Chaos 2016 or My First Experience with Questionable Healthcare

2016 started off with a weekend trip to Winnipeg to see my wonderful cousin Ilana marry her sweetheart. The bride was beautiful, the groom handsome, the flower girls were wonderful and thanks to Carly, Justin, Nick, Rick, Sarah, and Tammy I had some fabulous shoes.....

These shoes really were meant for a wedding guest. Here is a little sole art: 

Ilana & Shawn, January 2, 2016
Ian & Sheryl, April 27, 2006

The inscription on the sole says: LOOK OUT for hidden gifts and surprises
And the sole: Always choose love signed John Fluevog
Such wise words for a pair of shoes!

Winnipeg behaved by giving us beautiful sunshine and balmy temps.....yes I may be from the west coast but even I know -8 C is fabulous winter weather for the prairies.
I reconnected with  cousins I hadn't seen for 20 years (hard to believe we are all old enough to say that) and all in all it was a nice little break.

I arrived home Sunday evening and Monday morning it was time for Docetaxol #4. Treatment was uneventful which is always best. The only excitement was a visit from the teaching nurse to show me how to give myself my Neupogen injections.
Neupogen is a drug used to boost my bone marrow into producing more neutrophils (the white blood cells that fight against bacterial infections). The reason for the injections is to prevent another occurrence of the febrile neutropenia I had in December even though it really wasn't febrile neutropenia. It was more bad timing on my part, I had a cold with a bit of a fever right as my neutrophil count went to zero. Ah well, now we are just following protocol and I get Neupogen shots.
Doing the injections is pretty easy although as a lab tech I find it a little odd to be putting something in rather than taking out blood :-P

Day 3 after treatment the joint pain started but wasn't too bad. It was also my first Neupogen injection. No problems yay!  I had to do the injections for 5 days in a row and all was smooth until day 5. I woke up that day to the worst joint and bone pain I had ever had. When I got out of bed to get some Tylenol I had the weirdest feeling that my pelvis was hollow and would not support the weight of my upper body. As I stood I was half expecting my torso to just crush through my pelvis and hit the floor. Weirdest. Feeling. Ever. Fortunately if didn't happen and now thinking about it makes me laugh because it sounds so ridiculous.

Day 5 of the injections was Sunday and when I woke up Monday basically all the pain was gone.  Over the next 2 weeks until my next treatment things were okay. I even forgot my steroid dose a couple times and survived with only a mild feeling of ickiness.

The Friday before my next treatment was my routine oncology appointment. The primary purpose of the appointment is my official weigh in because my chemo dose is based on my body surface area.  For this appointment I was scheduled to see a general oncologist as my regular oncologist was either swamped with patients or away and since my appointments are usually boring seeing a sub is no big deal. Until this time.

I have been dealing with cancer and the BC Healthcare system for just over 3 1/2 years. During all this time I have not once had a single concern about the quality of the healthcare I have received and in general I have always been extremely well looked after. In a 15 minute appointment that all changed and I now wonder just how other patients are treated routinely and what quality of care they actually receive.

Normally if I am not seeing my regular oncologist she will reach out to the substitute beforehand to make sure the sub knows what our treatment plan is. Currently the treatment plan is for me to remain on the full dose of Docetaxol and for 5 days I will give myself Neupogen shots.
When I met with the substitute oncologist she immediately told me that just prior to my appointment she had met with the breast cancer specialist on call for the day and it had been decided that I would no longer get Docetaxol and I would go back to Paclitaxol which I had been on my first time through chemo. WHAT???????????

The reason was that Paclitaxol is normally tolerated much better than Docetaxol and generally neutrophil counts don't drop as low. Since I had dealt with a febrile neutropenia episode in December it seemed to be a good idea to switch chemos. Plus, the plan of using Neupogen as a part of my treatment plan is not standard protocol for metastatic breast cancer patients, particularly since Neupogen can cause cancer cells to grow. WHAT?????????????

The oncologist then went on to explain that because I was being switched to Paclitaxol my pre-meds would change. I would no longer have to do the 3 days of high dose steroid around treatment day,  okay no big deal there. Also, because I would be receiving Bendryl immediately prior to the Paclitaxol I would require someone to drive me home. Oh, and it will add 2 1/2 hours to my infusion time. (Currently treatment takes about 3 hours)
The oncologist then went on to say that there was one other possible treatment option. I could stay on Docetaxol but the dose would be dropped from 75 mg/m2 to 65 mg/m2 and the Neupogen would be stopped.

At that point I was so flabbergasted I didn't really know what to say so I started with "I am not switching to paclitaxol and here are my reasons...."
1. I found Paclitaxol harder to tolerate than Docetaxol. My nails were horribly damaged, I had blisters on my feet. My neutophil count always dropped to zero.
2. I am not going to depend on someone to drive me home. I like my independence thank you very much.
3. No way in hell am I spending an extra 2 1/2 hours getting infused.

I didn't say it but I was thinking that if I showed up for treatment on the Monday and it was Paclitaxol I was walking out. I was not in the mood to be blindsided with major treatment changes by someone who has never met or talked to me before.

The oncologist said okay she would run that by the specialist on call so I should just wait a few minutes. The onc left the room and came back pretty quickly. When the specialist was told my opinion his response was "okay, whatever she wants to do."
At that point I should have put my foot down and said that what I really wanted was a full dose of Docetaxol with the Neupogen injections but I just wasn't up for what felt like would be an actual battle.
At that point it was agreed, I would receive Docetaxol on the Monday at the 65 mg level. I was not happy but I was ready to go home. And I knew I had to get in touch with my regular oncologist to make sure we got back on track after this weird blip.

So the two major reasons for why my treatment should be changed from Docetaxol to Paclitaxol were 1. Neupogen is not standard protocol for metastatic breast cancer patients and 2. Neupogen can cause cancer cells to grow. I say it again, WHAT???????

I am a part of a very active metastatic breast cancer support group and needless to say Neupogen is pretty standard protocol all over North America and it would probably be news to everyone that Neupogen may actually make cancer grow. On top of that, if Neupogen was such a risk why did both my regular oncologist and the oncologist I dealt with while in hospital both add Neupogen to my treatment? Talk about apples on one hand and ground beef on the other. These guys are so far apart we aren't even comparing fruit.

To resolve part of this issue for myself, the BC Cancer Agency is sufficiently high tech that it has all of the chemotherapy standard protocols available on line. How very convenient for me. So I did a quick search through the advanced breast cancer list and found my Docetaxol protocol and shocker! What did I find? Neupogen is a standard response in cases of febrile neutropenia or other situations where the neutrophil count drops below a certain level and does not return to a high enough level prior to the next treatment.
And wow, I am getting royally pissed off all over again just thinking about this. Regardless of what either oncologist's intention had been by saying Neupogen was not standard protocol I feel like I have been fed a bald faced lie and I was just supposed to swallow it.
Oh, and to make it even better, standard protocol in the more extreme cases where a full dose can not be tolerated, the dose is cut by 25%. So where on earth did the whole 65 instead of 75 mg come from? Was that how much change the onc had in his pocket that day?
And this leads me back to wondering about how other patients are treated, particularly in Victoria where the population is older and likely much less tech savvy or just unwilling to question the gospel of the physician. I fought to get what I felt was the better of 2 bad choices but even I didn't stand up for myself fully to get exactly what I wanted because I was too tired to have a fight. Also, I agreed to the treatment already knowing that I would be contacting my regular oncologist and we would get back to our plan the next time round.

Now for the bit about Neupogen making cancer cells grow. Huh?

I emailed my oncologist on the Tuesday prior to my next oncology appointment (and for the record I was booked to see the same substitute as the previous time. I was tempted to phone the Cancer Agency and say that I refused to see her again but I decided that wasn't necessary. I would be going into the appointment fully prepared for the possibility of randomness and I wasn't going to back down from getting the full dose of Docetaxol with Neupogen from that point on.) and let her know what had happened at my previous appointment. I asked about the whole cancer cells growing thing. And I told her that I had really struggled with my Bell's symptoms for the last couple weeks. My tongue was much worse and if I delayed my steroid dose by even a few hours I started getting a headache and nausea. All in all the two weeks really sucked.

As always my oncologist responded very quickly. Turns out the "can make cancer cells grow" is a loose translation for: there is a theoretical possibility that because Neupogen stimulates the bone marrow to produce neutrophils faster, the Neupogen could actually overstimulate the bone marrow to the point a leukemia is induced. Ahhhhhhhh.
So you're concerned that I might get cancer while on my cancer treatment. Got it.

My oncologist went on to say that she has never had it happen to one of her patients and she does not know of any colleague that has ever had it happen to any of their patients either. So we really are talking about a theoretical possibility. Hello! Terminal cancer. I think I have bigger problems. And there's that bus I could accidentally walk in front of tomorrow while walking and texting.

With the growing cancer cells all cleared up my oncologist and I returned to the page we have both been on for a while now, my next treatment would be full dose Docetaxol and Neupogen injections. Phew.

My oncologist also said that she had been in touch with my radiation oncologist about the fact that my Bell's symptoms had gotten worse. Most likely a brain scan of some sort would be suggested but my onc would wait until she heard the recommendation of my rad onc after I had been assessed.

On Thursday I was contacted by my rad onc's office and I was booked to see my rad onc after my oncology appointment the next day.

On Friday I had my official oncology appointment and weigh in. It was the same substitute oncologist as the previous time. When she came in she immediately apologised for all the confusion at my previous appointment. She had been in contact with my regular oncologist and she was aware that the treatment plan for Monday was a full dose of Docetaxol with the Neupogen shots. Phew again. Everything is under control.

At that point I was ready to move past (sort of) the previous appointment and start over with this oncologist when she unfortunately opened her mouth again and said "part of why I didn't want you to have the Neupogen shots was because they are expensive and I was concerned you didn't have coverage and I didn't want to ask". EXCUSE ME?????? You didn't want to ask if I had coverage to ensure I was getting the most appropriate treatment???

Just a little background on the patient cost of Neupogen: 5 days like I do is about $1000 before extended medical kicks in. BC has something called Fair Pharamacare that all BC residents should be enrolled in. This program covers 75% of drug costs after a deductible is paid. The size of a patient's deductible is dependent on family income.
The manufacturer of Neupogen also runs a program to assist patients with the cost called the Victory Program. Within 2 days of receiving my prescription for Neupogen I was contacted by the Victory Program. The rep asked for all my provincial health info as well as my extended health info. I have extended health through both my work and Ian's. The rep then contacted my extended health insurer and then we had a conference call with a Fair Pharmacare rep. Within a day I knew the Victory Program would not give me assistance as I had 100% coverage through extended health.

The substitute oncologist should have at minimum known about the Victory Program. I have known about it for several years.....definitely since before I ever started this cancer adventure. And the fact that she didn't want to ask about my coverage when I had already been through one course of Neopugen? That just seems downright odd. Coverage and cost is a pretty basic part of healthcare. To not ask about it seems inappropriate. Oops. I think I just dropped my opinion of her again. Can you see it over there on the floor?

Anyhoo, I managed to escape the appointment feeling only mildly aggravated. I kicked around the Cancer Agency, snacking on a HoneyBun (if you don't know what they are Google it. They are super yummy. I have tried making them but I have not been able to replicate the softness of the dough yet), waiting for my radiation oncologist appointment.

My radiation oncologist I just love. I'm not sure if I love her or my regular oncologist more, they are both so fabulous. During the appointment I explained how my symptoms had been worse the last couple weeks and I absolutely could not miss a steroid dose. It was decided that I should go in for a brain MRI. Based on the results my rad onc would see if it would be possible to do anymore radiation at the site. At this point she really doesn't know. It may be that a small dose may be possible but whether such a dose would be of any value isn't known. I am just going with the theory that no more radiation is possible and we will wait for the MRI results before doing any more thinking on the whole issue.

After my appointments I met my Aunt Gwen and we had coffee and then saw Deadpool. Some gratuitous sex, gratuitous violence, and a lot of blood spray. A wonderful way to wash away the memories of the first half of the day!! :-)

Okay, I promise this post is almost done.
Monday I had treatment. Smooth yet again. Yay!
Tuesday I was contacted by the Vic General MRI department. There had been a cancellation. Could I be there in 15 minutes? Umm....no. Fine, we can book you for 2:15 instead of 2:00 can you be there in half an hour? Umm....okay? So, of I went for my MRI. And I even made it on time. Results should be available within 2 and 7 days.

Wednesday I skipped my steroid dose to no ill effects, started my Neupogen shots, and Nick came for a visit. Ian and Nick spent the next couple days doing manly Central Saanich things such as drinking beer, playing with chainsaws, and burning stuff outside.
 Thursday my joint pain started. No better and no worse than usual. Saturday Nick left. Sunday, day 5 of Neupogen was definitely a bad pain day. But not as bad as the first time and definitely no feeling of hollow pelvis. Thank goodness!!
Monday I again skipped my steroid dose and.........I had probably the best day I have had in months :-)  No nausea, no headaches, my ear even popped for about 20 seconds (as a part of my deafness as a symptom my ear has a constant feeling of being totally plugged, any time it pops,which it hadn't done since December, I get a few seconds of pressure release and even a little hearing).
The absolute most amazing thing though is about the area around my ear. For the last several months..... maybe since about September I have had this sensation that the portion of my head around my right ear and down towards the base of my skull is missing. The peripheral nerves still work so if I touch the area there is sensation but I guess because of the damaged cranial nerve I have no general sensation that the area is actually present. I admit it, when I touch my head there I am always a little surprised that my hand actually hits something. It really feels like I'm missing half my head. Anyway, on Monday I had the vaguest sensation that in fact my head may actually be intact. It is now Wednesday and I still have the feeling. So absolutely fabulous!!! I really hope this continues, this is the most normal I have felt in the last 7 months and I would really love to have a few more days like this.

Alrighty, now I'm done :-)

Almost.....no MRI results yet but I'll post when I hear something.

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 🌞