September 22, 2015

Braveheart by Ledi

"You may have to fight a battle more than once to win it." - Ledi

Ledi is an acute myeloid leukemia survivor residing in USA. Acute Myeloid Leukemia or AML is a relatively rare type of cancer wherein there is a rapid growth of abnormal white blood cells accumulated in the bone marrow which interfere the production of normal blood cells.

I heard her story featured in the Kwento ng Mahiwagang Burnay segment of Tambalang Balahura at Balasubas. Instead of copying the story read in the radio program, I copied the photo captions from the album entitled Braveheart shared by Ledi in her FB account. Here is the story of struggles and how she won the fight against AML.

Ilang araw na sumasakit yung right side ng puson ko. Akala ko tae lang kaya hinahayaan ko. Day by day the pain level increases so I told my mom about it. They took me to the nearest ER and the ob gyne in charge found a cyst on my right ovary. She immediately scheduled me to see my primary doctor so she can refer me to another ob gyne for the minor surgery.

Minor Surgery Schedule: June 7, 2014
The day before the sugery they have to do laboratory test (CBC). Later that night the nurse called me to cancel the surgery because there is something abnormal with my blood counts. She wants me to go back the next day for blood re-examination. I ignored what she said because I was so busy working.

June 14, 2014, my Ob Gyne called me, She immediately told me “Ledi, I’ve been trying to contact you for a week now but you’re not answering your phone. The reason why we want you to do a blood check is because you might have LEUKEMIA. Go to the hospital right now and I am going to call you back tomorrow once the results are out”. So I did what she said.

June 15, 2014 around 3pm the doctor called me at work and confirmed that I have Leukemia. I drove myself home, I was so hesitant to call my dad and deliver Him the news because its Fathers Day. But I have no choice so I called Him “Pa, may leukemia ako, dalhin mo daw ako sa Santa Barbara ER. Uwi kana. Ituwid mo isip mo wag moko iisipin habang nagddrive!”. I called my mom too.

Groshong Catheter was placed immediately in preparation for the first chemotherapy session. Another CBC was done and they did a bone marrow biopsy to check the cancer cells.

From Santa Barbara Cottage Hospital my insurance company decided to transfer me at Ronald Reagan UCLA Medical Center to do the treatment. Everything was discussed to me what to expect in getting the treatment. 

Induction Chemotherapy: 5 days of high dose chemo and 1 IV push - discharged from the hospital after 3 weeks of treatment. I got mouth sores all over my lips, mouth, all the way to my throat. I got rashes too all over my body

August 2014, Consolidation Chemotherapy: 3 high dose chemo for 5 days given every other day. Discharged immediately after chemo, I returned after a week and stayed for 3 weeks at UCLA Santa Monica for observation

My body stayed cancer free for a very short period of time. The type of leukemia that I have is very aggressive.

After 2 weeks they found cancer cells again, this time it is more aggressive. They have to schedule a salvage chemo after New Year 2015 to wash out the cancer cells.

After the biopsy, normally hindi nila nakakayanan yung pain so nagwwheelchair sila after biopsy. But ako hindi ko alam anong monster ang nasa loob ko bat nagagawa ko pang magpapicture at lumakad after biospy. Hindi rin ako nagttake ng pain killers. Yung heart shaped sa shirt ko bandang bottom right, dugo yan from my bone marrow, that time kasi kailangan nila butasan ng 2x to get good sample.

January 6, 2015 - Ready for Salvage Chemo. I was so bored so I made a little masterpiece lol. I spent most of my time walking in the hallway, looking for a playmate but I noticed I am the youngest ("They even sometimes call me “BABY”) Bonding with my guitar and cameras. I have coloring books too and a phone speaker so I can dance anytime I want. LOL

My hair grew 2 inches, but because of salvage chemo I have to "let it go, let it go” again. lol While shaving, I asked my care partner to play with my hair. 
We had fun shaving it.

Blue-green urine discoloration (Mitoxantrone side effect) - I called the nurse immediately, I thought I am going to die that something is wrong with my kidney. But yes, everythings fine. It took 3 days to get it clear again.

Isa to sa mga matinding decision na ginawa ko sa buhay ko. Gusto nila ako ang pumili kung anong klase ng transplant ang gusto ko. 

*Haploidentical Transplant (Half-Matched donor, my dad is a possible donor since 50% match kami. Di rin ako nagmatch sa mama at kuya ko)

*Double Cord Stem Cell Transplant (Unrelated donors, They combine 2 umbilical cords of new born babies to get 100% stem cells match.)

Pinili ko yung Double Cord Stem Cells Transplant. Why? Haplo Transplant can cause harm to my dad and I don’t want to involve Him sa procedure na to. The time na pinapili ako wala pa akong donor, so the coordinator told me I have to wait and I might get chemo sessions every now and then until makahanap sila ng match. I said Okay lang, kung chemo lang kayang kaya ko. 

After salvage chemo(January 30, 2015) Yung coordinator tinawagan ako sa bahay and they want me to go back after 2weeks (Feb.15, 2015) to start the transplant

As a preparation for transplant, My doctor ordered some laboratory tests to make sure that my body is well prepared for the transplant. Transplant can cause organ damage and can be fatal anytime.

After 3 days of full body radiation therapy (Killing cancer cells) - My mouth is very dry, free tanning ofcourse! LOL Okay pa ako dyan, inis na inis lang ako kasi hindi nako maka kaen ng chips at cookies 

After 4 days of chemo(wash out bone marrow) - Finally! Sabi ko last na to yes! Immune nako so wala na ko nararamdaman talaga. Minsan I ask myself "tumatalab ba?” Super excited ako kasi I have one day rest before the transplant.

TRANSPLANT DAY - It took us 4 hours to finish the transplant. FYI: HINDI SIYA SURGERY. They have to transfuse it like a regular dextrose then hahayaan lang nila magtravel sa bone marrow at maggrow. Since empty na ang bone marrow ko dahil sa chemo, sila na magsisilbing bago kong blood factory. 

During the procedure they gave me a shot of benadryl to knock me out. Pero dahil immune na ako sa droga, hindi tumalab. Nakuha ko pa sabihin sa mama ko “Ma, picturan mo ko!” Kaso namumula mama ko, alam ko na nun! Nerbyos. LOL Tumayo pako sa kalagitnaan ng transplant para magbanyo. Tapang tapangan ako pero nahigh ako sa benadryl.

One week after the transplant I can slowly feel the side effects. Nonstop anti-rejection IV and antibiotics, supplement, hydration etc. I look like a masscot because of the continuous fluid hitting my body. I got swollen face and body. 
I can’t even open my eyes. Feels like I overstayed under the sun for 12 hrs. I lost my eyelashes too with Graft vs Host disease on my skin.

After ilang days eto na. Dry na lahat pati sa loob ng katawan ko. I started vomiting blood because my esophagus and stomach is full of wounds due to dryness. I feel really really weak - I even requested a bedside commode because I can’t even walk myself to the bathroom

I spent most of my time sleeping, because IT IS PAINFUL. SERIOUSLY. Ativan and pain killers around the clock. They even put a small machine that I can press every 10 mins for pain. I raped the button every 10mins. Yes! Na adik ako sa gamot, it feels so good. Sabog pa more

Ay eto hindi ko na talaga alam to. Tinanong ko lang sa mama ko. Due to drugs I got really confused, candidate na ako sa ICU so they have to monitor my brain activity for 24 hours (MRI). Naalarma na sila nung pinatawag ko ang doctor then pagdating niya sabi ko daw “Why are you here?” Nagsidatingan mga doctor after nun mga lima ata sila inutusan ko kumuha ng kumot yung isang doctor, pagdating niya sabi ko daw “I don’t need a blanket” Alam ng mga doctor na hindi na ko normal dahil alam nila kung pano ko makiusap sa kanila, I give them my full respect. Lagi ako nakasmile sa kanila at never ako nagreklamo.

Dead nails? Yes! This is normal for blood transplants. My sense of smell and taste are also affected. I have baby hair all over my face and ears (light brown in color). My DNA is all new. My blood type O+ is now A+. I don’t have fingerprints too.

They discontinued SOME of my medications since my immune system is in good fight.

Nadischarge nako sa ospital kahit confused pa rin dahil wala naman sila nakita problem sa MRI. Tumira kami ng 1 month sa hotel close to the hospital because they still have to monitor my condition everyday. Super confused up to the point that I don’t want to wash after bowel movement. I sit in the bathtub doing nothing. When my mom went out to get breakfast, I didn’t open the door, the maintenance helped her to open the room. She found me sitting in my bed.

Every morning dinadala ko ng mama ko sa clinic for blood check and possible transfusion.

I was brought to the Emergency Room 3 times after I got discharged from the transplant. 

April 2015 - I was admitted at the hospital because of diarrhea. MRI was done because I was so confused. I urinated and pooped on the floor. I removed all the tubes connected to me. They restrained me (Tied both my arms and feet on my bed) - discharged after a week.

2nd week of May 2015 - 
Readmitted AGAIN! This time because of severe tremors due to my anti rejection drugs. Muscles are starting to get weak and the way I talk is affected too(stammering speech). Discharged after 1 week

LAST ADMISSION! - Sumusuko nako dito, Nagdecide na ako na magsign ng agreement to STOP THE TREATMENT kasi nahihirapan na talaga ako.

When my dad called me, sabi niya "Magpagamot ka. Hindi ko kaya magisip pag ganyan ang desisyon mo" Akala ko matigas nako, biglang natunaw pusu ko. Kinagabihan nagdasal ako, na sana mamatay na ko. Pero pag galaw ko sa kama bigla ko nakita magulang ko at nagdasal ako ulit "Kung masasaktan sila, lalaban na lang ako" .

Ledi (Source: Facebook Album- Braveheart)
“Life is a beautiful struggle. Cancer, I shattered you! You picked the wrong girl.” - Ledi AML Survivor

Upon hearing the story from Tambalan, I searched facebook and look for Ledi's Album. What breaks my heart and almost bring me in tears is her letter to her parents.

To my papa..

Taks, Hindi ko nga alam ilang beses ko sinabi sayo na “Pa! wag kang umiiyak! Di naman ako mamamatay!”. Sa loob ng 2 months araw araw ka nagbiyahe ng 106.2 miles para lang makita ako. Sa kakabiyahe mo pati laman ng debit card ko ginastos mo sa gas, bumili kapa ng hamburger at grocery! Nung magising ako sa katotohanan halos mahimatay ako sa bank statement ko at wallet, daig ko pa nanakawan pati cash wala. Pero okay lang papa, nakita ko naman na love mo ko. Alam ko ako lang ang laman ng dasal mo. Ginawa mo lahat, kahit tulog ka, gigising ka pag naririnig mo nako na nagsusuka o tumatayo sa kama. Nung paralyze ako ikaw pa nagtataas ng short ko pag nagbabanyo ako. Every hour ginigising kita para ireposition ako sa kama. Napansin ko nagkakasakit kana, pag sinasabi ko na dahil sa puyat at pagod mo sa akin sasabihin mo hindi. Di ka nagsawang samahan ako maglakad para bumalik ang lakas ko. Masama talaga loob ko sayo nung bata ako dahil may nagtanong sa akin may tatay daw ba ako dahil lagi na lang si mama ang nagpupunta sa school. Sorry Taks kung hindi ako napunta dito hindi ko naman malalaman ang totoong dahilan. I love you papa. Hindi naman ako totoong magpapakasal. Gagawin ko yung hinihingi mo, dahil ginawa mo rin lahat para sakin. Magaaral ako, pero bayaran mo bawat grades ko 
smile emoticonI love you Pa. Bili moko vans denim chevron old skool. Yes? smile emoticon I love you.

` ` ` ` ` `
To my dearest mom..

Buks, Thank you for everything. You are such an amazing blessing in my life. I am so sorry I disobeyed you and gave you a lot of worries. I never listened to you before kasi ang dahilan ko nagaaral ako mabuti so you don't have to control me. Napaiyak kita ng ilang beses at hindi ko naisip yung mga panahon na wala kang katabi matulog dahil busy ako sa party/inuman. I saw everything mom. Mula sa pagtakbo mo kapag nagsusuka ako ng dugo at napapaluhod pag tumatayo. Sinubuan mo ko nung time na hindi ko magawang hawakan ang spoon. Pinaliguan at hinugasan mo ako sa banyo. Binuhat mo ako dahil paralyze ako. Hindi ka nagsawang hawakan ang kamay ko para makatulog ako nung bumaba ang sodium ko. During chemo days hinayaan kita magtrabaho dahil kaya ko naman tiisin yung ilang araw ng pain. Pero nung sinabi ko sayo na "Ma, wag ka na magtrabaho dito ka nalang" agad mong iniwan ang trabaho mo to stay with me. Every night tumatalikod ako nagdadasal, I always ask God for forgiveness and to give me a chance to be with you. Thank you mom for holding me throughout my battle. Thank you for supporting me since day one. Sometimes, I want to stop the clock and go back so I can delete all my wrongdoings. But I can’t, all I can give you now is my sincerity to say that I am really sorry. Mama you are my everything, my one and only, I LOVE YOU SO MUCH Buks.

I admire Ledi for having the strength to fight the battle she had. I hope her story will inspire others who are losing hope to keep on fighting. Just like what she said, life is a beautiful struggle.

By the way, I heard from Tambalan that she encourages everyone to donate their blood. This will make a big help to others. I know some are afraid to give their blood. There is nothing to be afraid of, in fact you will get more benefits from it. I already made a post about the benefits of blood donation as well as the qualifications to be considered as a donor

Life is a beautiful struggle, isn't it?