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.