Aftershocks

There's a lot of misconceptions about my bone-marrow transplant (BMT) and my life after it. Some people I know think it's surgery and that after a BMT everything goes back to normal.

No and No.

It's not surgery, not even close. It's more of a long drawn out transfusion. Heck, it is transfusion except that that bag is filled with blood and marrow. The infusion is long - mine took six hours to infuse. Day 0, referred as the D-Day of transplant, was long and tedious. I spent my day waiting and sleeping in my room. I also had mixed emotions - worry, nervousness, restlessness and fatigue because there's always a chance that my donor would back out. I could only give a sigh of relief when the delivery lady arrived with a huge bag of marrow donation. I was in tears when I saw my donor's bag of marrow. I can't tell if those were tears of joy or tears of sadness. Joy because someone, a complete stranger, donated his marrow for me and sadness because I still couldn't comprehend the magnitude of what I am and are about to go through - which takes us to life after a BMT.

What is normal after a BMT? This is a tough question because in my experience, normal is not "normal" anymore - physically, emotionally and psychologically.

• My skin is dry and my skin gets sunburnt easily due to chemo. I have to wear sunscreen for life.
• My stomach is super sensitive, so I have to be very careful with my meals. I seem to have developed Lactose intolerance. Doctor said my donor might have passed it to me.
• I have a mild skin Graft-vs-host disease.
• I get tired easily. Fatigue is a word I often feel.
• My emotions are on a roller coaster ride. Sometimes I feel happy and out of nowhere, I feel sad and depressed. Fear sometimes grips me. Anxiety comes attacking in the morning, day or night.
• I have no patience and I tend to snap at times.
• I am very sensitive, and there are times I cry for no reason.
• I forget a lot of things. Doctor said it's chemo brain.
• I also suffer from lack of concentration. Reading a book is a challenge now compared to before my BMT that I could seat all afternoon and finished a novel.
• There's a lingering feeling of loss - loss of time, loss of self, loss of who I am and what I want to be.

I am not sure if these are temporary changes or will they stick with me forever.

Day +138: Rainy Days And Steroids

Today, I am day +138.

Recovery is going well except for this annoying mild skin graft-vs-host disease (GVHD). It's mild but the itchiness is annoying. I am not looking forward to the summer heat and humidity because the past two humid days, my skin was so itchy and I was miserable.

Last week, my doctor decided to put me on a low dose of Prednisone to treat my skin GVHD. I've been taking it for six days and it's really helping with the skin rash and itchiness. I really don't want to be on steroids for a long time, as it makes me feel crappy, but since this is a low dose, it's very well tolerable. I am hoping this will really help with my skin GVHD.

Although I am taking a low dose of Prednisone, I've noticed that my vision has been blurry. Also, my head feels fuzzy and heavy most of the time. I am not so sure if these symptoms are from the steroids or just allergies. My major concern now is getting this skin GVHD treated.

Well, it's a short update from me. Most days, I feel close to normal, but I am taking things slowly. My hair is slowly growing, and my appetite is slowly getting better. Although there are many things I can't eat yet, I am happy that my taste buds are almost back to normal. Life can be miserable when your taste buds are out of whack.

It's rainy. No matter what the weather's like, I am thankful.

Today is a good day to bake some Chocolate and Apricot Squares.

Of Home And Sampaguitas

Read my latest update HERE.

Thank you for reading.

Steve

We were driving to Mt. Airy to check out a yard sale when Mom got a call.

"Steve died last night!"

We froze. Mom was speechless.

We met Steve and his wife, when I was getting chemo at the hospital. I was in the midst of my treatment when he started his. At that time, we were both getting a bone-marrow transplant (BMT). I was being treated for Aplastic Anemia and he was being treated for MDS. I think our families bonded because we were all going through a difficult journey. While I was quarantined in my room, my parents would spent hours chatting with Steve's wife.

Although our families have not kept in contact since I was discharged, aside from the occasional short talks when we ran to each other at the hospital for our weekly check-ups, the news of his death plunged a deep dagger of pain and sadness in my heart. Perhaps because I have an idea of what he went through especially that our treatment were similar. Perhaps because I know that surviving a bone-marrow transplant process doesn't guarantee full remission. Perhaps because I understand that we're here for just a short time and anything, I mean anything can happen from this moment to the next. Perhaps because I realized that for anyone who faces a life-threatening disease, death is a possibility.

I don't remember when, but the last time I saw Steve was when he was standing in front of the pharmacy waiting for his meds. He looked well and strong. I was chatting with his wife at that time and he looked like he was on track to full recovery. According to his wife, Steve survived prostate and stomach cancer. The MDS was caused by the harsh chemotherapy treatments he received for both diseases.

Steve is a true survivor. Having survived two cancers, he didn't concede to defeat. While going through chemo, he and his wife were inseparable. He'd go to the grocery store wearing a mask with his wife. He was strength in times of weakness.

We meet people for a reason and purpose.

I saw him as a symbol of strength and survival. He neither let cancer rule his life nor take his will to survive. He kept fighting until the end.

I pray for Steve and his family. That they may find comfort and strength in this difficult time.

Today, I am +126 days old from transplant.

Day +120: Biking By The Bay

My latest update HERE.

Thank you for reading.

Hello Spring!

Read my latest update HERE.

Day +99: Easter

Happy Easter!

There are no coincidences!

I'm exactly +99 days today and it's also Easter. Easter is a day of rebirth, renewal and the beginning of a new life. Going through something traumatic, such as a bone-marrow transplant, this day is symbolic and auspicious. Through my donor, I've been given a new life - a second chance to be with my family and friends. Through Easter, we remember Christ's resurrection from death; through Christ's death we were redeemed and by this resurrection we are given hope and strength. I am not trying to be preachy, but all of these, Easter, +99 days and spring, are bringing a deeper personal meaning to me.

In retrospect, I am beginning to understand that being given a new lease in life, I am more appreciative of every morning I get to see the sunrise, get to be with my husband and family, enjoy sipping a cup of tea even on a grey and rainy day, love the smell the fragrant flowers blooming on our backyard and more.

Coincidence is just a word and it has lost its meaning to me. Tomorrow, you'll better understand why I say that.

Day +68: Thoughts

And the sun came out...

It's been cold and grey the past few days. I've been missing the warmth and light of the sun, but today, I'm so happy because the skies are blue and the sun shone all day. The trees are still bare, but after a cold and menacing winter, hope springs eternal - the Cherry Blossom on the front yard is full of buds.

Sometimes, I still wonder why "this" happened to me, but I know now that, that is a useless question. During my hospital stay, I've seen children as young as three getting chemo and radiation and the elderly going through the same process I went through. I mean, what did a three-year-old do to deserve and endure such pain and suffering? I've realized that it is not the things we do or believe in that cause these things, but suffering as well as happiness are a part of life. Without both, life won't have meaning at all.

Every person's journey is different.

Overcomer

Time flies! I can't believe it's March already.

I know a lot of things have changed.  Pre-transplant, I thought that was "it". You know, the "end." Now, I could see hope and future. It may be premature to say such things since I am only on Day +52, but I am feeling a lot better physically and emotionally. Of course there are days my fears swallow me and send me to depression, but I try my best to fight back.

This Friday, March 7, is a big day. I will have a bone-marrow biopsy and have my hickman port removed. I am both nervous and excited about going home. I will truly miss my doctors and nurses on the fourth floor, as my care will be transferred to my primary oncologist. I won't be on a 24-hour watch anymore, so this will take some adjustments when I'll get settled at home.

I used to be better with words, but these days words fail me and I'm better at bottling my thoughts inside. I don't know if it's the fear of opening or being misunderstood. I guess I'll have to sit tight and wait for words to flow naturally once again.

And to anyone who is going through the toughest times of their lives, this song is for you.

Valentine's Day

Happy Valentine's Day, Kayni!

Those were my husband's first words of the day. No cards, no flowers and no presents, but they're the sweetest words I've ever heard.  My husband, family and friends are my wonderful gifts this Valentine's Day. They've been my support and source of strength.

I give most credit to my husband who's been with me every single day, 24 hours each day since I've been admitted for my BMT.

For my husband, you're the sweetest and best husband one could ever have.

I LOVE YOU! You are my Valentine - always!

(Photo Credit: http://www.cudsly.com/)

To the few who still read my blog, thank you and Happy Valentine's Day!

The Day I Lost My Hair

Today, I shaved my head bald.

The past few days have been routine check-ups and making sure my body is getting all the meds and nutrients it needs. Since my immune system is totally out, I am on several antibiotics keeping my body safe for the time being; I have a lot of meds and they're for anti-rejection, anti nausea and more. I also have to wear a heavy respirator and surgical mask whenever I'm going around the hospital. It's hard to breathe in those masks and that's one reason I'm out of breath most of the time when we're out walking.

In addition to crazy masks and meds, chemo's side effects have started to show. Chemo does a lot of crazy things to your body. My skin is so dry and no matter how much lotion I slather, my skin still comes out flaky. My skin pigmentation is darker now, and most recently, my hair has started to fall off. This morning, I actually panicked when a bunch of my hair came off while showering. I screamed and Kepi had to come check on me if I was alright. I was upset and scared.

Kepi and I decided it's time to get it shaved to avoid another incident tomorrow morning. There's a salon that offers complimentary haircut for patients at the hospital. We called them up and they got me in at 2 PM.  Right after my doctor's appointments, we headed straight to the salon.

I was close to tears while my head was being shaved, but I decided not to. I thought this is a beginning, a phase of letting go of the past and putting my feet forward to a better future. My hair falling out is a symbol of my disease leaving me. A new and better hair will replace the old - a new, healthier life will replace the old.

All this hair came off today.

Kepi and I bought two hats - one for sleeping and one for outdoors. The ladies at the salon were really nice and helped me fit a few hats.

I am still getting used to my bald head and I know I'll be ok. It just takes some getting used to.

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.

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.

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.