Last time, Lynn started on chemo. This week, she tells us about having her brain tumour zapped with photon therapy. Click here to read her previous email
Well, last week was a super-eventful week that saw me finishing my chest radiation and starting, and finishing, my head radiation – how cool is that? So, with a bit of luck T2 and the ugly sisters are HIS-TORY!
It all started the Friday before last when I went to the CSI unit at the old Southern Cross Hospital in Wynberg to have a new kind of mask made for the “stereotactic radiosurgery” – or "head thing", as we call it. (Don’t you hate it when people say “you know where the old so-and-so is…?” and, not having grown up in that place, it seems ludicrous referring to a landmark that is no longer there? In this case, though, the hospital is still there… it’s just mostly deserted and has been for about three years. However, there is a fabulous radiotherapy unit that still operates from the almost-deserted building and, although it’s really weird walking into this enormous almost-empty hospital building, there iis a wonderful bunch of people working there.)
The mask I had to have was made out of a plastic mesh type stuff (cool for modeling toys, Andre thought… but maybe a little pricey!)
They heat it up to 70 degrees, which sounds hot to me, but it just felt like a really nice warm face cloth going on – which they place over your face in strips, and it hardens as it cools.
One radiologist, Quinton, told me to shout if it was too hot when he put the first strip on. Of course I couldn’t resist giving a little yelp just for the hell of it and I thought that Quinton was going to jump out of his skin! He whipped that strip off in an instant. It took me a while to reassure him I was only joking – poor man!
Anyway, they made a front and back section and they also put a piece in my mouth which I had to mould around my palate which is a stabilising/”anchor” point for the mask. All in all, I think it took about 20 minutes at the most.
That afternoon we went to have another MRI to check that no other tumours have sprung up, as it’s been over two months since we started this journey (there aren’t).
Then I put the mask on and they did another CT scan to do that thing where they match the outside to the inside.
You’d think I would have learned my IV lesson from the last time I had my MRI with contrast… but NOOOOOOO! I think I just have very bad luck with IV’s, not helped by the fact that my veins are pretty pathetic at the best of times and now my puffiness has made them even harder to find!
Seeing as I had to give blood for Doc Wilson to check my immune system levels and stuff, I thought “bonus, couldn’t they just prick me once and get it over with?” But no such luck.
The pathologists (who, unsurprisingly, are very good at taking blood) didn’t have the type of needle we needed to slot into an IV so I still had to have an IV for the MRI contrast - and do you think they could easily find the vein in my hand? EINA! And could the pathologists use the IV to draw the blood they needed? No.
I didn’t realise that there’s a special way of holding your hand so that it doesn’t hurt which I think I only discovered about 30 minutes later, but then it was cool! At least now I know for next time, which is a good thing because I had to leave the needle in for the CT scan too. They put some other stuff in that makes you feel warm all over… a different type of contrast, I think. And I was so not going to let them take the first one out and put another one in!
On Monday we went back to CSI and Prof V explained the photon therapy to us and how, using “pencil beams”, they were going to radiate T2, coming in from different angles around my head to make sure they got the whole thing covered.
Now, am I the only one that thinks pencil beams are like… the size of a pencil? Well apparently not... or maybe it’s because of the size of the tumour?
Anyway, he showed me his plot and plan thingy and my treatment included eight beams about 2,5cm in diameter that are going to cover the tumour area.
The prof explained that the trick with this procedure in the brain is to give enough radiation to kill off the tumour, but not so much that it affects the surrounding brain tissue in such a way that you have oedema (fluid on the whatever… in this case my brain) later… which you have to take cortisone to control… eek! Look at what cortisone has already done to me.
First radiation session
So, after weeks of nothing happening on the head front, on Monday afternoon I had my first radiation session. Quinton and Di from CSI bolted my head to the table and I screamed in pain. Only kidding! They bolted my mask to the table and I lay down, closed my eyes and relaxed. They slipped the “bite plate” part into my mouth to get it in position, I tucked my ample cheeks in, and they clipped the front section closed (see pics).
With my head secure and still, they popped this box over the mask that had a map of the radiation points on it. They lined up the laser points and the machine whirled around for less than a minute, and then they move on to the next one. All in all, it took about half an hour with all the setting up and checking etc.
The prof warned me that I may be at even higher risk of a seizure, so he gave me more anti-epileptic meds and by the time we got home after stopping at the pharmacy, I must admit to having a massive headache. But hey… compared to surgery, ICU, beeping and the risks associated with surgery, I think I can live with a monster headache.
Anyway, I only had to go for three head treatments and by the second day I only had a little headache and the third day hardly anything at all.
Leopard print back in fashion
So apparently I’m going to lose my hair at these eight spots which is why I’m hoping leopard print is coming back into fashion!
Now both T2 and the three ugly sisters have hopefully been nuked into oblivion, but we’ll only be scanning to see how they are in about three months time.
In the meantime I’m starting my second round of chemo on Sunday and I hope it’s as uneventful as the first round was.
I’m still feeling rather pooped, but don’t know if it’s a side effect of the radiation (which I was told would last into this week too), the chemo, the cortisone or a combination of all of the above.
I was a little bummed that the Prof told me that I was only going to be able to cut down on the cortisone in about three months' time. I was hoping we could start cutting down immediately as the cortisone side-effects are causing me the most discomfort (my big, taut, but wrinkle-free face, pregnant-like tummy, lurvly hump on the back of my neck and puffed up waddle, combined with no leg or stomach muscles to speak of which makes moving around quite difficult), but we’ll just have to live with it all for a while longer. Really not such a bad thing in the grander scheme of things!
Speaking of which, my sister, who is a year younger than me, lives in Dubai and has a gorgeous seven-month-old daughter, Lauren (or Lolly to me), has also just been diagnosed with breast cancer (can you believe it?)
She was due to come out and visit on the 15th of last month and before she left she went to her doctor to sort out her “leaky boob” that she’d had since she was pregnant. They did some tests (ultrasound, mammogram and later biopsy) and discovered some malignant cells.
It’s officially called ductal carcinoma in situ which is sometimes referred to as “pre-cancer” as the malignant cells haven’t broken through the ductal walls into the breast tissue yet, but it’s still malignant. The good news is that she has caught it really, really early and she’s already had her first of three rounds of chemo.
Her oncologist has put her on a hectic chemo cocktail to nail the buggers so that she can hopefully avoid a mastectomy. She may still need a lumpectomy to remove the mass, but the chemo might just do the trick. The chemo she is on means she will most probably lose her hair.
A radical haircut
My sis is quite conservative and her idea of a radical haircut is to take 2cm off her long straight blonde hair rather than her usual 1cm, but she took the plunge last week and went short, spunky and platinum! And it looks so cool!.
Of course, this news sent us reeling (the breast cancer, not the short platinum hair cut... as shocking as that is to us), particularly my poor mother, who feels completely torn between her two daughters who live in different corners of the world.
But my sister is incredibly brave and is taking it all in her stride, and is in fact leaving Dubai tomorrow for a brief visit to Cape Town in the midst of her treatment. I can’t wait to see her.
So, please will you remember her in your prayers too and pray that God zaps these buggers too. And, of course, my mom and dad who are coping with the news that both their kids have cancer. And it’s just so bizarre because we have only one distant relative that has had cancer.
The other side
I must admit that with my sister’s news I got to experience the “other side” and realised that it’s actually so much easier to deal with your own sickness than to deal with someone else’s – particularly someone you love. So, an extra big and special thank you to all of you who have been on this journey with me and for your love, support and prayers (and please keep those up by the way).
I have a better idea how difficult at times it must be for you all compared to me.
Andre and the girls are also doing great, buoyed up by your love and support – and, for Andre, his regular rides on the mountain and in the forest! Thank goodness I now have a really good excuse not to go!
Lots of love
(Lynn Ferreira, 25 February, 2008)
Click here for the next entry.
My cancer diary - part 1
My cancer diary - part 2
My cancer diary - part 3
My cancer diary - part 4
My cancer diary - part 5
My cancer diary - part 6
My cancer diary - part 7
My cancer diary - part 8
My cancer diary - part 9
My cancer diary - part 10
My cancer diary - part 11
My cancer diary - part 12
My cancer diary - part 13
My cancer diary - part 14
My cancer diary - part 15