Home Away From Home

Today, I feel conflicted, angry, sad, tearful… I never thought all these emotions could be felt at once.

My husband and I have checked-in at the Hackerman-Patz Patient and Family Pavilion. A mixed of raw emotions came over me as we entered our apartment. I couldn't help but cry. I asked, "How did we ever get here?"

Our apartment is very small - a kitchenette, a combined living room and dining room and two twin beds in the bedroom, but we'll make do for the time being. We're lucky to have a place to stay while I undergo treatment. At least, my husband will have a place to clean-up, rest and relax while I'll be confined at the hospital for three days.

The lady at the front desk handed my husband a small but meaningful welcome package, and I really appreciate it. In tough times, even the tiniest gesture of kindness means a lot. The welcome package is from the Kara Foundation. Thank you, Kara Foundation!

The welcome package - toiletries, snacks, bottled water, lip gloss, sweets and a stationery set. 

Included in the package is this book, Healing Light, full of encouraging poetry and colorful illustrations and a stationery set to write my own poetry as well.

Tomorrow, I have another day of transfusions. After my infusion, we will be driving home to Damascus to spend New Year's Eve with my parents. Then drive back to Baltimore to start my treatment on New Year's Day, January 1st.

Consent Forms Signed

As usual, I had platelets and red cells infusions; I don't even know how many transfusions I've had anymore.

Today, I also signed my consent papers to go through with the bone-marrow transplant. Dr. B walked us through the signing of consent papers, and the oncology nurse also discussed the expected side-effects of anti-thymocyte globulin (ATG), chemotherapy and full body radiation. It was a LOT to take and the information overwhelming.

The road looks tough. I think that reality is finally setting in, and there are times that fear takes over the better part of me. There's a lot of uncertainty, but life is full of uncertainties even to those who doesn't have to travel the same road I'm taking.

Just to give you an idea of BMT preparation, here's a list of what I went through for the past three days:

- lots of blood work
- bone marrow biopsy (don't like it)
- infusion of platelets and red cells
- scans (different types)
- pulmonary function test (this is my least favorite)
- echocardiogram (ultra-sound of the heart)
- EKG
- full body radiation simulation
- met my transplant doctor
- met the oncology nurse

Each day was long and exhausting.

Aside from all these medical tests, we also had to temporary house Dizzy, our cat, at a friend's house because pets are not allowed during the recovery period. We miss Dizzy so much :(.

The road to getting better will start on January 1st.

BMT Prep Tests Begin

It's 3:22 AM and I can't sleep.

Yesterday, my coworkers and I had our holiday lunch, and it really bothered me because I had to say goodbye to my immediate boss; she's going on vacation and my last day of work would be on the 23rd. I think what really scares me is the uncertainty of what lies ahead. There's no way of knowing what will happen next. My hope is to get cured, pick up where I left off and get on with my life but sometimes the "what ifs" get the better part of me.

The holidays approaching makes everything harder too. It's so hard to get into the Christmas spirit with the twice a week transfusions. People keep saying that I should try to look at the positive side, but I kid you not, it's easier said than done. I sometimes wonder how a rare disease chooses its victims. There's that person who smoked since he was 17 and doesn't get sick a day in his life, maybe a cold here and there but that's it. Here I am, I don't smoke or drink, yet I am in the sickest phase in my life. It's really UNFAIR.

Today, I will be spending much of my day at the hospital.  My husband and I will be attending a BMT class in the morning after my labs. Then there's the pulmonary function test and EKG in the afternoon. These are all test preparations for the BMT.

I am getting tired of these hospital trips.

It's now 3:52 AM and I'm still not sleepy.

Thanksgiving Worth Remembering

My doctor gave me Friday, Nov. 29, as a day off from my regular twice-a-week transfusions. It seems that my body is now holding on to my platelets longer. I attribute that to the IVIG treatment I was given. Also, I no longer bruise easily which is a relief. I get so unhappy when my body is covered with bruises and the horrible looking petechiae.

Recently, I don't like how my photos look. I noticed that I look so old, tired and haggard.

On Wednesday, Nov. 27, I got an e-mail from Miss R, my BMT case manager, that a donor has confirmed. I cried. My coworkers were so elated and they hugged me. We cried.

I knew a week or two earlier that we had two possible 9/10 donors, but we were still waiting for a confirmation. I didn't want to either keep my hopes up or write about them on my blog, as I think it was too early. Also, a donor can choose not to donate at all.

With a hopeful heart, I packed my clothes as we, my parents, husband and I, were Atlantic City (AC) bound to spend Thanksgiving there. We thought we needed a break from our routine; We needed to get away from the things that makes us sad. During our drive to AC, Miss R sent me another e-mail confirming that we have a harvest date - meaning my donor has agreed to have her/his bone marrow harvested on a certain date.

I was astounded. It was hard to comprehend how my Thanksgiving is shaping or should I say becoming a true embodiment of gratitude: Gratitude to God; Gratitude to my donor's kindness; and, Gratitude to my supportive family and friends. I know I have a long way to go, but this is one of the biggest steps to getting a cure.

Truly, I am lost for words but deep inside, the truest form of "gratitude" beats within my heart. I have no words to fully describe it.

Yes, my donor is not a full match (10/10) and this will involve a bigger chance for graft-vs-host disease (GVHD). GVHD "is a complication that can occur after a stem cell or bone marrow transplant in which the newly transplanted donor cells attack the transplant recipient's body" (NIH). This is my biggest worry, but for now, I will dwell on the spirit of gratitude.

For truly, God has taken me this far and I know He will see me through recovery.

Hugs from chilly Washington D.C.

IVIG Infusion

Yesterday was a long day!

It took almost three hours for my IVIG infusion. Then my doctor decided to give me two more bags of platelets. We arrived at the hospital at around 10 AM and we left at about 4:45 PM. I felt so tired and my head was woozy from the pre-medication they gave me. The IVIG is supposed to help my body keep the platelets longer. It seemed to work as my post platelet count after infusion went up to 67,000. Although it's a temporary fix, it's a bit of good news.

Dr. D came by to see me during the infusion. She's decided to move my transplant to January 2014 as there's a hold up in the donor search. I felt a bit sad that I'm not getting treatment the soonest, but I was also glad that I'll be spending Christmas at home with my family.

To whoever is reading this blog, please pray that my donor is found soon.

A Grateful Post

Today, a special gift from California arrived. The present neither came wrapped in glittery paper nor adorned with colorful ribbons. In fact, they came in simple, cold, translucent bags. Although simple and unadorned, these bags brought the best gift of all - LIFE.

This post is for my California platelet donor, whoever you are, you have my lasting gratitude for responding to my need of platelets. Platelet donations are tougher compared to donating blood, and I admire you for going through it. Thank you so much for your gift of life. 

A HEARTFELT THANK YOU TO ALL BLOOD AND BONE MARROW DONORS!

I've been waiting for matched platelets for almost a week now.  Since bleeding from my bone marrow biopsy procedure, my transplant team has been on the phone looking for matched platelets out-of-state. Surviving with just 1,000 platelets the past few days has been rough. I've been trapped at home and was not allowed to help in the kitchen especially in preparing and cooking food. My body is now covered in bruises and petechiae but I am hoping that some of these would clear up by tomorrow. The toughest of all is the psychological challenge of keeping my wits together in such a vulnerable and weak state.

For now, my transplant team has to keep finding me carefully matched platelets. My doctor also mentioned about putting me on Intravenous Immunoglobulin (IVIG) to keep/control my antibodies from attacking my own platelets and infused platelets.

It's another cold day in Maryland. Keep warm and always keep a grateful heart.

1,000 Platelets

Can a person walk around with just 1,000 platelets? Yes, it is possible. 

Since my body has rejected the last platelet transfusion I received on Friday, November 8, I have been functioning with just 1,000 platelets. Of course, I have to be very careful with everything I do; I'm not even allowed to drive. Apparently, my platelet match has to come all the way from California and won't arrive until Saturday, November 16.  For now, 1,000 platelets is all I have.

My situation makes me feel nervous, but deep within there's an assuring feeling that I'll be okay. I am thankful for my blood and platelet donors. I am also grateful to my future bone marrow donor.

To those who are able, please take the time to donate blood or platelets. You might never receive a personal "thank you" from the person getting them, but I assure you that the blood/platelet recipient knows how much you go through to donate blood - most especially platelets.  As a recipient of numerous transfusions now, my sincerest thank you to all blood and marrow donors. Without you, I won't be here.

BLOOD AND MARROW DONORS ROCK!!!

Writing with a grateful heart and blogging from the Infusion Room, Johns Hopkins.

It's a cold, cold day in Baltimore.

It's All About Blood

Yesterday was supposed to be a quick visit to the hospital. I'd do my usual labs in the morning, platelet or red blood cells transfusions and a bone marrow biopsy.  Everything went as planned except after the bone marrow biopsy.

The nurse discharged me after the biopsy and although I was still feeling woozy from the sedation, I happily hopped off my hospital bed to get going and get something to eat. Little did I know that as Kepi and I decided to get some hotdogs on the other side of road, I felt something damp on my back. I dismissed it and decided to cross the street anyway; I was really famished as I haven't had food since dinner the night before. As we got back to the hospital's lobby, the damp feeling on my back kept nagging me. I decided to take off my coat and have Kepi check my back.  It was blood.

Kepi and I rushed back to the procedure room and found the nurse who discharged me.  She immediately took me back to one of the rooms and started applying pressure on the biopsy site.  I was scared but thank God the bleeding stopped.  Who would have known that such occurrence came to be a blessing in disguise.

My transplant doctor arrived a few minutes later and informed me that my platelet transfusion did not bump up my count at all.  She told me that my body is "choosy" and that my donor has to be screened and matched thoroughly in order to find that my donor's platelets matches my system.  If that even makes sense; I was blown away. Anyway, I spent the night at the hospital for overnight observation. I didn't sleep that well, as the nurses kept checking on me every after four hours.

I am now home. I have to be extra careful as I am walking with just 1,000 platelets and I have a bit of bruising all over my body. I'd have to wait until Tuesday to get another platelet transfusion. For now, I have a pill that I can take in case I have a bleeding problem.

It is a wonderful feeling to know that I am still here. By the way, the stitches came off from my Hickman Port site; it is healing quite well.

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.

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.

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.