Tuesday, September 10, 2013

September is the month for Blood Cancer Awareness

Monday, September 09, 2013

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.

Saturday, August 31, 2013

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! 

Saturday, July 27, 2013

Stem Cell Transplant Journey

Over the last few weeks, I've focused my stem cell transplant experience through the CaringBridge website.  I'll continue there as it seems easiest for my extended family to keep up. 

You are welcome to follow the journey there. 
When my energy picks up, I will resume improved (hopefully) writing here. 

Thank you and cheers!


Wednesday, June 26, 2013



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. 


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.

Jakafi to the Rescue

Myelofibrosis Treatment Banishes Behcet's... Coincidence? I think Not

About one month after my Autumn 2009 PV (polycythemia vera) diagnosis, I started getting unexplainable lesions in most inconvenient locations (I've shared this over a year ago). After several months of excluding many possibilities, it was diagnosed as "Behcet's Disease/Syndrome" or "Probably Behcet's" in March, 2010.  

I found it odd that I would acquire an MPN (myeloproliferative neoplasm) and an auto-immune disease around the same time (mid-40's). My internist said anything is possible; my hem/onc and rheumatologist said there was no connection. 

While the medical literature didn't show any links with Myeloproliferative Neoplasms (MPNs) and auto-immune diseases, the question persisted in my mind.

Chemical Reactions or Physiological Changes?

I took Hydroxyurea (HU) to manage the polycythemia vera, along with occasional phlebotomies. When the Behcet's became unbearable, I was treated with prednisone for over a year to manage the flares. I then switched to Remicade infusions when I couldn't stand all the side effects of prednisone. The Remicade worked like a dream for six months. The last six months of using it, however, I endured debilitating inflammation and joint pain. My rheumatologist pointed to the PV and my hem/onc pointed to the Behcet's. Even getting second opinions in both fields kept me in a painful mobius loop.   

Last November, a gastroenterologist friend said that the inflammation symptoms were consistent with what some of his Crohn's patients experience after a time on Remicade.  I was in a conundrum: which pain do I prefer -- the hands, feet, and joint pain or the lesions pain in other equally important body parts. It was a false choice. 

At the same time, all my blood counts were on a slow but stead descent and we knew something new was happening. I quit taking the Remicade and decided to use prednisone when a flare was just beginning. It took about eight weeks for the Remicade to fully leave my body.

Enter Jakafi... After being diagnosed with post-PV Myelofibrosis in February 2013, I began a low-dose regimen of Jakafi to shrink my spleen, ease bone pain and night sweats.

My last Behcet's encounter was the first week I started Jakafi. I hit it with prednisone to keep it from going full flare. It subsided within 4 days. I haven't had another flare since.

Apparently, there has been research on the JAK pathways and their relationship to auto-immune diseases. Pfizer now has TV ads for Xeljanz (tofacitinib), a "JAK inhibitor for Rheumatoid Arthritis."  RA is another auto-immune disease.

I realize that I am but a sample of one, but this experience gives me solace that my hunch that these two rare/oddball diseases share something in common. The JAK pathway!

When Focus Needs Perspective  

We are living in a most remarkable time of scientific discovery. 
Researchers are able to focus on changes at the molecular level and tie to proteins, genes, kinases and other terms I can barely pronounce.  

Many times I've been frustrated by the very narrow scope of this research because it doesn't help me NOW when I'm hurting. 

I must remember the adage: Follow the money. 
Research funding is tied to very specific research questions and tight timeframes, influenced by the funder(s). Funding is extremely competitive. And those research dollars rarely fully-fund a project, much less encourage researchers to follow new paths that emerge as they do their work. 

So blood cancer researchers continue their diligent work and auto-immune disease researchers continue their work. All the work is vital to understanding the disease processes which will ultimately inform us on effective prevention strategies. 

At the same time, a funding mechanism that supports tying all this knowledge together must occur to make the whole larger than the sum of its parts.
Stand Up to Cancer is a funder of innovative and collaborative research and information sharing among experts of different types of cancers.  

Perhaps it's up to patients/trial subjects (whole beings) to share our experiences, observations and questions. We can help the subject matter experts "connect the dots" in ways that may be outside a study protocol, but useful nonetheless.

After all, we are not only the patients, we are the consumers of the eventual treatment or cure.

Thursday, June 13, 2013

I Blame the Hemoglobin

There seems to be an inverse relationship between my Hemoglobin level and Anxiety level. Hemoglobin is a protein in the red blood cell that carries oxygen through the body. As the hemoglobin decreases, I become more easily annoyed -- with myself and everyone around me. I get the anemia double-whammy from the alpha thalassemia trait (red cells are smaller and oddly shaped) AND low hemoglobin count.  

The difference between me with hemoglobin at 12.0 and 9.5 is 'Marina the Upbeat, Can-do Gal' and 'Marina the Grouch.'  12.0 is fun to be around; 9.5 and below is best to avoid.

The filter between my thoughts and my voice has thinned over the course of prolonged illness. I used to be a pretty tactful person, able to smooth ruffled feathers and still get a point across. Active listening, patience, body language and good humor are reliable communication techniques. I've studied non-violent communication and practiced appreciative inquiry as a part of my spiritual growth and leadership development. 

Yet when the hemoglobin dips below 9.5, all bets are off. 
Active listening morphs into "what the heck were you thinking??"  
Patience evaporates in the midst of household procrastination (isn't it a good idea to save big clean-up projects for the hour before company is to arrive?). 
Humor is replaced with sarcasm: "of COURSE I know where your [insert any random item] is. Let me turn on my magical internal GPS device that tracks items I've never seen or used and find it for you."   

While I'm not quite ready to appear on the Jerry Springer show, it seems like I'm trying out the role.  My gripes, rants, and sarcasm are not how I'd like to be remembered, especially by those who get the brunt of my mis-placed frustration ~ my loved ones. 
If life is my Advanced Placement exam, I'm clearly not ready for graduation.

I offered several "reasons" for my crankiness: 
*  teenagers are self-aborbed                     *  it's the anemia talking  
*  'no one' shares my sense of urgency         *  not enough oxygen to the brain   
*  we don't live in a barn                           *   fatigue causes frustration

The correct answer may be "all of the above PLUS fear"

When my blood levels are closer to normal, I feel good enough to keep busy with the kids, help with the marrow registry drives, and spend time with friends. I don't make time to contemplate the upcoming stem cell transplant.

When the need for a blood transfusion approaches, I am so fatigued (this is different from feeling 'tired') that I physically cannot do as much. Climbing the stairs sets my heart pounding and I rely on the handrail to rest. I spend time in bed or on the sofa with hopes of 'recharging' enough to complete a basic household task.

When I'm forced to be still, questions and thoughts about what lies ahead bubble up in my head. Will I get a matched unrelated donor?  Will it come through in time? 
What happens if the myelofibrosis progresses too fast to acute leukemia before a donor is found? 
What kinds of complications could happen during transplant process?  
My organs have endured a lot of stress the last 6 years with the blood clots and medications. Will I be strong enough to over come the challenges? 
How will my marriage change? What about Alex's senior year in high school ~ how will I keep track of him? What about Katrina's first year in college?  I've seen enough movies on the Hallmark channel to know that mom's illness can reek havoc on kids' academic performance.

These thoughts remind me that control is truly an illusion, albeit one of my favorites. The feelings of vulnerability and powerlessness over my future stir an inner rage. It is not my happy place. I've read enough pop-psychology books to know that anger is a mask for fear. No amount of scenario planning can sooth the ever-present frustration that lies beneath a seemingly smooth, confident veneer.

It seems that I can accept the uncertainties when I'm busy. I comfort myself by doing what I can to help others, be present with my family and friends. I embrace my positive outlook and an inexplicable but real sense of peace that everything will work out for the best. 

Wednesday, June 12, 2013

The Call and The Twitter


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.


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.


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.

Sunday, June 02, 2013

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!

Monday, May 13, 2013

We've Got Some Great Cheeks in Gwinnett County!

252 and Counting!

That's how many living angels came to Peachtree Ridge High School last Friday and joined the National Bone Marrow Donor Registry.

Libbi, Dave, Marina, Robert at the close of the drive
Our dear friends and neighbors, Libbi and David Wengryn, asked our kids' high school officials if we could hold a Bone Marrow Donor Registry drive on the campus. 

May is a hectic month for high schools ~ AP exams, Final exams, Seniors Graduation, the spring musical, athletic competitions, and thousands of details of which I'm pleasantly ignorant.

And yet, Dr. Kevin Tashlein (our Principal) and the entire administration and faculty gave us a resounding, "Yes! Let's Do It!"  Mr. Jon Weyher (the AP for Athletics, Health/PE, Cafeteria, & Clinic) ensured we had use of a gym and opportunities to promote the event to students the week of the drive.  

We worked with DKMS Delete Blood Cancer and our local donor recruiter, Kimberly, trained our incredible volunteers and made sure the event went smoothly. 

Two Peeds Join the Registry

Alex & pals photo-bomb Robert's swab shot.
My husband, Robert, joined the registry.  "I would have done this years ago if I knew then what I know now," he said between swabs.

Our daughter, Katrina, is 18 years old and she also joined the registry. She will graduate from high school in 2 weeks. 
"I hope I get the call some day so I can save someone's life," Katrina told me as she showed me her donor registry card. 

Katrina studied the educational videos on bone marrow/ blood stem cell transplantation and worked hard to educate her peers on the importance and ease of joining the registry. She used Facebook to create an 'event' and invited hundreds of people. 
Some of her teachers had her speak to their classes about the Bone Marrow Donor Registry and what's involved for donors. 
The most common question kids asked her about donating is, "Does it hurt?" 
When she describes the two methods of transplant and types of discomfort for each, she adds, "It's nothing compared to the pain my mom has lived for years." 

DNA from Around the World Urgently Needed

Because ethnicity and heritage influence our HLA composition, race/ethnicity matters when it comes to finding a life saving donor match. 

It really is a numbers game. The more people who join the registry, the higher likelihood a leukemia patient will find a donor and survive. 

I found varying statistics on websites that stated likelihood of finding a match based on race and ethnicity. Rather than claiming specific percentages here, it is clear that Caucasian (white) leukemia and lymphoma patients have SIGNIFICANTLY higher likelihood of finding a match from the donor registry than non-white patients. 

People of African, Asian (including South Asian), Native Hawaiian or other Pacific Islander, Hispanic/Latino, Native American, and Alaska Native descent have far less chance of finding a matching donor.  

Why is there a large difference?
One reason is because there are more HLA combinations in the genetic composition of descendants from continents other than Europe. Another reason is because there are far fewer people of color in the donor registry.   

I've learned that there are several reasons why people don't join the registry. Most people lack awareness of the need. Many don't trust how 'the system' will treat and use their DNA. Recent research is illuminating. 

Let's Be the Change

I figured our kids' school was a a great place to launch our education & donor registry efforts. Our student body is quite multi-cultural ~ check out my kids' Junior-Senior Prom group.

These healthy, bright 17 and 18 year olds are inspiring. Their world views are more expansive than their parents' and grand parents' generations. They restore my optimism in humanity's future (particularly in light of how we 'grown-ups' continue to poison and neglect our ecosystem). 

I was overwhelmed by the outpouring of concern and well-wishes during the drive. 

Members of the Senior class, faculty, and administration dropped in to swab and join the registry. Some students who are not yet 18 helped to recruit those of age to come in and register.  

Coach Hellman, the Varsity Boys Tennis Coach swabs in

Gotta love these healthy, athletic stem cells! Thanks, guys!

Friends, neighbors, parents of my friends' kids, and people I worked with in various community endeavors also came to the school to get swabbed. 

Some who are over the age of 55 dropped in to let me know they would donate if they could (none pictured here, unfortunately).

My friend Kimberly Cho encouraged many people from her church to come and join the registry.

Here are a few more photos from the day.

I am grateful to the friends who came out to run the drive.
Sareena, Joella, and Lindsay are
Great Volunteers & Potential Donors
More healthy stem cells!

Thank you for signing our board after joining the registry!


Dr. Tashlein joins the registry!
Ana, Aliya, & Lindsey registered &
helped during the drive.

I have amazingly caring & supportive friends ~
here with Sara, Madison, & Eva Orazi with Libbi Wengryn.
I just LOVE all my kids. Here with Harrison,
Christina, Kevin, and Alexander.

Alexander & Katrina are all smiles at the
end of a successful donor registry drive.

Mr. Feldman, Director of the Theatre Department
presents $425 to Delete Blood Cancer
through donations raised by patrons after each show
of Legally Blonde, the Musical.
Kimberly Duncan of DKMS Delete Blood Cancer and I are
all smiles after a successful drive.

Wednesday, May 08, 2013

Family Recruits More Life Savers

   My extended family lives the maxim "One for All and All for One!" ("Unus pro omnibus, omnes pro uno" for my Latin linguist friends)

   When word got out that "Big Marina needs a blood stem cell transplant and none of her siblings are a match" everyone got busy. (In case you're wondering, "Big Marina" refers to me as the eldest of two first cousins named after our Yia-yia, our Greek grandmother. I am also physically larger than my talented and beautiful cousin, "Little Marina")

   Cousins, in-laws, out-laws, and friends have joined the Bone Marrow Donor registry in hopes of being my match ~ at donor drives in their communities and by ordering a kit online. These great people are prepared to donate their bone marrow/stem cells to anyone in need. 

Our Race to Beat the Odds
With more than 4,000 characteristics of HLA types, there are literally millions of potential combinations. The odds of finding a full genetic twin are staggeringly small. Transplant doctors look for 10 matching HLA types of donor and patient. Only 1 in 540 donors in the registry end up donating their bone marrow/stem cells. It's no wonder that 3,000 children and adults die each year waiting for a match.

Race and ethnic heritage (in terms of genetic history, not man-made political jurisdictions) influence these combinations. I'm still learning that my genetic ancestors are more diverse than Greek, Irish, French, and German. (The info from the DNA I sent to 23andMe continues to grow.)

WIth all this in mind, it is in everyone's best interest to increase the number of donors in the registry. My 'Matched Unrelated Donor' (MUD) is likely to register through a donor drive run somewhere else. 

Since we are a goal-oriented people, we hope that the donor drives done on my behalf result in at least 1,080 new donors; a life saver for me and another could be in the mix. All it takes is a cheek swab. Can it be any easier to pay it forward?

My Family Diaspora Swabs the US
In two months time, family and friends will complete five bone marrow donor drives across the country.

My mom, Eileen, with sign created by Thea Nini & Little Marina
Houston, Texas
My Thea Nini (Aunt Elaine) Sampanes Badoian orchestrated a Bone Marrow Donor Registration drive at the Greek Orthodox Church in Houston, Texas in April. She worked with Be the Match.

Tempe, Arizona
Mtn Pointe HS in Tempe, AZ ran a great drive!
Donna Barry Sampanes, my sister-in-law, organized a donor drive at Mountain Pointe High School in Tempe, Arizona two weeks ago. Donna is doing a follow up this weekend! She also worked with Be the Match.  

Suwanee, Georgia
My neighbors and dear friends, Libbi and Dave Wengryn, organized a drive to register donors at our kids' high school ~ Peachtree Ridge High School in Suwanee, Georgia. Katrina is making posters, Alex is distributing information and the Peed and Wengryn kids are recruiting donors and will assist during the drive. The drive is this Friday, May 10th from 10 am - 3 pm.

Marietta, Georgia
My cousin Christina and her parents (Ted and Linda Sampanes) are organizing a donor drive at the Greek Orthodox Church in Marietta, Georgia later this month (also with Be the Match).

Grand Rapids, Michigan
The home church for our Sampanes family is Holy Trinity Greek Orthodox Church in Grand Rapids, Michigan. Family friends are organizing a donor drive on my behalf.

Waterford & Milwaukee, Wisconsin
My amazing nephew and godson, Patrick Goldammer, is going to run a big donor registration drive as his Eagle project with the Boy Scouts. It's a big task for a 12 year old! Stay tuned for more information.

Wednesday, April 24, 2013

2 Reds Straight Up, with a Platelet Chaser

Now that I have my new Port in place and can no longer partake of my favorite wine and beer, the wine analogies have taken over my impoverished brain.  If someone tells you, "Don't even THINK about apple pie!" then all you'll see are apples, pies, pie a la mode... I'm sure there is a psychological term for that, but I digress.

Monday's blood work showed Low's & High's:
Hemoglobin: 7.9  (low)
Hematocrit: 24.9  (low)
Platelets: 62  (low)
Whites:  3.1  (low)
Neutrophils:  33 (low)
MCHC: 31.6 (low)

High are Bands, Metamyelocytes, Myelocytes, Anisocytosis, Poikilocytosis, Polychromasia, and Schistocytes.  (I'm still looking up all these from the Manual Differential test).

Next thing I know, I'm here at Gwinnett Medical Center's Out-patient Transfusion Center.
Good to the last drop!
2 units of platelets
My appointment is for 7:00 am EST. 
Yes, you read that right! 7:00 AM
Hells bells, I wasn't a morning person on my best, healthiest days!
Kudos to my wonderful daughter who brought coffee to my bedroom this morning ~ at least it got one eye open.

I'm getting two units of Red Blood Cells and 2 units of Platelets. This is the first time I'll receive platelets and third time receiving RBCs. 

I must give a shout-out of THANKS to the blood donors from Gainesville, Florida who made their precious B negative blood available to me. Thanks also go out to the platelet donors who are saving me today. 
 Thank you! Thank you! Thank you!

Close up look at the port in use.
My last blog entry shows what the port looks like (please excuse the leftover betadyne stain on the skin. Here are pics of the port in use. With great advice from another patient, I applied a dollop of lidocaine 5% on the port and covered it with a clear sticky sheet the nurse gave me the day before when I went in for the blood match and cross. I put the lidocaine cream on the port site about 20 minutes before my scheduled appointment. 
The nurse, Amy, was fastidious in her preparations and the IV hook-up. We both wore masks during the process. I barely felt the needle go in through the skin! Yay me!

Turns out she worked in the transplant unit at Northside Hospital (where I will be). I was quick to recognize her knowledge of blood stem cell transplantation and peppered her with questions throughout our day together. Her candor was professional and refreshingly frank. 

When I asked about how to best prepare for the big fight (other than eating well, avoiding illness, and exercise), she recommended that we prepare for the enormous physical and emotional toll it will take on me. It can be frightening to someone who doesn't understand that it is part of the process. Others have told me that the intense chemo takes you to death's door, leaving you to crawl back to the land of the living.    
Well folks, I'm not sure we'll be sharing photos of that grandeur (but you never know).

While the platelets were dripping in, the hospital chaplain stopped by. Now, I don't know why, but when an official person of God shows up in my hospital room my first reaction is, "Why am I the last to know? How long do I have? Holy crap! What sins should I be confessing? Is eating ice cream out of the carton (double dipping of course) and sticking it back in the freezer a deal breaker?"

Platelet Pole Dancing
We talked for awhile, while I was under the influence of Benadryl, and I think I confessed to a lot of anxiety about this whole silent sickness / need a transplant / need an unrelated donor situation. The speed at which this seems to be progressing is really throwing off my well-intended plans to hit some Bucket List items before the transplant. She listened attentively, likely wishing she picked another room. 

As I talked, my eyeballs got a bit sweaty and I decided to lighten the mood. I asked the minister to take a picture of me pole dancing with my platelets. She kindly indulged me as you see here.

I'm home now and feel exhausted. Time for a nap!