Hi friends. I started writing this blog June 2015. Today that seems so long ago. Yet it was still more than 8 months after I was diagnosed with Multiple Myeloma.
When I first learned the news of my diagnosis in October 2014, very few people knew that I was battling stage 3 Multiple Myeloma, the most aggressive stage of this type of blood cancer. Upon receiving the cancer diagnosis, I wanted it to remain private. My treatment at the beginning stages would make me sick, but I wasn’t going to lose my hair. I looked normal and healthy on the outside, yet the cancer was eating away at my bones from the inside out. Scans showed my bones looked like swiss cheese holes. I had holes in my ribs, spine, arms, pelvis, and head. I continued to work full-time as the President/CEO for United Cerebral Palsy of Orange County scheduling chemo and radiation around my work schedule. I also decided to not tell our daughter Jadyn until the treatment got so severe that I could no longer keep it from her. I also didn’t want pity or gossip.
However, by the time that I was about to embark on a grueling bone marrow transplant/stem cell transplant, I needed to share the news. Disclosing a cancer diagnosis—and all that goes with it—is never easy, but it is necessary. My family and I would need emotional and physical support for the long haul ahead. So the blogging began as a way to keep people posted on the progress, setbacks, heartaches, and triumphs to ridding my body of these ugly rogue cells.
Abruptly I stopped blogging in February 2016. I was just discharged from City of Hope. The next few months would be hell. I had lost my hair a 2nd time. The 1st being when I had high dose chemotherapy to build and produce my own stem cells and harvest them for my future transplant. Because I had no immunity I was isolated to my home where I slept for most days trying to regain my life and some energy back.
I saved my energy for playing with Jadyn when she came home from school. I weighed less than 100lbs soaking wet. No hair. No appetite. But I wanted to give my little girl as much normalcy as possible.
For almost four months, I lived in a bubble in my home. During that time many complications would arise which would force us to drive back to City of Hope, sometimes in the middle of the night and be admitted. This happened at least one dozen times through the first few months post-transplant.
And then showly, miraculously I began resuming and reentering the life of the living for brief moments in time, just as long as I had a gallon of hand sanitizer and face masks.
We couldn’t fly, so we started with regular mini vacations to San Diego. Each one unique and a great distraction from cancer.
With wig or hat and wig covering my baldness (vanity), I started attending programs at Jadyn’s school. Just like all the regular mommies. Shabbat services, classroom presentations, school events. I was all but briefly in the land of the living.
By April, just in time for Mother’s Day, Jadyn and I ventured out so I could reconnect with my creative side. We did a beautiful photo shoot capturing special memories to create gifts for grammy, who had done so much for me over the course of this journey.
We played numerous silly games at home. I guess there is no vanity when playing “Pie in the Face” or “Fibber”.
By May, I was starting to feel like I was up for more creative work and began designing the interior and landscaping for our home. A home which was ready for move-in at the end of 2014, but given all that we had going on, I didn’t have the energy or the desire to work on. I guess that’s what happens when you’re fighting for your life. Now we have landscaping, and some furniture and decor. It’s starting to shape up and feel like we are making a warm loving home for our family.
June, my birthday! A cause for much celebration. Recent scans and blood work showed that I was in clinical remission. It felt like the whole month was a celebration. Going to theater, dinners out (for the very first time), another trip to San Diego.
July, 10 days after my birthday Jadyn turned 7.
Ok, Ok, I went over the top. We threw her three formal birthday parties, took her to American Girl Doll for another celebration, and went away to San Diego with cousins for Sea World, San Diego Zoo, and Wild Animal Park.
I also started back at work, all be it part-time at United Cerebral Palsy of Orange County. What a special place to work with such caring individuals. The mission of helping children with special needs kept the focus away from my health and on the children, my staff, our Board. I had been away for 10 months time.
And then with my oncologist’s blessing, I am permitted to take a plane trip, and allowed to swim but only in the ocean. Pool swimming will have to wait until I reach my 1 year post transplant (January 29, 2017). We chose Maui, Hawaii. For more than a week we play, snorkle with turtles, parasail, swim in the waves, eat amazing meals and once again celebrate life. I finally have some hair at this time, and dyed it platinum blond. I was still not comfortable sporting the platinum hair all the time, so would alternate with wearing the wig too.
By the end of Summer, Jadyn starts 2nd grade. Another monumental moment to be able to take her to her first day of school.
Then time starts to fly… Halloween..
We begin inviting friends over for parties. We host Thanksgiving and Hannukah. Adam makes amazing meals for our family and friends. And we take another plane trip, this time to Cleveland, Ohio for Adam’s best friend’s wedding.
So as I close out this blog… I am grateful to say goodbye to 2016 and welcome in a new year. A year filled with possibilities that I didn’t imagine possible just two short years ago. There are so many people who lifted me up during this journey, whose love, support, guidance I will still need. The transplant is over, yet I still have “maintenance” chemotherapy every other week. And my next big set of tests are scans and a bone marrow biopsy set for January 11, 2017 at City of Hope.
Today I am grateful for my past which led me to this moment where my dream journey begins anew. Cancer is just a chapter in my life, not the whole story. I would not be here without my incredible, selfless, compassionate family. I would not be here without my friends, doctors, nurses, and the kindness of strangers. Your friendship is a special gift. Generously given. Happily accepted. And deeply appreciated.
We are about to ring in a new year. I am alive, healthy, and most importantly, cancer free!
Goodbye 2016… Hello Forever!