June 2017 Operation and Stereotactic Radiosurgery

 To my great relief, I was told that I could have radiation after all. A Canadian colleague told my oncologist that a patient could have a 2nd dose of radiation provided that at least two years had passed since the last radiation. 

In the matter of a few months I went from fairly normal to a dizzy, whispering, gasping, vomiting, shadow of myself. I saw a speech therapist to improve my breathing, rein in the coughing and to make the most of my speaking ability. (The speech therapist addresses breathing, swallowing and speech - in that order of importance. I discovered that the coughing was due to not getting enough air in!)

My last MRI (the date brought vastly forward) showed that the tumour had "bloomed" and had impinged on the cerebellum (hence the dizziness and vomiting) and was now quite large, besides crawling onto the tentorium (membrane separating the cerebellum from the cerebral hemispheres). Time to operate.

I was used to the idea now of awake surgery (not that one has any recollection of events. Apparently, the amnesia-inducing medication blocks the laying down of any memories) and had great confidence in my neurosurgeons - the same surgeons who had operated on me in 2010. Even so, the anaesthetist told me afterwards that I had been an unusually excellent patient during the awake surgery, where one is constantly monitored by a nerve monitoring machine. My surgeons had an upgraded machine that was better able to protect the brain stem than that used in 2010. (In 2010, I was fortunate to be the first or so patient in South Africa to be operated on with the help of nerve monitoring to protect my cranial nerves).

After the surgery I could not swallow at all for a few days, and then only specially thickened liquids. I also discovered that I had permanent double vision when looking to the right. Otherwise, my recovery from surgery was faster and better than after the first surgery in 2010. No doubt, this was due to the superior nerve monitoring.

My surgeons managed to preserve all of my cranial nerves. Originally, when deciding to put off surgery, the idea was that the tumour might stop growing - meningiomas often do that - so that the surgeons need not operate, or it was hoped that if the tumour grew slowly, it would strangle my right-side lower cranial nerves equally slowly. A slow decline in nerve function can be adjusted to and is not a sudden shock to the body. In short, the surgeons were hoping for time to allow 80% of nerve function to be gradually lost before the nerves were cut.

In the event, the tumour grew too rapidly for that, and my neurosurgeons found that there was still significant cranial nerve activity - and so they decided to go for good quality of life instead. (They could not entirely eradicate the meningioma thanks to its awkward point of origin in the jugular bulb or foramen). 

So, for a second time, all of my cranial nerves were (unexpectedly) preserved.

However, histology on the excised tissue showed that the meningioma had moved up a grade (also a rare occurrence. 95% of meningiomas remain benign - stage 1). So, as soon as possible (a month after surgery, in practice) I was fitted with a new mask and stereotactic radiotherapy was planned. This time I was given a total of 50 Grey (enough to kill you) in 30 divided doses.

In that 6 weeks of radiotherapy, I felt progressively more and more tired and ill. I mostly rested in bed and still lost weight. Going for treatment felt like a vast chore. Getting dressed and walking down the corridor to the cancer treatment unit once we arrived at the hospital seemed a huge effort. Fortunately, my husband drove the car there and back. I travelled with a basin since I continued to vomit without notice, and carried a closable cup since I salivated continually and profusely (bulbar palsy due to temporary damage to the lower cranial nerves).

During that time though, I managed to write a story and did some Japanese ink paintings (sumi-e) besides reading a number of books and editing friends' stories and one friend's scientific paper. I also had a number of visits from dear friends. I was touched that they had made me things (I always appreciate it when people take thought, time and effort to make things for me) or brought me treats that I could actually eat.

I remember eating with great delight what we called Corn Curls - puffed maize snacks about 1x6 cm. Real junk food. Mostly air, colouring and salty flavouring, but with a very satisfying crunch after so many months of semi-liquid food (at my worst, I could swallow nothing with the slightest texture. Everything was seived to make sure). I ate each corn curl in 4 or 5 tiny bites and let the nibbled snack melt in my mouth before trying to swallow it. But the crunch as I bit into each curl was worth it! I went through bags of them!

When at last I was well enough to go to the cinema, I recall eating pop corn - always a cinema favourite - by means of sucking on a piece of popcorn until the white bit dissolved and spitting out the hard kernel (I carried my spit cup everywhere since I continued to salivate excessively for many months). Where there is a will, there is a way!

Despite the negatives of tiredness, weakness and nausea (I was given steroids and anti-sickness medication to help with the effects of radiation), radiotherapy is truly miraculous - we live in an era where the elemental forces of the universe are used to treat the body, being finely focused so that only one little area is killed and not the entire person. I was very grateful to be offered radiation again - and that my life was preserved once again, thanks to my wonderful neurosurgeons, my oncologist, and their teams.

Back to 2017 Briefly.

 In 2016 I began having symptoms again, after the previous tumour outgrowth seemed to have regressed completely, after radiosurgery follow-ups to brain surgery (see earlier entries). General rejoicing and MRI checkups downgraded to once a year again. 

But then...

July 2016, my right arm felt heavy when I lifted it to the side, and shortly thereafter I couldn't lift my arm to the side at all. Then I noticed that my right sternocleidomastoid muscle (the visible muscle down each side of the neck) had disappeared. I knew enough by now to realise that this - and the lack of arm lifting - meant that the accessory nerve was compromised, which meant that the tumour was growing again and far sooner than we expected.

This was followed in quick succession by partial loss of my voice, together with bouts of coughing and a tightness of the throat. An ENT checkup confirmed that my right vocal cord was paralysed (though, luckily, the gag reflex was intact) and a hastily called for MRI scan confirmed that the meningioma was indeed growing again. My surgeon said we would go back to active biennial MRI scanning, as the tumour was not yet large enough to warrant an operation.

Though I said nothing at the time, I was quite depressed, since I knew from what I'd been told by my oncolgist that radiation was not an option any more - and if the tumour grew at this rate, how may more operations could I reasonably have before the tumour became inoperable? So, this time was very dark.

In rapid succession, I lost my voice, my balance (I became dizzy if I changed direction quickly or tried to go up or down a few stairs), and my ability to eat solids. I also began to vomit suddenly and nearly daily. It was most disheartening to take nearly 15 minutes to eat a soft-boiled egg, only to vomit it up again! I also got muscular spasms on the right side of my tongue (termed fasciculations - it looked as though worms were wriggling inside my tongue and felt like tiny electric shocks). All this besides the by now familiar headaches and stabbing pains in my right ear. I learned that meningiomas tend to grow in different directions each time. Hence the different symptoms this time. I also (as in 2010) lost weight precipitously. In part this was due to poor eating capacity and vomiting, but the weight loss was in part due to cachexia - where the body wastes away. This is common for cancerous growths but it can cause death in itself when the weight loss becomes uncontrollable. So I was doubly worried.