Radiation to the Base of the Skull Really Sucks

In fact, I think it may have caused the worst side effects I have dealt with during this entire cancer adventure.

The last couple weeks have been a bit of a write off so I can’t remember quite where I left off.  I know I posted about my head CT scan results being positive for skull mets but negative for anything in the brain.
Since then I have been dealing with headaches that were not too bad but often were accompanied by nausea. Generally unpleasant. And the pain was so nonspecific. It was inside the skull so I never could really pinpoint where it was coming from, just that the right side of my head ached.
And any sudden head movement or jarring cause instant, nauseating pain. All in all super fun.

On the Saturday of Labour Day weekend we gained possession of our house in Central Saanich. So awesome!!!
The view from the front of the house…..

The view of the backyard from the deck…….

The deck…….

We even have outbuildings!!

……..we just don’t have much to put in them yet. 😝

Because the thingamabob (did you know that is actually recognised as a word by my spell check ?!?) in my skull was causing me pain I was being referred for radiation. On the Wednesday after Labour Day I went for my consultation. Turned out to be a really good appointment…….
I really liked my new radiation oncologist for starters. It is always great when you like a new doc. She was only recommending ONE treatment rather than the five that is often suggested for bone mets since the location was not close to anything important like the spinal cord or major nerves. Apparently the brain isn’t very important, who knew?? Since it is only one treatment there is much less risk of my hair falling out in the area the radiation would hit! Good news since I am not prepared to lose my hair right now, I am still loving my extensions.
Other potential side effects include headaches and nausea. Since I’m already dealing with those the radiation didn’t sound like a big deal. Usually people get prescribed dexamethasone for head or brain radiation to help control any swelling and for nausea. I absolutely hate the stuff…….turns me into a raving carbohydrate junkie…….so my rad. onc and I agreed to only do something if the side effects were a problem.

Conveniently there was a cancellation in the radiation planning department so immediately after my consult I went directly to planning.  The planning session involves getting a plastic mesh molded to my face……..

and a CT scan.
They do cut out the eyes and mouth before you come in for the radiation appointment so it isn’t quite as claustrophobic.  Although they do actually snap the mask to the bed I have to lie on so my head is totally immobilised. For some reason it made me think of the Saw movies. I’m glad it wasn’t closer to Halloween.
The planning scan only took a couple minutes all together so I was actually in and out of the Cancer Agency in less than hour. Not bad at all!

On Friday morning I received a phone call from the Cancer Agency booking office, my radiation was scheduled for Monday morning at 10 a.m. Wow! Really wasn’t expecting it to happen so fast. Friday afternoon I had my Herceptin treatment and more great news……only 1 poke was needed!!!

Monday morning it was back to the Cancer Agency for my radiation. During the prep talk by then radiation tech she mentioned that she was a little surprised I didn’t have a dexamethasone prescription but she totally understood why I was being resistant.
The treatment was quick and easy. Two zaps to the skull, one from the left side and one from the right side, and I was all done. In and out in less than an hour again!

I was planning to go to Costco after but I had forgotten my list and my cash so I headed for home instead. Boy, oh boy, was that ever fortunate.  Within a couple hours my head was hurting way more than it had ever hurt before and the nausea was horrendous. I took myself to bed but lying down did not help.
I phoned Ian and asked him to come home and to pick up some Tylenol on the way.  I couldn’t find the Tylenol amongst all of our stuff so it is possible we didn’t even have any.
Next I phoned the radiation nurse line to report my symptoms. Of course, I had to leave a message and wait to be called back. The wait seemed to be forever but I’m sure it wasn’t actually that long. The nurse okayed me taking some gravol and she said to take whatever the maximum dose was suggested on the package.

I took my gravol and went back to bed to wait for Ian and the Tylenol to get home. That was not the most pleasant wait, the gravol did not seem to be doing much.  As soon as Ian arrived I took 2 Tylenol and continued to feel like crap. Then my fingers started to go numb. I wasn’t sure if it was due to the gravol finally kicking in but it was a side effect I was supposed to report immediately so I phoned and left another message on the nurse line.

The call back was much quicker this time. The nurse said she had seen my rad. onc. recently so the nurse said she would go talk to my rad onc and request a dexamethasone prescription be faxed immediately to the closest pharmacy. The nurse said it would be at the pharmacy in a maximum of 10 minutes so Ian could leave immediately to pick it up.
Ian was home within half an hour with instructions for me to take one pill immediately and one in the morning. If I felt the need to take any more I was to phone the nurse line again. So…..I took a pill and I swear within 5 minutes I was feeling better and within 10 minutes I had passed out.

Since it was one of those totally drugged sleeps when I woke up I had no idea where I was or what time it was. Turns out it was 8 pm so I had slept for over 3 hours. Guess my fatigue was pretty bad since dexamethasone is supposed to make people hyper. I think I ate something then and then I passed out again, but I really don’t remember now.

Tuesday morning I was still feeling pretty awful so more steroid down the hatch. I don’t remember much but I’m pretty sure I did nothing all day. I still didn’t feel great in the evening so I took yet another pill…..oops, didn’t phone the nurse, but I figure all they would have told me was to take another pill.

Wednesday I was still not too functional but I had to get to the Cancer Agency to see my medical oncologist. I downed one more dexamethasone and then I went to wait for the bus. No way I was driving in the state I was in. Shoulder checking was out of the question and the general feeling of utter crappiness was not conducive to being safe on the highway. Fortunately there is a bus stop just down the street so it wasn’t a big deal.

I saw my onc. and she said my side effects weren’t a big surprise. If, however, they had not improved by the following week I was to notify her and my rad. onc. We also discussed my next scan date…….near the end of November, far enough away to give the new drug, Letrozole, a chance to actually do something.
I had to stop in at the Cancer Agency pharmacy to pick up more pills. Very annoying, the pharmacy actually closes for an hour for lunch every day. Seriously?? Could you imagine if the lab in a hospital closed for an hour? Some ER doc would have a total conniption. Any hoo, that meant that after my onc. appointment I had about 40 minutes to kill before I could pick up my pills……..just enough time for a London fog (it made me think of Beyond…….I will try and make it to Vancouver soon for sushi and another London fog) and a honeybun. Time well wasted 😁

Once the pharmacy was open again I learned they had not received the updated prescription from my oncologist that would let me take home 3 boxes of pills, so I took the 1 box I could get and scaddled. Enough time wasted for the day. Then it was back on the bus and home again. Good to know the bus trip isn’t too bad to the cancer agency, I don’t know the next time I will have to do that.

Since then the nausea and headaches have been improving and the fatigue is very slowly improving. It is now 2 1/2 weeks post radiation and the nausea is totally gone and the carbohydrate cravings are slowly decreasing. I still have the occasional flash of pain but nothing like I was getting and it continues to get better. Now I just need the fatigue to go away. One activity a day still wears me out.
I did eventually make it to Costco though, and spent gobs of money. Even more important I made my first visit to Lee Valley…….so excited, I’m now on their mailing list so I should get their catalogues in the mail. Can’t wait for my first one!!

I had another visit to my medical oncologist today and since it appears things are stabilising I am back to appointments every 9 weeks instead of every 3 weeks. I had my blood work done, no tumour marker results yet but apparently everything else is looking fantastic…….I decided to take a break from being a lab tech and didn’t ask for any specific values. Usually I always want to know my platelets and haemoglobin. Must be a sign that the fatigue has totally gone away yet.

So for now I am taking things slowly as I deal with the fatigue but I am loving getting outside everyday to play in my garden. And pretty soon we will be allowed to have fires in our backyard fire pit……….mmmmmmmmm……….toasted marshmallows……..

Now it is late, time for bed. Have an awesome Friday everyone!!!! And at 2:30 I have my herceptin so cross your fingers it is only one poke again 😉

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