Second BMT Re-Birthday!

Today, I'm celebrating my second re-birthday from a bone-marrow transplant (BMT) that took place on January 11, 2013. If you're interested about my BMT journey, it's here.

Thank you to my family, friends and my BMT medical team for all their help and support.

Most of all, THANK YOU to my unrelated donor for giving me the gift of life.

Of Walls And Tears

It's a dreary, drizzly Saturday.

Kepi just lighted the fireplace, and I could hear wood crackling as the fire devours the pile. Today, I'm enjoying the company of Kepi, Daisy and Dizzy. I treasure days like this - quiet and relaxing.

Yesterday was a different story. It was a day of medical tests and the ever dreadful bone-marrow biopsy. What really surprised me (and made me emotional) was that they've started performing the biopsies at the floor where I got my ATG and chemo treatment.

The walls were like pages in a diary. Every minute I was there, the memories of my bone-marrow transplant flooded my emotions. It was those same walls that witnessed the most terrifying, painful and challenging days of my life.

Yesterday, the same walls welcomed me back and recognized that I am still fighting and standing. Because life is always worth fighting for.

Tears poured after my biopsy.

Chatting with the nurses and technician before my bone-marrow biopsy.

Graduate Finally

The past couple of weeks have been busy; I'd say good busy.

Last week, cousin A and I walked all over DC covering the White House to the National Mall and we managed to squeeze in a day visit to the Gettysburg National Park. We were so tired but happy. Nights were spent recuperating from exhaustion and sore muscles.

Although A's visit was short (two days), we got to talk a lot about our dads, they're brothers.  In the vast span of our 30s (she's 30 I'm 30ish), we've only met twice.  It's interesting how I felt close to her despite the lack thereof of us growing up as neighbors like the other cousins I'm close with. Anyway, I'm so glad we got this chance, and I'm hoping we'll make time to see each other more.

On the same week, my parents flew in from Honolulu. I was so happy to see them and of course looked forward to my island favorites - chocolate covered Macadamia nuts and my Portuguese sausages. If given the flexibility/opportunity at the moment, I'd love to go back to Hawaii and live there.

Of course, the highlight of last week was my graduation. Wohooo, I'm finally finished with my masters in international affairs. The next question is, "What am I going to do with it?" No worries, I'm figuring that out right now.  Funny but I'm more excited about getting my free time and weekends back.

Taken on May 15, 2015 at Healy Hall, Georgetown University

Excerpt from my online album, "My heart is filled with gratitude and joy. My journey has been deterred by aplastic anemia, numerous blood transfusions, a bone-marrow transplant and most recently shingles. There were days I came really close to giving up, but the support of my family and friends kept me inspired.

This day is about faith in God when nothing is certain, hope when life throws curve balls, courage when nothing makes sense, and victory over any challenges that will knock on my doorstep. Thank you to my bone marrow donor. I would not be here without you. This day is a gift and no one can take it away from me."

IVIG Infusion

My latest update at kayni's bone marrow - please click HERE.

A Grateful Post

My latest update at kayni's bone marrow - please click HERE.

1,000 Platelets

My latest update at kayni's bone marrow - please click HERE.

Waiting Angry

Yesterday, Dr. D walked into my infusion room. After the unnecessary nice chit-chat, she dropped a bomb. "We're having a hard time finding you a matched donor. Could we test your parents and siblings again?" My heart fell and my hopes to be cured began to wither.

Truly, life has a way of throwing curve balls. I feel like I've been dodging them ever since. Waiting for a donor is a painful process. During the preliminary search, my doctors at NIH said I have possible 132 donors in the US alone and an additional 130 in the international registry. So what happened? Is Dr. D saying that none of these donors match me fully?

I was so angry yesterday. Having a bone-marrow failure really is a test of mind and body, and I feel like I am being pushed to my limit. My patience is so short I could snap at anybody or anyone. I feel that my disease is changing me.

Kepi did offer a calmer perspective that "Dr. D is just making sure there's a plan B in placed in case a fully matched unrelated donor is not found." Perhaps but I didn't want to hear a plan B. I want a non-experimental approach to my cure. I want to be cured period.

Anyway, I am back to being frantic and worried again.  I seriously need some good news today or in the next few days.

A Friday Thought

I seem to be getting my blogging spirit back but that's probably because I need an outlet or a place to vent. I am yearning for a place - a safe place that no illness can reach.

Preparations for the bone marrow transplant is rolling as we speak. The hospital sent me a message that HLA testing results should be in by next week. After that, they'd be able to identify my 10/10 match.  I am praying they'd find him/her soon, and I hope he/she will say, "Yes".

Timing is a bit off because if my calculation is right, I'll be admitted at the hospital by late November or early December. I dread spending Christmas at the hospital. It won't be easy not being home during the holidays especially that I'll be spending at least four to six weeks in there.

On another thought, I wanted to write about my transplant experience on this blog, but since my husband's company wants to set up bone marrow drives in the area, I had to start a new blog for them to use for their campaign. (I didn't like the idea of my husband's coworkers reading about our personal stuff so I'm keeping this blog just for us.)

So if you'd be interested to follow my bone marrow journey, please follow me here - kayni's bone marrow. I also started a Facebook page to create awareness on rare diseases and the urgent need for minority bone marrow donors, please help me disseminate information by liking this Facebook Page. This is the least I can do for now. This page will also publish current bone marrow drives going on in the area.

I wish everyone a happy Friday and a great weekend. Thank you for all the encouraging comments, please keep them coming.

Uncharted Territory

I am now traversing in 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. THANK YOU, KEPI!
• 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.

Where Do I Go From Here?

I was really contemplating if I should be writing at the moment. I don't really want to bother anyone about my health struggles but I need to write to keep my sanity.  This is the lowest point in my life, and if I understood it right, my blog should contain both the happy and sad moments of my journey. This post and maybe future posts will contain the latter.

Last week, I was supposed to qualify for another clinical trial, but the new doctor seems unsure to take me in due to my sudden low counts. Doctor New also said that my diagnosis is now MDS and he was pushing for a bone-marrow transplant; this treatment is risky and that what's worse is that Filipinos or minorities have a harder time finding a match. Kepi and I were shocked as the news were laid out in front of us. It doesn't help that such dreadful news unfolded while I was having transfusion for 1 unit of blood and 7 units of platelets. There wasn't much I can do but cry.

MDS - is a group of disorders where your bone marrow does not work well, and the blood-forming stem cells in your bone marrow fail to make enough healthy blood cells. People with MDS can lack the right amount of red blood cells, white blood cells, and platelets (the small cells that help blood to clot).

The disease happens because the bone marrow cells do not develop into mature blood cells. Instead, these blood cells stay within the bone marrow in an immature state. The symptoms and the course of MDS may vary greatly from person to person. These differences depend on which blood cells are affected. (Definition is from the http://www.aamds.org/about/MDS.)

I cried every day since then. Emotionally, mentally and physically I am broken.

Can I say that "life is unfair"? I feel that my friends and people my age are out there having families, traveling and enjoying life, while I am stuck in this rotten place. These days, it seems that everyone I meet "anywhere" is healthy and happy. I feel alone and I am afraid.

Facing this adversity made me realize that I lived an unremarkable, uninteresting life. I will have no legacy to leave behind or have no achievement to be remembered by. 

Two Transfusions Later

A bone marrow biopsy, numerous blood work, low platelet counts, bruises all over my arms and two transfusions...  It's been a rough couple of weeks on my side, and I am not sure where the wind will direct my sails the next few weeks.

My doctors and I have decided to put my name on the Bone Marrow Registry; this is in case I need a bone marrow transplant along the way.  I never thought it would go this far, but here I am and here it is.  Honestly, I am not myself lately.  I am depressed and I am in pain.  Most of the time, my mind hovers or flies to faraway places.  I think I lost hope in the middle of everything and I am just starting to pick things up again. 

BUT what's more alarming is that when I did some research on the US Bone Marrow Registry, here's what I found out.  According to bakitwhy.com,

the 2010 U.S Census recorded that there are about 3.4 Million [F]ilipinos in the United States, taking up one of the largest populations of Asian descent here in the United States. However, according to the National Bone Marrow Registry, as of September 2011, only .6% of [F]ilipinos are registered donors, making [F]ilipinos the least represented ethnicity in the Registry. Being the least represented in the registry makes it difficult for our fellow kababayans who are seeking a bone marrow donor that could potentially save their life.(Read the article here.)

This is quite scary for me who has Aplastic Anemia and especially those who are currently in dire need of a bone marrow transplant.

So why are Filipinos and Filipino-Americans reluctant to be Bone Marrow Donors?  According to bakitwhy.com:

• They think that donating Bone Marrow can be a long and painful process
• Some just don't believe in Donating Bone Marrow.
• Some just don't know how to donate.

This blog post is both a plea and a call for Filipinos to be more proactive.

PLEASE, IF YOU ARE FILIPINO AND EVEN IF YOU'RE NOT, ASK YOUR FAMILY AND FRIENDS TO GET INVOLVED. Getting tested is a simple swab in the cheek and it won't hurt. WE NEED TO INCREASE THE FILIPINO DONORS IN THE BONE MARROW REGISTRY. 

BE THE MATCH AND GIVE THE GIFT OF LIFE.

Thank you to all who sent their love and prayers on Facebook. Your words give me hope.

If you would like to get involved and get tested, who knows, you might be my match, please click HERE.  Or type this URL on your browser - http://bethematch.org/Home.aspx.

A Short Bitter Update

In a few days, spring semester begins once again. My classes are less interesting compared to the fall, but it looks like the requirements aren't demanding as last year. Anyway, I wanted to post a short update before I get lost again in the realm of late night classes, lectures and textbooks. For the next few months, I'll miss the fun of going to bed early or having those lazy nights molding in front of the TV.

In the other aspects of life:

I have been keeping quiet about this, but today was the breaking point. I got a call from my clinical nurse that I need to repeat the bone-marrow biopsy. Imagine how I sunk into sudden depression. The reason for this repeat biopsy is because of an unexplained tumor on my left leg; I noticed the growth about a few months ago. The few weeks before my flight to Spain, I went through several tests including MRIs (twice) and a Cat Scan. The surgeon overlooking my case believes that the tumor is benign and does not like the idea of surgery because of my low platelets. So here I am again, facing another biopsy. Whatever happens, this is no longer in my hands.

Amidst the challenges in my world, the wedding plans are on-going.  Sometimes I feel that I am putting so much burden on Kepi. I am thankful he's on my side but I am also sad that he has to carry a lot of my stressful situation.

116 days to go before my wedding day.

So much that has happened and is happening are out of my control, and these remind me of a quote from the movie Lord of the Rings.

'So do I,' said Gandalf, and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.

A Zzzzzz Post

This is how I feel these days...

Source

I am now in the final two weeks of Fall semester, and I find it hard to find inspiration to finish my two semester papers.  It's hard to function when you have so many things in your mind - health, lab tests, fear, pain, anxiety and more.  I keep asking myself how I got here.  My health is my number one source of frustration, and sometimes it is tearing my inside apart.  I know I am whining, but my personality that is impatient and spontaneous does not fit the challenges of Aplastic Anemia (AA).  AA requires a lot of sit, wait and observe, and I can't stand it any longer.  I want to get well...NOW!

A Mid-October Update

Photo Source

It's mid-October and the holiday season is upon us. I am excited.

My apologies for my absence in the blogging world, as school has taken precedence in my life.  After this semester, I have one more semester then I have to write my thesis. I keep thinking a lot of you are living far more exciting lives than I am these days. I feel that while I'm stuck rotting with my textbooks, everyone seems to be doing something more fun. I miss having my free time or just traveling to some place on a whim. I miss the familiarity as well as spontaneity of travel.

I do have travel plans, but they won't take place until December. Also, it depends if my Hematologist would approve it; I remain optimistic. My platelets are in the high 20s the past three blood works, so if my count goes up, I'd be hopping on a plane to Spain. This is my second time to visit Spain, and although our port of entry is Barcelona, we will be spending most of our trip exploring Andalusia. Our itinerary is still in the planning stage, so I am hoping we will get our itinerary straightened out before our flight day arrives.

In two weeks, I am going through my fourth bone-marrow biopsy. Please keep me in your prayers and well wishes. There will be other tests that I'll go through as well. November 1st is the completion of my first year in clinical trial and the beginning of my second year treatment for my Aplastic Anemia. It's been a challenging yet enriching journey. But this is one journey I do not wish for anyone.

Here's a few more thoughts I've been mauling about:

• Christmas exchange gift with me - There were three who joined last year. I am hoping to post the announcement before this month ends, so that we can start posting our lists. This exchange gift is with me, so if you're interested to be my partner, leave me a comment.
• Have you seen "Taken 2" yet? I love it! The movie is a continuous adrenaline rush, no boring parts.
• Kepi and I went to the Sugarloaf Festival this weekend and pigged out...oink, oink. I did my little shopping for handmade crafts, but we spent most of our money on festival food - kettle popcorn, turkey leg, greek gyro, steak sandwich and ribbon fries topped with cheese, bacon bits and Japaleno. I'd love to go back to the November festival.
• October 22 marks the first year Kepi and I are engaged. Wedding plans are on-going.

My Mind Is "Some Place"

These days, I find it tough to blog.

My mind is just "some place" and although I've been wanting to update this blog, I still have tons of photos to share from my last trip, the desire is not there. Perhaps because I have so much in my mind regarding my coming treatment. For the time being, I'll post my thoughts in bullets:

• My acid reflux seems to be improving, as I am getting better in channeling my stress. Although I'm still a bit anxious about my coming treatment. Read this post in case you dont' know. I'll be seeing my hematologist this coming Monday.
• Positive thinking is still an everyday practice yet sometimes I can't help it when my mind goes astray to "what ifs."
• Six more days and Mom is here. Kepi and I have been preparing the guest room for her. I am so excited.
• This weekend, we'll be moving in some furniture. Fun stuff!
• Cleaned my closet last night and put away the summer clothes. Sweaters, knee-high socks and coats are in!
• I smell Apple picking season.
• Grad school is going well. I just need to catch up on some of my readings.
• I badly miss coffee. Coffee is a no, no if you have acid reflux. 

I hope everyone is doing well and that we're all looking forward to October.

GRATITUDE

My HEART is so FULL OF GRATITUDE because of ALL your well wishes.

I am filled with happiness and I appreciate all your encouraging comments. Please keep your prayers and well wishes coming as I start my treatment this first week of October. I'll try to keep you all updated with my progress and treatments.

I intend to keep this site as a travel blog, but if you want to keep up with my "more" personal notes and treatment progress, please swing by my other blog  kassidy's notes.

One of the greatest abilities God has given each one of us is the ability to believe. When you believe, you can be successful and overcome any difficulty. (J. Osteen)

THANK YOU SO MUCH. MAHALO. AGYAMANAK.

Dear Friends,

You may have noticed that I have not been posting much lately. It's been a rough few weeks. Apart from being taken to the ER (twice) a week ago, my platelets are at its lowest at 23. I've also been suffering with acid reflux due to stress and also found out that I have a mild bulge on my spine causing me occassional pain. I can't write that well these days, as I am still trying to understand or make sense of what's going on with my life. It's been so hard to concentrate on school while going through all these health issues, and I am hoping that I'll surpass all these challenges with the help of God and the support of family and friends.

Next month, I'll be joining a clinical trial for my aplastic anemia (AA). It's been a seat and wait for a few years with my AA but this time, my doctor and I have decided that it is time to confront it. I've been living with AA since I was 27 years old, and I do ask for your support and prayers as I begin this journey to get well. My confidence and courage are battered, and I need every ounce of support and encouragement these days.

I am scared of what is to come. I am scared of the pain. I am scared of losing my sense of self. I am scared of so many things.

I am a work in progress, and I know that God will be with me each step I take.

Blooming

I used to get impatient waiting for a flower to reach its full bloom. But as I spent one weekend at Hershey Gardens photographing the different varieties of roses, I couldn't help but be amazed at how beautiful the roses are when they're still in the process of blooming.

A rose half closed and partially opened is so appealing and intriguing. In my perspective, a rose's blooming depends on perfect timing. You cannot rush a flower to bloom. If a rose blooms too early due to unpredictable weather, there is a chance its petals will be wrinkled and damaged even before it reaches its full bloom. But, if given the right amount of time, sunlight and water, a rose will bloom beautifully and last until its peak.

"I hope you will go out and let stories happen to you, and that you will work them, water them with your blood and tears and you laugh till they bloom, till you yourself burst into bloom." (Unknown)

Such is my life, so many times I've found myself being impatient about so many things including the cure for my aplastic anemia, but obviously my impatience is hurting more than helping me. There are times I'd sit, close my eyes and lash out my impatience and anger into that vastness of space, "Why me?"

When all else fail to calm me down, I think of a rose half closed and partially opened. Maybe I'm still at that phase of blooming and that soon, everything will fall into place and I'll reach that phase where I am fully cured.

For it is in the process of blooming that I'll learn and grow the most.

ER Adventure

Who would have known that I'd end up at the ER on Wednesday? I guess there's always a first for everything, and this was my first ER adventure. My trip to the ER was more of a precautionary move, as I lost consciousness again at the train station on Tuesday evening. I hate fainting because it feels like dying especially when everything turns black and then you drop like a leaf. After fainting at the train station, I still managed to drive myself home.

It was Wednesday morning when I had the chance to report what happened to my hematologist, and so he insisted I check in to the nearest ER just to make sure there's nothing else going on. And so I spent almost the whole day at the George Washington (GW) Hospital, hooked to an IV and under observation. Apparently, my platelets went down to 35 coupled with dehydration. The doctors and nurses who looked after me were so nice. Thank you, GW!

IVs are not my favorite.

Since yesterday, my office insisted that I stay at home and recuperate the rest of the work week. So here I am, at home and resting. In an hour or so, I'm heading to see my hematologist for more tests. I guess my day is just getting exciting.

Travel And Genetics

Flowers at the historic Williamsburg.

I just had a four-day weekend, so I'm a bit reluctant to go back to work today. Saturday and Sunday were spent exploring the historic town of Williamsburg; that place never fails to enchant me. PW and I got our annual passes, so we can return and enjoy the park and museums anytime of this year. I'm so glad that summer is here (except for the humidity) because it also signals the start of summer road trips. I love going on road trips, and I'm hoping this summer will be filled with them. Travel, local or international, is such a wonderful passion because it never fails to teach me new things and appreciate what I already have.

Tuesday was spent at NIH for my usual aplastic anemia tests. I finally got my genetic test results and also got a good discussion about the possible genetic cause of my condition. I found out that aside from my aplastic anemia, I am also anemic. As of right now, they found out that my bone marrow is not producing enough platelets and white blood cells. It's not easy knowing all these because there's absolutely nothing I can do to treat my condition or even alleviate the annoying symptoms I go through almost every single day - except for the pain relievers I take as needed. I guess it is a matter of choice if I'll spend my days feeling helpless about my condition or live my life to the fullest. I choose the latter.