My stent stint

Recent weeks have seen a heartening increase in the number of inquiries about how I’m doing – and the number of good wishes coming by email, post and via parents and siblings. They, along with the many offers of treatments from friends and colleagues, are all very much appreciated. In time I will get back to you each personally but for now, in order to preserve my energies, these updates will have to suffice.

And the need to preserve my energies became very noticeable recently. Because what with there being complications around my stent operation and Chemo 6 happening just a few days later, this time it’s taken me almost 3 whole weeks to begin to feel good. (Whereas after Chemo 4 or 5 it took maybe 1.5 to 2 weeks).

Oh, and as my stent experience brought up a lot for me, this is quite a long post. So I will write separately about Chemo 6 soon.

My stint with the stent…

… began on Tuesday 5th November.  It didn’t begin well.

While being prepared for the op, someone handed me an A4 document outlining the stent operation. Apparently, I was to undergo Antegrade Ureteric Stenting during which a hole would be made in my back, my kidney punctured and the stent pushed through it and down into my ureter and bladder. A second stent was then to be inserted into the open kidney and would be left hanging out my back with a bag attached to the end of it.

I was stunned.

No explanation as to why they weren’t going up my penis and through the bladder as I had expected (even though that can be v painful I had spent days mentally preparing for that approach, not this one). No word of how long the bag would stay hanging out of me. Or how I was to live with this new appendage after I left the hospital. I was floored. All the more so because the previous day I had spent considerable time in the hospital trying to find someone to discuss my concerns with.

1. Does the stent have ‘non-return’ valves? If not, then surely any time I lie flat on my back or whenever my torso is inverted (e.g. when upside-down during a free dive, or with head below hip level during a yoga posture) any urine already in my bladder will run back up the stent and into my kidney. Nature doesn’t want that to happen, so what damage is that inverted flow likely to cause?

2. What if the stent moves and pushes into my kidney? Or presses against the wall of my bladder? Will I feel pain? And even if I don’t feel pain is that a guarantee that the stent is not moving around doing damage anyhow?

3. How long will the stent be in? And how, and how often, will they check to see if abdominal lymph nodes have released their grip on the ureter?

4. I’ve read about people feeling they need to pee all the time (because the stent creates the permanent sensation of there being ‘something’ in the bladder to excrete). If this happens to me, can the stent be taken out easily? Because I’d rather not live like that thanks very much.

But… despite my best efforts… I had very little luck. Not because the staff didn’t care (the people I spoke to went out of their way to try and find answers for me). But simply because the urology team don’t have the staff to spare to spend time addressing such questions on a one-to-one basis. So I was very grateful to find a nurse through the radiology department who left me feeling more reassured. Because, while unable to address all my questions, she did assure me that in all her years she’d never heard of back-flow causing problems. Nor a stent shifting around and causing the kind of damage I feared.

So at least two of my concerns had been addressed before I got ‘the bag shock’ the next morning.

But the bag shock was trivial

Compared to what happened next.

Just as I was digesting the notion of the bag and was wondering what reaction I’d get if I called the whole thing off… (I preferred the idea of living with 1 kidney over 1.5 kidneys and a permanent bag hanging out of my back)… I felt an itching sensation on my left inner forearm. Looking down I noticed my skin had developed a blotchy purplish hue. Nurses stopped the drip and set up a new cannula in my right arm. A logical reaction. Because, after all, chemo wears out veins. So chances were those in my left arm could no longer cope with cannulae or chemicals.

But within seconds of that new cannula starting to deliver in my right arm, the same symptoms started. This time with the added extras of extreme dizziness, nausea and an overwhelming desire to lie down and sleep. In fact I had started to feel so bad, so fast that I had several moments of deep fear that this particular sleep might be terminal.

However, quickly realising it was not a vein issue but an allergic reaction to the anti-biotic, the nurses stopped everything, postponed the op and put me under close observation. Thankfully, much to everyone’s deep relief (my own included I can tell you!), within about 30 minutes or so I had recovered sufficiently to allow them try an alternative anti-biotic. Nervously, I agreed and one nurse sat watching me hawk-like as it was dripped in over 20-30 minutes. This time however, no allergic reaction. Phew!

So, 1.5 hours behind schedule, I was wheeled to the X-ray unit for the stent operation.

Dr. Relief!

When there, the operating doctor amazed me with how gently, honestly and thoroughly he explained everything and addressed my concerns. My fears melted away in minutes.

He’d never heard of problems arising from back flow. Unlikely that the stent would move as it was designed to kept in place by the curves at either end (and they’d be in the right place in both my kidney and bladder because the stent length would be relative to my height).

The bag was to stay in for just the few days I was in hospital. If the stent functioned well the bag would be removed the morning I was to be released. During those days I might notice the bag filing with pink fluid due to blood – from the damage caused by the operation – mixing with the urine coming out. (I usually faint at the sight of blood, so this didn’t appeal. But sure enough, as the man said, the fluid was pink and not red. So fainting didn’t happen when I looked at it).

These stents would normally be replaced every 6 months because particles can build up in them causing blockages and/or infections. But because of my condition, mine might be replaced in 4 months time… unless scans showed it could be removed entirely.

The dye-assisted renal scan was to repeated in late Jan / early Feb to asses how much kidney function might have been recovered. The first renal scan showed my left kidney filtered 80% of the injected dye; my right doing just 20%. His experience suggested that, given the damage already done (some cortical thickness has unfortunately been lost) perhaps my right kidney might rise to 30% of the dye the next time. Not as much as I’d like, and I will be visualising and aiming for more in the interim, but clearly even 30% would be preferable to 20%… which in turn is streets ahead of my own 5% estimate (which was based on the visuals I could see during the first scan).

So, reassured by him on many levels, I allowed them inject the happy juice.

And then I came to appreciate that those who described its effects as akin to being slightly tipsy, really need to experience freediving. Or maybe just snorkeling. Because the sensation was more like the lovely bobbing sensation one gets when floating in a gentle swell on the ocean surface… and it brought back fond memories of a quiet inlet and a deeply nourishing dive day with a close friend in Muinis, Co. Galway.

Next thing I knew I was in a ward bed – with a warm, squidgy bag of bright pink fluid for company.

Not taking the piss.

Seriously.

No matter how urgent or often the urge to go, nothing came out. Also, quite often I found that no sooner had I shuffled back to the bed, I’d get the urge to go again. But even if I honoured this repeat urge, nothing. Then some time Tuesday evening 4 or 5 drips. Honestly. Just those few drips. Then some time Wednesday, after 30minutes of shuffling along the corridors with a visiting friend, I managed perhaps a teaspoon.

But, despite that glimmer of hope, I was still worried. Because come Wednesday evening, despite having drunk several litres of water, and having sat as upright as I could for long periods to maximise gravity’s involvement, that was all I managed in all that time.

It left me wondering whatever had happened to my left kidney? Why was it no longer sending urine to my bladder? Could the anti-biotic shock have done something? Was some damage done during the operation? Maybe the stent is somehow blocking my left ureter’s outlet into my bladder? I was desperately searching for explanations. Because, surely if my left side was still functioning, something more than a teaspoon worth of urine ought to make it to my bladder in a 36 hour period?!

The oncology nurses couldn’t explain it and even if she could have, the urology consultant visiting me every morning and evening, simply didn’t – only compounding my concerns by smilingly telling me I was worrying too much and that everything was going to be okay. (Sheesh! Seems that in her mind my asking questions meant I was worrying. Whereas in my mind, her not giving me an explanation meant she either didn’t know (worrying!) or knew there was something wrong but couldn’t bring herself to tell me (even more worrying!). As if cancer wasn’t enough to have on my mind!).

Close bag. Open flood gates!

Then, near midnight on Wednesday night, a night nurse closed off the outlet to the bag. This was to allow the stent take over fully – after which all the urine produced by my right kidney should travel down the stent to the bladder for me to pee. Sure enough, within 30minutes yet another urge to go produced surprisingly generous, and thankfully pain-free, results. Happy days!

Because this meant that, even if my left kidney and ureter were still in trouble, at least my right kidney and ureter seemed to be up to the job. And then… some time during a 4:00am toilet visit… the penny dropped! 😉

Plumbing basics

The ureters enter the bladder from behind (posterior). So any time I lay close to horizontal, gravity was going to make urine leave my bladder via the permanently-open stent. It would then travel up the ureter toward my right kidney from where it would meet the open holes of the second stent before making its way into the bag. Simply because water is always going to drain through the lowest exit point of any system.

I put this theory to the night nurse. He said it sounded reasonable but couldn’t be sure because he wasn’t involved in urology. The next morning when I outlined the problem and my theory to the doctor just before he removed the bag, he seemed surprised I’d had a problem urinating… but confirmed that my plumbing / drainage theory sounded plausible as an explanation of why my left kidney appeared to have taken a break.

So it was on with removing the bag.

Debagging

The term “baggy” had been used to describe my right kidney after the first renal scan. Because the calyxes didn’t have the normal distinct edges one would expect, and instead appeared loose and “baggy” in shape. However, with just two days of stent and bag there was obvious improvement with my calyxes which now showed crisper, more defined and more normal-looking edges. Thank you stent!

Not quite so cheering however was the impact some nodes were still having on the ureter.

On the X-ray screen he showed me the dye making its way down the inside of the stent and arriving into the bladder with no issue. But he also showed me how the dye was trickling down the outside of the stent (between it and the inner walls of the ureter) only to stop at a point a few inches below the kidney. Where some swollen lymph nodes were blocking the ureter.

That of course was just a few days before Chemo 6 did its thing. So I have every hope that those particular nodes will have shrunk back a bit since then. I am also hopeful that they will shrink back even more in coming months as I continue with medical treatment and also explore and adopt the natural strategies suggested by many (but most especially those suggested by 25 years fNHL* survivor Robert Miiller).

With both a CAT and PET Scan coming by end December / early January… the first of 2-years worth of Rituximab sessions on Jan 7th… and a renal scan to follow at the end of that month… I’ll know the full story soon enough.

Meanwhile it’s on with the research, reading, exploration, good foods, gentle walks, relaxation, coping with the nausea (yip, still happens), times of deep tiredness, working with my emotions (perhaps the most challenging being fear that arises when I notice any tiny change in any part of my body)… and when energy allows reconnecting in a meaningful way with friends and family… and, perhaps most important of all, being very, very careful about what I reintroduce into my Life. After all, as one friend cautioned, its very clear where my old Life leads to.

Thanks for staying with me on the journey. Your support and companionship is appreciated 🙂

* Follicular Non-Hodgkin Lymphoma

 

Low LDH eclipsed by a kidney

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.

I rejoiced.

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.

Going well. But please don’t stop.

The requests for updates are heartening. It’s good to know so many of you are concerned and thinking of my well-being from places as distant as Germany, Australia, New Zealand, USA, Poland and South Africa as well as from both the UK and, of course, Ireland

LDH TRENDING IN THE RIGHT DIRECTION

My most recent blood results (30th Sept), just prior to my 4th bout of chemo, showed LDH levels are now down to 410. This was great news for me. Because it means my internal inflammation stresses are now in the high-end of the “normal” range. Of course I’d love them to be down toward the low end of the normal range, but at least this progress suggests that the nodes which had swollen in my abdomen are well down now. However, it will be at least next week before I get results of yesterday’s CAT scan – which is the most accurate way they have of gauging things internally.

Meanwhile, externally, the swellings on my neck and ribs are down to about 90% of what they used to be… and some of them have disappeared entirely. Plus Live Blood Analysis shows my body is now producing far healthier red blood cells than back in June and July when my symptoms were at their worst (more on Live Blood Analysis in due course).

Added to this good news is another breakthrough. A breakthrough I’ve been desperately hoping for: increased range of movement and strength in my right arm.

BIOPSY LUMP FADING

My body reacted to July’s armpit biopsy by forming a significant lump. This didn’t surprise the Doctors I spoke to about it. Because, as they explained, the body doesn’t tolerate empty space and would have moved to fill the gap left by the removal of that lymph node. The resulting fluid-filled lump was about the size of a very large grape or small walnut – and from it at least two sinewy lines began radiating down the inside of my right arm, reminding me of spiders legs (a very large spider with 3″-4″ legs!).

Those lines felt very solid, very firm. And every time I touched them to check for changes I would experience an all-over, wincing horror reaction – which I can only liken to the visceral reaction I would get when someone scratches their nails along a blackboard (remember blackboards?!).

I also experienced severe pain in those lines any time I moved my arm much… and over the weeks both the lines and the pains began to move further and further down my arm and seeming to set up isolated outposts… in my elbow joint first and then down toward my wrist (near the pulse point). I say ‘isolated’ because the lines weren’t continuous. Instead they existed in three distinct patches at those three places along my arm – along with a gradually increasing area of retained fluid in my forearm giving it a somewhat Popeye-esque look.

Added to the horrible sensations when deliberately touched, was the pain when those sinewy lines were touched or stretched by accident.

Rolling up my sleeves. Reaching for cupboard or car doors. Putting on or taking off a t-shirt, jumper, coat (socks and shoes were a nightmare!). Hugging people. Trying to play guitar or bouzouki. All these and more would produce severe pain in each, or all, of the three sinewy areas… and of course the idea of the “cancer spreading” surfaced many times in my quiet, alone moments. Along with fears of how life might be with restricted use of my right arm… or it’s loss entirely. Typing, freediving, music, driving, dressing, wiping my bum, brushing my teeth… oh gosh… what if…?

MAYBE YOGA? MAYBE TIME?

Then about 4 weeks ago I hit upon the notion of trying some Yoga. Basic sun salutations each morning. Severely restricted and clumsily executed thanks to a combination of my right arm’s challenges plus the considerable folds of fat and fluid still retained around my belly and thighs. But an effort at yoga nonetheless.

I honestly can’t say whether it was the yoga… or whether it was just that as my improvement continues my body was able to sort those issues… but in the last 3 weeks the lines have disappeared, the Popeye-fluid has faded away and I am regaining strength and range of movement in that arm. Oh, and accidental touches or stretches no longer induce pain or other discomfort.

This leaves me more able to explore playing music again (which, to be honest, I had also been avoiding because of the emotional upheaval It could induce – not just because of the physical difficulty of playing). It also leaves me hopeful I might soon be able to swim and thereby get some full-body water time. A few tentative swims in a local pool at first… then eventually (maybe by Christmas?) enjoying a freedive in the shelter of Mullaghmore harbour. Or maybe (dare I hope?!) with Dusty in Doolin. Because, while paddling on Rosses Point beach is wonderful and continues to do my Spirit good, it’s not quite the same as moving my whole body in the water… especially when accompanied by the wonderful sensations possible while gently holding my breath and mooching around at -5m or -8m.

But first I’ll have to build up sufficient strength to put on a wetsuit. Because they do take a lot of work even in the best of one’s health. But, if progress continues as it is now, this is only a matter of time. Meanwhile…

… PLEASE DON’T STOP….

… the drumming, the prayers, the spells, the dancing, the meditations, the thoughts and more that you’ve been sending. Because I’m not out of the woods yet.

Nor might I ever be.

Because according to Robert Miller, the mean survival time for Follicular Lymphoma is 10 years – during which it could all flare up again and more chemo might be needed…. and with two veins ballooning during the most recent session, and possibly long-term resistance making it less effective each time, that option might not always work for me.

So, even though my progress looks and feels good right now – and I am deeply heartened by Robert’s living so well with this for 24+ years – I would ask that you keep those supportive thoughts, actions and energies coming. Even those tiny, second-long “I hope Sean’s doing okay and is enjoying a freedive or is happily playing some music somewhere” ones.

In a quantum universe those thoughts can make a difference – and are appreciated and will be returned to you manifold.

Hello Cancer

Never figured it would happen to me. But it has. In June I was diagnosed with Follicular Lymphoma – a slow-progressing form of cancer that I might have had developing for perhaps 3 years (based on some symptoms). Or maybe even 15 years (based on some other symptoms). No one knows.

Things came to a head around June 13 – 20 when over a few days my normal twice-daily bowel movements ground to a halt. Lots of water, herbal teas and epsom salts produced minimal results and the pain was getting worse as the days progressed. So I headed for a GP who admitted me to hospital for scans. After that, the story gets a bit complicated with many turns… and a lot of it is now a blur… but, while medical laxatives began to produce some movement and allowed me start eating again, the medics went about their ultra-sounds, CAT scans and biopsies.

They discovered my issues were being caused by hundreds of abdominal lymph nodes swelling up and squeezing on my intestines and thereby stopping my bowel movements and peristalsis. Not only that but the steadily increasing mass of nodes was also slowly closing my ureters causing my kidneys to enlarge under the back-pressure (even though I’d noticed no change in urinary habits, blood results showed high creatinine levels and the consultant told me kidney function was down to about 60%).

But there was a chink of light: my colon and other organs were clear of cancer. So I figured that, in time, I could use diet and lifestyle change to reverse it all.

But there wasn’t time.

My gut was telling me this. Literally and intuitively. I just knew there wasn’t time. Even though medical laxatives (bless ’em!) had got me back to a much-appreciated once-a-day habit. Because the cramping pain and terrible hardness in my abdomen were getting worse.

So I felt I had no option but to take the offered chemo. And I’m glad I did. Because it was a close call (as those of you who saw me in hospital, so weak I could barely talk, already know). Without that chemical intervention I wouldn’t be here right now. This was confirmed by the medics who later told me that in the space of just one week (when I was trying my best with lots of green foods at home) my blood LDH levels had almost doubled from an already dangerous high of 600 to 1111 in just those few days.

Where are they now?

Along with other improvements in my blood (including red blood cell counts, more ‘normal’ levels of white blood cell levels and normal creatinine levels – indicating kidneys are functioning well) a blood test on Monday last showed LDH levels below 600 again. That doesn’t mean I’m in the clear just yet though as they’d like to see them drop well below 400. But it does mean the chemo, for now, is producing the desired effect.

I say ‘for now’ because it turns out Follicular Lypmhoma cannot be cured with normal chemo. Apparently they best they can do is ‘knock it back and hope it behaves itself’… and if it doesn’t? Well their only other suggestion to date has been bone marrow surgery. But the oncologist doesn’t want to go down that road given the high mortality risk of the procedure.

Not thrilling news as you can imagine. But my energy levels are now way higher than they were a few weeks back, and the small lumps along my ribs and neck are even smaller than last week (some have entirely disappeared). So I am hopeful that the next blood test, scheduled for Oct 3rd, will show a further drop in LDH levels… and that my two remaining bouts of chemo will see them settle even lower… and that diet and a new way of living can do the rest for me. In that regard I am particularly cheered by the news that some people have been enjoying life with Follicular Lymphoma for over 25 years 🙂

Meanwhile…

… I hope those of you who were puzzled by my extended silence can accept it was not in any way personal. Be assured that as my mental, emotional and physical energies recover in the coming months, I will start to follow-up and make contact again.

This however does not preclude you in the meantime reaching out and making contact with me by post, email or phone. Far from it. Because all those cards, voice messages and prayers and more are helping and are appreciated. But please don’t expect an immediate, or indeed any response, for now.

Because my priorities right now are eating, sleeping, gentle exercise, rest and quiet time…