Monday, December 30, 2013

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.

Friday, December 27, 2013

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)
- 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.

Thursday, December 19, 2013

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.

Monday, December 2, 2013

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.