Just three weeks ago, the doctors who were looking into my pneumonia case found out through a chest CT scan that I have an unidentified lump (pulmonary mass) on the wall of my left lung. The lump can be anything benign but it can also be cancer.
As soon as I’ve learned the bad news, I’ve felt like the heaven and earth had collapsed their entire weights on me. I’ve felt the rush of tears desperately wanting to come out from my eyes. I just got the results of my HIV test a couple of days ago and I was very glad it was negative and now this. I have never felt so defeated in my entire life. I’ve felt as if a super tsunami came to where I was standing and swept me out to sea, never to be found again. I wish it was that simple.
Prior to these shocking findings, I was admitted to the same hospital three times in two consecutive months and for the same diagnosis: community acquired pneumonia.
Two weeks prior to my first hospitalization, I started experiencing asthma-like symptoms at random times when I’m at work or when I’m just about to go to bed. I had wheezing issues accompanied by shortness of breathing. After five days, the shortness of breathing worsened to the point where I could no longer complete a single sentence without being interrupted by my fucked up breathing patterns. I didn’t like it at all. Additionally, I’ve acquired a dry cough. It was tolerable at first and it seemed like just another ordinary cough that would soon go away after a week. Only it didn’t.
After two weeks, the cough was still there. At one point, I had serious difficulty breathing at work and had to run to the clinic a couple of times during my eight hour shift just to nebulize. The nebulizing helped a lot during the early stage of my sickness. But it didn’t cure it.
One Saturday morning in the second week of March, right after my Friday night shift ended (I’ve been working graveyard shift for the past eleven years), I came home feeling weak and my breathing pattern was worse than ever. This time, I’ve felt like it was never going to stop and the nebulizing did very little help. That’s when I’ve felt the alarm inside of me. I need to get to the nearest hospital. Now.
I mustered every remaining strength I have and through struggled breathing and coughing, I approached the entrance of the hospital. I was alone.
I have always dreaded hospitals and the smell of antiseptic in their hallways. I have been admitted only once in ten years. I didn’t want to get admitted anytime soon but I knew it was time. I had no idea I have pneumonia. I thought it was a chronic type of asthma just because the symptoms were the same. After listening to the wheezing sound in my breathing, I was confined and rushed to the emergency room right away. It didn’t come as a surprise. I was a total mess during that moment and I seriously did not think I could last another hour.
After 24 hours, the attending physician confirmed I had pneumonia. The first thought that came into my mind was HIV. Recently, I’ve had a number of people in my acquaintance circle who died suddenly after being diagnosed with pneumonia-related diseases. Rumors quickly spread within our circles that they were HIV positive and that the pneumonia had complicated it. It was a nerve-racking thought but I couldn’t help thinking about it.
I was treated with different antibiotics such as Cefalexine, Cefexime and Supime in vials. With the IV included, I literally had three bottles hovering above me while my body consumed the injected medications. I was discharged after ten days. I still have the cough when I received advise that I can already go home. At first, they had me take Levofront syrup for my cough but later endorsed a granule solution called Flemex. The shortness of breathing was still there although the attacks have lessened considerably. I asked the doctor why I was being discharged when I still have the cough and shortness of breathing symptoms but was told that it was because my x-ray showed clear and they could not see anything. She said that the take home medications should eventually cure whatever was left of my pneumonia. I knew right then that nothing has been cured. I wasn’t feeling well at all and yet I had to follow the doctor’s advise.
After one week of rest, I went back to work. And after two weeks, just after I have consumed all the prescribed antibiotics and cough medications —the shortness of breathing and cough started to get worse again. I had to come back and get admitted once more. It was like an ordeal I had to go through. I hated every minute of being in the hospital.
For my second hospitalization, the doctor waived my IV and any injected type of medication. I was asked to take oral medications such as Bactrim Forte and Azithromycin. For my cough, they prescribed a new mucolytic. A 200mg granule solution called Acetylcysteine Fluimucil. I stayed in the hospital for ten days and was discharged again —by the same attending doctor. The take home instructions said I was to take the medicines for another two weeks. I’ve followed it and was relieved that for the first time in a month, the shortness of breathing disappeared. The cough was still there although it lessened and seemed on its way to healing as well. Only it didn’t. After a few days the antibiotics ran out, and the shortness of breathing came back like a thief in the night.
In that moment, and in the middle of my prayers —I cried buckets of tears because I was so lost. It was very difficult for me to understand what was going on. Why am I experiencing this pain? What did I do?
Another week passed by, I delayed my consultation with my physician because I was afraid they’d confine me again. I had work and corporate commitments to attend to. Eventually, my sickness got worse again and I had to get checked up. The doctor who looked into my case issued Bactrim Forte and Cefalexine again for a week because I told him I can’t afford to be admitted due to work commitments, at least not yet. He told me to go get an x-ray after I finished taking the antibiotics. A week passed and nothing changed. I went back to the hospital and had another x-ray procedure done to me. This time, they saw scattered cloud of mucus around my left and right lungs. The doctor asked me if I was willing to get confined again. I didn’t know what to say. Is this a joke? What the fuck is going on? Of course it was just my rebel self but seriously I knew I needed to be admitted and get treated asap.
The doctor asked if I knew my HIV status. I said no I didn’t. He advised me to have myself tested and I did. That’s when I learned I was non-reactive (negative) to HIV1 and HIV2 —something I have fervently wished and prayed for. Thank God! That was a major hope booster.
Knowing my HIV status gave me some kind of weapon to fight the fears that’s engulfing my whole being. If I was reluctant to come back to the hospital for the third time, the thought that I am HIV negative made me feel powerful and resistant to the pneumonia. I knew I wasn’t going to die. I knew they will find a cure and I’ll get back to my old healthy self once again. Only I didn’t.
My third hospitalization was more of a traumatizing experience rather than a road to healing. I was treated with various antibiotics such as Levox (500mg vial) and S-Omipin (40mg vial) and again, Supime (1g vial) which they injected through my IV. At first, the antibiotics felt a little painful when they enter my veins but I got used to it after a few days. I was also on oxygen 24/7 to help with my breathing and had nebulizing sessions three times a day. After reading the result of my latest x-ray, the doctor said I had to undergo a CT scan procedure on my chest. The process costs around PHP13k and includes an eight hour fasting and injecting a serum that apparently cleans up my blood veins so that the CT scan results is clearer or something to that extent. I agreed to the procedure. The next day, they broke the bad news to me.
It wasn’t entirely bad news though especially since the status of the lump is unknown. A lump can either be benign or malignant. I’ll be lucky if my lump is benign. But according to my doctors, “the only way” to determine if the lump is cancerous is to undergo a biopsy procedure. I immediately told my mom and my sisters and they instantly declined the idea. Despite advise from doctors not to turn to Google, I just couldn’t help it.
A quick search through Google would tell me that 50% of biopsy patients are diagnosed with some type of cancer. Medical forums argue that this percentage is due to medical malpractice or the disadvantage of biopsy where it breaks into the cells inside to get a sample thereby potentially breaking the body’s defenses and triggering an otherwise benign lump into a real life cancer. I knew for a fact that I should not be assuming my real health condition. I knew that not everything that’s written on the internet is true. I still need to listen to the experts eventually. But I was horrified about what I’ve read. I told the doctors I’m not convinced I needed the biopsy procedure. At least not yet. I was acting out of my own instinct. I was throwing my best judgment based on what I feel physically and mentally. The doctors at Victor Potenciano Medical Center in Mandaluyong did not introduce any other alternatives even though I asked for it. It’s 2017, I could not believe there are no other alternatives. I have read about other medicines that can melt the lump inside our body. They kept telling me that a biopsy is needed in my case.
The following day, my corporate health card ran out of funds. It has a P200k limit per sickness and I have consumed every cent. Really? Where did it go? I don’t feel better and I’m far from it. But I had to make a decision to get discharged immediately otherwise, I’ll shoulder the remaining expenses on my own. It was too late though. Before I was able to finally walk out of the hospital, my excess bills have piled up. The doctors were adamant to make me stay so I had to explain to them that I could no longer afford to shoulder the excess which at the time had accumulated to almost PHP100k. I had to pay it using my personal savings because My corporate healthcard does not allow limit extensions. Despite my physicians’ opposition, I asked to get discharged without knowing the status of my lump. They were unable to provide final diagnosis due to my decision. In addition, my attending physician had me sign a waiver that basically says the hospital and their medical team are not to be held accountable in case something unprecedented happens to me. Of course, why should they care when they’re all for the money, right? It seemed to me that the hospital only cared about the business more than helping their patients in times of need. I can’t help thinking that perhaps the reason why it took me three hospitalizations for the same complaint before the doctors at VRP Medical Center finally get hold of their senses and endorsed me to undergo a chest CT scan was because they know my HMO would pay for it anyway. Three hospitalizations at VRP Medical Center and they were not able to heal me. Nothing in my condition changed. I felt robbed and betrayed by the doctors who attended to me. Nevertheless, I paid all the bills, signed the damn waiver and went home just so it would be over.
I have been at home for three weeks now while I’m getting ready to check in to a state hospital, most probably the Philippine General Hospital or the Philippine Lung Center. In these trying times, I am grateful that I have enough savings and multiple insurance policies to cover my expenses, at least for emergency situations. This is the time where I knew I made the right decision to invest a portion of my hard-earned money to get at least three insurance plans when I was still in my twenties.
I wrote this article on June 12th, which is the day my country, the Philippines received its Independence from Spain. I do hope though that one of these days, a miracle —some sort of an alternative cure, would liberate me from the curse of this lump as well.
Despite the fear, I am determined to fight this disease. My family needs me because aside from the fact that I play the role of a breadwinner, they simply need me alive. I can see how painful my situation is for them especially to my mother who is 65 years old and has been fighting diabetes herself. Most importantly, I am young and still have so much dreams and hopes in life. There’s just so much things that I want to do and accomplish. I know I can make it. I hope I could find help before it’s too late.
UPDATE (As of November 2017):
After two CT scan tests, three HIV tests, various X-Ray and PTB including GeneExpert tests, a bronchoscopy including bronchial brushing and washing, and one bronchoscopy aided biopsy procedure, all the results turned out to be consistently negative. One of the tests called bronchial brushing says I have Acute and Chronic Inflammation of Cells in an Amorphous Background but no other infectious diseases or malignancy was discovered. I was thankful for this but the battle isn’t over. My new pulmo specialist at Makati Medical Center advised me to undergo another biopsy procedure, this time it will be CT Scan guided biopsy to make sure my lungs are clear of any malignancy. The reason for this is because I still have difficulty of breathing and still have the mass inside my left lung. I went back to work (remotely for now) while waiting for that biopsy schedule.
—King Ray, the Ninja