Against All Odds… I Survive Myelofibrosis Cancer

Depending on what you have read, you CAN survive Myelofibrosis Cancer.

First and foremost, you have to make a decision to live. The power of your mind is the key. Be that 1%.

Create an environment of love and encouragement.

Find the best medical team, gather your anointed prayer warriors, and last but not least, load up on great wigs!

Create Healing Surroundings

Upon learning I would have a long hospital stay I got busy creating a joyful, positive environment for myself. In order to survive myelofibrosis cancer, I needed to create a surrounding that represented my innate love of God and life. 

Sylvia points at bag of stems cells the day of her transplant - her sister, Brenda, was a perfect match!

In the image on the right, you'll see the green chair in the corner, a wedding picture behind me, favorite water pitcher and cup, and bed comforter. The decor was necessary for me and the care providers to see life, love, and color upon entering my room. And, yes, each day, my face dawned with Mac and Ruby red lipstick. Everyone requires something different when battling cancer and other illnesses; for me, my journey required a close walk with God, beautiful sights, smells, and sounds that made the difference.

Sylvia’s hospital night stand.

When The Caregiver Gets Cancer

Shoen Family with mother, Royal in wheel chair.

I have been caring for my mother who has late-stage Alzheimer's, in my home for the past decade.   Her care has been hands-on between my family and I.  

When I learned I had cancer, I had less than two weeks until my bone marrow transplant.  My focus changed to figuring out how my mother would be cared for in my absence.  My husband and children could lien on each other, however, my mother required hands-on daily attention and care. 

I will go into Alzheimer's in future blogs but if you find yourself needing help right now with a family member you are caring for, try contacting associations specific to their condition.  With my mother having late-stage Alzheimer's, the Alzheimer's Foundation of American was a great resource for me.

Milestone Party |100th Day Post Transplant

I prayed this day would come.  It's critical if you are going to survive myelofibrosis cancer that the 100th-day milestone is reached.  On this day, many stem cell transplant recipients add it into their calendar as the turning point in their recovery. Within the first 100 days, the greatest risk for critical side effects has passed.  More importantly, during this time the stem cells have engrafted and begun making new blood cells.

I made it!

December 29, 2017, my husband threw a huge party to celebrate the 100th-day milestone.  He even had fireworks and catering by LoLo's Chicken and Waffles (my favorite soul food restaurant).  I literally danced and laughed all night under the stars with friends and family.

Like many, after the 100th day of the transplant, you think all is well.  Balancing medicines is a very delicate process.  At one point I was on over 51 medications.  With the frequent changes, my body was experiencing a variety of issues, some small and no cause for concern.  But then there was a sudden change.

First Punch: Graph vs. Host Disease

Three weeks following the party I had a doctor's appointment which adjusted my medications.  Within 48 hours, my symptoms became evident that I had a severe case of graph vs host disease (GVHD) attacking my gut.  This put me back in the hospital for another uncertain 8-10 weeks.

& then, the unthinkable happened.  I was put on a liquid diet for two months to allow my gut to heal… and my weight dropped to 87 lbs. 

I'll never forget February 12, 2017.  The hospital director came to my bedside to give me the bad news.  He stated that the medical team had tried everything and there was nothing more they could do. "We threw the whole kitchen sink at you and we can't get the attack to stop." He went on to say, I had about three days to live and to get my affairs in order. 

My response to the director was, "Oh, I thought God was going to work through you to heal me but apparently he wants to work directly with me, and that's okay. I'll see you next week."

Daughter Royal and Sylvia

My family was devastated.  We flew my daughter Royal in from college to have her "last words".  Tiger mom kicked in and all I could say to her is "don't look at my body, look at my inner soul. I WILL be at your graduation, so you go back to DC and finish your degree."

Second Punch: Dropping Off  Rottweiler Puppies

Zeus and Sylvia

Remember all the focus and grit I've mentioned about how to survive cancer? Well, it all was challenged in a way I could have never predicted.  During the graph vs host disease attack, I learn that my dog Zeus had impregnated his sister Coco and there are now 6 unexpected puppies. Needless to say, I had to make the heartbreaking decision to give the dogs to a shelter to give them any chance of survival while my family was in upheaval.

What happened next, I could have never imagined.  The shelter, upon learning that I was the wife of Joe Shoen, turned the puppy drop off into a social media hot topic and scandal.  My husband did his best to shield me from almost all of it, but it was hurtful nonetheless during such a scary time for my family.

If I had not been the focal point, I too would have been captivated by the salacious headlines.  What I found most interesting, however, was the denial that I was in the hospital fighting for my life, in order to place blame rather than see the desperate situation my family and I were in.  My only hope is that the shelter was able to gain enough publicity to continue to take in and care for other Rottweilers and puppies.

Supportive Friends in Hard Times

From the moment I learned I had cancer, to the day I left the hospital, so many friends near and far extended love and support every hour of every day. 

Your best friends are superhero's armed with the superpowers to transform any depressing situation into something lighthearted and funny just by putting their special spin on things. Like, showing up with care packages of food, a variety of my favorite things, and loving messages just to lift my spirits.

Dream Team

It's impossible to talk about my survival without first giving a huge mention of love and gratitude to my dear sister Brenda Palms Barber, my stem cell donor, and Dr. Veena Fauble my amazing doctor (both pictured below). Surviving would not have been possible without these two exceptional women. To learn more about my team and Myelofibrosis, take a look at my post entitled Myelofibrosis - A Rare Blood Cancer.

Dr. Veena Fauble smiling on the Arizona Oncology rep

Veena Fauble, MD

Brenda Palms Barber in pearls

My stem cell donor and sister

Won't HE Do It!

Sylvia and her sons

With all the love and support of my family and friends, it is thrilling that I can tell you, I was there to watch my daughter graduate from George Washington University in 2018, in 2019 see my son Carty turn sweet 16 and son Joseph enter high school. Although for the past 3 years, we have been wrestling from the grip of Cancer, through God, we have made it and continue to thrive.

Today, I have reached my 3-year milestone of being cancer-free. My hope is that anyone facing any cancer knows that even in the darkest hour God can get you through it. 

If I can survive myelofibrosis cancer, know that it is possible for you too. So, if you know the song by Destiny's Child - I'm a Survivor, sing with me.

With Grace and Gratitude,