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 Protein......it 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.  http://support.themmrf.org/site/TR/RaceforResearch/General?team_id=34130&pg=team&fr_id=2000

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

1 comment:

  1. I enjoyed reading this post from two months ago...life has been very full and exciting for you!! I have no idea how you accomplish all that you do with your husband and kids, let alone going back to work! Kudos to you for being an inspiration to many and running to raise money for MMRF! I was sorry to read about the dreaded M-spike now showing up again and pray something new will beat it back quickly and effectively. EZ has been on a steady regimen of Revlimid with no Dex and no days off. Thank goodness his body tolerates it, and so far he is maintaining his CR. Let us know the next steps for you!

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