Stent and Chemo 6 update

Sean Callagy Live Blood Image 2013-11-21
My blood ten days after Chemo 6

A lot… an awful lot… has happened since my last post. And, yes, a lot of what has happened has been awful. Not physically awful like my reaction to that anti-biotic, but emotionally and mentally awful. Because, while November and December were replete with signs that I was getting steadily better and better (including a nicer Live Blood Analysis profile – see photo), I was finally beginning to feel it all.

Very deeply.

I guess it’s the reality of how we humans deal with trauma. While in the thick of something we do all we can to get through. Including dampening our emotions. Then, when it’s all over, we collapse in our own individual ways… and then find our individual ways of recovering in our own time. That’s why I’ve been so quiet these last few months.

Because, despite having so much to tell you about – and despite the fact that most of it is thankfully positive – I just couldn’t bring myself to share it. Because recounting meant recalling; and recalling meant reliving… and there was no way I could do that while simultaneously trying to admit and process huge post-traumatic emotions while also researching and informing myself about my survival chances and prognosis if I declined the suggested post-chemo, two-year maintenance treatment.

Let me summarise the roller-coaster for you…

Reading the stats on your own chances with a cancer that medics say is incurable is horrible beyond words. Add to that the upset of the last six months finally kicking in. Then compund that yet again with new fear that grips when you notice a lump is slightly bigger than it was yesterday. Then a Great Northern Diver eats a crab in the ocean just yards from you and the wonder of Life triggers joy… and then you remember that since having your stent fitted in November, three men you shared a ward with have died with cancer and… oh, and you have it too.

So with all that emotional see-sawing going on, sometimes dozens of times a day, putting energy into blogging would have been unwise.

However, mid-January I started Art Therapy in the Sligo Cancer Support Centre and am now feeling more at home with my new reality and the plethora of emotions it’s triggering. Yes, there are times when the horror of it all still comes crashing through… but those times are growing less and less frequent now. Which means there is more room for joy and there is a very welcome (but still fragile) confidence growing as my new epigenetic-focused lifestyle seems to be taking hold nicely.* Time will tell just how well-placed that confidence is. But if Robert Miller was diagnosed at 45 and is still going strong at 70+ now – and his oncologist works with two members of the team who identified the 109 genes involved in Follicular Lymphoma – there’s every chance he’s on the mark with his suggestions how I can tip the eipgenetic balance back in my favour.

So, I finally have the energy to update you to the end of November…

Stent almost unnoticeable

Thankfully. Apart from two, fairly non-intrusive phenomena.

The first is an occasional sensation of pressure inside. Somewhere around where my right kidney is. Only occasional, and not painful. Just mildly annoying. As it would be if you felt someone’s finger pressing into your back and they didn’t ease off when you objected. But shifting a bit in my chair or standing and moving generally releases it. It only happens once every two or three days so, as it’s preserving what’s left of my right kidney function, I can live with it. The other experience is also tolerable; and in fact is, at times, somewhat entertaining.

Prior to the stent I would always get plenty of warning about when my bladder might need emptying. So much warning that I could often go several hours from first hint to a desperate need to empty. Which gave me plenty of time to plan where I’d eventually go (very useful on a long drive or when stuck in traffic!). But those ‘plenty-of-warning’ days are no more.

Because now, I can be sitting watching TV, on the computer or driving and get no hint at all of anything building up. Then I stand and… whoosh!… it’s like a bucket of water has been suddenly poured into my bladder and there are barely minutes before my trousers are in danger of a soaking. The entertaining bit? Well it’s sometimes frankly ludicrous just how much the signals can be at odds with the results. In some cases a mild urge produces what must surely be a pint or more. Other times an extremely urgent and dangerously full feeling barely yields a whiskey glass worth.

But thankfully, other than in those two ways, the stent in my right ureter is unnoticeable. I hope this continues to be the case when it’s replaced in the coming weeks… unless… unless… dare I dream?… my abdominal nodes have shrunk sufficiently since the last renogram that they no longer encase my urter. Which would mean my kidney would no longer need the help of this artificial drain pipe. My January 9th renogram will have revealed the inner story – and they will tell me when they bring me in for the operation in the coming weeks (apparently the procedure is so light, I could be released that same day or, at worst, kept overnight).

Chemo 6 – sheer exhaustion

November 11th brought the sixth of six sessions of R-CHOP. As usual the day passed quickly – no doubt helped by sleeping through considerable chunks of it. But there were several notable experiences. The first of which was seeing myself in a mirror halfway through.

As usual, by lunch, my bum was sore from sitting for hours and my bladder was dropping some hints. So, seizing the opportunity between drips, I took my usual corridor stroll with my friend, and surprised myself by walking way further than on any previous day. So I found myself using an unknown toilet – a toilet with a mirror. From which a drained, haggard and ghostly white face stared back. A face so different from the one my mirror at home had shown me that morning that I was jolted into almost the same depths of shock as when I’d had “My Auschwitz Moment” some months before.**

But I took a breath, dug deep… very deep… and reminded myself that things were going pretty well. I was now regularly walking 2-4km daily – further than I’d been able to walk for years (yip, this cancer had been tiring me for years). Bloods the day before had revealed a new LDH low of 332 suggesting those abdominal nodes were continuing to shrink. Also, there had been previous chemo days on which I’d been far, far weaker. So weak in fact that I needed a wheelchair to get and from the treatment room. Yet here I was… having just walked yonks further than on any previous break… able to stand freely and stare at myself in a mirror knowing full well I could walk all the way back with barely an effort. So no matter what impression the mirror gave, I was doing okay.

Of course, logic doesn’t always trump feelings. But nonetheless, somewhat reassured, I walked back and feel asleep shortly after the next drip began.

Next thing I knew they were waking me for the final three injections. Three huge syringes, the contents of which had to be injected manually through a cannula – because these are the ones most likely to cause your veins to collapse and so might need to be stopped promptly. Dripping them in, unobserved, is considered too dangerous.

All was going well until… along with the normal chilly cold feeling (one of them came from the fridge)… I sensed a change in my arm. Something different. Something like what I felt just before that anti-biotic shock. The nurse paused and asked very seriously if I wanted her to continue. I said yes but to proceed with caution. She asked again. This was chemo and she needed to be sure I wanted to go on. More nervously now, I still affirmed. That strange sensation continued for a few more seconds… but then faded. So I made it to the end of the injections.

The other incident of note that day was an internal one: the sudden realisation that a whole new emotional vista was opening in front of me. A new, dreadfully unknown, landscape had to be entered. Unlike other landscapes, ones which might open because I had chosen a new career for instance, this was one I couldn’t turn and walk away from. This one was going to be my landscape for the rest of my life. No matter which way I turned. Of course I knew this moment had been coming all along… but still, I wasn’t ready for just how powerfully it would hit me when, while syringing, the nurse said something along the lines of “Great day for you today Sean! The last day of chemo!”.

Of course she thought I’d be happy to see the end of treatment. No more hospital visits. No more chemical-laden injections. But my reaction was “oh fuck, oh holy fuck, I’ve reached the end of chemo… the end of the stuff that has just saved my life… what happens now… what if the cancer comes back… what if the epignetic and anti-angiogenesis stuff stuff doesn’t work for me… what if this is the beginning of my end… ?”

It was a tough few minutes. Far tougher than the toilet mirror. But, nonetheless, I couldn’t help falling asleep after the final injection… and remaining so until 4:30 when they woke me so they could close the ward. I’d somehow slept through the hubbub of six other patients leaving their own chemo chairs and going home. I found this worrying. Because 3pm was my usual departure time… and as that strange sensation in my arm had happened during the red injection (the one known to be toxic to the heart muscle) I worried if I’d pushed things too far when saying “yes, please continue”.

But thankfully I was able to walk to the car… and then (amazingly) walked nearly 1.5km when back in Rosses Point. Then I quickly settled into the same pattern I’d adopted for each of the previous three-week cycles. The fruit, nut and yoghurt breakfast followed by some weights and as long a walk as I could manage. Then some meat and veg for lunch while testing my brain with Countdown before dozing / napping until ready to eat more veg and meat, fish or eggs in the evening. Or pudding rice with Simon’s Buns, almonds and maybe some Carrageen.

Then in week three, as had been happening ever since Chemo 3 onward, the nausea got worse and more frequent. An experience the nurses had quaintly and reassuringly dubbed “delayed nausea”. Seems it happens that some folk get the nausea some time after the chemo chemicals have faded (fading which takes about 5-6 days after treatment). But, helped by walking-to-distract-from-it, that fortnight too passed.

Suddenly it was December… and there were several big, very big, things looming on the horizon.

I needed dental work done. Then there was a CAT Scan ahead that would show the size of whatever remained of abdominal nodes. After that there was a PET Scan to see just how much active cancer still remained (because they can’t kill Follicular Lymphoma with chemo; at best they can knock it back for a while). And, biggest of all, I needed to make a decision about maintenance treatment – scheduled to start January 7th.

So, while glad to be alive to enjoy another one, it was going to be a fateful and busy run up to, and through, Solstice. But thankfully I was finally beginning to feel the energy to engage with it all… 😀


* Epigenetics refers to how lifestyle and life experiences determine to what extent certain genetic potentials are expressed or not. For instance, identical twins with matching genetic profiles in their early years, develop completely different epigenome profiles as they age – and so can have vastly different health experiences as a result. This video gives a good intro to the subject:

** This is not a glib remark. My Auschwitz Moment is the most succinct way I can convey the horror of what I saw one day in a hospital mirror. Prior to and after my first chemo I was so weak that I was collapsing exhausted into bed after every 3m round trip from bed to toilet and back. Yes, a 3m, leaning-on-wall shuffle left me exhausted every time. But gradually, as I grew accustomed to the interweaving patterns of nausea and heartburn, I managed to increase food intake and began to gain strength. Until one day I felt ready for the challenge of planning and executing a shower. While undressing I saw myself in the mirror and was rooted with shock. Finally tears of horror, shock and the most awful fear impulsed me away from the sight of my own emaciation. Which was all the more shocking because, until that moment, my steroid-swollen legs and cancer-bloated abdomen were all I’d seen of my body. So I’d had no hint of just how dreadfully thin I’d become. The fluid retention in particular had been hiding it. But now there was no escaping the sight of my rib cage, the absence of pectoral muscles and horribly bone-thin upper arms… the like of which I’d only ever seen before in those horrific concentration camp photos. Hence my dubbing this My Auschwitz Moment.

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