Tuesday, October 24, 2006

I complain too much

Thanks for standing by.

Ultrasound today. Confirmed tooma. They missed one! Right in the area the gutted. Good lord. Scheduled for another surgery on Nov. 3rd. That's 4 surgeries in exactly 1 month. Big oops. Who do I trust? Why is everyone so incompetent? I feel like I just complain and complain, but it's not me right? Everyone else seems to be fucking up.

Here's the list of fuck-ups:

1996: Mole from my back removed and biopsied. Removed because I didn't like it, esthetically. Pathology report said it was an atypical spitz nevus, which is a benign kind of mole. As you can see from the article I linked to "atypical spitz nevus" above, this kind of benign mole is often actually melanoma, misdiagnosed. I had no idea at the time (I was 18) and I went on merrily with my life for 9 years before I found that egg size lump in my armpit in Sept 2004. Which by the way was the size of a softball by the time it was surgically removed a month later. I do feel lucky I got 9 years till my recurrence though... this is unusual as most people will recur within 2 years.

Geez, how that would have changed my life if I recurred at 20. Because in those 9 years I got a degree, I experienced living in Toronto for 5 years, I met some amazing people and made some good friends, I met Derek, I backpacked in Mexico (twice) and Guatemala with Derek, I got a decent job with the Ontario government for 3 years which led to a better job/career with the Ontario government which I just began as I talked about in a previous post. I grew up. But I digress...

2004: Adjuvant therapy (treatment after surgery) Interferon. I was not told that I had any other option than this drug (many doctors offer the option of doing nothing as Interferon is a controversial treatment option).

I should have been told of the controversy over Interferon. I should have been told that I would feel like crap for a year in exchange for an average recurrence free time of 12 months in people who are destined to recur. I was high risk for recurrence, but many people who are high risk don't recur whether or not they do this treatment. If you are going to recur, you will at some point but no one can predict who will and who won't. This I learned on my own, well into my treatment.

Apparently the latest study shows that Interferon helps approximately 9% of patients stay recurrence free. That was not the information available at the time I started. Anyway, knowing that now, I would have chosen Interferon anyway for that 9% chance. But, apparently I wasn't one of those 9% anyway. Cancer Care Ontario has a protocol for administering this drug and it states that oncs should talk to their patients about the pros and cons of this drug so they can decide for themselves if it is something they want to do. I was never given that option.

2004: Maybe I wasn't one of those 9% because the whole 10 months I was injecting myself with Interferon, I was on the wrong dose! I was on a lower dose than I should have been and I only found out 8 months into the treatment because I found on the internet the formula they use to calculate the dosage and realized mine was wrong!

By that time, I had switched medical oncologists. He said he has no idea why my previous onc would have prescribed me a lower dose but since I was almost done the treatment and there was no research/study to suggest that a lower dose wouldn't work, that I might as well just continue with the lower dose. You would think that the pharmacist or my new onc would have realized my dose was wrong. And if my old onc did it on purpose (which he did because I questioned him about it via email at his new job in Miami and his rationale was stupid and senseless!) he should have told me he wasn't giving me the full dose, at which point I would have questioned it. A patient should be informed of these decisions, dontcha think?

Dec 2004: I was in the chemo suite, hooked up to my i.v. drip of high-dose Interferon (I did this every weekday for a month before I started the 10 months of self injection at home) but waiting for my nurse to start the drip. Another nurse (luckily) walked by, looked at the bag hooked up to my i.v. , looked at me, and whispered to my nurse that that wasn't my name on the bag and rolled her eyes at her. My nurse swiftly unhooked that bag and replaced it with a bag that had my name on it. I was this close (holding thumb and index finger an inch apart) to being administered someone else's chemo drug! How does that happen?!!!!! Very frightening, who knows what would have happened to me.

That I believe was the last fuck-up before the shenanigans of this past summer and fall started. When you tally it all up, it seems rather unbelievable. It gets frustrating, especially when it's different doctors and nurses. I am just feeling like I can't trust anything anyone says or does, when I always held doctors on a pedestal. Nope, they are just human, and they make mistakes like everyone else. But, the difference is when they make mistakes, they are dealing with peoples' lives.

But, alas, I can't complain too much, because at least they are trying and at least I am getting some care. Millions of people around the world don't get any care for their diseases, yet my government is spending thousands and thousands of dollars on me, on a disease that they know is incurable at this point... but they try anyway! They try to buy time for me until there is a cure. Literally, they are buying time. Thank you Canadian tax payers!!!!

My Interferon alone cost about $30,000 Canadian, if I ever do end up going to Buffalo for IL-2, this treatment costs the government $250,000 for only a 5% chance it will give me a long remission. Not to mention the hundreds of free doctors visits, scans, ultrasounds, blood tests etc etc etc. For this, I have to feel blessed. People die everyday in pain and agony because there are no treatments like mine, there are no pain medications, and if there are they certainly can't afford them in third world countries. I can't forget this. When I complain, I must remember how really lucky I am. Gosh, for so many reasons, I really am very very lucky. And most of you reading this are too. Don't forget that and don't take what you have for granted.

4 Comments:

At 6:51 PM, Blogger Carver said...

HI Sarah,

Well hell! I am pissed and this isn't even happening to me. I also know what you are saying. All of us living with electricity and computer access and medical care are lucky, even when our doctors screw up. That said, it seems like you've had more than your share of screw ups and I want you to strart getting some breaks. I love the cartoon and as an advocate of universal health care, I agree with your appreciation for what you have in Canada. If I didn't have health insurance through my job, I'd be sunk. I also think screw ups happen everywhere but I'm wishing some better luck for you, like yesterday. You are such a trooper and I know it's not easy to deal with all you deal with and remain so philisophical about it. I hope this next surgery will be the end of your need for surgery and that you can then proceed to a very long dance with NED. As ever, Carver

 
At 12:42 AM, Anonymous Stephanie said...

Hello Sarah...
You are a spirited, strong and beautiful woman! Keep up the fight! Thank you for sharing your very personal story with the world. My Dad was diagnosed with malignant melanoma last year at Stage 4. He had a lump in his neck which turned out to be the tumor in his lymph nodes. We all feared the worst and thought the cancer was everywhere in his body. After having the tumor removed in Seattle and cat scans and PET scans, amazingly there were no signs of cancer anywhere else in his body! That was June 2005. His onc told him Interferon only helps 9% of patients and would not help my Dad. So, it's been basically cat scans every 3-4 months and keeping our fingers crossed. There's not a day that goes by that our family doesn't think about it though. My thoughts are with you as you go through these battles and "f-ups" from the doctors!
Stephanie

 
At 3:51 AM, Anonymous Janette from Holland said...

Just checking in to see how you are doing. I hear your strength from here!!!
I have frquently doubted myself about recieving 'the best' treatment here in Holland..I mean it's so small, and waaay over here, and even the movies are like three years behind, as is most...I am surprised and yet not, about everything that has happened to you there. It also makes me so angry.Very pissed. Good to see that you are not taking shit from anyone, and that you know that you deserve the best care available. Must fight for it.And may I say this on your behalf and mine (and everyone else's for that matter)..Fuckin Canada and SHIT DOCTORS and UP YOURS MM!!!!!
(Ahhh..that felt slightly better.) I agree with Carver, it's about time you got some breaks, you deserve it, some big long ones. Can't wait until next week when you will be NED. You'll be in my thoughts.

 
At 10:07 PM, Blogger Heat said...

I stumbled onto your blog by accident. I was diagnosed with melanoma in 2002. I was stage 2 on the verge of stage 3. The dr.'s removed a big chunk of the back of my arm and a lymph node, then I started the interferon even though the tests on the node were negative. I was in the care of a really "aggressive" oncologist who made it seem that I really had no choice concerning my treatment. Unfortunately in the US the drug companies and oncologists are in bed together and make a fortune together. Long story short, I quit after 7 months of injecting myself 3 times a week. I was anemic by that time and completely worn out. I think the only thing that really kept me going was that I didn't alter the way I lived my daily life. I kept surveying and stuck to the same routine as much as possible. That would be the best advise I could offer anyone that is struggling through the interferon treatment. I wouldn't do it again knowing what I know now. I hope you pull through you latest battle and we are reading blog entries 9 years from now.

 

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