Christmas Fun 2015

Last year for Christmas I spent a lot of time running around to medical appointments and getting biopsies done. This year has been a little different.

Two days after my fantastic birthday party I had my second cycle of chemo. Now that I know to stay on my low dose steroid, the primary side effect was joint pain and it was easy to control with Tylenol.
On Monday of  the second week of December I was in for abdominal and head CT scans to see if the first couple rounds of chemo were having any effect. A
Tuesday was chemo cycle #3. Things were going well and the following weekend I popped to Vancouver to deliver a few gifts and meet the latest baby born amongst my circle of friends......such a cutie.
I started getting a scratchy throat but didn't think much of it as I had gotten a scratchy throat for both of the first 2 rounds as well.  I had to return to Victoria on Wednesday evening for an appointment with my oncologist Thursday morning.
On Thursday morning just before Ian left for work he told me that I felt rather warm. I didn't feel 100% but I didn't feel too bad. Just before I left for my appointment I took my temperature.......uh oh.....38.5 C. I can't remember what temperature I was supposed to start panicking at but I figured I would  notified the nurse when I arrived at the Cancer Agency.
As I was checking in for my appointment I saw my onc and told her I had a fever. She immediately called a nurse over to put me in a room and check my vitals. My heart rate was 145 and my temp was 38.2 C. I was put in another room with a more comfy lounging chair and I waited for my onc.
When my onc came in she told me that I would be moved over to the clinic nearby and I would get my bloodwork done and I would be given some IV fluids. They would monitor my temp and I may get admitted. Ugh. We also went over my CT results. The lesion on my skull is showing signs of shrinking as is the spot on my lung..... I guess that means it isn't radiation scarring. And the met on my rib continues to show signs of healing. Maybe it will go away completely some day. All in all it appears that the chemo is doing its thing.
After my appointment I was moved to a bed in the clinic area. My temp was checked again and it was up to 39.2 C. Next was bloodwork including bloood cultures then I was sent to radiology for a chest x-ray to check for pneumonia. Once back in my bed an IV was put in and saline was pumped into me.
After a while a clinic doc came in and told me that I was going to be admitted and I would get some IV antibiotics. Hopefully I would get to go home in 2 days. Ugh again. Ian came from work to see me around then and I sent him home to check on the pets.
Eventually I was moved to the oncology ward at the Royal Jubilee. The Cancer Agency sits on the grounds of the Jub and there is a convenient tunnel connecting the facilities making movement of patients pretty easy. I had been very unenthusiastic about getting admitted but I ended up in a private room since I was on reverse isolation.......that means everyone has to mask and glove up to protect me instead of masking and gloving to protect themselves from what ever nastiness I have......and I even had free TV for a couple days. The previous patient had been planning to be in hospital longer and had  payed in advance for the TV. A nice little Christmas present.
Once I was comfy in my room the IV antibiotics were run and then it was more saline. In the evening I was told that so far my blood cultures were negative so they were going to switch me to oral antibiotics. No surprise about the negative results so far as I felt like I had a cold not something bacterial.
Friday was pretty dull and involved a lot of switching between all the major news channels. Regular daytime TV is so boring. The big excitement was the 5 times a nurse came in to give me pills. I was on 2 different antibiotics, 1 twice a day and the other 3 times a day so they were all at different times. And there were the meals.....the food was actually not too bad but I wasn't overly hungry. I was also paranoid that if I didn't eat enough they would keep me in hospital longer. Such struggles.
On Saturday I was told that if my blood culture results came back negative I could go home if I wanted. If I preferred it, I could also stay until Monday. Hmmmm......I think I will pick the going home option. Eventually we heard my cultures were negative so my discharge orders were written and I was given prescriptions for my antibiotics.
After 3 unexpected days away it was so nice to be home again. I never did get all my Christmas decorating done but there were some lights and the tree was up. Good enough.
Ian was off the week before Christmas and then his mum, sister, and brother-in-law came to visit for Christmas Eve and Christmas Day. We had the full turkey dinner Christmas day with my parents also in attendance. It was a nice little holiday.
I was supposed to have chemo #4 on December 28th but due to my little hospital visit it has been pushed a week to January. Also, because of my low neutrophil count I am going to get Neupogen shots after each of my cycles. Neupogen stimulates the bone marrow to produce more neutrophils so the risk of infection is decreased. I have heard that bone pain is the most common side effect. Joy. That will go well with the joint pain.
Next up is a quick trip to Winnipeg for a wedding. I sure hope the mild winter weather continues. And I think my New Year's resolution will be to not get admitted to hospital after that trip.

Happy New Year, everyone!

Docetaxol and turning 40

Chemo day was Monday October 19th, also election day in Canada (I am happy to say my riding, Saanich-Gulf Islands, had the highest turn out of the entire country as we re-elected Elizabeth May of the Green Party). Ian and I had planned ahead by participating in early voting.  We were lucky and only had to wait about 15 minutes to get our ballots.
Back to the 19th.....I had asked my oncologist the previous week about approximately how long my infusions would take so Ian would know when to pick me up. I've spent enough time on the chemo ward I'm just as happy being there by myself so I can spend more time chatting with the nurses and other patients instead of always bringing someone with me. My oncologist said it would take about half a day so I arranged for Ian to meet me at 3.
My arm was getting warmed in preparation for the IV insertion when my nurse asked me if I had my appointment for the next day. What??????????
Turns out that the first cycle of my new drug protocol is supposed to be done over 2 days but no one told me. Great, the first day is supposed to be the Pertuzumab and the second day is the Docetaxol and Herceptin. That means all my premedication has been messed up as I need 3 doses of dexamethasone and 1 dose of another antinauseant before the Docetaxol. Grrrrrrrrrrrr
My nurse was a little upset that no one, and I had talked to 3 people: my onc, a chemo nurse, and the chemo scheduler,  prior to starting my premeds and none of them had told me treatment was over 2 days.  My nurse then talked to my onc, who was upset that she had forgotten about the 2 day protocol, and pharmacy and got them to agree that I could have all 3 drugs the first day. Such a relief.
My IV was finally put in, only an hour late, and the Pertuzumab started running. It was a little odd being on the chemo unit on a Monday as that seems to be a popular day for new patients to start their first round of chemo. I heard several patients getting walked through their antinauseant drug regimens and all the questions that come up. It took me back to that day a little over 3 years ago when Ian and I made our first trip to the chemo unit and how nerve racking that is with all the unknowns of how chemo will feel and how successful it will be.
The Pertuzumab ran for an hour then I had to wait for an hour of observation to make sure I didn't have an allergic reaction. It was a dull 1 hour and then the Docetaxol was started followed by another short observation time. Lucky again, no reaction. Then it was Herceptin time. Since I have been on Herceptin for so long with no problems my nurse let the Herceptin run for my usual half hour rather than the 1 hour the new patients get.
I really am thankful that I have not reacted to any of my drugs so far.  There was a patient across the way from me that had a very bad reaction to one of his drugs this time. Turns out the drug was almost finished running when he started to react. I could see him shaking and he was across from me and down a couple of patients. He definitely kept everyone one their toes for a while. Fortunately the nurses and doc were able to get everything under control and by the time I left he was talking and relaxed and the drugs were running again.
As I didn't know how I would feel after treatment, Ian met me on the chemo unit and drove me home. I actually didn't feel too bad after so in the future I should be okay on my own. So nice.
That night I was pretty jittery from the steroid but the Docetaxol started to kick in and I was relatively low energy on Tuesday. Wednesday the joint pain started but it was so mild I didn't need any Tylenol. Thursday morning I had my Pamidronate infusion and Thursday afternoon I had to go for a cardiac echo.
I need an echo as my new baseline for starting Pertuzumab. Like Herceptin Pertuzumab is a targeted therapy against Her-2 and because the heart also has Her-2 there is small possibility of heart damage. My baseline echo will be used to monitor any level of heart damage if I begin to feel any symptoms of damage.
On Friday things started to go downhill. I had terrible joint pain that was dramatically worse than any I had while I was on Paclitaxol before. I'm not sure if the pain was just due to the Docetaxol or it was the combination of Docetaxol and Pamidronate. Whatever the cause it sucked. Fortunately 1 extra strength Tylenol gave me almost 5 hours of relief. I didn't do much on the weekend other than wait for the pain to just go away. By Monday the pain had improved and I was dealing with low level nausea which made me not want to eat. And since I wasn't eating I was feeling nauseous. Such a lovely cycle.
This went on for a week and a half. I had zero energy and pretty much just sat on the couch watching time pass. Not the most exciting time. And then I started to get a headache........ohhhhhhhhh. A giant lightbulb lit up over my head........this nausea is not from the chemo it is from the lesion on my skull, I just needed the headache as the clue.
So, back on the low dose of the dexamethasone steroid I had been on to help control the lesion symptoms. Holy flip of a switch Batman, literally within a couple hours the nausea was going away. It was gone by the next day. Lesson learned. Stay on the low dose steroid.
Life went back to sort of normal. My energy was still lower than pre chemo but I at least felt human again. And I still have all the Bell's symptoms of bad balance, being deaf,  buzzing in my ear,and dysfunctional taste buds but at least I don't feel sick all the time. Gotta take what you can get.
The next few days passed uneventfully, except for shaving my head. I wanted to bake some zucchini bread and my hair was started to come out in small clumps so to prevent any nasty surprises in my bread I took Ian's electric shaver to my head. I did an okay job but Ian had to tidy me up a bit.

And then it was time for my birthday!!!!! I made it to 40.
Ian was off and we had a pretty mellow day. We had lobster for dinner.....my favourite! And Rice Krispie squares for dessert, seemed like a creative combination. I didn't want to go too overboard to conserve my energy for the weekend, our trip to Vancouver, and my birthday party.
On Saturday morning Ian and I packed up the pets and with a stop at Saanich Peninsula Hospital so I could get my bloodwork done, we headed to the ferry. We stayed at the Granville Island Hotel. I have eaten in both the brewpub (yummy pink hibiscus beer in the summer) and the restaurant in the past but I had never been in the hotel part before. It was a great place to stay, pet friendly, close to the party location, and it is only a short bus ride over Granville Bridge to the Fluevog store. I had time after check-in to pick up some birthday shoes.......

Thanks, Laura, for the photo!

Birthday shoes purchased it was time to get ready to do a little partying. It wasn't too difficult, mostly it was deciding which tuque to wear so my bald head didn't freeze. The party was being held at the Wicklow Pub which used to be Ian's and my local pub while we lived in Vancouver. We had lots of good times there so it was fun to go back.

I had a fantastic night!!!! Thank you to everyone who came out to celebrate with me. You have all been such a great support for both Ian and I as we have muddled our way through the world of cancer. A special shoutout to Lee, Lois, and Julie that came from Winnipeg and Jen who came in from Yellowknife. And thank you to Tess, the SPH baker extraordinare, for supplying the cupcakes.......mmmmmmm.........cupcake sandwiches......

Turning 40 became my long-term goal after getting my diagnosis and I had always planned a big party to celebrate getting there. Now I am thinking about what my next goal, and excuse for the next big party, should be. I have a couple of ideas so I will keep you posted.

Sunday it was time to return home to Victoria as Monday morning was round 2 of chemo. This post is long enough so I will leave those gory details for another post.

Knockin' on chemo's door

My oncologist was on vacation for a few weeks so for my regular 9 week appointment I saw a stand-in.  He had a unique bedside manner for a physician as he was not very good at eye contact. But he was very thorough.
I was phoned the day before my appointment and told that my appointment was being bumped a half-hour later. The reason for the delay was that the stand-in oncologist was presenting my case to the tumour group.
The initial decision by the group was that it was time for a change in my treatment. The reason behind the decision was my PET scan results from August.
My results were actually quite encouraging.....other than the lesion at the base of my skull. There were a few little spots on my right lung and in my right axilla that are likely scar tissue from the radiation I had in April. The spot on my 5th rib where I also had radiation was showing signs of healing. The original metastases I had at initial diagnosis are also not really showing on the PET. The most interesting thing was the specific mention of my liver, and to quote "liver looks normal". !!!!!!!
That means that the combination of Herceptin and anti-estrogen treatment has done a great job of getting the original ER+ metastases under control.
The next decision was that radiation is no longer an available option for the lesion at the base of my skull as I have received the maximum amount of radiation I can get to that area. That lead to the decision that it was now time to move back to chemotherapy.
The skull lesion has been growing even with regular Herceptin and there is concern that without a treatment change the lesion could get out of control and spread elsewhere.
I have actually been thinking about chemo for a few weeks so when the oncologist brought it up I was not surprised. It has been over a month and a half since I had the radiation and while the motion in my face is better there really has not been great improvement in the other symptoms. I am at the point where I am willing to change treatment in the hopes that the symptoms improve.
Once we had agreed on chemo the next step was deciding which chemo as there are currently two main options. The first option, and the one recommended by the group, is the more aggressive option. Hmmmm.....that will probably be my choice then as I have always gone for the most aggressive option first. This option is also the current first line of treatment for newly diagnosed stage IV patients. It was not available when I was first diagnosed and the group felt that just because I had bad timing (my words not theirs) I shouldn't miss out on the opportunity to receive this treatment. As I had already received some treatment it was necessary for my oncologist to request permission for me to now get this treatment, but.....the first person to suggest I get the treatment is actually the doctor that gives initial approval so I suspect the request would get approved pretty quickly.
The second option is less aggressive and more easily tolerated. But, if I went with the second option I would also be shutting the door on a few treatment options down the road. The second option is something called TDM-1 that was approved for use not long after I was originally diagnosed. It is a Herceptin molecule attached to a chemo molecule so when the Herceptin attaches to the Her-2 the chemo can more directly attack the cancer cells. By choosing this treatment though I would officially be going off Herceptin even though it is a part of the new drug and once I am off Herceptin there is no going back. That may in part be a funding issue but whatever the reason I don't want to lose the option to use a drug that is still working.
Option #1 that I am going with is a 3 drug combo of Docetaxol, Herceptin, and Pertuzumab. Pertuzumab is another monoclonal antibody that specifically targets Her-2.
Docetaxol is similar to Paclitaxol that I was on the first time I did chemo.  The most common side effects are hair loss (boo......I just hope that when my hair grows back next time it doesn't decide my chemo hair is my real hair and so it grows back like my old hair. That would suck.), nerve pain in my hands and feet for a few days after treatment, possible nerve damage to my hands and feet, fluid retention (yay, to go with the fluid I'm already retaining), mouth sores, and low neutrophil count.
Once the decision to go with chemo had been made Ian asked me what are the rules were for while I was on chemo. Ummmmmm......lots of hand washing and always carry Kleenex. I couldn't remember anything else. I think I need to read my old posts and see what else I did.
I remember something about always using a straw and drink lots of soda water to help prevent mouth sores. Stay off public transit because of all the germs. Always carry Kleenex. I know. I obsess about Kleenex. I can't help it, losing one's nose hairs is really annoying.
After my oncologist returned from vacation I talked to her to get a few more details about my treatment plan. Her ideal plan for me is 8 rounds of chemo and then staying on the Herceptin and Pertuzumab. If I don't tolerate the treatment well she is okay with only doing 6 rounds but she really wants 8. I will do my best!
Friday I spent the day getting organised as chemo starts on Monday morning. I picked up and filled the prescriptions I will need, including more steroids. The dose is high enough I should be bouncing off the walls for a few days. I also have a couple anti nausea pills. One I take immediately pre chemo the other is only as needed. Hopefully it won't be needed.
I also stocked up on hand sanitiser and Kleenex. I still have my collection of hats and tuques so I am set there.
So now I have one day left before chemo starts. I am ready to get it going as I really hope the chemo does its thing and shrinks the skull lesion. I am ready for my hearing, balance, and taste buds to return to normal.
I will see you all on the other side after treatment #1 is done.

It's October? What happened to summer???

I have been stalling a little bit, okay, a lot, on this blog post. No particular reason, just not feeling overly creative. Summer turned out to be a bit of a blur. The weather was absolutely amazing but the Bell's palsy symptoms really put a damper on my activities.
I have regained a lot of the motion in my face......although I have to admit since I don't spend a lot of time staring at myself in the mirror the motion part is really the least important thing to me......aside from no longer needing a straw every time I have a drink.
I am still not blinking as much as I should so dry eye is an issue. I alternate weeks of taping my eye shut while I sleep so my face doesn't get too sensitive to the tape glue. And I spend a lot of time putting in eye drops. Fortunately Costco carries big boxes of eye drops so I bottles all over the house.
I am pretty deaf in my right ear. To make it worse I have a constant rushing sound in my ear and not silence. I have discovered I really appreciate silence. I hope that some day I experience it again.
To go with the deafness my balance is also wonky. I am the first to admit that I am not the most coordinated person but I'm pretty sure I look like I just stepped off a boat for the first time in a year the way I veer randomly down the sidewalks these days. And then there is the general risk of just falling down. My poor right leg has a truly beautiful assortment of bruises. I'm am glad it is pant weather now to hide them.
And then there is my tongue. Seriously, why is my tongue always affected???? The taste buds on the right side don't work and you know that burny feeling you get it you eat too many acidic foods at one time? I have that feeling ALL the time. Sooooooooooooooooooooo annoying.
I suppose it isn't totally horrendous. I find that every 4 or 5 days I have a better day and the symptoms are more tolerable. Over all though, I think these symptoms are worse than a lot of the side effects I had during chemo. Except maybe the nose hairs. Endless drippy nose still wins.
A week or so after the Bell's symptoms started I had a head MRI to see if it could explain what was going on. The last week of July, as soon as the MRI report was available I talked to my oncologist. The MRI may show signs that the soft tissue around the spot I had on my skull was starting to grow. The problem was that the MRI was being compared to the PET scan I had in January. Any differences between the scans may just be due to differences in technology so I got booked for another PET scan for the end of August.
In the meantime, in case the PET scan does end up showing growth around my skull which would mean more radiation, my oncologist put me on the wonderful steroid dexamethasone. Yay. The steroid is supposed to decrease inflammation of anything that is growing so hopefully improving my symptoms but also decreasing the side effects of the radiation should I need it.
My oncologist had already contacted my radiation oncologist that more radiation may be needed.
Even on the low dose I was put on it made me a little crazy. Insomnia, twitchiness, obsessive carbohydrate cravings, and water retention.....the moon face of steroids is so off putting. I freak myself out every time I look in a mirror because I don't look like me.
The day after my MRI results were available I also saw my neurologist......I was actually called for a same day appointment. He wanted to do a physical exam to see my symptoms before passing on his opinions to my oncologist. His opinion was that I should go for another PET scan to confirm the MRI and that most likely I would need radiation to the skull area. Nice that everyone was in the same page.
I spent most of August trying not to fall down and waiting for my PET scan. We did a little wine touring while Carly and Justin visited and Ian and I even popped down to Port Angeles to see his sister and brother-in-law. It was a fun day trip on the Coho and Port Angeles has some very good food and drink places. I unfortunately had to miss the Isaacs gathering in Winnipeg......I did my best to keep up with the gin and tonic consumption.
The penultimate (hahaha......I love that word. I only ever hear it in bicycle racing) weekend in August was my whirlwind trip to Vancouver for my PET scan. Thank you to Keets, David, and Satori for hosting me and to the few people I managed to visit with. I am hoping to having a longer trip over soon to have a better visit with you all!
I headed to the ferry immediately after my scan as I had an appointment with my radiation oncologist scheduled for the following morning and Herceptin for the following afternoon. This is part of why I don't work these days. It would be really difficult to fit all these medical appointments in around a job, particularly all the last minute ones I seem to get.
When I saw my rad onc she had the pictures from my PET scan but the report was not ready.  Not a big surprise since it had only been about 20 hours since my scan had been completed. From the pictures she was able to see that there had been growth in the soft tissue next to where the skull lesion had been earlier. Yippee. More radiation. This did explain the Bell's palsy symptoms as the tissue growth was right at the base of the skull where the nerves enter the skull. The tissue is pressing on the nerves and causing the symptoms.
Radiation was scheduled for 5 treatments. Each dose would be less radiation than I had during the previous hit to my skull but the total would be more. Hopefully the premedicating with the steroid was worthwhile and I don't get sick like I had the previous time.
An hour and a half after the consult I had my planning scan.....see what I mean about short notice appointments? And an hour and half after that was Herceptin. Busy day. Radiation was scheduled to start the next day.....oh boy.
Mom drove me to my 5 days of radiation as I really wasn't sure how it would go. It wasn't super fantastic but it ended up not being as horrible as the first time. Some nausea and general hideousness feeling but it definitely could have been a lot worse.
Since then I have been waiting to see if my symptoms improve and trying to get off the steroids. Face mobility is very much better but the rest is pretty hit and miss. Some days are better some days are worse but overall there hasn't been much sign of consistent improvement.  Last time I had radiation it was at the beginning of September. My headaches didn't go away until April even though by January the lesion was essentially healed. Perhaps I just need to be more patient, I just don't want to be. I am ready for some silence.

3 Years - Should I celebrate or cry?

July 13th, what should have been a harmless Friday in 2012 turned out to be a life changer. It is now 3 years since my diagnosis. I should get up and dance and celebrate that I have made it this long but this day also marks the end of life as I knew it. Sure, no one truly knows what will happen once they get out of bed each day......Will today be the day the random driver busy texting schmucks me as I am crossing the street? No one really knows how their life will go so all we can do is rely on the statistics.

The median life span after a stage IV breast cancer diagnosis is 29 or 28 or 26 months depending on who you ask and I'm at 36 months. Based on that I guess today is a day of celebration. I should be breaking out the champagne but it might interfere with the meds I am currently on, but more about that later.

Since it has been a while since I have talked about the realities of living with metastatic breast cancer here is a little video with a theme song that I am planning to add to my playlist.

https://www.youtube.com/watch?v=QDQ0FjP7J-c

Ok, lemme see, my last post was in March. That was after my surgery to get my lymph nodes out and before my travels started so here goes......

In mid March I met up with my friend Laura and we spent a weekend in snowy Montreal. Trust me that it was snowy, all I have to show for it is this.....

Nutella and banana. Yum.

From Montreal we hopped the Amtrak and headed south to New York City!!!! I ❤ New York.

We met up with my friend Sarah and then Kara joined us and we had so much fun! A St. Paddy's Day parade, The Cloisters Museum, Central Park,

 The American Natural History Museum to see the dinosaurs,

 a couple of shows, the

Here's the view from the 89th floor:

We managed to time our visit perfectly as the clouds started coming in just as we were leaving.

After a week in NYC I continued on to Toronto where Ian met me and we spent a week with my little nephew and his parents.  It was Ian's first visit to Toronto so it was unfortunate it was still so cold.  We did do some touring around, we visited the Mill St. Brew Pub, Niagara Falls - so amazing I have never been there before, and we learned about the production of maple syrup at the Kortright Centre, a good Canadian activity.
There were also a couple of family gatherings.  It was so fabulous to see you Ilana after 18 years!! And congrats on your engagement!

After a week of Toronto cold Ian and I headed back to the balmy west coast. My gardening began in earnest while I waited for radiation to begin on my right armpit where I had the lymph nodes removed.

Radiation started on May 1st and ran for 16 sessions.  I ended up getting the lesion on my right 6th rib irradiated at the same time as I managed to aggravate it with a cough I picked up during my trip. Radiation went very smoothly, especially with the gardening help and company supplied by Keetah and Satori.  Keetah was my travel companion for half my radiation appointments and it sure made the drive to the Cancer Agency less depressing.

Once radiation was complete my life settled down and it was just me and the garden most days.....any one in need of tomatoes let me know.  I went a little overboard things grow so well here. Also tomatillos if you like green salsa.  And lettuce if you need it right now.  And let's not think about the cucumbers or zucchinis.

There was a brief interruption of my gardening when I had my normal check up with my medical oncologist.  It was decided that since I had just completed radiation there should be a delay until my next scan even though I had not had any scans since January.  The delay will make it easier to tell if the areas that were irradiated are healing or staying the same or growing.

Ian has made jam, marionberry (similar to a blackberry),sour cherry, and raspberry so far.  We also have pounds of regular cherries in the freezer.  Mom helped me make grape juice with some of the grapes left from last year since we need to make room for this year's crop soon.

And our blackberries are starting to ripen.

Needless to say I won't starve even if I don't visit a grocery store for the next month.

In the middle of June Ian and I sent the pets to Pender and we went up the island to Campbell River to visit another St. Paul's escapee and her husband in their new home.  They rent a suite and a cottage on their property and I highly recommend it as a place to stay.  We made it to the Courtney farm market which was excellent with a fabulous assortment of produce and other farm fresh foods available.  And the northern part of the island is also wine country so we had to pop into a local winery as well.  We also had time for a fishing charter and Ian and I came home with a good sized spring salmon.  Yay! Smoked salmon in the freezer again!

After we got home from Campbell River I had my last visit with my radiation oncologist.  My skin withstood the radiation with only tan lines.  Aside from my regular herceptin,  zoladex, pamidronate, and medial oncology appointments that was the end of my extra appointments until the end of August.  Or at least that was what I was planning.

On the 4th of July I was off to Vancouver to pick up Keetah and Satori.  We had a holiday planned with Sarah on the beach at Shuswap Lake.  Lucky for us we left Vancouver just as the smoke from the Sechelt forest fire started to get bad.  We had a fantastic 6 days just outside Tappen with a lovely lake beach to visit every day

We had a very tasty Thai dinner one night in Salmon Arm, visited the local gouda farm and a tasty butcher, and tested out the breakfast offerings at a nearby native run golf resort.  All in all a lovely break from my day to day life.  Thanks for being such a great hostess Sarah!

Keetah, Satori, and I returned to Vancouver on Friday and I was noticing that my right eye felt a little dry.  It had been a little scratchy earlier in the week but I didn't think much of it due to the drier air and the smoke that was around and the car air conditioning.  By Saturday when I returned to Victoria things were getting worse and I was noticing the right side of my mouth did not feel right.  Just when it seemed like my weird tongue had just gone away too.

Off to the Royal Jubilee Emergency we went.  Yes, other hospitals are closer but I worked at the Jub and that is the place I like the best.

As I suspected the tentative diagnosis is Bell's palsy which happens after cranial nerve 7 sustains damage, most often after it is infected by a virus.  I did have a head CT done just in case and the good news is that there is no sign of any new mets in my brain or skull.

There were however some changes from the MRI I had in January.  The changes may be due to the differences between CT and MRI scans so I am just waiting for an appointment to be scheduled for a head MRI.  I am also going to be booked in to see my neurologist again.

In the meantime I am on a high dose course of prednisone and antivirals and I have to put the gooiest eye drops in my eye to protect it from drying out as I have lost the ability to close my right eye most of the time.  That also means I have to tape my eye shut at night so I am not sleeping with one eye open.  Eating is a bit of a challenge and I can only drink using a straw unless I want to dribble my beverage all over.

Supposedly 80% of people recover with no adverse effects within a few months so I hope I am in that 80%.  Gotta say this is freaking annoying.

Anyhoo, I think that pretty much covers everything since March.......Montreal, New York, Toronto, gardening, Campbell River, Shuswap Lake, and Bell's palsy with the regular mixture of infusions, injections, and treatments thrown in with a couple of med oncology appointments.

Just a reminder, I am approaching my long term goal of reaching 40.  The big day is November 10th and I am planning to throw a shindig in Vancouver the following Saturday.  Let me know if you would like to attend as I hope to start the planning some time this summer.

Happy July 13th everyone! I hope your 13th is always less eventful than mine was in 2012.

Bye bye lymph nodes

As expected the surgery to get my lymph nodes out was done a tad suddenly. I had talked to my surgeon's assistant and we arranged a surgery date of April 1st. The next day, Friday Feb. 20th a message was left on my phone while I was on my way to the cancer agency for my herceptin.
It was my surgeon's office.......some O.R. time had opened up on Feb 24th and they were holding the time for me. Would that work?
Sure.

I have this policy about my treatment that started back when I had my wisdom teeth pulled. When in doubt, just agree. "Sure, pull my wisdom teeth, I just have to be able to go to my cake decorating class at 7 p.m."

If a time really doesn't work, for example, the first surgery date suggested was March 6th, um, no, I have to be on a plane to Montreal on the 13th, then say no. If there is nothing either truly life changing or just too much fun to pass up, just go with it, especially if it is a short wait time. I already have to plan my life around enough medical treatments, if I can cut down on wait times my life just goes more smoothly.

So, yes, last Tuesday my lymph nodes were taken out and the bump on my chest wall was cut out some more. Overall I feel much better with the lymph nodes gone than I did before even with a couple of incisions and a yucky drain sticking out of me.
Hands down the worst part of lymph node surgery is the drain. I live in fear that I'll do something dumb, forget it is there and accidentally yank it out in the middle of a store. Gross.
Aside from that it is no big deal. There pain has been pretty minimal and I haven't taken any pain killers since Saturday, day 4 post surgery.

Ok, I do admit that I do blow things off a bit........I think this would be item #11 on my 10 things list, but then it would be 11 things and then I'd have to change the title and then it would just be a pain in the butt. Let's just call this an addendum to the list.
I will down play things on occasion, partly just as a way to deal with them. Eventually I will admit if something really sucks, but in general it is way easier to deal with things if I don't build anything up to much. In a good year I have 50 medical appointments. If I made those into big deals then the last 15 extra appointments I have dealt with in the last few months would just make my brain explode.

This whole surgery thing, however, isn't one of those things I am just blowing off. It really hasn't been a big deal. A big deal was the radiation to my skull. And I don't think anything will be a big deal until it can surpass that radiation in suckitude level. Hopefully I have to wait a long time for that.

Enough blather, it is 10 degrees and sunny. Time to sit and enjoy the sun and wait til Monday when the gross, nasty drain comes out 🌞

My 10 things

I saw a post on my Facebook wall a few days, or maybe weeks, ago posted by one of the chemo support sites I randomly decided to follow during the dark days of chemo. It was a blog post that has apparently gone viral but I hadn't seen it before. It really made me start to think about my life and the things I do and don't tell people.
The original post was from Roadkill Goldfish. I don't know anything about the blog or its writer other than the woman has thyroid cancer, but here is a link to the post http://roadkillgoldfish.com/friends-cancer-want-know/.

Since I finished chemo and no longer deal with the crazy steroid induced insomnia of treatment day I haven't done any fun posts so I thought while not necessarily fun it would be worthwhile to do a similar list.

Here goes......

1. Chemo does not suck. 

Cancer really, really, really sucks. Chemo kills cancer cells. And you know the saying, the enemy of my enemy is my friend. Nuff said.

2. Being called strong, inspirational, heroic, a fighter or any of the zillion other words people use for cancer patients just feels weird.

I suppose I could spend the rest of my life curled up in a little ball and hiding under the bedcovers but that seems a little pointless. Why go through all the crap I've already been through and all the crap I still get to go through just to do that? Instead I do what I'm told, jump through the hoops and enjoy my life as much as I possibly can, but I don't do anything different from what everyone else in this situation does. Seriously, when was the last time you read about a cancer patient that didn't battle valiantly?

3. I do occasionally spend time curled in a little ball hiding under the covers crying my eyes out.

I think it is just necessary. It is like an emotional reset button. Once it is over I get up and get on with living again.

4. The next time I lose my hair it is going to be a disaster.
You have now officially been warned. Losing my hair once is ok. It is part of the chemo process and fortunately I have a nicely shaped skull, but I'm sorry, having to go through hair loss a second time is just plain cruel.  Plus, it turns out I love my chemo hair is even more than my old hair which will make losing it that much more difficult. I can only hope it is a long time until I have to go back on chemo.

5. Do everything you can to reduce your cancer risk.
Let me repeat, cancer really, really, really sucks. You do not want to go through this and I wouldn't wish it on another living thing. I am proof that a healthy lifestyle doesn't necessarily prevent cancer but you should still do whatever you can to decrease your risk.

6. When bad stuff happens to other people I have sympathy and compassion for them.
Life is not a contest. There is no bad news measurement stick. When I hear bad news about someone whether it is about the death of a family member, a fender bender, a sick pet, or any other bad whatever that happens to everyone that is human I don't compare the situation to my own. I take the news for what it is, bad news, and offer support.

7. I am so jealous of everyone that is working.
I am surprised no one has commented on the blindingly green shade my eyes must turn whenever someone's job is discussed. Being 2 1/2 months into my dream job and then getting handed a cancer diagnosis kinda makes we want to start screaming and throwing dishes. Fortunately for the dishes that also sounds exhausting so it ain't gonna happen.

8. I appreciate every email, text, or message you send me.
I probably should tell everyone this all the time but I am terrible at responding to those same emails, texts, and messages. I do promise that I will eventually respond to all communications.

9. I can be fine today and dead in 3 months.
I live with that every day. I watched it happen to a woman in her mid-40's with a similar diagnosis to mine last year on one of the online support groups I belong to. I find it much easier to get out of bed every day by just putting it out of my mind, but it still colours many aspects of my life. So, if I suddenly go crazy and drop everything to go on a trip or even just buy another pair of shoes by all means come join me, it might be my last chance.

And on that note,

10. Stop and smell the roses.

Actually, I have told you all this before. I wrote an entire blog post about it. Here's the link in case you need a refresher http://nspip.blogspot.ca/2014/01/stop-and-smell-roses.html.

If I think of it, I'll review this list in about 6 months and see if anything has changed. Now, I have to go make some chocolate cake, gotta take #9 to heart ;-)

A little neurology goes a long way

I saw a neurologist last week about my tongue thing.  He was fantastic and I am very happy to have him as the newest member of my healthcare team.
The good news is that I do not have MS, ALS, or epilepsy.

Due to some very old scar tissue in my brain my neurologist suspects that my tongue issue may actually be congenital and for some unknown reason has decided to start showing symptoms now. It is possible that for another unknown reason the radiation I had to my skull is what kicked started the symptoms.
My neurologist would not be surprised if the symptoms disappear as suddenly as they appeared. I am going to hope for that.

At this point it doesn't feel like the symptoms are appearing any more frequently which is good. If the symptoms do get worse and start impeding my speech more my neurologist has offered to send me to a speech pathologist if I deem it necessary.

Early on Saturday....... Yes, Saturday.......morning I had to go to Victoria General for my first infusion of Pamidronate. This is the new bone drug I am switching to, replacing Clodronate. I was getting really tired of the timing of Clodronate since I had to take it first thing in the morning then wait an hour to eat.
Turns out one of the great things about Pamidronate is that in the future I will have to go in to get my IV inserted and the drug attached but then I can go home. The drug is infused using a portable infusion pump bottle and not a regular infusion pump.
This is what the bottle basically looks like:

The balloon inside is filled with saline and the drug is added. Then the balloon slowly collapses and the drug solution is infused. Pretty cool.

I have to remove my IV after the drug finishes running, but that is fine if it saves me from 4 hours of hanging about in a hospital.

After I got home from that adventure I felt okay. For Valentine's Day dinner it was cheese fondue and pain au chocolat bread pudding. Very tasty.

By the time I went to bed I was definitely feeling off. Heart burn, achiness, and general grossness. I still had some of the peppermint spirits I used during chemo for upset tummy and it worked its usual miracle.

Sunday morning I woke up and I believe I felt sort like a person would about a week after being hit by a bus. Every part of my body ached except for my left elbow and I was so tired. I'm not quite sure why my elbow got to escape the joy.

After some Tylenol and several hours of not moving on the couch the ache started to fade. By Sunday evening it was pretty much gone. Monday morning I felt normal again.

Now I know, the day after Pamidronate will be a write off. Over time I am hoping the side effects will decrease.

Ok, back to waiting for surgery dates.......

The saga continues

Hmmmmmmmm.............la la la la la la la la la.............I don't remember where I left off in my last post (if I knew how you'd be listening to the Jeopardy theme as you read this) and I don't feel like going back and rereading it. I think I'll just wing it.

January has been chaotic.

I think I have already posted that the bump above my mastectomy scar and my enlarged lymph node were both positive for breast cancer and the node is estrogen receptor negative so the zoladex and letrozole I am on are not useful in slowing cancer growth.

The second week of January I was scheduled for a breast MRI and I also started getting a weird new thing going on with my tongue. Just before I went to bed on Monday I lost control of the back part of my tongue for a couple of minutes. It was very strange.
On the Tuesday afternoon I went for my breast MRI. Not overly exciting, lie on a bed facedown and don't move. The machine used to take the pictures includes a large magnet (Magnetic Resonance Imaging) so there are a few interesting pre-test questions. The most interesting one, have you ever had any metal objects, such as iron filings, stuck in your eye from maybe an industrial type accident? Doesn't that offer up a rather gross and extremely painful mental image? Yowzers!!
They also ask if you have any shrapnel, joint implants, a pacemaker, or other random metal medical items stuck inside you but the eye question is the one that really gets me.
The sucky part of the test is that while each set of pictures is being taken the machine makes an incredibly loud noise. The tech puts headphones on you and cranks music through them while the pictures are bing taken, but it still sucks. There are 5 or 6 sets of pictures taken and each set takes between 30 seconds and about 3 minutes. If you have decent hearing the end really can't come soon enough.
I stopped to do some shopping after my MRI and the tongue thing happened again. It happened a few more times that day. So annoying.

On Wednesday the tongue thing started up just after I got up for the day. It only lasts for maybe a minute or two each time, but now that it is day 3 and happening more frequently I emailed my oncologist to tell her about it. She responded right away and agreed that it seemed very weird and she was going to send in a request for me to get a head CT done to see if showed anything new.

On Friday I met with my surgeon to discuss the lymph node issue. It is generally agreed that the lymph nodes should be removed. She had the results of my breast MRI and it is possible that there is actually breast tissue involvement right at the lymph node as well as the lymph node being cancerous.
Also, it turns out that when she removed my bump one of the margins was not clear so she needs to go in again and remove more tissue and hopefully get a clear margin then.
I asked about lymphadema and blood work and scans and treatment if I get the right side lymph nodes removed. I got the normal surgeon response of "there is no real proof that getting iv's or blood work done will actually cause lymphadema" speech. And, as she pointed out, I have lymphadema on the left side so it could be used for procedures now since we are no longer trying to prevent lymphadema. True, and I have no idea why I got the lymphadema anyway. I had no visible cat scratches (probably for the first time in ages) or any other injuries I could see so having it occur when it did is a little weird.

I also learned at my appointment that the cancer in my lymph node is still Her-2 positive. That means herceptin should be effective but it is currently not preventing cancer cell growth. That is finally some sort of good news.


Immediately after my surgeon appointment I had to go zooming over to Vic General (my surgeon's office is across from the Jubilee, so pretty much across town, and of course the appointment was late starting) to get my head CT. I am still a little stunned that I got fit in less than 2 days after the request went in. A little scary.
The head CT was uneventful, except for the 20 minutes it took to find a parking spot, and I was told the results would be ready early the following week.

On Saturday I headed off to Vancouver. I had a wonderful visit with everyone!! Thanks for all the distraction and fun, you all really help keep me from being boring and dreary and overwhelmed by all the crap going on. And extra thanks to Laura, Ian (Laura's Ian, not my Ian ;-)  ), Polo, and Pi and Keetah, David, and Satori for putting me up while I was over!!!

I had my PET scan at the Vancouver cancer centre on the Tuesday. It is the really fun test that does not allow any exercise the day before, no gum chewing the day of, and involves relaxing in a dark room for 45 minutes after being injected with a radioactive glucose solution.

I came home on Thursday and on Friday morning I received an e-mail from oncologist. She already had my head CT and my PET scan results.
There was nothing on the head CT to explain what is going on with my tongue. So after talking to my surgeon and radiation oncologist my oncologist put in a request for a head MRI.
The PET scan showed 2 areas of activity, the right lymph node and my right 6th rib. Neither was a surprise as the lymph node has been thoroughly inspected and I have been having random pain in the area of that rib for the last month or so that I figured was probably a met that was acting up.

I saw my oncologist in person a few days ago, after being seen by a resident. Since my case is nice and complicated any resident interested in breast cancer gets to see me so it turned into a long, tiring appointment. The decision for treatment is to continue to follow an aggressive path. This means my oncologist is recommending lymph node removal and mastectomy for the right side (yay! I really want the right breast off, the imbalance drives me completely insane and it is my only regret in all my treatment decisions that I didn't have the right mastectomy done at the same time as the left.) I would then have radiation to the right armpit and to the 6th rib. The radiation to the rib should stop cancer growth there and reduce the pain.
I also requested at that appointment to switch from the clodronate pills for my bones to an iv drug. Having to wait an hour to eat after taking the pills in the morning drives me crazy these days and I am ready for a change. My onc decided to put me on something that is a monthly injection. I asked if that would be at the cancer agency because having to go to a walk-in for my zoladex injection is a total pain in the ass. She had a little hissy fit at me for not telling her that my zoladex was being done elsewhere and she said she would get it reinstated at the cancer agency for me in time for my March injection. The bone drug injection would also be at the cancer agency. Yippee! So much easier.

I had a few hours to kill post appointment so I spent some time with some old friends at the Jubilee lab. It is nice knowing people in so many hospitals :-)
Then it was time for my head MRI (yes, already. I think this tongue thing of mine has really freaked people out. It is extremely disturbing how fast I am getting in for tests). This MRI was much better than the last MRI even though it was the classic type of MRI machine that is the long narrow tube.  Fortunately I have absolutely no problems with claustrophobia. I got to lie on my back which is more comfortable and I got earplugs that had the music piped in. Way better for blocking the sound of the machine!!! Good thing too since there were more sets of pictures and they all took longer. It seemed like about 10 sets and each set took between 3 and 5 minutes.
Finally with the pictures all acceptable I got to escape the medical facility. I ended up picking up Ian from and we met my parents for some sushi. An excellent way to end the day.

Since then I have visited with some relatives and watched the Super Bowl. No comment about that other than, it was 1 yard!!!!! What on earth made you think throwing the ball was a good idea??!?!?

So, a quick recap, node, bump, and rib are all cancerous, some of which is ER negative and I am waiting for dates for lymph node removal, mastectomy, and radiation.

Congratulations if you made it all the way thru this long, convoluted post. Have a drink.

Happy 2015! Wake me up when it's over

Happy New Year! 🎉🎉🎆🎇🎇🎉🎆🎇🎉

I hope everyone had a fun and safe time ringing in the New Year.

My Dec. 31st was pretty quiet. My parents came for dinner so we could celebrate Christmas, Dad's birthday, and New Year's all in one go since Mom and Dad were in Mexico (no fair!) for the first 2 occasions.

Now that we are 12 days into 2015, I am ready for it to be over. I don't normally wish for time to pass too fast but this year has not been filled with much good news. So far, I have 2 of the 3 biopsy results I'm waiting for and I'm  batting a pretty big zero.

First off, the biopsy result of the little bump came back. Positive for breast cancer. That means I will need surgery to make sure all the cancer is removed. When the biopsy was done my surgeon had to go right down to the muscle so surgery may not be much fun. I don't have much tissue left above the muscle.
In the same phone call from my oncologist I learned the cancer in my lymph node is ER negative. That means the presence or absence of estrogen does not effect cancer cell growth so the letrozole and zoladex are not helpful. There is a question of whether the cancer in the lymph node is a mutation of the original tumour or is it a new primary. My mammogram came back negative for cancer which is an indicator the new growth is a mutation. But, since mammograms aren't the most sensitive screening tool, I am scheduled for a breast MRI tomorrow to see if there's something really tiny going on.
The Her2 results are not back yet, but I should hear something soon.

When my oncologist called me with the results, she had already brought my case before the local tumour board to brainstorm what the appropriate treatment of the lymph node should be. Turns out my current situation does not have any reported precedent so the docs are winging it.
After reviewing my history, the tumour board recommendation was that I go for a PET scan.
If the PET scan shows the only really active cancer is in the lymph node, then the recommendation is that I go for surgery and have the right axilla lymph nodes removed. The consensus was that it is worth going with an aggressive treatment since my original treatment plan was so aggressive. No point in going hard core at the beginning just to wimp out part way through.

The idea of have more lymph nodes removed doesn't seem like a great idea to me. I am still dealing with the lymphadema in my left hand. And there is the question of what do I do about blood work, treatments, bone scans, CT scans, or anything else I may need done that involves a needle? Does that mean I will have to get a port? I really don't want a port. I don't have much excess fat in the area where it would go so it would stick out and drive me crazy.

I am scheduled to see my surgeon on Friday to discuss the idea of lymph node removal. Perhaps she will be able to suggest other locations for port placement or at least have suggestions for what to do if both arms are at risk for lymphadema.

My PET scan is booked for next week in Vancouver. That is one positive I get out of all this, an excuse to visit Vancouver and all its wonderful people 😀

So, the beginning of 2015 is starting off the way 2014 ended, tests and more tests and with nothing actually being resolved yet. The next week will be action packed. I'll post again once I learn something new.