Missy Muller

First post: Feb 2, 2022 Latest post: Oct 13, 2022
Welcome to our CaringBridge website. We are using this site to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. 

The journey to diagnosis...
Two years ago I noticed I was bruising easily.  so my doctor did blood work and found I had low platelets.  She sent me to a hematologist/oncologist and he ran multiple tests and found that my red blood cells were enlarged as well, but could not figure out why.  He continued to see me every 6 months for blood tests and other random tests.  A few times the doctor commented to himself, "No, it couldn't be that, you are too young. "  On my 6 month visit in June, they discovered 4 areas in blood counts were all low now.  They did a bone marrow biopsy and found that I have Myelodysplastic Syndrome, which is considered a type of blood cancer.  In MDS, some of the cells in the bone marrow are abnormal (dysplastic) and have problems making new blood cells. Many of the blood cells formed by these bone marrow cells are defective. MDS can progress to a rapidly growing cancer of bone marrow cells called acute myeloid leukemia (AML) (https://www.cancer.org/cancer/acute-myeloid-leukemia.html) if it goes untreated.  A bone marrow specialist explained to us that a bone marrow transplant was the only cure.  We met with doctors at Jewish, UC and a doctor at Cincinnati Cancer Advisors (CCA). The CCA doctor wanted me to see the "MDS nerds of the world" and recommended we go to Mayo Clinic in Rochester, Minnesota.

The journey to Mayo Clinic...
We met with a Mayo doctor in November 2021 and we were impressed with their approach and individualized care I received. Our visit and follow-up virtual visits gave us the comfort and clarity we needed to feel comfortable with where I would be getting my life-saving transplant.  In order to get approved for transplant by insurance and to get baseline knowledge for the doctors, I was required to go through a battery of tests.  The week of January 24-28 my husband, Keith, and I went up to Mayo for my pre-transplant evaluation.  I had MANY tests performed (heart, lung, skeletal, sinus, dental, kidney, liver, blood) and met with many individuals to learn about financial needs, nutrition, research, transplant schedule/needs, admittance, doctors and nurses.  It was very overwhelming but very informative.  The takeaway from the evaluation testing and meetings was that 1. I am pretty darn healthy for a 53 year old :)   2. Mayo seems to be way ahead of local protocols for MDS, scheduling, organization, and coordination of appointments/departments  (500 transplants a year) 3. Everyone at Mayo and in Rochester are so friendly, kind and helpful.  

So that has been my medical journey over the past 7 months.  I would be remiss if I did not share my emotional journey.  It has been an interesting road.  Many of you know that we lost a beautiful son, Jacob, to cancer at age 4.  Unfortunately, we watched our son suffer through a bone marrow transplant at age 2 so we were very aware of the challenges a BMT brings when the doctors told us it was my only cure.  I have always said that someone always has something or some experience worse than us.  We knew we could lose Jacob to his cancer so we made sure to spend quality time cuddling, playing, taking pictures and went to "Mickey Mouse's" house 3 times.  Others do not have that opportunity to live in the moment and enjoy it before they lost their child.  So from that perspective, I feel blessed that we were able to cherish every moment.  

I am extremely blessed in many other ways! 1. My best friend/husband!!!  We have been together for 36 years, married for 30 years in July 2022.  We have many joys in our lives like our 3 wonderful children (Emily 24, Allison 20 and twin brother Zachary 20), traveling, date nights and spending time with our families (parents and siblings).  2. My friends!  Keith and I have maintained close friendships from college and have our amazing neighbors with whom we have been friends and supporting each other for 18 years! 3. My school family!  I have been working for Fairfield City Schools for 19 years as a teacher and then administrator.  I love working with such giving people.  The devotion and care my school family gives to helping students, families and other people is incredible and the amazing students are so special.  The outpouring of love and support they have shown me has been so heartwarming.   I have always been on the side helping others and to be on the receiving side has been very strange and hard to accept.    

I cannot express the gratitude and thankfulness I feel to have such amazing people in our lives helping and supporting us along this journey. This journey is just as challenging for my family as it will be for me and I can never repay them for what they are doing this me.   Without all of your support, I would not have gone to Mayo to have my transplant due to the financial burden and the stress of leaving my children.  I believe Mayo is giving me the best survival opportunity and less chance of relapse.  So many thanks to you all!!!

So, now that I have shared my journey, blessings and appreciation, I will be posting to update you all on my transplant journey.  If I am unable to update then Keith or Emily will do it for me.  I know, those of you who know Keith are thinking "WOW, Keith on social media?", yes, he is stepping outside his comfort zone for me :)  Love ya Keith!  Please feel free to leave me messages or just read.   

I will leave you with one final thought... this is only for 4 months of my 53 years (636 months) which is .6% of my life.   
I will beat this and be back in 4 months to be with all of my amazing friends and family!!