update: a all lot of good news

Ok, honestly I don't feel like talking about my cancer. I am quite bored of it, but on the other hand I imagine that if I was on the other side I would want to know what is going on.
So in brief:

I am out of the hospital. Everything went very well, in fact they went better the the expected best case scenario. I have had the operation, the reconstruction and they didn't even have to move any skin. The thing drained to the arm pit (and not behind the ribs), the lymph node came out clean (so we are 99% sure that it is clean we will have final answer on Wednesday).
Now all I have to do is heal and have radiotherapy.
I'm walking around with a little gizmo into which my cuts drain so I look a bit like Frankenstein but apart from this I am all good.

Please do not call

Please everybody do not call.
You can text, you can email but do not call.

No news

I'm going to the doctor this afternoon and will find out the results of the MRI.

Truth is I am bored and tired of talking about me and breast cancer. I would be quite happy to never talk about it again.

New surgeon

So here the thing: I hit the bottom of the bottom of the pit about three nights ago. The surgery is canceled for now. I have changed surgeon and now the plan is to get a MRI tomorrow morning then an operation of the lymph nodes early next week to find out whether or not there is cancer there. Then the decision will be made. The not so good news is that there may be cancer in the other breast too.
But on the plus side I would rather go through a double complete mastectomy with this surgeon than a single one with the previous surgeon.

Ben is here and I feel so grateful for it. I honestly can say that I have never been happier to see somebody ever than the day he landed. It truly was a life saver.

It's a lot harder that one would think

I did well through the week end but last night was awful.
When I first found out that I had cancer I wanted that breast gone, I wanted just gone, but when I had to say "take it off on Tuesday" it was a lot harder. In fact it was impossible.
It is amazingly difficult to face having a part of your body removed and thrown in the garbage. I feel absolutely awful.
I normally wear fairly baggy shirts that would be nearly OK with only one breast, but lately at the insistance of people I work for I have been making an effort and now every single shirt I have here, apart from one, I will not be able to wear anymore.

Last night I dreamt that I was driving too fast on wet roads and in a curve I had a car accident and died. Then I woke up right away knowing that I would only be waking up that way (with 2 breasts) one more day, tomorrow the day of the operation.

I feel absolutely awful. I am at work, but I honestly do not know if I will be able to do the entire day in front of people.

I always assumed that loosing a breast to breast cancer was only difficult for women who really looked beautiful and worked on their apparence, but in reality this is not the case. It is not about not looking sexually appealing it is about looking sick and broken. It is abot not being whole. It is about having a prt of your body aken away. It is about being disfigured. It is about never being totally free to be careless about yor apparence.
It is very hard to explain but I can only say that I am having a very very hard time with it.

At this stage I am still hoping that the second lump isn't cancerous. but I know that the lymph nodes are cancerous. I just know it. Thinking about it I realized that I have been sleeping with my arms above my head for the last few months (which I would have never ever done before)because having my arms down is uncomfortable. I have to admit that I have a very slight uncomfortable feeling in my armpit and I have had it for a few months now, but I can't say that it was that much that I would really paid any attention to it.

Today I am going back to the surgeon and I will find out if the second tumor is cancerous. I also want to ask him a all bunch of questions about the lymph nodes.

Some good news and some bad news

I received the results of the 5mm core biopsy today, and met with the surgeon.

The bad news first (I prefer to end on the good):
- There is a second lump ... but at least it is in the same breast but unfortunately on the other side..we don't know what it is. I had yet another sample (read needle) taken today!!
- One of my lymph node under my arm pit is swollen... but we don't know if it is cancer or if it is just that it is active. We will not know until I get an operation. If it is cancer I may have to have chemo, and if a lot of nodes have to be removed my arm (the right one) may swell to the point of not being usable but percent chances of the am being damage is around 10% only.
-We don't know if the cancer has spraid any further.


The good news:
- The type of tumor I have is the type that reacts well to the drug called Tamoxifen. I already have the prescription for it but one of its side effect is that blot clots may form during the operation so I am not starting on it yet.
- One type of breast cancer has a a lot of something rather (protein I think. It is called Her2 (C-erb-B2) oncoprotein) which result in high chances of relapse, and low chances of beating it...and I don't have it.
- The rate of growth is less than 1%
- the cancer is "ductal" in-situ cancer but is low grade.
- The "ductal"cancer has also invaded the rest of the breast but the invasion is only grade I
- I will have the operation this Tuesday (!!!!! I tell you that was a shock, I had the mammogram on the 5th of May, Tuesday will be the 19th of May!!!! When he said that I was litterally nailed to the chair.)

What operation you ask??
Well if the other lump is not cancer I can have either the full breast off and maybe no radiotherapy (this is if all goes well and if the lymph nodes are OK), or remove the lump and have radiotherapy (again if the lymph nodes are OK).

If the second lump is cancer the breast has to go so no decision to take there, and we are still left with the problem of lymph nodes.

Regardless of what operation I will have I will have a bag put in to drain the breast until no more than 40cc of liquid per day drains off and then I can have it off...this usually takes 7 to 14 days.
The operation regardless of which it is will be a day thing I sleep one night at the hospital than I can leave and go home...which ever home this might be.

So by Tuesday night I will know a little more about the lymph nodes, but I will have to wait for the full results of the analysis on the nodes to know for sure.

I think the surgeon I have is a good guy. I have his office, cell and home number so I can ask any question I want when Iwant. I can schedule appointment in the evening if I need to. He is a good old fuddy daddy and I think for a guy who plays with your breasts it's perfect.

No results

I thought I was going to get the results today, but nothing... and work was so crazy I had no time to call the doc.

You know the worse, the top boss I told I can tell now feels sorry for me. He gives me these baby smiles when/if we make eye contact!!! That's the complete shits!!! I feel like either telling him to stop feeling sorry for me, but I worry that he will just think "Oh, she's so brave" and get way worse; or tell him : "How about I avoid you from now on so you don't have to make eye contact with me?".... I'll say nothing at all. It's a no-win situation.

Here is the thing, when people give you this type of news all they want to hear is: "I am sorry" or "Sorry, I really don't know what to say".
They don't want to hear: "It will be OK", or "don't worry" and they don't want you to feel sorry for them. They don't want your facial expression to be any different than on a normal day. They want you to DISTRACT them from it, not rub their face in it!!!!!!!

I should write the book on how to deal with sick people...but it would be too short: deal with them as if you didn't know!!!! That's it!! That's the big secret.

I'm telling you I'm learning lots, about myself, about people about situations! I'm learning lots!!!

The other boss I told, a really no nonsense super bright woman is great about it. And in fact amazingly enough I've asked her to come with me to the oncologist (sp?) so she can hear what he/she says. It is really hard to be objective and hear what the doctors say. I've been warned about it and it does seem true so far.

It is cold

Last night in Johannesburg it went down to 7 degrees Celsium!!!

Everybody thinks "Africa!!!" but Johannesburg is pretty high and it gets pretty cold at night in winter.

The weird politics of South Africa

Political comments in all parts of the world tend to be weird, unfair and often unfounded, but here in south Africa things get really weird at times.

Zuma, now the president of South Africa, was involved in a scandal about him having unprotected sex with a HIV positive woman. His comment at the time was "but I washed afterwards"...as if it was going to make a difference!!

But now one leader of the opposition, a white woman, made some comment about Zuma being sexist (which he is) and having endangered his wife by having his unprotected sex with an HIv positive woman. The answer came back that Helen Zille (the woman who said this) is a "racist girl" (racist I have not doubt that she is, "girl" I would have to argue that she is well past that point) and she is accused of having her own harem of males in her cabinet because she appointed males only. Zuma then accused her of being sexist and racist for appointing only white males in her cabinet. Now that I can live with this comment a lot better than the "harem" comment. I cannot beleive that she would be dumb enough to indeed only have white males in her cabinet!!!!
The ANC youth League threatened to take militant actions against Helen Zille but then again there has been quite a few threats of violence from the ANC Youth League just about anything at all they don't like, so that is just the thing one would expect.

So here it goes. He is sexist, she is racist and likely sexist too (she couldn't even find one woman)and the ANC Youth League continues to talk about violence against who ever they do not like.... just another day in the political world of South Africa.

If you want to read more here is the BBC's report on it.

the new diet

Not that I was looking for a diet, but if you really want to loose way try stress!!!
Mind you if you are a comfort-eater it may not work. It is working wonders for me. I am melting like butter in the sun. I wonder if I should try to start going to the gym to try to al least put on some muscles.

And I am eating. I am making a real effort to eat lots. But when I am stress I don't feel like putting things in my mouth. This is why in addition to all the food I eat I also drink calory-rich juices because I don't mind drinking. Drinks don't stay in your mouth very long. ..... It is a mouth thing for me.

unreadable blog

I know english is not my first language, but I just re-read my last post and the number of errors in it actually made it impossible to read it.
Wow, I am a lot more stressed than I thought.

Was I unhappy?

A friend asked " were you really unhappy". In brief: yes!
But here the longer version:
I wasn't unhappy but I wasn't happy. All I did was work...or was it all I thought about.
I am a person who is unhappy when not happy.... Does that make sense?
I like being happy. I need to feel happy. I don't do unhappy very well.

Here is something which I think makes it dreadfully obvious: I am sick, we all know this, fine, but here is the crunch: I don't want to go home. How is that?
I just really do not want to go home. I think that says it all.

Tuesday May 12th

I had the 5mm biopsy. When I was saying one 5mm core I was obviously being optimisitic. They took five. All through the same hole but presumably at different angles. I had a couple of injection to put the area to sleep, but by late afternoon it was waking up and this is when I realize how much my breast move. They move when I go down stairs, when I walk fast, they are in the way when I drive. I had never realized before.
The test samples, I asked to see them, just looked like little cream coloured worms. The doctor didn't know if the micro calcification had a crystalline texture or not and had not clue at all whether it would be calcite or aragonite. I thought it would be interesting to find out, but he had no clue. Funnily enough because I am nervous of needles (it is the idea that grosses me out) I explained a all bunch of stuff about drilling horizontal wells to the nurse just as a way to keep my mind off it. She knew what I was doing and why, and she didn't seem to mind about having no clue of what I was talking about. She asked me at the end if I was a geographer!!! *sigh*

Here is some advice: if you ever have a 5mm biopsy don't even try to fall asleep without a really tight sport bras. YOu nedd t make sure that your breast does not move at . Take my word for it, unless you sleep on your back but even that way (I mean with the bras) you'll feel it. Mind you last night the worse part wasn't the pain...which was not that bad but just kept on bringing my mind back to my breast. I couldn't sleep...... I nearly feel like saying "finally". It seemed so weird that I would fall asleep so easily.

Monday May 11th

OK, I did one week end!
Saturday morning was tough...mornings are very hard. I wake up knowing instantly that I am sick.
I've told two friends in South Africa. One at work, a good woman with a good head on her shoulder, and a friend. Saturday morning I went to visit that friend but when I got there another friend was there and I just turned around. That other friends is not a very positive person and right now I cannot deal with her. So I went to do some boring stuff that needs done but then decided "the hell with it. I am not going to avoid people" so I went back but she was gone. I had a really good visit , we ended up going for lunch at a dingy but very good restaurant (called Beirut, great restaurant!) and had a little too much to drink but it was OK. In the evening we caught a movie...just normal week end stuff.

Sunday on the other hand was weird. I slept just about all day. I slept 11 hours the night of Saturday to Sunday, then slept 3 and a half hours during the day...went to bed at 7:00pm to read, but was asleep an hour or so later until 5:20am get up to go to bed.

I'm thinking that sleeping is good because I really beleive that body heals better while you sleep, but on the other hand since my body does not seem to be able to realize that the cancer cells are not good, maybe the cancer cells are the one "healing"...or maybe it is just an emotional thing and I am just "hiding". The bed sure looks like I am hiding. I have 2 duvet-type conforters (but not duvet inside), my sleeping bag (now, that's good duvet) and another throw thing to wrap around myself, about 7 pillows (didn't count), and I am sleeping with 2 T-shirts and a fleece.... I've always been a "nester" but now this is some serious nesting.

Today I am going for the 5mm biopsy, truth is I'm scared! I'm not scared of the results, I'm scared of the 5mm needdle, the invasive procedure of having my breast squeezed in a machine, then an injection, then a 5mm core taken out. I feel like a kid that doesn't want to go to the dentist.

First result

OK, I have the first result from the thin diametre biopsies: it is a malignant tumor... we expected that, so no surprise here.

Next (onMonday) I have to have a 5mm diametre biopsy so they can figure out what type of malignant tumor it is, if they are hormone related etc etc. Then from there we will figure what should be done.
The only thing is that at this stage we will still not know if it has spraid or not. That's what I would like to know. But that would have to be a separate operation, or it will have to be done in the operation to remove the tumor if it is the way it goes.

On the plus side:
- The treatment here is expensive (I am looking at the equivalent of a healthy downpaiement on a house) but ultimately I can afford it and I still don't feel like going home.
- I still have a job which will help with the "I can afford it" part.


The doctor say there is about a 90% chance of me not dying of this! I can't help but wonder how he would know!!! if not the next news but the one after is "it has spraid to the limph nodes" I tell you what this 90% is not going to make any sense anymore. Also, what do I care, percentage make no sense.

More on the plus side: In a way I have to admit that I needed something like this to force me to wake up to the fact that I was not living right. I was unhappy. I wasn't enjoying life. Even the little things right now feel better. Here is a goofy example: I am just out of the grocery store and I bought myself "carrot, pineapple and grapefruit juice" as well as "passion fruit flavoured sparkling water" it felt great to walk around thinking I could have anything I wanted. I noticed that I was even walking in a carefree way. I feel good.... OK I am tired but somehow I feel good. I feel that I am given a chance to appreciate what I have. Now, that's lucky. In a way it is probably better to have to go through this but live the rest of my live appreciating stuff, than living longer and not appreciating as much....and Ijust bought myself a music CD.

I also tought this afternoon: truth is I am lucky... and I can't forget to factor this thing into the equation. I don't know what will happen next but I already know that in the long run it will be a lucky thing and that makes me feel pretty good about it.

Ben is going to try to come and visit here with me....see what I mean about lucky!!! How many people have their best friend hop to another continent to visit?!?!?
I am looking forward to hanging out and doing gooffy guy stuff.

I have a nice place to live. I don't care anymore about the little shitty stuff. I appreciate stuff more. I am forced to be happy!! I may not even die of this thing. If I get out of it with only one breast since it is the right one and I am right handed it will be like the amazone look. Tonight is Friday night and I can sleep in tomorrow. I don't even feel sick so far.

The only thing I really don't wish for is Chemo.... I really hope the treatment recommended is not going to be chemo. I don't want to poison my life.

but apart from this I am good.

May 8th

It isn't unusual for me to wake and not to know where I am but these days I wake up and know instantly that I am sick. I don't mean that I feel it in my body, truth is I feel nothing at all apart from a slight pain from where they took the samples for the biopsy and even that is so so slight. But I wake up and my brain knows instantly. I can't remember my dreams at all (I suspect because I wake up so aware) so I don't know if it is that the brain does not forget and sleeps with it or if it just the way I wake up.

Luckily right now and until tomorrow early morning I am house sitting the house of a friend who has two cats and TV (I have neither) and the evenings are very easy: I pet the cats (one is fortunately very affectionate) and watch mindless TV, then I go to bed and sleep without a problem. But when I wake up in the morning, regardless of what time it is (this morning it was 4:15am) this is it. I am awake for the day.

This morning I thought that I am probably going to have to pack (that's with the cow heads from Mali, the chairs and trays from Ethiopia) and I am probably have to go to Canada. I totally do not feel like going to Canada..not at all! That's kind of weird. I don't know if it is because going there will mean that my "work" will become fighting this thing ...and this promises to be seriously boring, tedious, scary, humiliating, etc etc etc. I honestly don't know why.
I know I don't feel like being stuck in a plane for a long time just sitting there waiting. I always find people hard to take in planes in normal time but right now even just the idea of sitting with a all bunch of people in a plane is really unpleasant. But just the same it seems like the unavoidable reasonable thing to do: go back to Canada where immigration expect me to be and where care for me should be free...that part I am not even sure.

I wonder why I don't want to go to Canada?

Things that annoy me

It annoys me when:

You have to comfort two sniffling nurses you don't even know after they've looked at your mammogram.
The doctor looks at your mammogram and says quietly: "we have to keep a record of that one" while you are standing right next to them. And when you ask why he answers :they are studying and this is a good example" !!!!!

Last time I had cancer the doctor told me I had cancer then left the room for 20 minutes to go and answer a phone call she had been waiting for for a while and I just sat there wondering. And when she came back she said : "I've only lost two patients to this type of cancer...actually no three" ...and she is a young woman so has been practicing for long and she never says three out of how many...out of three???

Is there any doctor out there with ANY bedside manners at all???? I know they do this all day but still.

Also when you don't know what is going on in somebody's life you don't say "you look like you are bored with life, but surely not to the point of jumping."...this is what somebody at work said to me today!! I honestly felt like saying "I don't have to jump" just to embarrasse them but I thought they might not get it anyway.

People!!!!

Timbuktu / Timbouctou

I don't know if I have ever mentioned it but I have been thinking for a while that I would like to go to Timbuktu (that the English spelling; Timbouctou is the french spelling).
Today in the book store I saw a book "the meanings of Timbuktu" it was a collection of paper froma conference on the History of Timbuktu with obviously particular emphasis on hte manscripts which are there and the old universities.

I'd love to go to Timbuctu but mostly I want to go to Mopti.

Now I remember typing the name "Mopti" so I must have blogged about it earlier.

May 7th 2009

Incredible lightening storm this morning. Funny I associate lightening storm with evenings it is kind of weird in the early morning, but either way I like storms.

Generally speaking I am doing amazingly well. I do seem to cry easily. Yesterday my best friend sent me a photo of me holding his sleeping baby son and I cried my eyes out... I don't cry for ads on the TV but I worry that it might be next... At work I am claiming allergy problems and since people here don't view me as the crying type of person they are either buying it or being tactful, either way I don't care. I just don't want to talk about being sick with people at work. I did tell my top top boss about it to sort out the 30 day notice I have to give them. I don't know when I am going to want to leave work so it is a bit difficult. He says that I can leave any time I want, but it isn't entirely his place to say. I just told him because he is the only good guy here and because we dont know each other as "people" so he cannot get personal about it...also all my other bosses (and I am not short of them) in between him and me are out of country right now. It might not be entirely fair to him, but now I have told the company and what ever happens next is not my problem. I asked him not to tell "the women" (I'll have to write somethign about "the women" in the office, it is a pretty amazing thing) and he said he would not tell anybody. But I figure as a top manager he has obligations to the company and at some point something will have to be said because they will need to find somebody to replace me. Again, not my problem. Though I do intend to be as fair as possible to the people here. We are already seriously short staffed, when I go they will have exactly Zero geologist a few months before starting thet new drilling campaign which includes 2 horizontal wells and 5 exploration wells!

Anyway, that's work! I am really going to have to not only learn how to spell things like "tumor" and "diagnosis" and "biopsies" but also I am going to have to learn to let go of work. Right now I still can't decide what to do next and this is why I am continuing with my "regular" life here. It keeps me busy.

What I am thinking right now:
- This thing is likely going to kill me but I am OK with that. I'm not so Ok with living a miserable life to the end. As I see it what matters now is that I'd try to be sort of happy.
- I would like to go to Ethiopia this week end but I need to know whether I am on the "I need to save my money" scenario or the "life has gotten a all lot shorter and I don't need to save for retirement" scenario. Honestly this is where things are right now. This is what I need to know. Does one get to find out?
- As I was thinking that I would be in South Africa for a while I started buying quite a few things here and now I am going to need to ship things "home". Note: "home" has aquired quotation marks...not sure why.
- I don't know what to do with my work permit, visa thing for South Africa.

Here is the thing: I'm OK. I'm lucky: I am not broke, I have choices of where I can go next (though immigration will now be a lot harder), I have a job to keep me busy for a while.

I wonder if I am going through the "denial" stage... I don't think I am. Can you tell from the inside?

You know what is cool about it? Being at work and dealing with somebody who is being really nasty (I have a bit of a problem at work right now) and thinking "wow, i really don't care!" and the guy on the other side can tell you really don't care and he doesn't know why. It is really kind of nice to walk around and not caring about what it is people can do to you. I like that part.

Here you are: having cancer turns you into a super hero...you feel that idiots can't hurt you anymore!!! Nice!