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.

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…