Update: 3 March to 3 May 2022
My radiation, for two areas on my spine, started on 3 March. Thanks to Gail for taking me there, for moral support.
The first session was short and simple – the
longest part was them positioning me carefully, to get it exactly right – and
explaining what they were doing, all the time.
Once that was done, I could almost doze off while
they left the room and moved the machine via their computers from the next
room.
I was advised that, if there were going to be side
effects, they would take a few days to arrive.
And I was to put maizena (cornflour) on my skin (who
knew??!! 😄) in the two
squares they'd drawn on my front, and the corresponding areas on my back.
The radiation sessions themselves continued to be
fairly easy, overall, with a couple of challenges along the way. At first I
wondered what all the fuss was about, but I soon found out: after one of the
sessions, I experienced nausea for 4 or 5 hours and reflux in the middle of the
night (both of which I'd been warned about). That was the worst, though, and
the rest of the time I had a bit of nausea and general digestive discomfort. I
also sometimes had slight twinges in my back from the position I had to lie in.
A wonderful thing was that there was absolutely no
skin irritation for me. I faithfully put maizena on all the areas, after every
shower (and speculated that perhaps it contained fairy dust!).
The tiredness also started to set in, early on, but
I managed to do my work each week (Monday mornings, Wednesdays whole day,
Thursday evenings) – sitting quietly at the computer, with breaks to move
around (I did consider taking time off, but decided I would prefer the
purposefulness and structure). We also had to prepare the house for viewings
(our landlord decided to sell it), and the rest of the time I mostly lay
around. Not my usual, at all! I mostly managed to go to circle dancing on
Saturday afternoons. That's what I love about circle dancing – the variety of
dance tempos, and also no pressure to do every dance.
It was a bit frustrating that the weather in CT was
exquisite during the radiation (I wasn’t allowed to swim or get too much sun).
The
radiation machine itself was quite amazing. I sent a photo to my family,
explaining that it rotates right round the bed, even sending rays up through
the bed. My nephew, Tevya, sent this response:
If the
ray machine circle dancing around the bed gives you grief, remind him that your
rays of goodness are more than strong enough to blast him into nuts and bolts,
and that you’ve been circle dancing since before he was a circuit board in an
MIT student’s eye. ☀👯♀️
The rib
that alerted everyone to these issues started to behave really well (no pain),
but if this ever changes then maybe there will be some radiation for it, at
some stage.
I agreed
to start another thing that I thought I'd never do – hormone therapy in the
form of Letrozole tablets – a week after the end of the radiation. He warned me
of a possible second menopause! (Maybe; maybe not; it affects everyone
differently. And if I were to find Letrozole unbearable, there would be a
couple of others to try.) This is intended to assist with balancing the quality
and quantity of my life, for however long this is possible. It is a systemic
treatment, and is intended to help with the lung nodules as well.
My big
learning continues to be that, even if I did nothing at all about any of this,
I would have a few years to go – but they would be increasingly difficult
years. This way, we try to maximise the quality of the coming years, and
possibly add a couple of years in the process.
18 April 2022
It's now almost four weeks since the radiation
treatments ended, and the effects took quite a long time to wear off –
especially the nausea and fatigue.
I started trying the Letrozole tablets (hormone
treatment) a week after the radiation ended, as advised. All I can say about
that is: a great big EISH!!!! It was terrible. Perhaps a bit too soon, as well –
the side-effects started overlapping with the after-effects of the radiation.
Over the five days I tried it, everything got progressively worse, especially
an increasing depression. After those five days I gave up, and decided first to
let the radiation effects wear off completely. The depression started lifting,
and life felt worth living after all. So I'm just regrouping, and holding off
on the decision about whether to try again – maybe the next step is to try one
of the other ones.
My next CT scan is in 11 days' time (judging by how
I feel now, I think it will show some good results), followed by a consultation
with Garth, where we'll also include a discussion about the hormone treatment.
I continue to use Iscador (and am happy to have
found a source of it for 40% of what I've been paying – a huge saving per
year). I was advised to hold off on the Vitamin C infusions until well after
the end of the radiation, and I'll restart them now – Gail and I have both
managed to catch a viral infection, and it will help me with that, too. (We
don't think it's Covid, but hers has been quite nasty while mine has just
started and has been light thus far.)
By the time I would have been ready to swim again,
the sea was far too cold: better luck next summer! And Gail and I are so sorry
about what has been happening in other parts of the country, with the
torrential rain and flooding. It's just awful. La Niňa, it's time to ease off
now!
Sending healing and strength to everyone who is dealing with their own issues at the moment, and much love and appreciation for all the support.
3 May 2022
My post-radiation CT scan was on 29 April
(and my biggest achievement was holding still and not coughing, after that
viral infection had turned into a hefty case of bronchitis for both Gail and
me, and mine has only subsided since the weekend).
And then today, 3 May, was the
consultation with Garth, to look at the scan results and decide on my next
steps.
We were both pleasantly surprised by the
results! Here they are:
·
There
is absolutely nothing new, and absolutely no spread or growth of anything that
was already present.
·
My
bones show a good response to the radiation, in that there is the type of
sclerosis that indicates that healing IS happening. (Coupled with this: I don't
have any bone pain at the moment, which also means there's no need to do anything
for that rib at this stage.)
·
One
of the two biggest nodules in my lungs is unchanged, while the other has
decreased in size by 20%, and the two other measurable ones have each decreased
by 10%.
Garth isn't sure what the latter can be
attributed to. It could be the five horrid days of Letrozole (and my experience
of feeling so horrid could have been caused by some dramatic activity in
there!). Or it could be Iscador. One thing I'm certain of, and I thank all of
you for this from the bottom of my heart: your love and support is definitely
helping me in a big way.
We're now going to try the hormone
treatment called Exemestane. (When I asked Garth if it would be stupid of me to
just continue, for now, without hormone treatment, he said: "Yes. It
would." So I decided I'd prefer not to be stupid.) I also continue with
Iscador, and with boosting my immunity in general. I'll see Garth again in six
weeks' time, and will have the next scan at the end of July.
The Dance of Life continues: see you there!
