying, but again it is a daily challenge.  

There is about 2 hours left to my flight.  I still cannot believe I am heading away for the weekend with Mike. I think that he is still in shock that I haven’t canceled.  Honestly, I have never been more ready or excited to get away.    I hope that he is not too burnt out from his week in Vegas because I am ready to live it up!  I am looking forward to 48 hours of fun!  I’m taking off the “mommy/cancer hat” for the weekend!    Mike and I need so badly to have fun and not worry about anything for one weekend.  I told Mike to get ready for a crazy fun weekend.  You know what they say,” What happens in Vegas stays in Vegas!!”    Well time to catch up on some sleep that I won’t be getting this weekend! 

Love and Hugs,

Jeanie

Happy To Share Wonderful News!

I just got the phone call I have been praying for!  I just received confirmation that my M-Spike is too small to detect.  In other words, I have had a Complete Response from treatment!  The M-Spike or M-Protein measures the Monoclonal Proteins found in the blood of those with Multiple Myeloma and is used to measure the disease.  Prior to my Stem Cell Transplant in November my M-Spike was .39.  After my transplant my M-Spike still measured at .30.  The last 2 rounds of chemo must have attacked those stubborn cancer cells and brought my M-Spike down to Zero!!  Wahoo!  Complete Response Baby!!


What's next?  Well in the Myeloma world the word "Remission" is rarely used.  Currently the disease is not curable.  However patients who have very good to complete response from treatment who then go on to maintenance have a longer time between relapses and an overall longer survival rate.  So I have been officially put on maintenance.  I will begin taking 15 mg. of Revlimid daily and 20 mg. of Dexamethasone weekly for 3 weeks on and 1 week off for 12 months.  I will need to go in for monthly infusions of Zometa, a bone strengthening medicine used to treat high levels of calcium caused by cancer.  In addition, I will go in for monthly blood tests.  My next appointment at Dana Farber is scheduled on June 2, at which time, Dr. Munshi will perform a bone marrow biopsy.  


So this means I actually get to have a life again.  I will gain 12 hours a week since I wont be going in for chemo treatments.  Yeah!!!  And hopefully my energy will continue to surge.  I have been enjoying be able to run.  I have been averaging about 4 miles a day.  Yesterday I went out for a great 6 mile run with Suzi and Flower.  It felt great!  So everyday I feel good I am going to get out there and run.  It is amazing what it does for my state of mind.  I feel so strong, happy and healthy running. I think back to the immense pain I was in last summer and the complete fatigue I felt following the transplant.  It is incredible that I am now able to run, feel great and be pain free.  


The passing of Geraldine Ferraro from Multiple Myeloma has really hit close to home.  It is a reminder of how serious this disease is and the fact that currently there is no cure.  Many patients enjoy years between relapses but ultimately in most cases the cancer wins.  Geraldine did a lot to spread awareness to this disease and was very courageous in her candid interviews while undergoing treatment.  She lived almost 13 years after being diagnosed.  The day before she died, it has been reported that she thanked her oncologist for giving her those last 13 years. Incredible!  It is unfortunate that the Today Show did a segment on her this week and never even mentioned the words Multiple Myeloma. I am shocked and disappointed by this.  Multiple Myeloma is the second most common cancer of the blood.  About 60,000 people have this disease and there are an estimated 20,000 new cases each year in the United States and 10,000 patients will die.  Although the average peak age is 65 for disease onset, the disease is becoming more an more prevalent in people under 40.  When I was diagnosed I had never even heard of this disease.  Most people thought I meant Melanoma when I speak of it.   Yet so many families are being affected by this disease everyday.   


I was watching a segment on Geraldine Ferraro this week and Mike and Mitch (my 10 1/2 year old son) was in the room with me.  I explained to Mitch who she was and the fact that she also was diagnosed with Multiple Myeloma and that she had passed away.  Mitch looked right and Mike and I and said, "You mean to tell me that people can die of Multiple Myeloma?"  Mike and I couldn't believe what we had just heard.  We both had to excuse ourselves from the room and went upstairs and held each other and cried.   Was it really possible that Mitch did not understand the severity of this disease?  Mike and I have always been honest and upfront with our four children about my diagnosis. We have told them that there is no cure.  However we have always been positive and have reassured them that there are many advancements in treatment that have prolonged the lives of those affected and that many people are living with cancer for many years.  Yet, right at that moment Mitch finally understand the seriousness of the disease.  Our hearts broke for him. We felt like at that moment he was robbed from his childhood.  Why should a 10 year old child even have to deal with this?   Shouldn't he just be able to go to school and play hours of baseball without knowing that his mom has an incurable cancer and that she may someday die of this disease?  Once again we were reminded of how much Cancer Sucks!


I called Mitch upstairs and did my best to explain to him that although many people have died of this disease, many more are living with it.  I told him that today mom is feeling strong, running 5 miles and enjoying every moment .  I told him that Ms. Ferraro's death should motivate us even more to do all that we can to learn about this disease and to educate others.  I told him that this has motivated me to run as many miles as I can to help raise money so that some day hopefully in my lifetime there will be a cure. 


Well today I am going to celebrate the absence of my M-Spike!!  I am going to hit the pavement for a nice run and think about the challenges of this past year and rejoice in the fact that I am one of the very lucky ones who have responded so well to treatment.  Today is a great day and I am going to allow myself to enjoy every moment without worrying about what tomorrow may bring.    Although based on the weather report looks like Mother Nature is going to give us another 6-10 inches of snow.  Ugh!!


Thank you all for your continuing love, support and prayers.  It's working!!  


Love and Hugs,
Jeanie


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Me Really, The Quiet Geek In High School?

Good Morning!  It was so wonderful to wake up to no snow this morning!  The bulbs popping up in my garden now may have a chance.  It was one of those hectic mornings getting everyone off to school.  I let the kids stay up to watch Idol with me, and no one could get up this morning.  Needless to say, it was another morning of driving them to school in my pjs with coffee in hand!

When I get back home I logged on to Facebook with yet another cup of coffee and was overwhelmed by what I came saw.  A high school friend, Kristin Larson Dame whom I have not seen since graduation in 1988 has organized a Relay for Life Team for me.  It will be held in Marshfield, MA on June 24, 2011.  I am just amazed by how incredibly wonderful people are.  You see, I was not what you would consider "popular" in high school.  I was extremely shy.  I didn't have a lot of confidence and kept to myself.  I guess better put, I was a geek.  I was an honor student, didn't party, and yes even played flute in the band!  In fact, I didn't do a whole lot. I had small circle of friends.  I look back at those years and think, why didn't I just loosen up a bit and enjoy life? Over 23 years has gone by, and I have never even gone to a reunion.  A part of me, figured why would I? It is not like I made a lasting impression in high school.  In fact, most people didn't even know me.  Yet over the last couple of years, I have reconnected with many from my old high school days.  Even though I may not have "hung out" with many of these people in high school it was so great to see old faces and names again. And through our daily updates on Facebook, many of us now are connected in a way we never were.  It's funny we are more similar now in many ways.  We are all trying to balance life, kids, family, friends.  Many of us share a passion for running and biking.  And in the past 9 months I have received so many loving and supportive messages since I was diagnosed with cancer.  I am overwhelmed with the outpour of support I continue to receive.

The day I was diagnosed with cancer was a day that has changed my life forever.   I have had many dark, scary moments, and struggle daily to stay positive and hopeful.  However cancer has brought me so many little gifts in life.  I continue to see the true beauty in kindness in people.  People who live their lives paying it forward.  People who ask nothing in return and just want to help.  You all continue to fill me with love, hope and happiness.  You have taught me so much on what is really important in life and how I want to teach my children to live their lives.  Every day it comes clearer and clearer to me that things don't happen just by chance.  The connections and experiences we have in life prepare us for the unknown days ahead.  Moments and opportunities that in the past I may have missed, I now pay close attention to.   Now I really try to stay present in those moments.

If you are interested in joining our team or following us on Facebook the group is called DHS '88 Relay For Life.  Our team is Cancer Sucks But Jeanie Rocks!!  Love it!!

Hope you all enjoy the day.  I am going to go for a run this morning and then I am meeting my brother for lunch!

Love,
Jeanie