Wednesday, October 30, 2013

Waiting Still...

The search for my fully matched unrelated donor is still ongoing.  Whatever awaits on the other side, I give it all to God.

Having bone marrow failure is a solitary road. Most of the time, people I know do not understand what I go through - psychologically, emotionally and physically. Now that my journey's turning point is at hand, I am lonelier than ever. The wait for finding my match feels like an eternity, and I get fearful as my doctor mentioned that the list is winding down.

Yesterday, I got my 14th transfusion.

Not a day goes by that I think of the possibility of death, leaving my love ones behind or not making it through the treatment. Not a day goes by that I think there's a reason for this suffering. Not a day goes by that I push myself to be positive and to remain hopeful. Not a day goes by that I hope for the happiness awaiting on the other side. Not a day goes by that I dream of being healthy again. These days, even the dream of dreaming to be happy is like an obstacle course.

The other side is the place I yearn for. The other side is the opposite of where I am today. The other side is the place of cure, health and finally - a smile.

I want to smile again.

Friday, October 4, 2013

New Normalcy

It has been a struggle to find some type of normalcy in my life these days.

I'm still struggling, but every day, I find something that helps ease my pain and discomfort. At first, I cried a lot. I still cry to let out the fear and stress, but now I've been finding more and more inspiration to fight back.

How do you find peace in times of turmoil?
  • Prayers: Whenever fear comes knocking, I slam the door of prayer and faith. I learned to trust Him, and that He has good plans for me.
  • Family & Friends: I talk to family and friends. I cry on my husband's shoulder. I write letters and send cards to feel that there's a connection, that I am not alone in this fight.  Facebook? Yes, I write and chat with my friends on FB a lot.
  • Read: I ditched the serious books and started reading light-hearted and positive books. I even picked up children's books because they contain lessons on hope, happiness and kindness.
  • Write: Whenever I feel inspired, I write on my journal. Writing has been a wonderful outlet for me, and that's one reason why I started to blog specifically for this journey.
  • Do Something: Having a rare disease is not easy, so I imagined how scared others are too especially the newly diagnosed ones. I started a Facebook page dedicated on disseminating information on these rare diseases and the URGENT need for minority bone marrow donors. Please join my FB page here and help me share the information.
  • A Good Cry: Once in a while, a good cry is all it takes to ease a burdened heart.
  • Inspiration: I find inspiration in everything I do, see and feel. I post quotes all over our room so that I can read something encouraging whatever I'm doing.
Today, I share a quote from Maya Angelou. She's been a source of inspiration for me. Ms. Angelou is also dealing with COPD yet this woman is unwavering.

The ship of my life may or may not be sailing on calm and amiable seas. The challenging days of my existence may or may not be bright and promising. Stormy or sunny days, glorious or lonely nights, I maintain an attitude of gratitude. If I insist on being pessimistic, there is always tomorrow. Today I am blessed.

Thursday, October 3, 2013

Uncharted Territory

I sat underneath a tree and the world kept moving without hesitation.

What they say is true, you can be the loneliest person even in one of the busiest cities in the world.

People I know are out there planning their lives, while I'm planning for the unknown. Does the word "future" still exist for me? On days I feel like shopping, I'd stop myself from buying clothes because I'd question if I'd still be alive long enough to wear them.

I've been crying a lot. I am also scared, but the scariest are still to come. I've decided to push through with the bone marrow transplant (BMT). My doctor said, "Soon, the blood and platelet transfusions will stop working. So it's either you do it or die." I appreciate my doctor's bluntness, as it puts things in perspective. 

The past few weeks have been spent consulting with two transplant centers - Baltimore and New York.  I've decided to have the treatment closer to home - Baltimore. The transplant consultations took a lot out of me. My stress and anxiety are through the roof hearing all the new terminology - chemotherapy, radiation, side effects, graft versus host disease (GVHD), isolation, loss of hair, fatigue etc. These will be the words that would accompany my journey.

Difficult as it may seem (and it is really difficult), I try to look for the silver lining:

  • I have a chance to be cured
  • I have 43 in the US, 143 international - donors in the preliminary search
  • I have a loving husband that supports and uplifts me
  • My family's support and prayers
  • My friends' unceasing messages and prayers
  • My employer's support and acceptance of my new situation
  • I found a compassionate, understanding doctor
  • God will see me through this journey
  • And MORE!!!

Sometimes, I still feel this Aplastic Anemia/MDS thing is a dream, and how I wish it has never come to me.

A Summary Of Things

Aplastic Anemia was foreign to me.  I have not even heard of it until it landed on my doorstep.

2006: The Beginning

It was a rainy day. I just started working right after college and I was happy to use my medical insurance and get my annual check-up. After blood work, I drove home hoping not to hear from my doctor. After all, no news is good news; I was wrong. About two hours after I got home, doctor's office called informing me that my platelets are low and I need to see a Hematologist.

That same week, I went to see Dr. M. She performed a bone marrow biopsy; I cried. She gave me a thorough examination then sent me for a CAT scan and a Nuclear Med Scan. She said she wanted to be thorough so that we can find out what's causing my low platelet count.  I was initially diagnosed with idiopathic thrombocytopenic purpura (ITP). It meant I have low platelets with no known cause.

2006-2008: Sit and Wait

This years I'd call the "sit and wait." There wasn't much that we could do but watch my platelets. At that time, the National Institute of Health (NIH) said that my counts are still stable and I could not qualify for any of their clinical trials.

2009-2011: Danazol Protocol and Genetic Mutation

My platelet counts were now hovering in the 20s. My Hematologist said, "It's time."

Time for what?

I was back at NIH, and the doctors there enrolled me in the Danazol Protocol. The main reason why I was chosen for this protocol is because they suspect that my short telomeres (tails of my chromoromes) are the ones causing my low platelet count.  Apparently, my telomeres are abnormally shorter than what they should be.

Oh my God, I am a mutant!

The Danazol worked for sometime. The highest platelet count I got was 40, then it was downhill from there.

2012: Hemangioma Later

I developed a Hemangioma on my left leg.

Doctors weren't sure, but they suspected that I have a hemangioma already even before I started taking Danazol.  Suspicion was that, the Danazol encouraged the growth of my hemangioma. Since my platelet count was not improving anymore, they thought the hemangioma was causing my low count.  I had to be taken off the Danazol.  My hemangioma decreased in size almost suddenly.

Goodbye Danazol!

2013: Transfusions

This year, my counts are the lowest and that's including my red blood cells. I am now needing weekly platelet transfusions and every three weeks transfusion for red blood cells. It's a rough time, and this is also the time my doctors recommended I should push through with a bone marrow transplant (BMT).

I cried. I cried so much that it hurts. Where do I go from here?

September 25, 2013

I decided to go through a bone marrow transplant. The search for a donor commenced.