This is not good for my productivity. My desire to write a long piece today has gone from 80% to zero.

Given that I am emotionally and physically spent, I am so much tempted to sleep in and ignore work. Just beg off and say I’m sick. But I can’t. Majority of editors are still on holiday.

Last night, I saw Twin A struggling with school work because she was exhausted and wanted to sleep. Poor thing went to bed last night at 11 pm after our battle with her Math homework. She has to get up at 5 am because school bus comes at 6:45 am. Can’t skip breakfast because she has a cocktail of medicines to take.

My struggle now is how to help her gain weight. I just bought from Lazada a new digital weighing scale since I lost my old one from the move. Aside from the weekly uric acid test, we should be monitoring her weight and record the changes (or no change). I’m not sure if our doctors are using weight as one of the markers for drug response/resistance (as one study from the Philippines suggested) since her GeneXpert result was negative. The GeneXpert assay was supposed to determine the susceptibility and drug resistance of the MTB found.

My fear is that she is not gaining fast enough since she does not have enough sleep to recover because of homework load. She still has dark circles around her eyes that show she is not well.

Never-ending anxiety coiling inside me. I still couldn’t get a schedule for MRI and my priority is to have it done at PGH because I do not trust other hospitals. Imagine, our old hospital thought she had nodules all around when they were in fact calcification, hence, lymphoma was already ruled out in the second opinion/reading. 🤦🏻‍♀️

I would just like to say I am floored that a pop drummer was able to do Slipknot and gave her own spin on it. When you have talent and know your instrument, it doesn’t matter what your genre is—you can cross over.

And this guy, the session drummer for Madonna and Michael Jackson, takes on Linkin Park. He is completely self-taught—doesn’t do charts and write drum beats but man, he plays on the fly by completely feeling the song and adjusting on real time. That’s real talent.

Meanwhile, I spoke to the Radiology Dept at PGH and the earliest schedule I could get is Oct 25th and I must rush to have my daughter’s creatinine blood test taken tomorrow because the MRI is for full abdomen with contrast. Then I should go to PGH to submit the medical abstract and MRI order plus I will be interviewed for the full history of the patient.

I don’t know how I will shoehorn everything within this week but I must find ways.

I was chatting with my sister-in-law this afternoon regarding my schedule for the blood tests, follow up check up with our IDS, and the submission of docs to PGH, when this happened.

I was using my phone when I was chatting with her then this appeared.

And true enough, I came to my room and saw this:

Today is a little extra.

Twin A is going to attend her high school for the first time. Although she has been doing school work online and interacting with her class via chatgroup, this is the first time she will be officially part of the class in person.

I hope she doesn’t get sick.

Meanwhile, my cats will be left on their own without having someone harrassing them in the middle of the day.

And I will be working in peace. But the whole of Asia is on holiday for the Mid-Autumn Festival, combined with holidays in India and Australia. I will be the only one holding the fort for the next two days.

I was just too exhausted yesterday as we got home at almost 12 midnight on Saturday. I woke up at 6 am to have my two children nebulize in their sleep because both had been wheezing. Then I slept and woke up at 11 am. That’s how bad it was.

I wish I have another day so I can take care of myself. Just sleep. Feed myself healthily without having to cook.

Hah, I thought I would be able to take it easy today. I forgot that Japan is alive today and I had to edit a complicated story for the entire day.

To take down the cobwebs in my head, I went out to do some work while I wait for my children to arrive from school.

I also cuddled with my cat to relieve the stress. I’ve been trying to figure out how to book an MRI appointment with PGH using their online booking system. But I doubt if it would even be acknowledged. 🫠

I am angry at Sara Duterte for spending PhP 125m in 11 days, which Congres could not trace where it was spent. She keeps justifying the billions upon billions of “confidential funds” that cannot accounted for by the Commission on Audit.

Here we are, the Philippine General Hospital—the national university/research hospital—is often running out of reagents and similar items critical for running tests. I just had the good luck that we were able to have the TB PCR before they ran out of reagents. It was sad seeing the other patients being turned away because of this situation. One relative of a patient asked where they could do the tests. The hospital named were the expensive private hospitals—and her eyes showed the pain upon hearing St. Luke’s and Medical City.

I want to shout, “you deserve the people you voted for!”

But I couldn’t at that moment. I was just too exhausted then.

I want to scream at the Filipino people, to tell them, “You know we are being robbed in broad daylight but you refuse to acknowledge this stupidity.” I want to lash out at them.

The fight in me went on a holiday. I wanted to get angry but I couldn’t find the energy to fuel the anger.

In contrast, there is not a spec of peeling paint or blemish on the walls of St Luke’s Global City. I don’t think they would run out of basic reagents like those for TB PCR. But of course, only a small percentage of Filipinos can afford this hospital.

Since the results of the GeneXpert, TB PCR and AFB were negative for MTB, our doctors (hema-onco and IDS) decided to keep my daughter on the onco watchlist. But the CT scan, histopath, and clinical evidence show that it’s really TB. They also think that the 10 days of HRZE (anti-TB) meds given to her by our first hospital could already have done damage to the MTB that’s why it was negative in these TB tests. The decision is to continue with the current therapy and just go back to our hemo-onco next month after we had done the MRI to see if there is still thickening of the colon walls. If that’s the case, then a colonoscopy is needed to do another biopsy.

What stumps them is the high uric acid (including the high TSH); it could be genetic or diet, our hema-onco said. In any case, she recommended that we see an endocrinologist.

After St. Luke’s, Twin A and I went Greenbelt and wait for my sister-in-law and Twin I. They were gallivanting somewhere in BGC while we were in the hospital but SIL needed to do something in Glorietta.

Looking at the prices of the items here, like in PowerMac Center or a bag in Balenciaga, I can’t help thinking to myself, ooh, that’s the price of an MRI with anesthesia…that one is equivalent to a one-week hospital stay…I now equate everything to the cost of healthcare. 😓

To make myself happy, we are ending the day with shabu-shabu.

Final histopath diagnosis:

I don’t know if I should see the word malignancy in this.

The second opinion CT reading had nothing about lymphoma there but it says “suggestive of gastrointestinal tuberculosis versus peritoneal carcinomatosis if with a known primary malignancy.”

As expected, the AFB and TB PCR were negative for MTB. Is it because when the biopsy was done, the patient was already done with Day 10 of her anti-TB meds therefore there is not enough MTB to work with? I don’t know. Dr. Google is making me nervous.

But then, a Philippines-based research showed only 10% of the samples showed positive AFB for peritoneal fluid.

I have to go back for the MTB culture after 6-8 weeks.

For now, I would just have to wait until Saturday and see what our hema-onco would tell me. Then our IDS next week.

Should I ask our hema-onco for some more tests?!

And this is how the world looked like when I left the Malate/UP Manila area this afternoon.

And it was not just Manila; it’s most of Metro Manila.

Sis-in-law and I stopped by Makati Med so she can visit her friend who just had her benign cysts removed from her uterus. While I was waiting for her to conclude her visit, I loitered around Ayala North Exchange, which was attached to the hospital.

I need to bring Twin I to the hospital tomorrow for the TB blood test, just to make sure she is TB-free and not incubating inside longer than Twin A did. I’ll have CBC in the mix because her cousin next door is contagious. He has bacterial flu. Twin I started having colds yesterday and full-blown asthma now.

Since I knew this day would be stressful for me, I wanted to start it with something nice for my brood before driving off to PGH.

I grilled porkchops for lunch and dinner for them since I knew I would be coming home late.

I don’t have to worry about producing too much smoke to disturb the neighbors. Well, my neighbor is my mom and I’m too far back to cause coughing or bring smells into her house.

Meanwhile, my cats are watching.

I’m happy to report that Sushi has been getting thicker compared to how she was when we were still in QC. She seems to prefer this environment from the previous one she grew up in.

Who the hell wrote on our home care docs that it would take 8 weeks before I could claim our histopathology report?!

Good thing I was persistent in pursuing it with PGH Surgical Lab the entire day today (calling trunklines non-stop) or else I would have waited 6 weeks before retrieving them! 🤬

So tomorrow I will be driving to PGH to get the results from the Medical Research Lab and Surgical Lab, plus the final CT scan reading. To settle this once and for all. Then we march to our hema-onco’s clinic at St. Luke’s BGC on Saturday. I can’t wait for this to be over and done with. If it’s lymphoma, then at least we can already get the course of treatment set. If it’s really TB, then hurrah! We can finally move on.

I hate this suspense. It’s driving me nuts. It sends my anxiety to the stratosphere and my gastric acids are having a field day that I needed to pop Omeprazole into my mouth.

To make matters worse, I am needed in Singapore ASAP, but I can’t move until I get clarity over my daughter’s health. My senior reporter refused to travel to HK in November for our APAC-wide event because he got tired from his travels last month while I was out of commission. Now they know how I feel when I was flying out every month before I halted travel last month to concentrate on my daughter. I was supposed to be in HK last week but I cancelled everything while we were still in our local pediatrician’s clinic because I knew it was a dire situation. At that time I was only thinking surgery was my biggest worry. How wrong I was.

So come what may. I just need a final—really final diagnosis. For all we know it could be an autoimmune disease that is accompanying Twin A’s TB that’s why her TSH and uric acid are high. My aunt had lupus so it’s not impossible.

I wish I could relax like my cats. I wish I could finally take a holiday break from all these.

Negative for MTB.

Our IDS already somehow expected it. She told me before we were discharged that she is still confident it is TB even if GeneXpert comes negative given the surgical pathology report.

Maybe this is false negative???Attached with the GeneXpert result is the waiver signed by Twin A’s dad, saying that the result could be inaccurate due to the less than ideal or below-lab standard specimen submitted.

But this does not help my anxiety. I was told at TB DOTS that GeneXpert is already highly sensitive and I feel the AFB tests could be negative as well…that they may not have enough bacteria to work with or may not even have cultured any MTB 😓…I have yet to claim the AFB, GSCS, and TB PCR from PGH Medical Research Lab. And it my not tell me anything, too.

What’s worrisome is my daughter’s uric acid is still persistenly high despite regular intake of allopurinol. Uric acid as of yesterday is 9.18 mg/dL, normal value is 2.6-7.2.

But I was told at TB DOTS that it’s not that yet too worrisome since it’s not 5x higher than normal.

FNAB result and cytology report are not accessible to me yet…

The problem is our IDS took a leave of absence this week and we were scheduled to have the check up on Thursday. 😱 And I have been referred back to our hema-onco regarding the high uric acid.

The only thing that is keeping me hopeful is that Twin A is improving, ergo, the anti-TB med is working. The fact that she can walk back home from church is already a huge improvement over how she was two to three weeks ago.

But then, the threat of lymphoma is still there. My fear is that we might become complacent because we relied on the surgical pathology report, believing it is TB when we might be delaying treatment of possible lymphoma.

But I can’t do anything about it until the other test results, especially the FNAB and cytology reports come in.

Maybe I could request for an MRI, earlier than scheduled, which is originally set two months later? What would an MRI reveal? Maybe nothing. Maybe it would show less inflamation or the level of inflammation is the same because the anti-TB med is not addressing it?

I am killing myself with worry.

To keep me calm, I bought myself ice cream. That’s all I can do.

And pray.

I am going nuts.