Wednesday, January 24, 2007

Buffalo revisited

Finally, I'm writing. Can't say that I really want to but I have to before life slips by undocumented as I can't trust my terrible memory to store the details. I have a terrible memory and those who know me would probably say that's an understatement. I constantly forget details of friends' lives making me look like a bad listener or that I didn't care. It's not that at all, god, I can't even remember what happened to myself! It's a total information coding problem, I'm clearly brain-damaged so people just have to learn to love me for it and I have learn to love myself despite this brain blip!

Don't ever ask me to review a movie for you. I can't. I can remember whether I like it or not but I can only remember the story line for a couple days. Same with books. But I enjoy them nonetheless as momentary entertainment. My mom is the exact same way so whatever this problem is, it's herditary and it gets worse with age. I started noticing my memory was going down hill at around 20 and in the last 10 years it's gotten to the point that people comment on it. Oops, how's that for a free-flowing rambling tangent? I really just seem to write what I'm thinking instead of thinking about what I'm writing. I guess that's the easy thing to do and I like easy. Oops there I go again...

It hurts physically to sit at the computer. It hurts more to type. I have to get my meds readjusted.

Man, this month has been physically and emotionally exhausting. I'm past the days of sleeping 18-20 hours a day and only eating grapes and walnuts. There was a couple weeks there that if I wasn't in bed, I was on the couch and I was too tired to fix myself drinks or meals, not that I felt like eating anything. Think of the one food that repulses you so much you can't even imagine taking a bite of it. That's how I've been with ALL foods, and I loooove food! The only things I could stand to eat were grapes, walnuts, english muffins with margarine and honey, popsicles, mandarine oranges, yogurt, and sometimes cheerios with banana and soy milk. It was a gradual progression to even get to that point though. In the beginning it was just a few grapes and a couple walnuts. Literally, that's all I could bare to eat in a day.

I'm proud to say that I've come a long way since even last week and today I had my cheerios and banana for brekkie, an Amy's bean burrito for lunch, and some left over stir-fry on rice for dinner. I'm not enjoying my food, but at least I can tolerate it. I'm sleeping 11hrs/night but not taking naps sp that's good. I'm tired but can go out if I have to for a bit.

No one can give me a reason why I've been feeling so shitty. The liver ultrasound was negative, I'm not pregnant, blood work doesn't show anything besides the fact that I'm mildly anaemic but so mildly it wouln't account for such severe fatigue. Some say it could be from being off the steroids but others think that a month after the fact is far too late for me to still be having withdrawal symptoms. Other theories are depression and stress. I tend to think it is 100% steroid related as is started right after I stopped the steroids (Nov/Dec were wonderful months filled with steroid enduced uber energy and euphoria), is slowly getting better and happened before I got the stressful news that I am finally about to write about.

At the beggining of January I had a CT scan. The scan showed that my organs are clear (yay!) but that the disease has spread a lot in all the areas that have previously been affected and has also taken up shop in my brachial plexus. Yup, the same area that Toronto said had disease back in September but then London said didn't so I didn't do IL-2. Another scan in November confirmed that there was still no disease in the BP even though the loss of mobility in my arm and hand (radial nerve damage) suggested there might be. So, now it's official, it is there. It can't be removed, and there is a big tumour in my axilla that can't be removed. I also have TONS of other little areas of disease in that whole region. I can see and/or feel some of the tumours and others are there, just too small yet to see or feel.

My right breast has 4 tumours that I can feel and they are getting so big that that they are starting to blend together so it almost feels like 3/4 of my breast is a rock. I've got others on my back shoulder and upper arm that are walnut sized and then at least 10 other pea size ones I can feel that by this time next month will be walnut sized. They are popping up like crazy and will continue to do so unless something stops it. Surgery can't stop this.

So, it's off to Buffalo for IL-2 (paid for by the Ontario gov't). I've explained in a previous post why I have to go to Buffalo so I won't get into that. It'll be sometime next month before that treatment starts, I'm guessing towards the end of the month but it's hard to say.

I wish I had the energy to write about what a complete bitch my medical onc in London is but it would take me forever to recount my last two meetings with her. I really want to like her because I'm caught between a rock and hard place in that she is the only onc in the city that deals with mel patients and I don't want to be travelling back and forth between home and some other city for my follow-up care.

I won't have to see her very much as I'll be treated in Buffalo but I presume I'll be seeing her for routine follow-up between treatments. I don't doubt that she can do that, it's just that she is condescending, lying, manipulative and delusional and I know that everything she says has to be taken with a grain of salt and I'll have to verify her "information" on my own. Man, I wish I could write out the things she has said to me... things so off-base, delusional and/or rude that she has had me in tears and I mean big ugly sobbing tears because she was just so wrong in certain things and wouldn't hear otherwise. Such a power-tripper. It's her tone of voice, it's the way she words things. It's the stare. It's the whatever-I'm-saying-is-important-but-whatever-you-say-I'll-dismiss attitude. Fuck her.

My second meeting with her this month was basically a mediation session with the social worker to get me the information I didn't get in our last meeting while she was persuing her own agenda and yapping. The social worker and I have decided that she (the social worker) will be attending all my future appointments with the medical onc so I can have a witness. The main problem is that the doctor will tell me something then later tell me she didn't say that, or tell me I told her something that I didn't. I feel like I'm in the twilight zone. Luckily Derek and my mom were in the first meeting so I had witnesses there to assure me it wasn't me that was crazy and they agree that she is a major piece of work who specializes in de-humanizing people. Today, the onc was on her best behaviour as her colleague was present but she still flip-flopped on what she said and managed to avoid answering basic questions such as "what are the different options for me at this point, and what is your recommendation?" until the question was re-phrased 3 times. Gah! Anyway, in the future, I have my back-up so it'll be alright. I don't have to like her. It would be soooo nice and I deserve to have better care but travelling for it doesn't make sense when the options will be the same. If I need to go onto another treatment in the future then I will seek a second opinion for sure but if the treatment is offered in London then I'll have to deal with her.

Please, I don't need anyone from the U.S. telling me to go to M.D. Anderson or anywhere else. There is no way on earth I could afford to. Imagine if you had to pay 100% out of pocket for every visit, every test, every treatment and the air travel. Give me a break. The only thing the U.S. can offer that we don't have is a gazillion clinical trials (and lets face it, getting a good response out of clinical trial is like winning the lottery), routine PET scans (controversial anyway) and GAMMA knife for brain mets (in general only buys patients a few weeks/months anyway...yes, there are always exceptions!). So, for that it ain't worth going into debt $100,000 when the end result is almost always the same at this stage. I don't mean to be a pessimist and I believe there is always hope but sometimes you have to take the reality of the statistics into consideration and consider the financial devastation you could be leaving a loved one with.

Wow, this has been a depressing entry. I'm gonna change it up a bit next time and do the entry that I really wanted to do, not the one I had to do just for updating sake. Since it's the new year and I think I have all my photos from last year on the computer, I wanted to upload pics from my favourite adventures of 2006.

8 Comments:

At 9:40 PM, Blogger King (Kathie) said...

Sarah,

Wow!! I'm so sorry that your pain is out of control and all of your recent physical findings. I pray that you have a complete response to IL-2.

That has to be awful to be going to an oncologist that you can't stand. You deserve better.

I wish I could give you some words of wisdom. I agree with so much of what you say about the care/facilities in the U.S. Hey, there are only 2 FDA approved drugs for melanoma -- I'm not impressed.

I'm pretty overwhelmed by your entry and don't really know how to respond right now.

Never give up, never give in. There is always hope. I hate this disease.

Stay Strong

King (Kathie)
Stage IV Liver mets 7/05

 
At 6:15 AM, Anonymous Bill said...

Sarah,

I too am taken back by this new posting. And I agree with Kathie that you deserve much better. Prayers and blessing to you and a positive IL-2 response.

May your Angels always walk with you.

 
At 10:22 AM, Blogger mrbunsrocks said...

Okay, so blogger erased my original comment.

Anyway, I was just saying that I wish you didn't have to deal with such an evil, evil wench through all the other things you have to think about right now.

I really wish there was something more that anyone could do.

 
At 10:43 AM, Blogger Carver said...

Hi Sarah,

Well hell! That truly sucks that your pain has been so bad and I hope against hope it will be better controlled soon. I also hope you will respond well to IL 2 or rather that it will knock those nasty mel tumors right out of you. You are very much in my thoughts. As ever, Carver

 
At 3:06 AM, Anonymous JanetteT said...

Not sure what to say, because the only thing that I can offer are a few words that will hopefully give some comfort even if for a second. I wish I could do more, I wish I could relieve you of all this pain, physically and emotionally. I guess we all do.Needless to say, you do not deserve any of this, it is not fair. (this Onc. is the last thing you need !!) Really. I really hope this works with the IL-2.I really hope, it has got to.
Just had to say somthing, even if it sounds like an echo from so many others, and maybe a little dumb too.I just wanted to let you know that I am also listening and do give a poop about ya and am thinking of ya.

 
At 1:58 PM, Anonymous Anonymous said...

ok. You don't know me. I am just someone who reads your blog, and is lucky enough to have only stage I melanoma. Your story sucks. It does. Your doctor should be fired. I read your latest post last night, and I spent all night thinking about your situation. And I know that it is NONE of my business. And you can tell me so. And I know you said don't even mention coming to the US for treatment.

But I made a phone call to a trial coordinator in New York. (I KNOW, I KNOW... it's NOT my place!) IF you decided you wanted to try a trial, the coordinator said she would help you find one, and said it might be possible for all of your testing and scans to be done locally (in Canada)and sent in, so maybe your insurance would cover it. And of course, the trial medicine is free. You would have to arrange travel from time to time.

I thought I remembered reading somewhere that those involved at clinical trials at the NIH had their airfare and hotels paid for. Something worth checking into, IF your IL-2 isn't effective.

I just hate to think of anyone feeling like they are backed into a corner with nowhere to turn.

Good luck with your IL-2. I hope it kicks mels arse. And please forgive me sticking my nose into your business, even after you made it crystal clear that you wanted none of it.... I apologize.

Oh, by the way, the coordinator's name is Victoria. Her phone number is 1(718)920-9019. She said she would be happy to talk with you about different options and trials if you wanted. She does not have your name. She just knows you are canadian.

Warmly
an anonymous american friend

 
At 9:02 PM, Blogger Dr. K said...

Sarah,

I've only discovered your blog today but I've already read it from beginning to your latest post. It's powerful stuff and I look forward to reading more entries for many, many, many years to come.

 
At 10:37 PM, Blogger Miss Melanoma said...

Sarah,
I'm thinkin of you every day, mama, and if good vibes can do anything, then I'm gonna help get you through this.

I love ya, girlie. Hang in there.

-L

 

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