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 😛

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 Pharmacare 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.

 

3 thoughts on “Chaos 2016 or My First Experience with Questionable Healthcare

  1. That substitute onc you saw needs to change her ways! Trying to make major changes to your treatment? Not talking to you about your coverage??? WTF?!? A physician has to have those conversations with their patients! Has to!! How can you talk to someone about a terminal diagnosis but not feel comfortable about discussing finances?
    that pisses me off, too.

    Like

  2. You still have your whole head – yay! No wonder your voice is still as strong and vibrant as always. Don't go walking and texting – you've got lots to do to keep sub oncs on their toes and keep them from not pissing off feisty people. (The timid demure ones owe you!) Now going to look up your Honey Buns…

    Like

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