Nov 18 - Jaundice pays a visit

Well I didn't think I'd have an update so soon! It never just rains...

So anyway, after cruising last week, this weekend I noticed my urine was very dark, like a well aged cognac, or Metaxa brandy, and I naturally assumed I was too dry. Except drinking more water didn't seem to make any difference. What else could it be? 

Now I do urine samples as part of my trial, which always have a trace of blood, (I have a kidney stone on CT and am taking blood thinning medication, so we have always assumed the stone jiggling around was causing the micro-bleeding) so maybe it was just more blood leaking causing the darkness? 

But then I was also itchy the last couple days, all over, including my palms. That suggests liver...

Ok, so our suspects in this mystery are:

Dehydration - probably ruled out

Blood in the urine - has form

Liver damage - new kid on the block

So, Sherlock Holmes attire on, I trundled off to the ever suffering GP today, with the above story. "I need your help in solving a mystery" I said. (I really did) A urine dipstick was all that was required. Culprit nailed! Bilirubin. With a tiny trace of blood. He peers into my eyes..." you know, your eyes do look a bit yellow, I think you're jaundiced" But how? I feel no different, except itchy, and my serum bilirubin last week was 6 (bilirubin determines the yellow colour and is normally below about 25 from memory) This makes no sense, how did the liver go off so quickly, and I didn't even notice? Need more blood tests to figure it out.

Naturally as soon as I got home I ran to the mirror to look at my eyes. Yep, there it was. Clear as day. The whites of my eyes had gone yellow, like very old paper left in the sun, especially around the periphery.

Back to hospital. Bloods done. Bilirubin 84, liver functions triple last week's results (that's bad) consistent with obstruction, somewhere... explains the appearance of jaundice like an unwelcome houseguest!

There was no indication of blockage on last week's CT, so MRI booked for later this week, at 6.30 am, mind you, to figure this out. I assume one of the tumours is squashing a liver duct somewhere, not a big surprise with the biggest of the twenty blobs over 3cm wide.

Stay tuned, I will continue this entry once I know the result and the plan...

 

Update - Friday 21 Nov

Had a chat with the oncologist today. The bilirubin has gone down a bit (can someone send the memo to my itch please?) Liver function enzymes are slightly worse. MRI doesn't show anything acute, the bile duct is only marginally dilated. There have been background discussions with a gastroenterologist regarding stenting, and the decision is that because the bilirubin is falling, and the duct not dilated, a wait and see approach will be adopted. Bloods again next week for review purposes 

Yeah, I know I'm going to need a stent at some stage, but. hey, I'll go along with this, for now.

Anyway, life goes on. I spent today's sunny morning mulching and spreading manure in the garden. Normal things. Important things. Fuck cancer.

 

 

Nov 15 - cruising for a bruising

The past week has been interesting.

Monday I had my first ever blood transfusion, only one unit. I was really quite nervous about this, having seen reactions in the past. Naturally I assumed I would have one! Things didn't quite go as planned, I rocked up 8.30 as instructed, only to discover my cross match would have to be done all over again, the supposed one hour wait turned into four, but, you know, I'm quite used to waiting around in hospital these days...sad really, didn't bat an eyelid. Besides, I had a surprise visitor turn up, which both brightened the day and made the time pass quicker!

I have to say, it was quite surreal watching it go in, thick and red in the drip line instead of the clear fluid of prior drips. I was sort of fascinated.

Pleased to say, I didn't have a reaction, and my hemoglobin rose from 91 to 98, still nowhere near the 135 average for a male, but let's take what victories we can get...

Tuesday I had my meeting with the oncologist, the sum of the six monitored tumours has "only" grown by 14% since beginning this treatment 6 months ago. Again, you take what victories you can... While that remains under 20% I can continue this trial.

And if I exceed those parameters? Then what? Good question. It's in the lap of the Gods. Maybe there will be another trial to jump to, but more likely, it will be the start of the downhill run to palliative care and a plot in Springvale...

Actually I was more excited about the second finding, that for the first time in months, I had lost no weight. That I consider a major victory. Thank you to full cream ice cream, milkshakes with a scoop of sustagen and a dollop of peanut butter, yoghurts and protein drinks. Food remains problematic, I have a lot of trouble. I can sort of manage rice and pasta in small portions, I can't do bread anymore, I certainly can't eat meat, although I can get a few mouthfuls of fish before gagging. I've found the stronger the flavour, the more palatable, so I have been trying rice or stir fry with Asian sauces, especially sweet chilli...

Alas, it may be short lived. The last couple of days I have been feeling queasy all day. I dread eating and my intake is down. It's weird, forcing yourself to eat, in the hope you don't throw it all up again. I am considering starting that Maxolon after all, I'll just see how it goes over the next day or two. Oh, the bucket is next to my bed again...I can assure you it's not just ornamental!

Wednesday, back to see the respiratory physician. Hospital three days in a row. Man, I'm living the life! This was about that cough when I talk. (Unrelated to the cancer, because I needed something else to torment me, and let's not mention the back pain. Enough digression) Anyway, it's mostly better, there was no further talk of bronchoscopy and I left the office a happy camper.

Apart from that, it's one day at a time, I did plant tomatoes, why not? (Mind you, the weather isn't helping) I'll worry about pests and fruit fly later... pottering about the garden is quite relaxing. I mean, I don't do much, pull the odd weed, a bit of pruning, a bit of repotting, time passes...