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.
