September is the month for Blood Cancer Awareness

Post by Delete Blood Cancer.

Some Life Lessons Take a Lifetime

Patience and Pacing

If you let go a little, you will have a little peace.

If you let go a lot, you will have a lot of peace.

If you let go completely, you will know complete peace and freedom.

Your struggles with the world will come to an end.

~ Ajahn Chah, A Still Forest Pool

I believe that challenges (including people) show up in life because there is something I need to work on, learn, or accept. Sometimes I'm an exceptionally slow learner.

Patience and self-pacing have never been my strong suit. I like to live fully and make the most of every heartbeat: no regrets.. don't take life for granted.. live out loud.. expand my comfort zone.. learn something everyday.. help others.. push through fears.. you get the picture. Living with urgency has served me well. I've always had more interests than time. I lived a full, active life; I was highly productive and able to achieve many things. Sure, I'd crash periodically. But I could always recover and carry on.  

Pacing for Dummies

Then along came blood clots and Polycythemia Vera... my body said "No more!" to my career in community development at a particularly difficult time in the real estate and lending markets (circa 2007).  I went from fast-forward to the ICU. No one saw it coming. 

It took my body more than 3 months to recover from the surgery and my normal energy never returned. When I went back to work, I was hard-pressed to work 8 hours; I would collapse on the sofa as soon as I got home. Less than a year after the surgery I had to resign from my job. I was crushed!

I then kept my brain active with some part-time consulting and a lot of volunteer work that had flexible timelines. I also got more involved with my kids' activities. 

I believe the illness occurred to make me slow down and to re-direct me to be more present for my children during the teen years. I became the mom that could cart smelly kids to/from sports practice and help at school functions that took place during business hours. It became a gift for my soul. 

Pacing for Big Dummies

When I pushed through the extreme fatigue, headaches, and other symptoms of the Polycythemia Vera, the Universe devised a new challenge: Behcet's Disease (a rare auto-immune disorder). 

The physical manifestations were excruciatingly painful. Both the disease and the treatments caused severe physical issues that limited my mobility. For a time I needed a cane to walk, couldn't climb stairs, and certainly didn't leave the house unless absolutely necessary. I gained 60 pounds (and had the steroid "moon face"). I was so miserable, self-conscious and depressed. I became resigned that old age wasn't in my future. 
That slowed me down big time. I tried to make the most of "good days" even though a productive day would cost me a couple of days in bed afterwards. 
Apparently, that wasn't enough.

Patience and Pacing for Obtuse Big Dummies

This February came the curveball we didn't anticipate: aggressive secondary myelofibrosis. My bone marrow is no longer able to produce enough blood. Without a blood stem cell transplant, I could look forward to maybe two years of a transfusion-dependent life. 

Since none of my siblings "matched" me, we put our hopes and faith in the US and International Marrow Donor registries. 

The waiting was a real test of patience. I felt like the crocodile in Peter Pan who swallowed the clock: tick tock, tick tock, tick tock pounded in my head.

Then my chance for a miracle: a 22 year old young man from Germany is my perfect match! Talk about a 2nd chance!

45 Days Post-Transplant

The "typical" allogeneic transplant (donor cells) shows engraftment between days 10 - 25 after the transplant. 

What is time anyway?

My new stem cells are still not fully-engrafted. The whites are all donor cells. But they aren't producing platelets nor red cells yet. I'm still transfusion dependent; I need platelets every week and red blood cells every couple of weeks. 

The doctors and clinic staff remind me that it will take a lot longer because my bone marrow is hard (full of fibers), making it difficult for the stem cells to find a place to settle in. Over time, the bone marrow should return to its original spongy form (at least enough for a successful transplant). 

Here is where my patience is thin. Objectively I know that my body is starting over ~ in producing blood to support the organs. 

The feeling of helplessness and lack of control can be overwhelming some days. I try visualizing spongy marrow, talk to my precious donor cells, and count my numerous blessings. I'd eat broccoli and brussel sprouts if it would help (they would need to show me studies first). 

I do know it will all be worth it in the end. And I try my best each day (some day's "best" is better than others). One thing that helps A LOT is reinforcement from family, friends, and the medical staff that this is just part of the deal; I haven't done anything wrong; and resting is the best thing to give those fighting stem cells the chance to dig in and do their jobs.

I'm hoping to become a calm, cool, collected person through this experience. One who feels and exudes patience. One who enjoys life reasonably without creating physical burnout the next day. Patience and Pacing. These are my lessons.

Life Saving Eagle Scout Project: Building the Marrow Donor Registry

Tween Saves Lives

When the time came for my nephew Patrick to design a project for his Eagle Scout, he decided to take on something that is usually done by adults. He organized a registry drive to get healthy adults to join the National Marrow Donor Registry.  Did I mention he is 12 years old?

Creative Collaboration

Patrick worked with DKMS Delete Blood Cancer, the nonprofit registry that provided the swab kits and educational materials. 

When considering ways to get the most donors possible, he looked to see what big events were coming up that would already bring people together. When he saw that the Full Moon Four-Miler race was coming up, he contacted race officials and asked if he could run the swab drive during the race. They readily agreed. 
"I figured healthy people run, so that would be a good event." Patrick told me. 

Then Patrick approached local businesses to promote the event. One man told him he would try to stop by the event, but he had a busy schedule. Patrick said, "I've got swab kits in my mom's car. Do you want to join now?"  The man said yes and Patrick got him registered.

He designed flyers and distributed them all over Waterford. He and his family talked it up at ball games, at the park, and anywhere people with healthy stem cells would be.

Flyers like these were distributed throughout the town, at ball games, and to neighbors and friends.




Patrick recruited volunteers from his Scout troop, neighborhood, and ball team  (including his parents and 3 siblings) and they set off for a big day of public education and donor recruitment. 

"Here's a bracelet! Go to the blue tent and save a life!"

The kids walked around with signs and handed out red rubber "delete blood cancer" bracelets and guided people to the swab tent. Who can say no to adorable youth?

Runners in the race and spectators stopped by the tent to learn more about marrow/stem cell donation.  A few people shared stories of loved ones who were saved by donors.  

The winner of the race joined the Registry after the awards ceremony. He posed with the young drive organizer here.



Donors were invited to sign the "Heroes On Call" poster. 

I'm told that 87 people joined the registry at the Full Moon race and another dozen or so joined before and after the event.  

And hundreds more learned about or were reminded of their power to save lives. 

Patrick says he will join the registry when he turns 18. But he's not waiting to start saving lives!