Monthly Archives: November 2007

So…what’s the news?

Alright alright. I’ve kept you waiting long enough. I think it is now okay to put it out to my cyber-supporters here…last week Del took me to one of those great English historical estates (Chatsworth) which I love so much. And…he popped the question!

I was completely not expecting it (at least not just now), so my immediate reaction was a stern-ish, “Are you joking?” But of course he said no! and so I said yes! 🙂

So that’s why I’ve been running around doing other things rather than writing. Calling family and friends. I finally had to send an email to some because the days were ticking by to where people would begin to hear through others anyway and start to think why has it taken her so long to tell me? And my retelling of the story was getting less and less interesting (as my options for altering the telling had been well used up). We went to Paris over the weekend to see friends and enjoy the luxury of having such a romantic place just an hour away on the train, the trip being a lovely engagement gift from my future M and FIL.

I have been thinking more about combining future posts to the other blog. It just feels right to begin to lay this aside as an almost daily discussion and to pick up the old pre-cancer and new post-cancer threads of life. Certainly I’m starting a new chapter. So I think I should, well, actually do that.

But not quite yet today. I shall sit on it a little more. For now I’m going to go look at some wedding mags and giggle! Whoopee!

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Funny Thing about (Potentiolly) Dying

Aside from a few particular moments of sharp fear (like when they thought I had cancer on my spine), I never seriously though about it all that way. I mean, you know the possibilities of what you’re dealing with. You’re scared poopless. Obviously you know the implications. But it’s not the same as thinking you are going to die. I did not believe the latter – at all. You just go through your days doing what you have to do so that it doesn’t “get (any further) out of hand”, so to speak. So imagine what a conversation such as this was like…

Friend: So what’s the latest news?

Me: Well, Dr. Awesome said that there are no signs of cancer anywhere and that he feels strongly that I “don’t need to worry about the future.” He feels optimistic that the odds are against a recurrence for me. Of course…that’s no guarantee, but it sure is nice to hear.

Friend: [lets out a deep breath] That’s great! Oh, I’m so glad. Because, you know, this whole time I was thinking thinking you were a goner.

Uh….wow. What do you say to that?! I’m not offended. I’m…I’m…I’m… just struck. Speechless. by this. Because, well, excuse me but who said anything about dying?! I know I didn’t! As far as I’m concerned, that was not in the deck of cards I was playing with. It’s weird to realize that others might have been thinking differently the whole time. Planning for a different outcome than you. One that was so bad they couldn’t admit to it. Creepy.

A fellow friend in treatment and I had a long conversation about this (laughing, as only a fellow friend in treatment could do) and she had similar experiences. After hearing the doctor say that her scans came back clear, someone close to her exhibited disbelief, saying, “You’re going to be fine? Really? Well…I never thought of that. I thought cancer was cancer. You know…”.

I guess it’s one of those things where you have to remind yourself of their intentions. They’re not trying to wish you unwell, be insensitive or be dramatic. They just don’t know. As much as I wanted my loved ones to really understand what I was going through, I suppose in the end, hopefully, they never really will.

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To Clear Something up for you

Ok. Generally I am a bit quiet this week. I’ll be back in the swing next week, but there was something that I just couldn’t let pass.

You know how you can see on your stats page the things that people typed into a search engines to come across your blog? Well, the other day, someone found my blog by typing in, “Can you get breast cancer from someone punching you in the boob?”

I just can’t let some poor frightened soul out there be unsure! So to answer her/him: No. Sleep easy. You do not get breast cancer from someone “punching you in the boob”.

It made me giggle. But it also alarmed me. We’ve still got a lot of work to do, ladies (and gentlemen), getting people informed! Here’s hoping that’s one more issue down!

So, Scared Person, punch away! (you know, if you like that sort of thing…)

Update: I am now noticing that I get that search a lot. Apparently there is a bigger myth circulating out there than I realized!

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My Files

My “family doctor” called me the other day and said that certain parties from the US had contacted her for my medical records (for some bureaucratic stuff). Regardless of who it was, she is not allowed to release them to anyone. Therefore, she made a copy of all my records and arranged for me to pick them up to mail them out myself.

It was a manila envelope with about 50 pages in it. Although of course I know what’s in there in general, I was indeed curious. The files are in the from of letters to my GP from my various specialists, giving her the latest details on my treatment and progress. All the files are in Dutch, and complicated medical terms are certainly not one of my strong suits in the language, but it didn’t stop me from browsing.

I found it weird to read the files. As if they could have been talking about someone else. But they weren’t. I was particularly struck by the first letter. It was the letter written from the mammographist to my GP from my original examination in ’05. And just as I had always suspected, there is was in black and white: “Patient has some calcifications in the left breast. These appear not to be malignant, but the patient is to be examined again in 6 months for monitoring this.” You will remember that I found my own lump, 8 months later, having never had a word mentioned about these spots or another mammo. You all know that part, but there was something about seeing it in black and white that made me a little angry. And mesmerized – I read through the rest of the pages standing in the middle of the room. Del kept suggesting that I have a seat, but I stood there on the spot, absorbed in the story they presented as if the last page would tell the ultimate end of the (my) story.

I don’t have a tidy conclusion for the sharing of these feelings. It was just…strange. Personal enough to make my heart thud, and impersonally distant at the same time. Strange to see that I’ve done all that. Difficult to imagine all the women that are having those very things written about them today as they go through it. Eager to imagine them also being finished, seeing it only over their shoulder.

I have something fun to tell you later this week, but I might not have time to put together a decent post for a few days. For now, before I go, you might be interested in an article I read today, about a (seeming) cancer breakthrough. “Scientists discover how our bodies can keep cancer dormant for years” is pretty exciting stuff.

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Filed under breast cancer, cancer news, this time THIS year

Bling!

I’m feeling pretty quiet today. Spent the weekend shivering at my bf’s family house in England (yup, we’re back here, again) where it actually snowed last night, leaving a thick covering on the ground that had completely melted by noon today in the sun and rain. (England – one of the few places you can get sunshine and pouring rain at the same time!) The weather made for several rainbows that we chased all over the Midlands today.

blog bling

I do want to thank WhyMommy for my first blog award! She has given it for this post, and I am very complimented that it touched her. Thanks, WhyMommy! You’ve made my day.

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[drumroll…] Ta- da!

First, let me lower your expectations a bit. I am thrilled with the cut – it’s headed right where I want it to. I am also very happy with the color, but (particularly considering it was lighter before chemo anyway) it’s not the all-out shock change I had intended.

I know, I know. I admit that I too am a little disappointed. But it was completely my choice. It would’ve been fun, but here’s the thing: when I went for my color consult, the concensus was that it probably wouldn’t come out like I wanted it to. Helena was very comfortable that I had waited long enough in terms of exposure to chemicals. But how the hair would react was another issue, not only because it is “new” hair. I talked it over with her and one of her colleagues who offered a few things to think about.

1 – All over platinum blond takes an incredible amount of upkeep. Her colleague said my “profile” has a “very, very low” expectation of maintaining it over the long run. Insead of being insulted at their quick judgement, I thought it was freaky how dead on they were about me. I can’t even use OTC teeth whiteners because I can’t be bothered to smear the stuff on my teeth for more than 2 nights in a row. Heck – I can’t even be bothered to remove the nail polish from my toes after the first painting of the summer season (cause there is inevitably only one initial painting before I tire of the idea, until the next summer when there’s one tiny red fleck that hasn’t grown off yet)! But I had thought of that. “Oh, that’s why I’m only going to do it for about 4 months or so. Then I’ll go dark again and be done with it.”

Except, what I didn’t understand is that it doesn’t work like that. I would still have to keep coloring my hair dark until it has all grown out, since the dye would fade from the (now white) hair underneath. Hmmm…not a deal-breaker, but it was something to consider.new hair 1

2 – All that would be very bad on my new hair. I knew this, but sort of thought that if you do it at the salon they can keep it healthy. Certainly they can help, but apparently it’s not quite that easy. I admit, I wasn’t keen on the idea of completely frying my soft, new healthy hair.

3 – This was the main thing. They said the color would likely not be quite what I envisioned. “Going from a color as dark as yours has grown in, it won’t turn out like mine and it won’ t turn out like hers.” (Of course, both stylists had quite blonde hair themselves.) “It’s likely to go yellowy toned. That’s the danger.” This prediction rang a bell of recognition, as I used to be quite blonde and when I look back at photos I always find the color to have been so. And then – as if the Fates themselves cared about the color of my hair – I came across of a recent photo of Kylie Minogue with her hair dyed platinum. There it was in the magazine in front of me. And – in my opinion – it looked horrible and…yellowish. (These photos are all copyrighted, but you can google them. She was at the Q Awards.) Anyhow, I pointed out the photos and Helena said, “Yes. That’s exactly what we’re shy of.”new hair 2

So basically, I decided to compromise on lots of highlights, three different tones, one of them would be the “bleach”. This would be less harsh and easier to change when the time came. I’m quite happy with the results, though I think I will go “chunkier” next time. As a post script, the stylist said she was more than happy with my hair’s reaction and if I do want to go with more of the bleach next time she feels more brave about it. I’ll cross that bridge when I get to it!

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What We’ve Learned about the Hair

I’m posting all the helpful info that’s come in about this issue, as many people knew even less than I did. I suppose the fact that I couldn’t find much online about it was also pretty clear evidence that the topic could use some discussion. Anyhoo…

To go over the basis of the question, there are two reasons why dying one’s hair after chemo is an issue. The first – and I consider to be most important by far – was surprisingly little mentioned by anyone offering advice. That is, it is recommended that the body be allowed a “detox” time. This is the only reason I knew about, and I was all to happy to stay away from chemicals for a good while! But I wasn’t sure how long was considered wise.

The second reason – which I hadn’t thought about but am really glad to know – is that such “virgin” hair is likely to take differently to chemical processes than normal. I hear it is quite likely that my hair color will turn out a little “off” and that you want someone who really knows what they are doing so that, at worst, it can be quickly fixed if the first atempt goes wonky.

What did I find out? That the standard line doctors will give you is “wait at least six months” if they don’t have a personal opinion on the issue. Of the fine women who lent their own experience to the question, most dyed their hair within 3-6 months after, some waited up to 10 months. (Believe it or not I found stories of women who dyed their hair during chemo! Now that seems like an (unhealthy) exercise in futility.) None of the women had any problems other than with color.

I’m scheduled for tomorrow morning. I completely trust Helena. However, I hear that she has been spooked off the idea, but that’s because she’s now worried that it’s too soon for me to be exposed to the chemicals (having spoken to some “extended family”, both of them not knowing the recommended wait either). But I’ve waited twice the basic medical recommendation, so I think I’m fine.  I will be having a little talk with Helena, and if I do not succeed I’ll go into the big bad city of Birmingham. (I’m feeling quite determined to put my foot down and take possession of my hair!)

I promise a report and photos!

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I Saw Myself Her Sitting There

Yesterday I had one of my (now) 4-monthly check-ups. All went well. Dr. Awesome was less personable than usual but seemed pleased with my examination. The mysterious burn that I suffered during the surgery (explained in some doctor-speak I didn’t really understand but I think basically the cauterizing iron got some good skin) is by far the least healed bit. That’s looking yucky but nothing relatively major.

The most remarkable thing about the day was the wait. The doctor was about 40 minutes behind this time, and Del and I sat patiently in one of the semi-private waiting rooms. Each has a cluster of about 6 chairs enclosed on three sides by plants and half-walls, which preserves a quiet and intimate atmosphere. Del and I were in a cluster by ourselves when a woman came out of the office in front of us. In her late 30’s or early 40’s, she was stylishly dressed in heels, dark jeans and a fur-type jacket. Very well put together, which seemed strikingly incongruous against that fact that it was obvious she had been crying mere moments before. She had gathered herself to sit in our mini-waiting room for a few minutes before being called into another door.

I remembered so well being her. I had come out of the office, face all red and blotchy. I hated that everyone there must know precisely the news I had just received. As she sat there lost in her thoughts, sniffing and wiping her eyes, I felt a lump in my throat. I felt so bad for her, knowing how scared she was right at that moment. I so wanted to reach over and offer comforting words. To tell her that she would be alright. To assure her they would give her the best care. She wasn’t even with a loved one to put an arm around her.

But I didn’t. Because you just don’t know what people want to hear in that moment. And you certainly don’t know if they want to hear it from a stranger that she probably wished wasn’t there. After all, I suppose I can’t really know that she’ll be okay, which made me more sad. (I mean, I’m completely optimistic. But she might repond with the thought that I can’t actually know it.) I had no idea how to make words not sound shallow. So I just averted my eyes to give her as much privacy as possible which I guessed is what she wanted most. Del caught my eye and squeezed my hand.

I didn’t make it better for her. But I wanted to. Instead I have just thought about her since, and hope that she has been comforted and found support.

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Input

Today just a quick question: I have a real urge to dye my hair platinum blonde. I never quite had the nerve to do it before, but the current me says “don’t be a pansy”. So I’m going for it.

However, I want to be sure it has been long enough after chemo. There is not as much information about this online as I had thought. The only direct answer I saw was “doctors will usually say wait at least 6 months.” It has been a full year since my last drip. I think this is plenty of time. My bf’s mother isn’t so sure (and is hoping I will settle on highlights instead). I thought I would query here to see if anyone knows the answer or has experience.

Thanks!

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Annoyed

Since my diagnosis, my female family members have been more vigilant about doing all those things we knew we should’ve been doing before. The mammograms, the self-exams, the generally looking out for “it”. We were doing some of that – but certainly not with the full attention, as regularly or carefully as we do now.

One of them (we’ll call her “FF” for “female family member”) recently saw the supposed “best BC oncologist in the state”. The Dr. looked at FF’s films carefully, was told about me, and gave her recommendations. Although FF’s films are clean and she has agreed to screening by MRI as well as mammograms, each at 6 month intervals, the Dr. immediately recommended ovary removal (oompherectomy) and/or bilateral prophylactic mastectomies. FF pointed out that I had gene testing and the results were negative. And do you know what Dr. Lady said?

“Oh. Well, you said she got it done in Belgium or the Netherlands or something? They don’t have very good care over there. You should completely disregard that test.” (paraphrase)

I’m so unimpressed (to say the least). I don’t need anyone in particular to think I had the best care ever, nor do a I have the least problem with recommending a second test/opinion. (They are not infallable tests I realize, the reason being why I continued with my 2nd mastectomy.) But I find her attitude inappropriate on several levels. For one of our nation’s “experts”, she sound completely ignorant. If this lady is at the professional level she is purported to be, than she should be well-informed.

For one, she should be at least well-informed enough to know who her contemporaries are. Belgium is one of the best places in the world to be for medical care, particularly known for BC. (For example, it is Belgium that is pioneering the fertility saving/restoring treatment of freezing ovarian tissue for later re-implanting. See here and here.) But she appears to be dispensing drastic medical measures with complete disregard to contrary evidence.

Either this doctor has earned a reputation she doesn’t deserve or she is petty enough to allow her own need to feel superior to interfere with her professional approach (I’m not sure which I prefer, or how much of a difference there is).

It’s not just my personal experience speaking out here. If you recall, doctors in NYC told me in the beginning to “stay where you are”, when friends spoke to them about whether I should return to the US for treatment. Even the US government acknowledges this: when the bird flu scare first came about the US Embassy distributed contingency instructions to it’s foreign-posted employees in the event of an outbreak. Their instructions to Belgium-based employees? “Relax. Stay where you are. Belgium is one of the best places to be in the world in a medical eventuality.”

It’s not really my business, but I don’t want this lady directing the care of FF! I’m not unsupportive if FF decides to take the measures. Not in the least. But I want to feel that the Dr. treats FF like more than an opportunity to hear her own advice, like she recognizes that she is recommending something a little more serious than FF getting her ears pierced.

And I’m disappointed in this “highly respected” representative of America’s medical care which – regardless of it’s coverage faults – is the best in the world. (Dr. Awesome has clearly pointed out that Belgium’s progress would not be possible without the research upon which it is built – research that only America can afford to carry out.) Surely we can do better than this.

Telling my relative to take the most extreme actions possible with her body right away, with blanket disregard to evidence that says otherwise is disturbing to me. I’m not even getting an oompherectomy and I was the one with cancer! The 2nd mastectomy was my choice, encouraged but not pushed….

Am I crazy to be really annoyed?

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