Friday, April 3, 2015

Still Here

Guess what?? I'm still here. My only excuse I guess for not blogging in quite a while is that I have been too busy living. Life has been pretty busy and full since I last posted in 2013.  Hard to believe we are now in April 2015.  After a very cold and snowy long winter, it feels like Spring is slowly beginning to show us some signs that sunny warm days are ahead.  The piles of snow are slowly melting, and little areas of brown grass are peaking out.  The birds are beginning to visit in the yard again, and the voices and laughter of the neighborhood kids are starting to fill the air. 

The Dreyer household is busier than ever.  With my 2 boys now freshmen in high school and my 2 girls in 6th grade I feel like I live in my Yukon dropping them off here there and everywhere from the time they get out of school until 9 pm most nights.  They have had a great year in school.  Sarah and Emily are still loving competing on their gymnastics team.  When not at the gym, Emily is spending lots of time in a local art studio creating beautiful pieces to fill our home.  Sarah is still loving playing piano.  I just love it when she relaxes and opens that beautiful voice as well.  It is truly heaven to me listening to her.  Cam made the Varsity Wrestling Team and although he is small he worked just as hard as anyone on that team.  It was such a great learning experience for him, and it has been wonderful watching him grow as an athlete.  He has an absolute love for the sport.  And I am learning to appreciate it more and actually uncover my eyes more during the matches.  Now that wrestling has ended he is busy working out with 2 wresting clubs and also has begun his second season on the High School Crew Team.  Looking forward to warm spring days watching them on the river. He also has become an avid Downhill Mountain Biker. Another way he likes to give me anxiety:)  Mitch has been doing what he loves, Baseball.  Winter didn't slow him down.  He is on an AAU Team and has practiced all winter.  After a week of tryouts, he is now officially on the High School JV Baseball team and he'll be playing on a Babe Ruth League as well.  So, playing on 3 baseball teams,  I see lots of time watching baseball this spring and summer as soon as the snow melts and the fields begin to dry out. 

As of January, I went back to work after almost 15 years at home.  I am fortunate to be working from my home office, which I share with husband.  I am loving it.  Most days, our puppies are in the office as well with us hanging out on their favorite chairs.  It is pretty perfect.  It has been a bit of an adjustment, but I am getting used to the schedule.  My morning starts off pretty early, as I try to hit the gym by 6 am and get home before the kids go off to school.  And because as most people who know me, I am pretty OCD.  Which means laundry, housework, etc. gets done before 7:30 , so that I can stay focused working.  I stop working the moment the kids start coming home and switch on the mommy hat and then it's usually homework, dinner, go, go, go... collapse into bed, and start all over again. 

So life has been pretty full and fast paced.  Mike and I have also been busy training for the Spartan Season coming up.  We are having a team sponsored by the Multiple Myeloma Research Foundation at the Citi Field Spartan Sprint Obstacle Race on  May 9.  After that we are signed up for a few more short distance Spartans and then the BEAST!  So thankful for Brian Benoit at Pure Life Fitness who pushes me to do more burpees, more tire flips, more of everything that I don't want to do!  Love that guy!

Yesterday I had the opportunity to speak in Concord, NH in front of the new Hampshire House of Representative Commerce and Consumer Affairs Committee in support of the SB 137.   If passed, this bill would enable patients to have easier access to oral anti-cancer therapies.  37 other states have already passed The Oral Anti-Cancer Therapy Parity.  The Senate has supported SB 137 unanimously.  Since 2008  8 out of 11 chemotherapy drugs are in pill form.  These pills are targeted therapies with less side effects on patients.  They offer tremendous hope to many patients. 

As a Multiple Myeloma Patient, I have been on Revlimid, an oral chemo targeted pill since I was diagnosed back in 2010.  Multiple Myeloma never really goes into a true remission. The goal is to keep it dormant and achieve a "complete response" for as long as possible.  Revlimid when taken with Dexamethasone has significantly prolonged progression-free survival among patients with Multiple Myeloma.  Patients are now living longer.  The median survival rate is now 5-7 years and some patients are living longer.  Hopefully me!

I have been on this maintenance therapy now for 4 years.  Revlimid is truly a miracle drug. It is the reason why I am here today. It the reason I am here for my kids and my husband.  I take a few pills every day for three weeks on and one week off every month.  The major side effect for me is fatigue.  It is a very small inconvenience to pay for living a healthy and productive life.  I visit my oncologist every month, get my monthly bloodwork done, and receive an infusion every other month.  Other that that, I live a somewhat "normal" life. 

We are fortunate that my husband works for a company out of Oregon which passed the Oral Chemotherapy Parity Law in 2005.  We pay only $30 per month for my Revlimid.  I will most likely be on this medicine for the rest of my life.  Our health insurance is critical to us.  Without our insurance, Revlimid will cost us $7,000 per month!  If something happened to my husband's job and he had to take a position with a NH company, we would be fly through our savings and most likely run ourselves into serious financial hardship to pay for my prescription.  it was truly an honor to speak for all cancer patients yesterday. I am crossing my fingers hoping the law passes.  Other than the couple woman from the Insurance World who opposed the bill, claiming that it would increase the cost of premiums and therefore impact the quality of health care.  This should not be a partisan issue at all. It is an extension of an existing benefit and it  boils down to bringing legislation up to date with science technology.  1 out of every 4 of us will develop cancer in our lifetime.  These targeted therapies extend the lives of patients like me.  They offer us so much hope and they should be available to everyone. 

Just recently I received some disappointing news.  After almost 4 years of being in a Complete Response, ie: No M-Spike, No Myeloma is creeping back.  I now show an M-Spike of .12.  Although this number is small, it is present.  It is now showing it's face reminding us that Myeloma is always there.  Which direction is it going to go?  Is it going to slowly creep up or is it going to jump up quickly?  We don't know.  All we know, is it is active again.  It sucks.  There is just no other word to describe it.  Or anxiety is up a bit.  We are trying to not let it get the best of us.  I visited my local oncologist yesterday morning who confirmed that my M-Spike held steady at .12 this past month.  At the end of the month 4/30 we will visit Dr. Munshi at Dana Farber and see if we need to change up anything.  Until then, I am going to go in for a full body x-ray to get a new baseline.  Hopefully my bones are staying strong and will resist any bone fractures.  I called in for refill on my Ativan prescription and now I just need to breathe, stay positive and keep myself busy. 

On April 26th this year we will be participating in the 2015Team For Cures MMRF Race For Research 5k in Boston.  This is will be our 6th race.  This year will be more important than ever for our family.  My kids know that my M-Spike has returned. So this day, which is event which is always positive and uplifting and full of hope will be instrumental in helping them to remain positive.  Please consider joining us on this fun walk/run on beautiful Carson Beach in Boston.  Or if you can't make it, any donation will be very appreciated.

Well off to enjoy this beautiful day.  My little Emily is home sick today, so I think I'm going to get her out for a little lunch and find us some white eggs to start decorating for Easter.  Have a blessed Easter weekend with all your family and loved ones. 
Peace.  Love, Jeanie

Thursday, November 28, 2013

To Be Thankful

To be truly thankful.  That word has taken on a whole new meaning for me.  Three years ago today I can remember waking up in the hospital in my transplant bubble lonely, sad and scared.  Instead of cooking and baking and preparing all the yummy fixings for the the big feast, I was lying in bed barely able to sit up.  I wasn't going to be watching the Macy's parade in our pjs with the kids or having them help me set the table with our china we use twice a year.  I remember wanting to just sleep the day away hoping the pain and sadness would melt away.

Flash forward three years..... I am sitting here today in my kitchen, puppies at my feet under the table, hot cup of coffee by my side, blessed beyond my dreams.  I am fortunate enough to be in "remission".  Three years out, and there is no M-Spike present, ( Monoclonal Protein Level).  Unfortunately, some  of  my Myeloma friends are not so lucky.  Many have had recent relapses.  Why not me?  This is a constant reminder to me of how truly fortunate I am.  Myeloma is still an incurable cancer,  the goal is to keep it dormant for a long as possible.  Today I am thankful my Myeloma is still sleeping!

Having a diagnosis of an incurable cancer has brought on many other challenges.  Learning to live truly present and to engage back in life has been my biggest challenge yet.  I think for so long I just wanted to get better and get back to living like a "normal person".  What I learned is that things were not going to be back to normal.  In fact they never would again.  How could they?  I am not the same person I was back in 2010. After many sessions with my therapist, some good anti-depressant drugs, a very patient and understanding and loving husband, and learning to let go of guilt,  I am re-engaging back in life.  I am learning that it is ok to say the word "no" and to spend my time doing things that are good and positive for me.  That includes learning to nurture those relationships in my life that are positive and to let relationships go that are draining and negative.  It has not been easy to get to this point.  However, I know that it is what I need to do to continue on this growing path.  At times guilt sneaks up.  That is when I need to dig deep and remind myself how hard I have worked to get to where I am today.  I don't expect everyone around me to have the same "live in the moment outlook" that I have.  Heck it took me a cancer diagnosis and facing my own mortality to truly get it.  However, what I do know is that for me it is critical to surround myself with things and people that fill my life and not drain it.

It amazes me the people and opportunities that  have recently come into my life.  I have learned so much about myself and continue to everyday. I am blessed beyond my wildest dreams with talented incredible people at work who have encouraged and inspired me to take risks and trust my instincts. And have provided me with an outlet for a passion that I have always had.  I am thankful for the wonderful friends I have made at work who have become family to me.  And I'm sure my husband thanks them too as he is painting our cherry cabinets white.  Lol!  He is a saint for putting up with me:)

I am thankful for friends and family who continue to fill my life with love and laughter.  Who remind me everyday how good it feels to be happy.

I am thankful for a strong body with no chronic pain.  This past October Mike and I ran the BayState Marathon together.  We had a great race and it was so awesome to do it together.  Mike taught me to train and fuel correctly and it was great to cross the finish line smiling and not being carried off to the med tent. Will I do another one?  Absolutely.  Just waiting to find the right one.   Since the marathon, I run a couple days a week.  No schedule,  I just do it when it feels good.  I've also started back up with kickboxing/crossfit classes.  I'm trying to get there 3 days a week.  Again, no pressure, doing things when they feel right.

My kids have really been the source of my inspiration.  Everyday they amaze me. When I find myself getting caught up in a "Myeloma Moment"  they can snap me out of quicker than anyone or anything.  I am so thankful for my 4 beautiful angels who are truly a blast to be around.  Being their mom is my greatest accomplishment in life.

Yesterday we just booked tickets for my parents to come here for Christmas.  This will be the first time my dad will be here for Christmas in over 12 years.  My parents have been Mike and my greatest support during the past few years.  Our relationship is on a level that is so precious and we truly love having them here.  I am so thankful to have my parents and am looking forward to making incredible memories this holiday.

I am grateful for Dr. Munshi, Dr Hakemian, the Multiple Myeloma Research Foundation, and all of my Myeloma friends.  I am blessed to be here 3 years later after my stem cell transplant. And I continue to be filled with hope for the future.  Although no one knows when I will relapse, I know there will be options and treatment available, as well as a whole network of support.    Today I am truly grateful for all that is.

I am dedicating this blog entry to my husband Mike.  Words cannot even begin to express how thankful I am for him.  Over the past 3 years,  he has been right by my side.  He has supported me, loved me, held me and lifted me up countless times when I needed it most.  I am sure that it has not been easy for him.  The diagnosis, the unknown, the depression.  But he is there for me.  He is truly the one constant in my life that I can always count on.  I love you Michael Dreyer.

Wishing you all a very Happy Thanksgiving surrounded by all the blessings in your life.


Thursday, June 27, 2013

My Husband's Journey to 70.3

My awe inspiring husband just updated his blog.  He takes the reader on the incredible journey of his first Half Ironman, every stroke, every pedal and every step all the way to 70.3.  Be prepared to be inspired and to grab a tissue!  I am so proud of this man I am so blessed to call my husband, best friend and partner in life!  Just click on the link to read.
My incredible husband