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! 

STEM CELL TRANSPLANT STEP 1: MEDICAL EVALUATION

DONOR NEWS!!

I learned this week that my life saving blood stem cell donor is a 22 year old man who lives outside the United States. He has agreed to the stem cell collection schedule my doctor proposed. How cool is that?! Young, healthy stem cells ~ it doesn't get any better.  As a patient, I am grateful that this young man agreed to take time out of his summer to save my life.  As a mother, I feel a sense of pride that this young person learned about the need for bone marrow/stem cell donors, joined the registry, and agreed to help a stranger in another country.  Both my kids say they hope they can do for someone what this young man is giving me. I get teary every time I think about this.

As people share wishes, prayers, and positive thoughts for my health, I ask that you include my selfless, nameless donor in those efforts. 

COUNTDOWN TO TRANSPLANT

We are ONE MONTH from my Re-birthday! The process begins with a thorough Medical Evaluation. Tomorrow (June 27, 2013) is my big test day.

7:00 am:   Pre-BMT labs, Vitals
   I was told they will draw the blood from my Power Port, so I take that to mean they need a lot of blood.

7:30 am:     Drink jug of Barium.  What a refreshing treat!

8:00 am:     Bone Marrow Biopsy   [need another 'tag line' for my rump!]

8:30 am:     Meet with Clinical Health Psychologist  (this one is most worrisome ~ what if they realize I'm a bit nuts?)

9:00 am:     Meet with Research

10:00 am:    Pulmonary Function Test w/DLCO

10:30 am:    Meet with Atlanta Blood Services re: my need for platelet donors

11:00 am:    Register for CT scans

11:30 am:    CT scan of Brain / Chest / Abdomen / Pelvis

1:00 pm:     Lunch (probably the highlight of my day)

1:30 pm:     Register for Echocardiogram/EKG

2:00 pm:     Echocardiogram

It is no secret that among my numerous quirks, I have 'text anxiety.' 
Whether it's my car's emissions test, the vision test to renew my driver's license, or weekly blood tests, I get a rush of the 'heebie jeebie jitters'. This may not yet be a recognized technical term, I think you know what I mean.  

To calm those jitters, I mindfully picture the test administrator in his/her underwear and focus on my breathing. 

In this situation, I recognize that all these tests will form a baseline of the health status of all my systems pre-transplant. My biggest threat to surviving the transplant is organ failure. The results of these tests enable the doctors to anticipate issues that may arise during chemo and post-transplant and plan accordingly.  

I will find out the results of all these tests on my Education Day, scheduled for July 10th.
As the song goes, the waiting is the hardest part.

The Call and The Twitter

The CALL

Yesterday afternoon I received "The Call" we've been hoping for. I had to pull the car off the road so I could concentrate. It was my stem cell transplant coordinator. She said that there are 2 perfect matching donors (10 for 10 match of HLA tissue sequence) for me. One of them is bound to come through for me so we can transplant next month (July). We should have confirmation and a scheduled date sometime next week.  
Of course, nothing is final until it's final.  But we are over the moon happy with anticipation.

The TWITTER

On my way home, I managed to reach Robert, my mom, my dad, and my siblings by phone to share the news. When I returned home, I gathered Katrina and Alexander to let them know. I then told some dear friends. 
I was too excited yet too tired to cook, so the kids and I went out to dinner. 

Before we place our food order, their phones began vibrating and beeping like they were about to explode.
The kids were trying to ignore their phones and focus on me. Between their furtive glances and the sounds and vibrations from the phones, my curiosity got the best of me.  "What is going on with your phones? Go ahead and check them," I said.  

"It's Twitter."
"And Instagram."
"Your news is getting re-tweeted all over the place, mom!"

Just then, my phone started dinging with text messages.. Congratulations from friends who learned from their kids that I've got a match.

My head started spinning. How could my news be tweet-worthy?

I confess to be in a bit of shock and quite tired. Here is how I can answer the questions most of you have.

FAQs

Q:     What do you now about your donor?
A:     I only know that this person has a big heart for others and our HLA sequence is a great match.  We will be anonymous to one another for a year. I don't know gender, age, ethnic background, or where this person lives.

Q:     When will the transplant occur? Does the donor come to Atlanta?
A:     I should know the transplant date and prep schedule next week.  The MUD (Matched Unrelated Donor) Coordinator at Northside Hospital will coordinate with the marrow donor registry with whom the donor registered (e.g., Be the Match or Delete Blood Cancer). The registry staff will communicate with the donor to determine timing and logistics and report back to the MUD Coordinator. The MUD Coordinator shares the info with my Transplant Coordinator who gives me the transplant schedule and plan.

My hero (aka donor) doesn't leave his/her community. The donor will get a daily injection of Neupogen (filgrastim) to stimulate stem cell production for several days before the stem cells are collected from the bloodstream. 
When the blood stem cells are collected, they are shipped to Atlanta immediately so I can receive them via transfusion the next day.

Q:    What happens between now and the transplant?
A:    I'm told my primary job is to remain healthy ~ no colds, viruses, infections. I need to learn to count backwards, too. 

- 3 Weeks:  I will undergo a series of tests to check the condition and health of all my major systems. 
- 2 Weeks:  Meet with all medical personnel to go over test results, my care plan, what to expect, etc. 
- 1 Week:  Prepare for Transplant Day with daily chemotherapy.

                My donor receives Neupogen shots to stimulate stem cell production

                Day -1:  Donor's stem cells are collected by apheresis; stem cells shipped to  Northside Hospital.

Day Zero:  Transplant Day (also known as my "Re-birth day") 
                 I receive my donor's stem cells by transfusion.

When I get the official transplant date, you can be sure I will be filling my calendar with lots of "to do's" ~ mostly around getting Katrina ready for college, Alex and his college applications, scheduling bills, etc.

Also, I'm setting up a Caring Bridge page so we can keep anyone interested up on the latest in my big adventure.

I need a nap and a transfusion, so that's it for now.

Beating the Odds Starts with a Swab

When I began this journey 3 months ago, I was pretty confident that one of my four siblings would be my match (a 10 for 10 match of HLA-types; it's not about matching blood type).  Each had a 25% chance, so wouldn't 1 of the 4 have to match?   That's not how probabilities work, I learned. 

I figured the Northern European ancestry on my mom's side would ensure several potential donors. Apparently our Greek ancestry is a bit more diverse than we thought.  

My family and friends immediately jumped on my challenge, determined to find me a donor. They have already run nine (9) Bone Marrow Donor registry drives ~ in Houston, Tempe, Grand Rapids, and four here in Georgia.

My mom even brought donor registry kits to her retirement party yesterday in Dallas ~ I believe she swabbed 32 new willing donors! 

556 new healthy people have joined the 

National Marrow Donor Registry 

because of these efforts!

Need for Marrow Donor Goes 'Viral'

My plight has hit social media!  While I've been public about my journey, I struggle with asking for help for myself ~ especially from perfect strangers.  

Friends convinced me that a Facebook page would help promote awareness and organize volunteers. I've seen similar pages (Genny's Hope Foundation and Help Nalini Now) that share a common goal:  to increase the number and diversity of healthy people registered to be bone marrow/blood stem cell donors. 

So now we have "Marina Needs Us" to promote the marrow donor drives and blood drives that are organized in my honor across the country. We'll see how helpful it is and how it changes organically as conditions change.

Donor drives have been done in partnership with AHEPA, Be the Match, and DKMS Delete Blood Cancer.  All the donor information feeds into the National Marrow Donor Program. 

Some use SignUpGenius, a free on-line volunteer organization site for community organizations to post volunteer opportunities. We learn as we go.

Goal #1:   Register 1,080 New Potential Donors 

Since I always work best with a goal, I set my sights on adding 1,080 donors to the registry. Why 1,080?  Because 1 in 540 people on the registry end up donating their blood stem cells to a patient like me, I'd like to pay it forward to cover a matching donor for me and one more patient. 


I continue to be humbled when I see neighbors, friends, friends of friends, and parents & siblings of my kids' friends volunteering to work these donor drives, get swabbed, and talk it up in support of our efforts to increase the donor pool.  

Helpful hint:  students can earn volunteer / community service hours for their assistance with these efforts.


Goal #2:    Dispel the Myths

I readily admit that I didn't know anything about bone marrow transplants until I met people with various MPNs (myeloproliferative neoplasms) that progressed to burn-out the bone marrow. 

What's worse that no information?  BAD information!

A Friend In Deed for a Friend In Need
None of this happens in a vacuum, and I certainly have not done much to make these drives happen.

Lynn Agnes, fearless friend

I must take a moment to openly thank Lynn Agnes for taking on this challenge of finding my match. We haven't seen each other in quite some time, yet Lynn showed up to help with our big drive at Peachtree Ridge High School on May 10th. Lynn researched my illness, the transplant process, and how marrow donor matching is done. During the drive at my kids' high school, she began brainstorming and calling people to schedule more drives.

Lynn secured several drive locations in a matter of days:  Gwinnett Chamber of Commerce, TPC Sugarloaf Country Club, Gwinnett Medical Center, Gwinnett Technical College, downtown Duluth (Georgia), and the Annunciation Greek Orthodox Church in Atlanta.  And she has more activities in the works. 

Lynn inspires me and my family with her bold tenacity. She is teaching my kids how to take action when there is an urgent need.  We know that her efforts will save lives.
Thank you, Lynn!