Thursday, 25 September 2014
Radiation to the Base of the Skull Really Sucks
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 we 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 😉
Friday, 15 August 2014
A Little Bump in the Road
Portland was awesome! I will post pics and talk more about it next post but right now I am posting on my phone and pics are a pain in the butt.
I got the results of my head CT and it turns out the spot found on my skull is a new spot of metastasis. Grrrrr. That means the spots on my spine that seemed a little brighter last time really are brighter and it is not just machine variation. On the plus side, because the contrast dye was used they can confidently say that my brain is currently not affected.
Still, that means a change to my treatment.
I saw my wonderful new oncologist on Wednesday. We both commented how we felt bad for each other. She said she felt bad because I had just had 2 successful years of treatment in Vancouver then as soon as I was officially in someone else's care all hell starts to break loose. I laughed and said that I felt bad for her, my new oncologist thought she was getting a stable unexciting patient, then as soon as she is in charge all hell starts to break loose. :-P
After that we did discuss my new treatment plan. Lucky for me the new plan doesn't involve chemo.
I am continuing on the Herceptin IV every 3 weeks, the Zoladex injection every 4 weeks, and the daily Chlodronate pills. The daily Tamoxifen pill is being stopped and switched to Letrozole which is an aromatase inhibitor.
Yay! The hot flashes will continue........and the insomnia.......and I might get joint pain......and my risk of osteoporosis goes way up. I'm so excited!!!
Basically, what the treatment change does is switch how the cancer is starved of estrogen. The Zoladex stops my ovaries from producing estrogen and chemically puts me into menopause. Other tissues in my body still produce low levels of estrogen.
The Tamoxifen worked by blocking the estrogen receptors so the estrogen had no where to bind. Now, the Letrozole stops the production of the rest of the estrogen so the receptors just hang out with nothing to do.
I wasn't sure about switching to an AI, but a quick scan of some literature told me that it is pretty common for Tamoxifen to start failing after about 2 years. I was on it 17 months. A generally very successful route to go after Tamoxifen failure is AI with ovary suppression so it seems worth trying.
I am starting out with a trial month. The side effects can be really horrible and difficult to tolerate so there is no point in prescribing several months of the drug if I'm going to have to drop it in a few weeks. It has been 5 days and so far so good. Besides, I had my Zoladex injection on Friday and that gives me such brutal hot flashes and a few days of really bad insomnia that I wouldn't notice any other changes right now anyway.
I was scheduled for my routine abdominal CT scan in mid September so it is going to be bumped up to some time in August to make sure there aren't any more new spots or reactivation of the splotch in my liver.
The stupid spot in my skull is also giving me headaches now. In particular I notice it if I have to turn my head to the right very much or when I lie down on my right side. It was probably at it's worst Wednesday, Thursday, Friday. It seems to have improved a little bit today but that might just because I didn't do as much yesterday after having my Herceptin infusion on Friday. Maybe I'm getting a really awesome placebo effect from the new drug as I think it is highly unlikely that it is already causing the new met to shrink and stop causing pain.
Because I am now having symptoms I am going for a radiation consult at the beginning of September......I had to move our moving date around as the consult ended up being scheduled for the same time the movers were going to arrive, of course!
I am hoping that the new drug really does kick in and my headaches go away so they decide radiation isn't needed. Since my brain isn't affected it wouldn't be whole brain radiation but it would probably still hit at least some of my hair and I really don't want to lose ANY of my hair right now.
I think that is all for now. I should have my CT some time in the next couple weeks, we get possession of our new house the end of August, and then radiation consult the beginning of September. All in all things just seem to keep carrying on.
I promise to post about Beerfest soon! Right now I think it is time to try and get a little sleep.
Have an excellent Monday, everyone :-)
Tuesday, 5 August 2014
Waiting
I am on the ferry on my way to Tsawwassen, the first leg of the adventure to Portland. A quick update on my head CT.......I got a phone call Friday morning from the scheduler at my oncologists office. The scheduler could not get me in last week and she didn't want me to wait until I was back to be scanned. The requisition was faxed to the medical imaging department at Saanich Peninsula Hospital so I could go out there as a walk in patient.Yea
Turned out to work well, I only had to wait about 10 minutes before the tech called me in. He was really nice and had apparently been working in the department for about 20 years. The disturbing part was that I had a suspicion that he felt sorry for me. An odd feeling, that.
The head CT is pretty similar to a regular CT except there was a specific head rest used. Also a strap went across my forehead so my head doesn't move and my eyes get covered with a folded Kleenex........I guess in case I open my eyes I don't stare right into the laser beam.
Since I have never had my head scanned before the tech started an IV on me so he could use contrast dye. By using contrast he can also scan my brain which is probably a pretty good idea right now. Unlike my experience last week it only involved 1 poke to get the IV in. Yay! Improvement!
The scan itself was super quick, maybe 5 minutes. The tech said the results should get to my oncologist either the same day or by some time on Tuesday. So far I haven't heard anything.
If I still haven't heard anything by tomorrow afternoon some time I will call my onc. I kinda want to know before I actually leave for Portland so I don't have to dwell on the not knowing the whole time I'm gone.
Once I know anything I will post again. In the mean time I shall enjoy the awesome view ;-)
Wednesday, 30 July 2014
Hmmmm a Head CT
Last Friday turned out to be an adventure. It started off at the inhuman hour of 7:30 when I had to be injected with the radioactive tracer for a bone scan. That took 4 pokes. The nuclear medicine tech diagnosed me with self-preserving veins. My veins look beautiful and feel great but as soon as the needle pokes into my skin the vein disappears. Yay.
The scan itself was uneventful and I'm happy to report that yet again I did not get squashed.
The needle fun continued Friday afternoon with my herceptin treatment. Four more pokes.
I'm going to blame it on dehydration since it has been warm here for a while. It is definitely not an indicator that it is time to get a port. I'm positive of that.
My parents were in Victoria for the weekend so Ian and I had weekend access with the pets. Thank goodness when we get the animals back we will be in a house. I suspect they would both rebel if we tried to move them back into a condo after their summer at Pender.
I can just see Orchid riding Jasper as they try to find the ferry to go back to Pender. Although, I could also see that after they pack their food they both decide to dive into their kibble and gorge themselves so they don't get very far.
On Monday I had recovered sufficiently from my needle trauma and I decided to try making fig newtons. Mmmmmmmm........they turned out fantastic. I'd be really nice and post the recipe for anyone that would like to give them a try but I mashed about 7 recipes together and then made some changes, sorry :-P
And......that brings us to today. I know, I'm skipping Tuesday but that's because Tuesday was totally uninteresting. Ian did make a yummy ling cod curry, but that was the only excitement.
Today I got a call from my oncologist with the results of my bone scan. There was something suspicious that showed up near the base of my skull on the right side. The scan wasn't totally conclusive, but was a flag that more investigation is needed. Sooooo, that means I am on the list for a head CT scan. I assume it is the same as a regular CT it just scans my head. We shall see.
There was also a little more brightness in a couple places on my spine but my oncologist is not totally convinced that means anything. It is always more difficult to compare scans done on different machines so there is always a chance that is part of the issue.
For now I just wait for the CT scan and then we go from there. If there are signs of progression it may mean dropping the tamoxifen and moving on to an aromatase inhibitor which will continue to decrease my estrogen production. Goodie, that means the wonderful hot flashes will continue but at least that isn't more chemo.
As a fun activity, I am heading to Portland in a week and a half with a couple of friends to take in the Portland International Beerfest. I can't wait! It will be a great way to have time pass while waiting to find out what is going on in my skull.
Ok, my hot flashes seem to be in a lull so I can get some sleep. Good night :-)
Sunday, 20 July 2014
2 Years
At the same time I wish I didn't have to celebrate this anniversary. Truly an anniversary that is a double edged sword.
I wonder how long it will take for Jasper to stop barking at the horses.
Thursday, 19 June 2014
I'm a bad blogger part II
C. diff is a bacteria that is normally found in hospitals or retirement homes and can kill people with lowered immune systems. No idea where I got it from but fortunately it was easily treated with antibiotics.
We haven't found our new home yet so my parents have generously opened their condo to us as a home base while we do our search. We want to try out house living and have actual space to do things and not risk pissing off the neighbours with Ian's smoker.
And something did happen, 2 enlarged lymph nodes were noted in my right armpit while everything else remained stable. The nodes were only about 1 cm each but my oncologist thought that it was worth doing further investigation just in case. We had a discussion about possible treatment changes as it is possible that any recurrence will not have the same genetic markers as my original tumour.
I was put in the queue for an ultrasound and biopsy, and I was expecting it to be at the end of June. Instead, I only had to wait about a week.
I managed to remain calm while the tech was doing the initial scanning. She took some pictures and told me that based on what she saw nothing appeared to very abnormal. She left the room with the pictures and a report to consult with the radiologist and I waited about 10 minutes. The tech and the radiologist returned and the radiologist told me that the lymph nodes, while appearing slightly enlarged, did not appear abnormal. There wasn't even a suspicious area for him to target, so........No biopsy!!!
Yay!!!!
I went to Victoria for a few days last week to hang out with my mom, to meet my new oncologist, and to check out a few properties. I had some wonderful weather for the ferry trip
My current oncologist picked my new one for me and she did a fantastic job! I already love my new one.
I scouted out a few properties for Ian and I to go look out once we are actually in Victoria but I didn't do any spontaneous offers on anything.
Now that the move to Victoria is completely official I have started to tick off my list off things that I am doing for the last time as a Vancouverite. I had my last Medina Cafe brunch with Grace a couple of weeks ago,
the week before she participated in the Ride to Conquer Cancer, a 200 km bicycle trip to fund raise for the BC Cancer Foundation, the fundraising arm of the BC Cancer Agency where I received all my treatments.
I had my last lunch with my friend Donna today, and tomorrow is my last volunteer shift at the Canadian Cancer Society, another fantastic organization to support. I have felt such a wonderful sense of family while I have been volunteering there and it will be sad to say goodbye tomorrow. Friday is my last Kadoya day......might have to get a volcano roll, it has been a while.
The move to Victoria is one that I truly make with mixed emotions. I moved to Vancouver in June of 2002 and I have had an amazing 12 years here. I met my wonderful husband and I have gained one of the most spectacular and supportive circle of friends. Without the people I have met in Vancouver I don't know how I would have made it to the point I am at now. So many people tell me how amazing or inspirational or strong I am. I am that way because of the support of the people around me. It is like all the endless condos being built in Vancouver, I can only stand tall if I have a strong foundation.
At the same time Vancouver is where I was diagnosed and Ian and I are both ready to make the next step with the hope that my stable status will continue for a long time. Leaving Vancouver helps us to close the door on all that initial shock and fear and open another door to whatever our future is. I know that I will be back in Vancouver on a regular basis, but visiting is very different from living.
Alright, enough with the heavy stuff. Here are a few more pictures from Belgium:
Baby ducks in Oudenburg
The Saint Niklaas statue in Sint Niklaas
The Antwerp train station
Tuesday, 17 June 2014
I'm a bad blogger part I
1. Jasper was diagnosed with Addison's Disease
2. We spent 3 weeks in Belgium
3. I have had 2 CT scans
4. We are moving to Victoria
5. Our condo has been sold