Maybe cancer got me on TV

Recently a few of those who provide – along with some of us who use – the excellent services of the Sligo Cancer Support Centre were filmed for RTE’s Nationwide. We believe the resulting 7-minute slot might feature in tomorrow night’s edition (Monday 24th, RTE 1 TV, 7pm). But if not, then most likely either this coming Wednesday or Friday.

Given the brevity of the piece, I’m not sure not sure for how long, or indeed if at all, any of my contribution might be aired. But, worst case, there is every chance of glimpsing me either doing Art Therapy… or singing with the Something to Sing About Sligo choir (sitting front row, left, with noticeably more hair than in my FB profile pic).*

The show should also be viewable on the RTE Player here for the next few weeks.

So, apart from doing TV appearances, how am I?

Well there’s heaps to tell you about…

  • CAT and PET Scans results either side of Christmas;
  • the difficulty of reaching the decision to decline maintenance treatment;
  • the terror of facing the open landscape of a new, bare life with the words “you will relapse” ringing in my mind;
  • the desire for something like a “12 Step” support programme, or at least a pathway, that I could just slip into or follow that would provide some signposts and landmarks for me as I evolve my own recovery programme;
  • the joy and relief at seeing how good my blood looked in the microscope mid-Jan;
  • amazingly sympathetic, considerate and caring support from my Community Welfare Officer;
  • the stunning shock as I came to appreciate just how deeply my friends and family members have been traumatised too (each now needs to recover in their own way and time… and we now each need mutual care as we pick up the severely stress-tested threads… and begin to weave new ones…);
  • passing blood far more often and for longer than expected – while also adjusting to new sensations in kidney and bladder – after my ureteral stent was replaced March 11th…

… but for now, and assuming all is well with blood tests taken on Friday (nurse says most results in and are ‘perfect’ but more to come next week) and the last 48-hours of blood-free-urine means that particular challenge is behind me, you can take it that I am doing very well. Very well indeed.

So well in fact that I’m beginning to really enjoy and savour what seem to be steadily increasing energy levels. Sure, I still need to nap sometimes in the afternoon or early evening. But overall the energy is trending upwards.

I’m also finding confidence growing inside again… one which leaves me believing that not only do I have a considerable chunk of future ahead of me, but that that remaining future can now, finally, be turned and faced bravely. Not only that but I might even soon have the mental and emotional energy to start populating it with many good things. (This latter inner progress is particularly welcome; because for a few weeks there my future felt and looked like a very lonely, unsatisfying and bleak place. Thank you Art Therapy-!!).

Which is why, despite nearly once-daily bouts of blood in my urine at the time, I was still able to make my way to Doolin for St. Patrick’s Day to enjoy some ocean time with some human friends and Dusty. A massive, massive day for me… the depths and significance of which really only hit me when I got there – and which I will unfold soon in a dedicated post.

Many thanks to Jan Ploeg for this shot of me with Dusty:

Sean Callagy with Dusty In Doolin 2014-03-17
Me with Dusty In Doolin 2014-03-17

* There are of course far easier ways of getting featured on telly. Next time I’ll try one of them..

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…

The power of touch

Just a few hours ago a dolphin let me touch her.

I say ‘let me’ because for the past six or seven dives with her, she has always been – skillfully and deliberately – just beyond arms reach. Even with a stretch and a lunge I never managed to touch her.

But today she decided to do a by-pass close enough to me to let my hand brush along her spine toward her tail. Perhaps six, seven, eight or more times… I can’t be sure.

Because after that first touch there were oodles of fly-by moments, ‘look-I’ve-snuck-up-behind-you-again’ moments plus a lovely, skill full swim 2ft above me as I idled along just above the kelp… all melting now into memories of a dive I will be giving thanks for for many years to come.

I’d be hard pressed to describe the physical sensation. Certainly water temperature… skin tough and strong, yet supple and soft… silky smooth apart from some dips and bumps from cuts and grazes (which were very distinctly felt)… yet with a slight feel of a film or scum of sort too – rather like what one feels from dried carrageen seaweed when it’s been put in hot water for a few minutes…

… but it was the internal sense of the touch that was most satisfying. I’ve been in this dolphin’s presence many times now, watching from the shore and being in the water with her. But with the touch came a new internal sensation, felt somewhere around the heart area. Perhaps an opening of chakras? Perhaps a parasympathetic shift in heart rate due to my brain waves slowing and moving into resonance with hers? Or maybe was the impact of that physical contact experienced more on the emotional level? Because there was something akin to of the heart-glow of love I’ve felt in the past when a friend has risked being present and helped me drop the masks to reveal my broken-ness, vulnerability and other not-too-appreciated aspects of myself.

I’m not sure.

All I am sure of is that…

… even though it was my hand that reached out…

… it was she who touched me.