A Diet to Die For! Breast Cancer in Canada.

I just got back from seeing Dr. Chemo and as pleasant as everyone is at the clinic, it’s not an appointment I look forward to.

This is probably my third or fourth “follow-up” with Dr. Chemo. The poor guy … he’s such a mellow doctor and here I come flying in at a million miles an hour with millions of questions and probably look like a neurotic nutcase!

When I first saw him at the end of December, 2008, he gave me information on a treatment cycle called “FEC Chemotherapy” [link opens UK cancer site] — the FEC stands for the 3 types of injectionable drugs used during a cycle — and “cycle” or “regimen” stands for the drugs given every 3 weeks typically over a certain period of time, i.e. Dr. Chemo recommended I do 6 cycles of FEC which lasts approximately 15 weeks.

Confused yet?

I found out today that I do indeed have “node-positive breast cancer” [link opens a PDF document that is very self-explanatory]. This is news to me! Two of my lymph nodes had cancer cells which means that I probably should seriously consider chemotherapy as a preventative measure to hopefully save my life.

Right now, I’m told I have approximately a 75% chance of survival — add chemotherapy for a few short months of my life and my chance for survival jumps to 90%-95% — an easy decision, right? Wrong! I still have lots to think about … and if I’m really sick from chemo, how on earth am I expected to pay my bills? Anyway, it really isn’t an easy decision, and yes, I realize that I’m playing Russian Roulette with my life.

Oh, and I’ve lost a few more pounds  for a total of 15 pounds so far …

I also don’t feel sick, nor do I look sick, and most people who see me say I look healthy … I guess I”m a better actress than I thought

Towards the end of the appointment, I’m sure he notices how squirmy I am, he says that I have another chemotherapy option called “TC chemotherapy” [link opens eChemotherapy site and here's another discussion about it at MayoClinic's web site].  I only need 4 cycles for a total of 9 weeks of treatment. I have to look it up, but it certainly sounds more promising than the prospect of being bald and nauseous for almost 4 months. I know I’d wear my bald proud (no wigs for me!) but man …

I ask Dr. Chemo if he recommends a cold cap or ice cap — I’ve read somewhere that these sometimes can prevent hair loss during chemo — he says it’s an old wive’s tale, so I won’t add any links to information on them. If you’ve used them and can absolutely say it worked for you, feel free to comment.

So I still need to answer my own question: to chemo or not to chemo.

I just got back from seeing Dr. Chemo and as pleasant as everyone is at the clinic, it’s not an appointment I look forward to.

This is probably my third or fourth “follow-up” with Dr. Chemo. The poor guy … he’s such a mellow doctor and here I come flying in at a million miles an hour with millions of questions and probably look like a neurotic nutcase!

When I first saw him at the end of December, 2008, he gave me information on a treatment cycle called “FEC Chemotherapy” [link opens UK cancer site] — the FEC stands for the 3 types of injectionable drugs used during a cycle — and “cycle” or “regimen” stands for the drugs given every 3 weeks typically over a certain period of time, i.e. Dr. Chemo recommended I do 6 cycles of FEC which lasts approximately 15 weeks.

Confused yet?

I found out today that I do indeed have “node-positive breast cancer” [link opens a PDF document that is very self-explanatory] – this is news to me! Two of my lymph nodes had cancer cells which means that I probably should seriously consider chemotherapy as a preventative measure to hopefully save my life.

Right now, I’m told I have approximately a 75% chance of survival — add chemotherapy for a few short months of my life and my chance for survival jumps to 90%-95% — an easy decision, right? Wrong! I still have lots to think about … and if I’m really sick from chemo, how on earth am I expected to pay my bills? Anyway, it really isn’t an easy decision, and yes, I realize that I’m playing Russian Roulette with my life.

Oh, and I’ve lost a few more pounds  for a total of 15 pounds so far …

Towards the end of the appointment, I’m sure he notices how squirmy I am, he says that I have another chemotherapy option called “TC chemotherapy” [link opens eChemotherapy site and here's another discussion about it at MayoClinic's web site].  I only need 4 cycles for a total of 9 weeks of treatment. I have to look it up, but it certainly sounds more promising than the prospect of being bald and nauseous for almost 4 months. I know I’d wear my bald proud (no wigs for me!) but man …

I ask Dr. Chemo if he recommends a cold cap or ice cap — I’ve read somewhere that these sometimes can prevent hair loss during chemo — he says it’s an old wive’s tale, so I won’t add any links to information on them. If you’ve used them and can absolutely say it worked for you, feel free to comment.

So I still need to answer my own question: to chemo or not to chemo.

Update: April 3, 2009

I’m quite positive I will not do the chemo — Dr. Chemo gives me an additional 3 months to think about it, or talk with a social worker or psychologist. He’s given me an appointment for April 27th and since I still have not heard from a therapist, it’s likely I will cancel the appointment.

I know. They are actually called extensions (why the name change for the same thing, I don’t know). So what have weaves and extensions got to do with breast cancer or Canada’s health care sytem?

It’s all fake baby [check out Alex O'Neal's video called Fake -- if you dig Morris Day, Jam & Lewis and Prince's sound from back in the day,  you'll like this one, too].   That’s what weaves and our health care system have in common. We’re just walking OHIP cards to hospitals and not people.

Since I’ve got nothing but time on my hands, I’ve been watching a lot of television — I was on narcotics the first few weeks of recovery and found myself unable to retain much information so didn’t read much more than the local newspapers. As fun as that sounds, it really wasn’t much fun.

The segue about weaves being that one evening while watching television, a commercial, a commercial that I’ve seen 100s of times before, about some kind of shampoo, had these young women, all with absolutely gorgeous and flowing long hair. Or did they have natural long hair? Hmmm. I’m sure I spotted a line going across one woman’s hair that reminded me of a weave … can’t short hair be shiny and sexy?

I don’t know how many people from CCAC, Bayshore (the nursing company), Red Cross and whoever else walked through my front door and said to me in such a caring voice that they would be my advocate and ensure I got all the help I needed. Utter nonsense! The truth is that they only care about their own skin and making sure they have a job tomorrow and the next day — that’s it.

Here’s an example of what happened to me.

My incision always feels wet, but I’m still not mobile enough to really do much of an inspection. I called Bayshore on Wednesday (February 25th) to ask if they could send someone to see me — the nurse on Monday told me that the nursing supervisor now has me on 2 visits a week: Tuesdays and Fridays. She said that since she’s there on Monday, I won’t see anyone until Friday. I knew I wouldn’t be able to wait two days to see anyone and why I called them.

The nurse who came Wednesday afternoon said I need to get to a doctor immediately — my incision is oozing profusely with a pus-like liquid substance. Her instructions were to also get a prescription for dressing changes and thinks I should be on daily visits.

Dr. Ewan (the surgeon) wasn’t available, but I was able to get an appointment with Dr. Ciara the next day and when I arrived, I didn’t have to wait at all — the staff ushered me into an examination room immediately.

Dr. Ciara agreed that I needed daily visits from a nurse, wrote a prescription and instructed me to call Bayshore & CCAC  immediately after getting home (yes, everyone used the word immediately a lot over a 24 hour period). She also said that each organization has a different protocol and if they need her to fax it to them, just have Bayshore call her and she’ll oblige.

I called Bayshore when I got home, spoke to Nadia, and it was total confusion from that point forward. Why didn’t the doctor fax the prescription? I did what the Bayshore nurse told me to do; go to a doctor and get a prescription for dressing changes. I was bombarded with comments about my family doctor and other ridiculous comments.

STOP!

I did what the Bayshore nurse told me to do and the doctor did what I asked. It’s that simple.

This is urgent and does it really matter that I have the prescription in my hand and am making the call myself?

Nadia asks me if I can fax it and I tell her that I can make a photocopy of it and give it to the nurse when she comes back on Friday.

The nurse on Friday calls Bayshore (her boss) from my home and lets Nadia know that she has the prescription in her hand and will be faxing it to her when she returns home.

I can tell that Nadia is again confused about why I have the prescription and not them (Nadia appears to have completely forgotten the discussion I had with her less than 24 hours ago), and the nurse keeps saying “I have the prescription in my hand and am looking at it”. Nadia apparently transfers the call to the nursing supervisor and the nurse keeps repeating herself that she has the presciption — the nurse must have been on the phone with these numpties for about 10-15 minutes. It reminded me of an SNL skit.

After getting off the phone, the nurse tells me that they didn’t receive these new instructions. I was furious! I said I had spoken to Nadia directly the day before about the prescription. The nurse is in quite a tizzy and is now concerned over her own job — she attempts to coach me about what to say regarding why she didn’t remove the last JP drain. After a few minutes, I tell her it’s my decision not to have it removed today — I want to take a Tylenol about an hour before a nurse comes so I’m not in so much pain when it is removed.

She asks me if I’m also mad at her, and I tell her that I’m angry at the entire health care system, and you are part of it.  I really don’t feel like being politcally correct — hell, I’m the patient for God’s sake in a forsaken land known as Ontario health care.

Yes, this conversation about the JP drain is occurring simultaneously with the prescription. Unbelievable that the nurse is more concerned about her job than my health!

After the doctor’s visit on Thursday afternoon, I also call my CCAC Case Manager and left  a voicemail about the new order from my doctor.

Someone whom I’ve never spoken to before from CCAC calls on Friday and says she didn’t know about the prescription, but that she authorized Bayshore to see me daily for 2 weeks, and then I’ll be re-assessed.

Bayshore takes it upon themselves to modify CCAC’s authorization of 2 weeks to 1 week.

The nursing supervisor will be my nurse today and my guess is she wants to see the oozing mess herself.

I can hear Seth and Amy (from SNL) saying “Really?”

———– UPDATED: March 4, 2009 —————-

After seeing Dr. Chemo yesterday afternoon, a Bayshore nurse comes to see me about 5:30 or 6:00 p.m. and as soon as she walks in the door notifies me that her supervisor wants to re-assess me. They want to change my nursing visits from daily (as prescribed by my doctor no less) to every other day.

Can you hear my faint screams yet?

I’m exasperated at this point.

I told the nurse that if I’m still oozing and the bandages soaked through in a 24 hour period, why on earth would Bayshore take it upon themselves to modify doctor’s orders?

She said that she would put in her report that my dressings still require daily changes.

Why would Bayshore Home Health attempt to modify doctor’s orders on such regular intervals? It seems every other day, they are trying to reduce my visits — and at one time, even discharged me 11 days after surgery — when I had to call them after 5 days of not seeing anyone to get them to come back.

I thought to myself that if I was an 80 year old senior citizen, I would be dead.

I hope someone from Ministry of Health (Ontario) reads this …