July 29 oncologists and petunias

Today is a bleary, drizzly, winter day. Bleak and heavy. Dark and oppressive. Cloudy and foggy.

How am I going setting the mood?

I was very nervous waiting to see the oncologist. Truth is, we still don't have a lot of information. This tumour type is not well studied. If I do nothing at all, he says I may live another 9-18 months; with chemo, maybe double that. For 3 months worth of chemo, which, as far as chemo is concerned is a relatively gentle regimen, I will take that option. Because of the liver metastases, tiny as they appear to be, surgery and potential "cure" are no longer on the table.

Then, all the "if"s start. IF, it responds (2/3 chance) and how well does it respond, IF we get tissue from the liver biopsy with favorable genetics and I can undergo immunotherapy, IF nothing else goes wrong.. If If If....

I went and told mum I was going to start chemo. She buried her face in her hands and cried. I hadn't realised that these last couple of weeks, she hadn't really accepted the reality of my situation. It was just words, a mistake. Until today. Fuck.

I am home now. I just made a coffee. I stood at my kitchen window. There is a brick wall outside, on top of which during the summer, I put some annuals in terracotta pots for a bit of colour. One of them is a lovely dark purple flowering petunia. Or it was during the summer. But, despite me not looking after it for months, unwatered and exposed to winter frost and cold and shade, which really should have killed it off long ago...No, its sticking its middle finger up, surviving, nay, thriving, green and lush (just not flowering because its out of season) like a common weed. My inspiration

July 26 trial by ultrasound

Today I'm pooped. I feel like I am on one of those roller-coasters, hanging on for dear life, completely at the mercy of....something else. 

Let me back the truck up and explain. So it was supposed to be simple - rock up to hospital in the morning, get an ultrasound, can we see lesion in the liver? Yes = book biopsy, No = do nothing. Simple. So, did they see anything? Nope. Good I thought, because I really don't want a liver biopsy, I aint ever heard anything good about them. Off I trundled home, and munched on some chocolate to break my fast (thanks cousin!) and enjoy the nice sunny day.

Ummm, not so fast. The hospital calls me at lunchtime. Can I go back today, to have another go, the radiologist wants to have a look himself. Ok, another fast, another scan, late afternoon, still cant see anything. Fine by me, my liver stays untouched. But no, they liaise with the surgeon & oncologist, they really really want that sample (that cant be good can it?) We'll do it with CT guidance instead! Grand.

Logistically, I've spoken to my cardiologist to manage my anticoagulation (yeah, I haven't mentioned, my January present was two stents into my heart arteries because they were blocked, and I have to be on blood thinners as a result. Guess what the main side effect of a liver biopsy is? Woo-hoo - bleeding!) And, because I am having chemo, I have to get my infected wisdom tooth/teeth out so they don't act as a source of infection which my body wouldnt be able to fight, so I had to arrange that as well. Who said nothing happens late Friday afternoon? After years of bemoaning Friday specials, who would have thought I would turn into one myself....

So you see dear reader, I feel drained. And nauseated. I'm sure its just stress. Everyone I deal with is so pleasant, I have to be pleasant back. But I get the look. As soon as I explain my condition, the demeanor changes, the chit-chat stops, it's all business. Oh, you're the one we've been discussing in our clinical case meetings...yeah, apparently my shit is famous...I think I'll go lie down now, yes, that sounds nice

July 25, surgeon appointment

I am officially weird. I consider that a badge of honour.

At least I have another piece of the puzzle, but it raises more questions. It turns out I have a very rare tumour of the pancreas, an acinar cell carcinoma (yeah, I'd never heard of it either). I will be having chemotherapy, an appointment made with the oncologist for Monday. We are still waiting for tissue analysis results to be completed at the Austin from the needle biopsies they took of the pancreas last week, (so results today were technically incomplete) and I am having an ultrasound tomorrow - if they can see any accessible metastases, we can set up a liver biopsy to get a bigger tissue sample for genetics, in case they can offer immunotherapy as well.

Oh, so this is what a pinball feels like. Ricochet from paddle to paddle, flip here, flip there. I'm dizzy. I want my sedate, routine, boring suburban life back. And I still dont know what I'm in for....All I can do is take things one step at a time, and I will. I am proud of myself that I didnt cry today. I had my list of questions, mostly about tumor complications (its adjacent to the artery feeding the intestine so that troubles me) Surgeon answered as best he could, reassured my concerns.

Calm, cool and practical, that's me! You work colleagues stop sniggering this instant!

There's not a lot to add, Í will update after I have been to the oncologist.

Intermission:

I started this blog part way through my adventures, the fat lady on stage, microphone in hand; so for those who dont know the background, here is the backstory: (I include some medical terminology for my colleagues, everyone else the fancy words are just descriptive adjectives, just ignore them)

October 2023, out of the blue, 1st ever episode of pancreatitis. CT showed a complex cyst, MRI suggested a tumour, subsequent endoscopic FNA biopsy - normal tissue. Seemed to be acting like a focal inflammatory mass....

We elected to monitor, a followup MRI December 2023 - damn thing had got smaller. Everyone breathes a sigh of relief. Whoever heard of a cancer shrinking? Well, Hello!

Monitor some more, MRI March 2024. Oh-oh, it's got bigger again. But the radiologist provided a very floral description as to why this had just SO many features of autoimmune pancreatitis. PET scan disagreed, favored tumour. Another biopsy, another negative result. Lucky me

What could they do? Nothing definitive to go on. Wait a bit more, another MRI July 2024. Well, would you look at that, its metastasized. Now I'm fucked. So here we are....you're all caught up

And the damn luck fairy, didnt even have the decency to let me win Lotto to balance my bad luck. No, $8.55 does not cut it!

July 18, biopsy day

Well what a fine drizzly day. Today they are going to have another go at getting a tissue sample. I arrive at admission, the usual dance from clerk to clerk, check my papers etc. I always smile because they can't pronounce my name. Ever. 

Anyway, the admission nurse, Deb, went full mother hen mode as she went through her checklists, have you lost weight? Do you have stairs? Have you had falls? I could have had fun but I restrained myself. 

Then the gowning. Who was the sadistic so & so who invented hospital gowns? At least they gave me hospital issue mesh underwear (get your head around that concept!) so my ass wasn't on full display...I caught sight of myself in the mirror as I went past, now picture this: bare feet & legs, dangly blue loose fitting gown, open at the back, bright red hair net cap. Wolf whistle. The catwalks of Paris ain't got nothing on me...

The theatre waiting area, on my trolley with pink side bars. Just perfect.

While waiting to be wheeled in, the walls are plastered with photos of the staff's pets. Mostly cute doggies, it was a nice touch.

Then down to business, into theatre, beeping, screens, bustle & equipment all round. "Just a little prick now" ouch! They put a guide into my mouth which I had to bite on, for the endoscopic ultrasound guide I assume, and then off I went.

I always wonder at this time, under anaesthetic, what happens to the psyche? Does it wander in some misty forest? Does the soul leave the body? Are you vulnerable to spirits? Dunno, I didn't find out. 

What's odd, I think I dreamed. I don't remember that before. I remember shapes, indistinct, nothing else. Probably it was my consciousness making a comeback. When I woke up, you know the first thing I did? I burst into tears. I fucking stated bawling. Like a baby. Poor nurses. The shit they put up with.

Now I'm up on the ward, writing this. I think I'll have a nice bed rest now

july 17 chaddy

This morning I went to Chadstone to get a new shaver. Somewhere I haven't been for years. 

OMG, what a soulless, kitsch  abomination of a place. No wonder I avoided it like the plague. Miles of glass and fake marble, zero atmosphere. Sterile. I'm sure you've all been there or similar. I wonder if this is what Hell looks like these days? Conversely, imagine one gets to Heaven, and its like, the Chadstone food court. Oh my. I got out as soon as I could.

Today is a rest day. I suppose I will review my advanced care directive and clean up some more of the paperwork scattered around...Tomorrow I'll be in hospital for endoscopic FNA. Not sure I really see the point, but I suppose it will help if they get a tissue sample, maybe there are biomarkers which may qualify me for immunotherapy. Or something. I allow myself dreams at this stage.

July 16 PET scan

I think I will start a blog to document my adventures during this time.

Today I had a pet scan. Interesting process, but at least I didn’t have to take my clothes off. They sat me in a private room, and the nice nurse put an iv in and set up a small infusion bag with radioactive glucose, then quickly ran away, so she wasn't zapped. I had to wait for one hour, and I wasn't allowed to move a muscle, not even to swipe on the phone... So that the glucose would go into the appropriate areas and not just into my muscles. I had to entertain myself by watching daytime tv. Sadly, the most entertaining thing was the infomercials. I learned all about air fryers. But at least I had a reclining armchair. (I only played with it a little bit, just a few wee ups and downs, I was too scared of incurring their wrath)

The scan itself wasn't too bad. It took about 20 minutes as I was fed through a machine. Of course I had to lie perfectly still, arms outstretched, as if I was tied to a rack. Quite medieval really. 

But I entertained myself by checking out how clean the interior of the tube was. And yes, I did find some dust. At one point my mind began to wonder, I was so bored I began to have erotic fantasies. In the machine. My next thought was oh my God, That will show up as extra blood flow in a certain area I had better stop this immediately. Needless to say, the specs of dust became much more interesting!

 After that there were no dramas and I was allowed to go home with strict instructions I was not to go near other people in case I irradiated them. Jolly good. Results will be available by the time I go in for biopsy in a couple days. I don't want to know yet. I mean, who would be keen to confirm they have liver metastases right? Last MRI already suspected it, I am just going to play computer games and forget about this - for now.