A call to action. A cry for help. An opportunity for you to realize your power to give strength to someone affected by a blood cancer (Leukemia, Lymphoma, and Myeloma). Get involved. Make someone stronger.
Note: Story contributed by E, one of the primary inspirations behind our “Join the Fight” campaign.
When you hear the term “heartbroken”, the first thing that probably comes to your mind is a break-up, infidelity or unreturned love.
I’ve had relationships that haven’t worked out the way I thought or hoped. But I had time to prepare for the outcome because I saw it coming. Of course I was sad, disappointed and hurt when they ended, but I wouldn’t say I was “heartbroken”.
When I hear this word, I think of one day, one conversation. It involves denial and rejection but not in the way you’re thinking.
December 18, 2012. My doctor had just returned from vacation and called me. We found out the week before that the cancer had increased by 20% in the past month and she was calling to see how I was feeling. She wanted to know if there was an increase in my symptoms, fever, night sweats, weight loss, etc., but all I could focus on was how different she sounded. There was a hesitation in her voice that I had never heard before. I nudged her to tell me what was on her mind, reminding her of our agreement of full disclosure.
“Well, remember how I submitted a search last week after your results… I’ve received a response that there is a partial match, 9 out 10…” I interrupted her, “Great, what are the next steps!”
She paused and then continued, “I’m sorry but the person has declined to be a donor. I’m working with…blah blah blah”
I didn’t hear anything after that point. Tears streamed down my face.
I cried, for the first time, about my health. I guess my tear ducts work after all…
I had prepared myself for just about everything over the past 6 months, or so I thought. I knew that in the South Asian community there’s a high chance that the donor could decline to proceed, but it never occurred to me that I should prepare myself for this before finding a match. I never thought I would hear that I have a match AND that they don’t want to be a donor in the same conversation.
It’s been a few months since the day of my heartbreak. The wound has healed but I am left with a scar. Not one of those scars you can easily see…it is hidden deep. You may catch it in a glimpse of my eye, feel it in a hug or even catch it in a smile I use to hide it. It’ll always be with me.
This is the first time I’m really speaking about this and in a very public way at that. Obviously this is very personal, and there’s a vulnerability that comes with sharing this that can’t be taken back. I haven’t really spoken about that day since it happened. Not even with my family or closest friends. They have their own scar, their own heartbreak – and I would never want to trigger any pain, anger or frustration in them.
However, as I see how the Join the Fight campaign has spread and the overwhelming support and love it has received, I am reminded that we are in a unique position to educate by sharing our experiences. And if being vulnerable in front of all of you can change one person’s mind to become a committed donor, it is worth it.
I hope nobody is forced to experience the type of heartbreak we have faced. But if they are, I hope they are lucky enough to find themselves surrounded by people like you, by the 600+ people (and counting) who have joined the fight in the past 4 days. I hope our efforts to spread awareness and educate people on becoming a donor increase the number of registrations, matches, and ultimately, successful transplants.
* Image found via Google Images, attributed to http://www.psychologytoday.com.
Dear Ekta, I do agry with Madhuri that things do happen for a reason. May be you need to look for other avenues. You proable know by now that DATRIWORLD.ORG is the organisation that has been recruiting hundreds of volunturing donors for the registry. If you have not contaced them yet, you may want to contact them. I work with Gulf Coast Marrow Donor program and do recruitment and retention in the South Asian community in Houston and close by areas. I speak with many registered people every day and unfortunately the number of people who decline are usually more than who agree to go forward with their commitment. But definately there is definately significant improvement in last couple of years. We share donors/recipient and patients information on our website. I would like to share your information too if that’s okay with you.
Feel free to give me call at 281-780-1379, if I can be of any help.
Hi Gaytri, thanks for sharing. We are working with Datri as well as MDRI, the Indian registries. We weren’t familiar with Gulf Coast Marrow Donor program though. If there’s anything we can do to help promote any of your events/drives, please let us know. Thanks again for sharing. It means a lot.
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Dear Ekta, Sorry to hear about you heartbreak. When a Caucasian donor matches the chance of that donor coming forward to donate is upward of 70%. However, when an Asian matches the chance of donor coming forward is less than 35%. What can be done to improve that number remains a big challenge. Some of the reasons large number of Asian does not donate are: 1. During a bone marrow drive one may feel emotional and register, everyone else is doing it so why not? 2. Some donors may have been motivated by an appeal from a particular patient – cute kid, someone they know or identify with etc., So when the time comes if that particular person is not looking they are not interested in saving the life. 3. Some patients specifically recruit for themselves. Tell the donor that if they do not match for that particular patient to deregister. 4. Flat out ignorance about the risks involved in donating. Instead of asking details about donation procedure they simply go in hiding. Regardless of the reason it happens we all need to do a better job of educating fellow Asian your article is definitely a great way to let them see it from the perspective of a patient and his/her family. Good luck. Let us hope you find another match, this time with someone who has a big heart. ~firstname.lastname@example.org
Dear Ekata, Sorry to learn that a matching donor declined to donate. Many years ago, when there were about 200/300 South Asians in the registry, few came up as a match for my husband and all of them said that they had registered for someone else and they wished to be removed from the database. We were devastated. However, I think things happen for a reason. Because there were no matches for my husband we were forced to look for other avenues for his survival and we were accepted in a clinical trial. Today, the same drug is a reg treatment for CML. I have so many such stories that I have personally witnessed, so don’t give up hope. I work with A3M. http://www.a3mHOPE.org. we recruit donors in the South Asian communities in S. Cal. Do give us a call at (213) 625 2802 ext:112 we would like to help.