Am glad to provide this festive update: Alf had his follow-up CT scan this morning and he saw the doctor later in the afternoon. To recap, something was brewing in his right lung two months ago—a lesion with cavitation in the upper right, and “ground-glass opacities” in the lower right. What we heard from the doc today was that the lesion had shrunk, and the opacities had disappeared. Our doc looked a bit morose, frankly! Wasn’t sure if it was just him having a bad day or if he felt he’d failed us by not being able to provide an explanation. In any case, we agreed that as long as things were improving, we didn’t need to fill in all the blanks.
So that’s our early Christmas gift, I suppose!
What’s left for Alf is a follow-up scan in six months, which will hopefully give him the all-clear. On our part, I think we’ve already left this episode behind. Alf is still recovering from shoulder surgery and the pain has been bothering him (more than expected), so perhaps that’s shifted to the top of his priority list.
For me, I’ve been too busy lately for idle thoughts! Saturday was work followed by a dinner party followed by more work, late into the night. Up again on Sunday to work, get Z to badminton (with laptop in tow), followed by another dinner party, and then work again till 5am. Wrapped up a story this morning, took a pause to accompany Alf to the clinic, and then back home to finish another story.
Alf has been telling his family that he’s OK and feeling perfectly fine, which I’m slightly concerned is misleading messaging. I would’ve phrased it as “OK… for now.”
For friends who’re still checking in on us—we don’t have a clue what happened to Alf to make him cough streaks of blood in mid-October. But we do have names and sizes for what the doctors found in his right lung:
“Cavitating mass”—right upper lobe, 2.8 x 2.4 x 2.3cm, 3-6mm thick walls. This has been surface biopsied and there’s no sign of malignancy for now. (We call this the “donut,” although there’s more hole than dough!)
“Ground-glass opacities”—right lower lobe. (I’m imagining shattered glass here… Alf calls them “marbles” and his sister Jac said it sounds like jewels.) So there are several of these in sub-centimetre sizes, and there is one that is 2.1 x 1.9 x 1.6cm. The CT report says this one is suspicious for malignancy, but it couldn’t be reached during the bronchoscopy. We have the option to do another bronchoscopy or even keyhole surgery if we want to investigate this further. Keyhole surgery can cost between SGD30,000 and 50,000, but with our insurance it’ll be just 10% on our part, which is fine. We’re really waiting it out to see if things might improve, so that Alf doesn’t have to be subjected to so many invasive tests at a go. If he were still coughing badly, I think we would’ve definitely gone ahead, probably with the keyhole option.
While Alf is seeking help for his shoulder tear in November, he also needs to schedule an appointment with a renal specialist—coincidentally, they’re located in the same medical facility! I don’t have his blood test results with me, but there was something that was above normal levels to indicate kidney dysfunction, and the specialist told us that typically, kidney issues don’t show up in blood work until over 40% of kidney function has been lost. That’s kind of scary to hear, but we’ve been hearing a lot of scary stuff lately anyway and Alf is still walking around fine, so we’re fairly densitized, or at least I am.
I was talking to my gf Diana yesterday, and telling her that on a crisis scale, I would rate what we’ve been through as a 4 or 5/10 at most. Actually after considering how much other people out there are suffering, I might even reduce this to a 2 or 3! We were kidding that this waiting stage feels a bit like a stay of execution, but I’m thankful for the extra time to see how we can better protect ourselves financially, and to tidy up other loose ends.
NYT | “She Married the Priest.” (Gotta love a hot priest story. Btw Alf considered entering the priesthood as a teen, does that count? 😄)
Neil Patrick Harris’s BoxONE, an “ever-evolving game of trivia, codes, puzzles, and discovery only from the mind of NPH.” (One more reason to like NPH—he makes cool games! This is on my 14yo’s wishlist.)
YouTube | Professor Leonard’s Statistics Videos (The stats prof to crush on, plus he’s a great teacher. If I’d attended his classes, I wouldn’t need Google! His videos on the normal distribution vs standard normal/z-score really cleared things up for me, and I was able to explain to Alf this idea of the perfect bell curve that we can map our random sample data to, and even why the formula works!)
Having to contend with mortality instantly triggers a sense of nostalgia, and each moment becomes more deliciously bittersweet when you’re looking at a potential expiry date. We probably lived in that state for about a week or two? Then when Alf’s symptoms faded (i.e. he coughed less and stopped coughing blood) and the possibilities became murkier, it was just natural for us to resume the normal rhythms of daily life. This, of course, includes getting annoyed at each other. 🙂
We’re not unchanged, for sure. When you’ve had a full month of your own news eclipsing everything else that’s happening around you, it’s actually hard to reintegrate into the social world. And it’s not a bad thing at all, for me. I’ve barely checked in on my social media, and for the first half of the month, I’ve had to channel my energies into the business analytics diploma that I’ve just started on (in October!). There were two projects to hand in, each weighted 40%, and both were pretty demanding in terms of time and mental focus. I’d fallen way behind for my statistics module, and at a point where I did think Alf might be seriously ill, I wrote to my course coordinator to enquire about switching to an audit. I was advised to take things a step at a time and press on if possible, although technically, no one could stop me from attending classes without fulfilling assignment requirements.
Somehow, everything aligned and I was able to spend some extra time on my learning, and I’ve handed in both my assignments—early!
For Alf, I think he’s trying to make prayer central to his life again, or at least a regular routine. He’s due for another lung CT scan before Christmas, and he’s been told to keep a close watch on his symptoms (he opted not to take TB meds). In the meantime, it’s his shoulder that’s bothering him more—to the point where he couldn’t lift his left arm to give someone a proper wave—and he thought he’d use November to get this sorted. He visited a recommended specialist yesterday and was hit with a S$1.2k bill for an MRI… luckily we’ve got our health insurance agent in a WhatsApp group now! He can file claims for his shoulder-related treatments without incurring a new deductible, within the policy year, but only if it proceeds to surgery. Once again, it’s good to have a quick way to reach your insurance agent, because we would never be able to figure this out on our own.
We had our follow-up meeting with the specialist on Tuesday (after Alf’s PET scan), and the short story is… the mystery remains.
The fear for PET scans is that you’ll light up like a Christmas tree, I s’pose. Note: The heart will always give off a glow because of the energy it generates, which can give first-timers looking at the report a scare!
We were definitely nervous heading in for the PET follow-up, but as it turned out, what we were asked to look at were two teensy lymph node lights that could also be attributed to an infection. Alf’s seemingly benign “lesion” or whatever they’re calling it is also lighting up, but ever so slightly, and to a lesser degree than the lymph nodes. All the question marks from our previous meeting with the specialist are still there, and he gave Alf the option of doing another biopsy or waiting and watching.
In the meantime, Alf’s cough seems to have improved significantly, and he says he hasn’t been coughing blood lately—which he was when he consulted the GP. This is also puzzling to me, as the specialist hasn’t given him any meds. The specialist’s recommendation is that if Alf wants to do nothing, he should at least start on TB meds, as we would still have to wait 4-6 weeks for the culture results.
Alf said if he could give anyone advice based on this experience, it would be to sort out your insurance—today! I realised I misinterpreted our insurance brochure and “As Charged” benefits will still involve a 10% co-pay. A claims ceiling of S$2 million dollars doesn’t seem so great if you have to co-pay 10%, along with a 3.5k deductible!
By chance, a girlfriend revealed to me that her husband had been treated for cancer early this year, and she gave me the contact for an insurance broker (i.e. someone who’s not tied to a brand), saying that her agent was smart and had integrity, and really helped them get the best treatment. I’ll be calling this lady in the next few days to see what she can do for us.
Interestingly, one of my coursemates texted me to answer a question I’d asked in the class chat, and I found out that he too is a cancer survivor! (We’ve never talked before, but I’m quite forthcoming with my information, so others tend to reciprocate.) He said he could offer help and advice if we needed it down the road—it’s weird how these random connections come about, but I’m grateful.
I think we’re quite eager to move on from this and return to our normal lives with fresh appreciation. I was telling Ron that this whole episode was less of an emotional exercise, and more of a mental workout. I also mentioned to Alf that it feels like I’ve been running on adrenaline for the last two weeks, and he asked, “Is that a good thing?” The truth is, it’s probably great for me, but I would gladly go back to our regular pace and have my husband healthy again. I do hope that’s the direction we’re headed in.
“I don’t have bad news, but I don’t have good news either.“
The follow-up session with the specialist was scheduled today, but we kept it under wraps. We’ve learned it’s better to factor in a buffer period for certain family members, so we’ll have space to process our information and next steps.
In terms of progress, we still don’t know what Alf has at this point.
When they did the bronchoscopy, they also drew fluids from his lung (better than spit) to analyse. For the tests that they’ve managed to run on what they collected, it’s been negative for cancer and TB. (There was a suspicious “ground-glass opacity” that they wanted to inspect, but they were unable to reach it during the bronchoscopy for extraction and testing.)
If I understand correctly, one of the TB tests they conducted has a 70% accuracy rate, but it didn’t show up anything in Alf’s case. There’s an ongoing culture test for TB bacteria that will take 6-8 weeks to bear results. In the meantime, Alf is free to go out again, as it’s not likely that he has active TB—I suppose that’s our good news this weekend!
The next big thing coming up for Alf is a full-body PET scan. The way it was explained to us, it’s like a glucose trap for malignant cells, and what they’ll be looking out for is something like a feeding frenzy.
I’m glad I took notes, if not I wouldn’t remember a thing! Last night, when I was deciding on a notebook to bring, I hesitated at selecting a larger, blank notebook. I hope I won’t have to use too many pages before we finally arrive at a diagnosis.
“Because God knew I had been a good person, or tried to be. I had devoted my entire life to following and serving God, giving up a promising career in medicine to become a pastor. And I wasn’t satisfied with just being in ministry but wanted to do great things for the sake of God, so I started up my own church. I was willing to live in a hard neighborhood, a place where my possessions and my family were often at risk. As a result, God was supposed to protect me and my family against the worst that the world had to offer.
But he didn’t. He had broken his side of the promise and allowed my third child to be miscarried. He had permitted my house to get broken into, our home violated. He had let my wife get breast cancer, right as we were planting a church. This kind of thing wasn’t supposed to happen to people who followed God. We were supposed to enjoy protection and blessing, not cancer. This was just so unfair. I felt betrayed by God because he had broken his promises.
Being a mature Christian and pastor, I tried my best to fend off this feeling. I reminded myself that I knew better and that there are no such promises in Scripture that a good life guarantees a lack of suffering. After all, Jesus obeyed his Father’s will but was persecuted and suffered terribly. The disciples followed in the footsteps of their Lord, and experienced the same. It says it point-blank in 1 Peter 4:12: ‘Do not be surprised at the fiery ordeal that has come on you to test you, as though something strange were happening to you.’ God never promised us a life free from trial and hardship, and I knew that. I had learned that in seminary and had even preached that exact same message to others on many occasions.
And yet, despite the apostle Peter’s words, despite all my good theology and good intentions, here I was, my prayer life infiltrated by the deep sense of betrayal I felt toward God.”
When I read “Blindsided By God” some years ago, my first thought was that I much preferred the author’s sermons. But I guess a book instantly becomes a better read when it becomes directly relevant to your life.
“Don’t spend too much time thinking about or researching what’s happening with me. When this is over, I don’t want you to look back and realise you haven’t done any of the things you wanted to do for yourself.”
Mood today: Restless. My husband’s still home on a doctor-advised/self-imposed quarantine, and he’s starting to worry that he’s burdening others at work. I told him to have an honest conversation with his reporting officer about what’s going on. I can’t imagine anyone not being understanding once they realise the full extent of his predicament.
Alf and I had a good chat yesterday about the “warrior” image that we like to paint of people dealing with serious illnesses. Maybe it comforts those on the sidelines to think of someone dripping sweat, with gritted teeth and clenched fists, shouting “I’ll beat this!” But it doesn’t quite work this way with diseases. To me, it’s more about regaining your balance after you’ve been hit with the news. It’s also about inner peace, placing faith in the professionals whom you’ve chosen to partner with, and trying to maintain a semblance of normalcy—while coping with physical symptoms.
A girlfriend advised me today to keep up with regular life and hope for the best, which is exactly what we intend to do! It’s tempting to think about clearing our calendars for November or putting things on hold, but I prefer to aim high, and this story is an inspiration.
“At 2.5cm, we might be looking at Stage 1, if it comes to that.”
“You looked that up already?”
“Yes.” (In my head I’m thinking, ooops, too soon?)
I’m not sure if Alf would rather have his follow-up visit sooner, but I prefer it this way for some breathing space. We have a clearer picture now, so it’s less scary than the first visit. (Again, I’m just speaking for me.) I’m not comfortable with the idea that Alf hasn’t been treated for anything yet, but I would rather have certainty before beginning on a 6–9month course of TB medications.
It’s definitely been tricky trying to work and keep up with my classes during this time! I’ll have to accept that in this early phase, it’ll probably be hard to do anything of value the day before an important appointment and for a day or two after, if there’s bad news. And, as I found out yesterday, it’s also hard to work efficiently while Alf’s undergoing a procedure. Thankfully, I’ve cleared all my writing deadlines for October! Will see if I can use the rest of the week to focus on school.
Turns out he’d liked my Milo/endoscopy story so much that he’d asked for the same drink after his procedure too. Except in his case, he wasn’t allowed to drink anything until two hours later.
In addition, there was no countdown from 20 for him, no blissful blackout, and he remembers the initial discomforts. Eventually he did drift into a semi-conscious state, but he knows he was coughing the entire time. After he was wheeled out, he had to be monitored for two hours and take another X-ray, and then he started sneezing all the way.
It’s a good thing I didn’t tell him about the lightness that I experienced even after being discharged from my procedure (because the sedation lingers). I walked the streets feeling irrationally happy, with Len’s “Steal My Sunshine” playing in my head—this I remember clearly!
Perhaps I should apologise for the oversell. 🙂
In terms of where we are right now, we’re waiting on a TB confirmation, and we’re also looking at two seemingly unrelated growths—one of which couldn’t be accessed during the bronchoscopy, so I’m not sure how this will be dealt with. I would say they’re small but I could be wrong. Malignancy is still a question mark at this point. Reading the reports, I think we can treat this as a localised issue. Our follow-up visit in 3–5 days will hopefully be enlightening.
As for how Alf is feeling, I don’t think it’s for me to speculate, but I’m sure it’s not great. For me, the hardest part is probably the five seconds before receiving potentially bad news. After that, it’s just like “Oh yeah, we’d talked about that.”
I’d messaged my girlfriend L last night—she’s a cancer survivor. She said because of her experience, she tells her kids that whatever will be, will be, and there’s no need for fear, if we’re willing to deal with things one at a time, as they come.
If this is what it has to be, then bring it on, I’m ready.