Wednesday 16th, just as I was beginning to revel in new found feelings of body strength, physical energy and emotional confidence, I received a phone call that shattered me. It was my oncologist following up on the previous week’s CAT Scan results (I call this CAT 2, with CAT 1 having been conducted back in June).
Not that the CAT 2 results had been bad in themselves. Far from it in fact. Because overall they were good and had cheered me immensely, featuring good news like:
- lymphoma masses having shrunk to about 50% of what they had been (e.g. things with a previous maximal dimension of 17cm, were now down to about 8cm)
- the aorta no longer being deviated from its preferred alignment
- spleen and pancreas appearing almost normal again…
So why the phone call?
Well, he was following up on the hydronephrosis of both kidneys. Because while it seemed stable in my left kidney, it was now even worse in my right compared to CAT 1. My right kidney had stretched / enlarged even more it seems.
Hydronephrosis sounds scary… until you realise it merely means the kidney is swelling due to urine not being drained down the ureter to the bladder. Usually this is due to a kidney stone slightly, or completely, blocking the ureter. But in my case it is a conglomeration of swollen lymph nodes encasing both ureters and squeezing them shut that’s causing things to back up. If left unresolved there can be damage to the kidneys and considerable (if not total) loss of function.
So he wanted me to undergo a renal scan and – if the urology team felt it would save kidney function – for me to allow the immediate insertion of a stent to keep my ureter open, let the kidney drain and return to normal size and hopefully retain whatever function still remained.
One, maybe two, plastic tubes in me
The idea just did not appeal. Especially when I began to read of possible painful side-effects, strange sensations of needing to pee all the time, risk of infection and possible restrictive impact on physical activities. Oh, and of course there is the possibility of there being an external stent draining into a bag… shudder.
So the next few days… and especially the day of the penumbral eclipse… were turbulent for me as I contemplated many questions and experienced many emotions. Maybe my kidneys are simply bigger than most peoples? What if all those anti-biotics to treat salmonella in my early 20’s had damaged them… after all no one had ever scanned my kidneys before; couldn’t this be my ‘normal’ size? If my abdominal lymphoma masses were shrinking, why hadn’t my ureters opened up and allowed urine flow freely again? If I have plastic tubes in me will I be able to do that lovely, abdominal-driven dolphin kick next time I go freediving? How will life be if I feel I have to pee again just 30 seconds after I empty my bladder? What if there’s pain in my bladder or abdomen all the time? How will they know when, or if, the stents can be taken out in the future?
Most of these questions… and many of the deep fears, worries and concerns underlying them… are still unresolved and unsettled. Because, despite the renal scan being conducted last Thursday (just two days after Chemo 5) I’ve heard nothing. Because the renal team have now to review the details of the scan and talk to my oncologist… which at best might happen tomorrow as he returns from holiday. (Poor bloke. He thinks he’s coming back to a patient who has gleaming kidney function thanks to the prompt insertion of stents. Boy is he in for a surprise!).
Seeing the light. For 30mins.
Moments after they injected it into my arm I could see a plethora of white spots on the black screen as my blood circulated the radioactive dye around my body. Then, within a matter of minutes, nay seconds, those spots began to reduce in number and concentrate in my left kidney… which grew visibly brighter and brighter as it filtered more and more of the dye out of my blood. Then my bladder began to shine too as it received the incoming waste.
But my right kidney? Not much to rejoice about there. Because, at best, during the entire 30mins it managed to turn a faint grey colour. From which I would estimate my right kidney is filtering my blood at about 5-10% the rate the left is (and I am all too conscious that my left kidney may not be functioning at 100% either).
A turn of phrase
Now that I have that visual, and am no longer relying on some typed words and a man’s voice telling me my kidneys need support, I am more at peace with the notion of plastic tubes inside me. Yes, it is still not pleasant to contemplate… especially the notion that the op might happen this week… but at least I can more readily accept it is warranted than I could a few days ago.
But another, and perhaps even more significant step in helping me come to terms, came through a cousin’s insight. When shown my CAT 2 results her medical training enabled her reinterpret a phrase for me… a phrase I had previously thought was bad news.
As this was CAT Scan 2 (my CAT 1 having happened in July) I had assumed the words “preserved cortical thickness bilaterally” meant that the cortexes of my kidneys were still the same size as they had been when scanned in July. This hadn’t struck me as good news. Because, after all, when your abdomen and inner organs had been swelling up and enlarging like mine had been, the last thing you’d want to read is that some of that size had been ‘preserved’ from the time of the previous scan.
But apparently this “preserved thickness” was actually good news. Very good news in fact. Because it meant the outer cortex regions of both kidneys (vital to the filtering work they do) seem to still be in reasonably good shape. If they weren’t, they would have shrunk, losing thickness and, along with it, the ability to clean my blood.
So, buoyed by that insight (thank you cousin!), I am hopeful that whatever form the stent(s) take that it is only a temporary measure which can be dispensed with once my abdominal lymph nodes have shrunk back sufficiently to no longer impinge on my ureters.
Just how much…
… shrinking they still have to do I am not quite sure… but bloods from Oct 21st showed a new low for my LDH of 351. So it seems likely they are continuing to shrink back. Which means, hopefully, that any stent(s) i might have to endure will only be temporary.
Time will tell.
And of course, when I have time and energy, I will tell you.