Tracheal stenosis.

March 2020

A bit late but I just found out that February 29 was World Rare Disease Day. Aside from my battle with lymphoma, I also struggled with Idiophatic Subglottic Stenosis. It is a rare disorder wherein there is a narrowing in the airway just below the vocal cords because of scar formation of unknown cause. The stenosis causes difficulty in breathing, wheezing, and is commonly misdiagnosed as asthma, as what happened to me as well, they initially thought it was adult-onset asthma.

Around the 4th or 5th cycle of my chemo, I started having these attacks of difficulty breathing which were really terrifying. Worst was waking up in the middle of the night like I was drowning, fighting for air. Really felt like I’m about to die every time those attacks happened. I had countless trips to the ER because of these. It gradually got worse until I can’t take few steps without running out of air. We found out eventually that it was because there’s only a slit-like opening left in my airway.

I had to be in tracheostomy for 5 months to help me breathe, but barely being able to speak and go out of the house. I also had two surgeries. One was balloon-dilatation to widen my airway. But it didn’t worked and the stenosis came back just weeks after. That’s why this one is so tricky because it is known for its high recurrence. Second surgery was last December which involves tracheal reconstruction where the doctors removed the part of my trachea with stenosis and then placed a cartilage graft (that they got from my rib!) to widen my airway. Amazing right? haha.
The tracheostomy got removed last February and now I can breathe normally again. Yasss! The wounds on my neck are healed though it looks like a battlefield. But I’m proud of these scars no matter what. I still have this problem with my sort of robot voice that I have to conquer but I’m just so grateful to see how far I’ve come.

Here’s to us battling rare disease that made us extraordinary and filled our lives with colors. Just hold on and keep going no matter what.

Cancervesary.

February 2020

 

February 11 last year while I was in med school, I got diagnosed with Stage 2 Non-Hodgkin Lymphoma. Today, I’m 3 months on remission . When I started chemo I had to leave the school and I was stuck at home for almost a year. So, I tried painting and since then it has been a big part of my healing and recovery. Last year was the toughest one for me and my family. My life changed in an instant. My dreams put on hold indefinitely. But amidst all of what I went through, God always has a way of showing me that there’s so much more to be grateful for still. During those times, God showed me his love through the people around me, from my family, friends, schoolmates, my doctors/professors, hospital staff, and even strangers.

I learned to find gratitude in the mundane, to find strength and to be brave even if it comes with lots of ugly cries. I learned to accept death, that each day I have now is extra so we have to make the most of it. I learned to appreciate the beauty of healing and recovery no matter how painful and slow it is. I learned to live one day at a time, embracing the future full of uncertainty. But most importantly, when nothing seems to be going well, I learned to just cling on to God. To hold on to hope when everything that’s happening tells me otherwise. To keep the faith and to trust that he still has big plans for me even though I can’t understand the whys. Keep going no matter what. .

2019.

Ending 2019.
The worst and the best.
Learned to find calm in the chaos;
To see that there’s so much to be grateful for no matter what the circumstance is;
To find gratitude even in the mundane;
To see the beauty of healing, recovery, and growth–no matter how slow and painful;
To find strength and to be brave even though it comes with lots of ugly cries;
To understand grief and acceptance;
To learn to accept death–that each day I have and everything else is extra;
To live one day at a time, embracing the future full of uncertainty;
To just being in the now, making the most of it, doing whatever I can;
To hold on to hope even when everything that’s happening tells you otherwise;
To keep the faith, to keep on trusting God even when I can’t understand his plans;
To keep on trying, to keep on learning, to keep on exploring;
To not be limited by our own limitations;
To the worst and the best year that made us who we are now and filled us with colors.

 

After cancer.

February 2020

Fourth month in remission. The neck healed and scarred from the tracheostomy and surgeries. I can breathe normally again on my own. My hair growing out again little by little. My nails are healthy and pink again. I feel like normal again. Except that sometimes I don’t even know what’s “normal” anymore. Except that my voice has changed. Except that everything is different now.  Except now that I am totally clueless and lost on where to go moving forward.

During treatment, all I had to focus on was how to survive, to get through the chemo, to get well, and to beat cancer. I guess I wasn’t able to process the weight of everything until now that it all has passed. I no longer know what’s “normal” anymore. All I thought before is that once I get through this cancer then I could just go back to how I used to before, go back to med school like nothing happened to me and continue my life before. I didn’t thought this would be so much more difficult. I don’t know what I can still do. Even just going out again and doing normal stuff I usually do before feel weird sometimes.Honestly, I don’t know what should I do with my life moving forward. I have no career to go back to. No matter how much I want to go back to med school, it is  not an option for now considering a lot of things. I can’t go back to my previous work before med school because of the current state of my voice.

I am starting over in life again, except now that I’m older, I have no plans (for the first time), and I’m totally lost. And it feels like I’m in a constant internal turmoil that I don’t understand and I don’t know how to really process. I know that in time, I will find my way again, that all the pieces will fall into its right places. But right now, I just have to get by each day, no matter how lost I am, living one day at a time.

 

In Between.

December 2019

“I am stuck in present tense. I have lost the ability to make extended plans, to reach into the future and speak its language.” — Kate Bowler

As of October 24th 2019, I am officially in remission, complete response from the chemotherapy. I couldn’t believe it until I saw my oncologist write down NED (No evidence of disease). The tumor in my chest is gone! I beat cancer!

I know I was supposed to be very happy but I felt like I couldn’t celebrate yet. I still have to deal with the stenosis in my airway that I’ve been struggling with. Because my first surgery didn’t worked, I am to have the second surgery this December, a more invasive open surgery. I am actually amazed when they told me how they will do it but I am scared because there’s no 100% guarantee that it will work. And if that doesn’t work, I don’t know what else the doctors could do. I’m scared that I’ll have to live with this tracheostomy tube forever, that I will never be able to get back to my life, and I don’t know if I could handle that.

Whenever my mind wanders off to the future I wanted, the future I dreamed of, I had to consciously stop myself, reminding myself to just focus on the now, because my future is too full of uncertainty. It’s not that I lost hope or had given up my dream but I guess I just want any more disappointment from failed expectations, I had too much of that.

I am living one day at a time, not dwelling on my future, not making any plans, just being in the now, trying to do whatever I can, but still hoping, still dreaming, still fighting.

A Letter to Self

November 2019

“I know you’re tired and you want to give up. You’d rather die than live aimlessly, thinking about the could haves each day. I know it has all been too difficult. You can’t always try to be happy and optimistic. You don’t always have to be strong and act like everything is okay when it’s not. It’s okay to be angry, grumpy, moody, and sad at times. Ignoring or trying to suppress those will not work. Your feelings are valid. You have to recognize it and then release it. That way you’ll be able to move forward and look at the better days ahead. I know how hard it is for you to believe and hope that everything will be okay when the opposite keeps on happening. But please try to still believe. You are stronger than you think you were. You are a fighter. Remember who you are. Remember who your God is. He loves you so much and he will never leave nor forsake you. Remember how He got you through before and that He could do it again. He is faithful always. You could have died at the OR that time but you didn’t. Remember those who love you. Your parents who always take care of you and your siblings who always try to make you feel better. If not for yourself, try to fight a little more for them. Remember your dream to become a doctor and those who believe in you. One day you will tell your story and you will help others who wants to give up. Keep the faith. Trust God.”

Wrote this one after I’ve been on those times when I’m so sick of being sick, when anger, despair, and hopelessness overpowered me, when no words of encouragement and positive thinking could work, when I questioned even my faith, when I got so tired of it all and I all I wanted is to give up.

Status Post: Chemo

October 2019

So last July I finished the last cycle of my chemotherapy. Yay! My doctors said I tolerated the chemo well. Aside from the hair loss, I didn’t experienced the usual side effects of chemo. Usually, I feel normal within the week of the chemo session. On the 2nd week after, I had various stuff going on ranging from body pains, fatigue, sore throat, toothache, very bad cough and colds, etc.. but these were bearable. And then on the 3rd week, I start to feel better again. That’s how each cycle goes for me.

Chemotherapy greatly weakened my immune system made me very vulnerable to other diseases. I had to deal with a lot more problems with my body aside from lymphoma. I had a persistent sore throat for around 2 months and it’s very painful when I swallow but my doctor couldn’t find the cause. I also had a very bad cough for months that kept me up at night and had very sticky phlegm on my chest that caused difficulty in breathing. This eventually turned out to be Pneumonia caused by Pseudomonas aeruginosa which was resistant to a lot of antibiotics and I had to be admitted to the hospital again. My voice became very weird and hoarse and we thought it was just because of the sore throat and from coughing a lot. I also had Pericoronitis, which is an inflammation of the gums around the wisdom tooth. I could even see that there was a hole in my gums and it was very very painful especially when I eat. Good thing, this was easy to treat. Aside from these, I had an infection in the previous site of the tracheostomy. The wound was almost closed but it opened again because of the infection. I also had countless trips to the ER because I tend to have sudden attacks of difficulty breathing which were really terrible like I thought I was going to die, but the doctors couldn’t find the cause.

So I was super happy when I finished chemo. I felt like I’m no longer sick. I thought I am on my road to recovery. I thought everything will be easier after the chemo, but I was so so wrong. It just kept on getting worse. My breathing problem got worse. I would run out of breath even just from walking a few steps. I consulted a pulmonologist and they thought it was adult-onset asthma. It got so bad that I had to be admitted to the hospital again for few days. They gave me a lot of meds for asthma but it didn’t work. The attacks just kept on getting worse.

Then came the scans. It was a bit uncertain if it was still the tumor in my chest or it was just an enlarged thymus so I still need to have PET scan to see if the tumor is still active which will determine if I need to undergo radiotherapy.

But they also found that I have a Tracheal stenosis. There was a narrowing in my airway, the opening is almost slit-like which is why it was sooo difficult for me to breathe. It wasn’t asthma after all, though it is commonly misdiagnosed as asthma though because of the similar symptoms and presentation.The only way to treat it is through surgery. They have to do tracheostomy again to secure my airway. Soo my scar was reopened and I have a tube in my trachea again for more than a month now but I’m getting used to. Now to address the stenosis, we could either go for balloon dilatation or laser surgery. We opted for the laser because it was more recommended however it wasn’t possible and the surgeons really had difficulty during my operation because there wasn’t enough exposure for the equipment to get into the stenosis and because of some anatomic problems like my neck was a bit short, my larynx was too anterior, my thyroid gland was too big. The problem with balloon dilatation is the high possibility of the recurrence of the stenosis, which is what happened. After just 4 weeks, the stenosis is back. Now the doctors are recommending for an open surgery wherein they had to split a part of my airway and then graft it with a cartilage from the ribs but the success rate isn’t that high as well. I also have to wait for the PET scan first and address the lymphoma first before the surgery.

It’s so frustrating. Complications after another. It keeps on getting worse. I try to still be optimistic about it all but I can’t. There was a point when I stopped praying for healing because I felt like it was pointless. God doesn’t heal everyone. I want to keep on trusting God that everything will be okay and that He still has a great plan for my life, but it’s too hard to believe right now. The emotional and financial burden on my parents is even more difficult for me. There are times when I feel like I’m okay whatever may happen, whether I survive all of this or not. Sometimes I feel like I’m ready to accept death, maybe it will be better and easier for everyone. Sometimes I try not to think about my illness and try to live like normal. Sometimes, I try not to feel, not to think about it like it doesn’t affect me at all or that it doesn’t exist, because if I dwell on it..I might not be able to bear it. Come what may, whatever will be, will be. I’m not sure now, but no..I’m not giving up yet.

It was my second year in medical school when I got diagnosed with cancer.

February 2019

We were just reading and studying the symptoms and diseases in our textbooks and then suddenly I was the one experiencing it.

It started December 2018 as an enlarged lymph node on my neck which continuously grow and multiplied over weeks. After several workups and medications that did not work, the doctor recommended to do a biopsy. By that time, second semester at school just started. I consulted my professor in surgery and he suggested to do the biopsy himself and wanted to do it as soon as possible. Before the procedure, they did a routine x-ray and they found a large tumor in my chest (anterior mediastinum) just above my heart which was surprising because my x-ray was normal just a month ago. There were also multiple nodules found on my lungs which are causing some fluid build up. I was alone that time at the hospital and after hearing that from my doctor I tried to act like it was nothing serious but when he left my room, that was the only time I cried really really hard, knowing how serious my condition may be and that I might need to leave med school.

A week after, just few days after my 24th birthday, the result of the biopsy came out. It was Non-Hodgkin’s Lymphoma B cell type, a type of cancer that starts from the white blood cells affecting the lymphatic system which is an important part of our immune system. The good thing is that based on studies, lymphoma is very responsive to chemotherapy and have a good prognosis.

At the time of my diagnosis, I already had difficulty breathing for days and can’t climb the stairs without running out of air badly. So when I went back to my doctor, he immediately wanted to admit me at the hospital. Apparently, I have a massive pleural effusion on my left lung, 2/3 of my left lung is already filled with fluid. I was scheduled for chest tube thoracostomy (CTT) insertion the next day to drain the fluid. It was a simple and quick procedure but I had complications after the operation. I was half awake and I could only remember that I kept on coughing and everyone around me were in commotion. The enlarged lymph nodes on my neck started compressing my airway that I could no longer breathe. They couldn’t intubate me and they had to do an emergency tracheostomy.

I woke up in the ICU with tubes on my side and a hole on my trachea. My doctor said that I went into critical state and they nearly lost me there. They started the chemotherapy immediately. Thankfully, I did not experience most of the side effects of chemo like nausea and vomiting. But after the first dose of chemo drugs, my hair started to fall out which is the hardest part for me to accept aside from leaving med school.

Doctors said it was amazing how I responded dramatically from the chemo because almost all of the enlarged lymph nodes compressing my neck are already gone just days after and I was doing good compared to others.

I stayed at the hospital for 22 days. I had to withdraw from medicine school for the treatment. When I started in med school, I always prayed that nothing bad will happen that will make me stop from finishing it, like maybe not having enough money for my tuition but I never thought I would be sick like this because I rarely get sick before. I did asked God at one point why now? Why now when I finally found something I don’t want to loose? Something worth holding on to no matter how difficult it is. But God showed me instead that there are far more greater things to be grateful for. I’m just thankful that I’m still alive and still fighting cancer right now. During my time at the hospital, I felt all the love and support of my family, friends, classmates, doctors who are mostly my professors also, and even the whole school of medicine. When my classmates visited me, the halls of the hospital outside the ICU were filled with med students. All their support and encouragement were overwhelming and heartwarming. Even if there were times that it was very hard and the pain becomes too much to bear, it was not hard to see what I could still be grateful for. As cliche as it may sound, I know that God has a great plan for me even though I can’t understand it right now. I could have just died during that time in the operating room but I didn’t. I’m excited on what God can and will do in with my life.

I’m back home now just resting, recovering, and trying to gain again some weight so I decided to write again and here’s my journey on fighting lymphoma, living, surviving, and embracing whatever comes ahead.