Monthly Archives: October 2007

Allergic to Excercise? (Really!)

Sitting on my duff. That’s what I’ve been doing for weeks now. Granted, the last year and a half has allowed me to do only irregular swimming and yoga, but since the surgery (for obvious reasons) I’ve done next to nothing. Literally. As if that mere knowledge alone didn’t make me begin to feel strangely connected to the sloth, my body feels the need to let me know that it is not all in my head. Three weeks without any exercise at all is (apparently) enough to make you allergic to it!

I’m not exaggerating. About a week ago I went outside properly for the first time. Errands required us to make our way from our apartment down to the metro, stopping in at various places along the way. The metro is about a 5-7 minute walk. We made it there and started back. About half way home my legs began itching profusely, underneath the skin.

Now I’ve had this happen before. A handful of times it has come to my feet, specifically as I entered the NY subway. Strange, but true. (This leaves me appearing to dance a strange stomping jog on the platform while people pretend not to notice the crazy girl. Note that the stomping makes it worse.) But I am not allergic to the subway (technically) because sometimes when I am visiting my family in NC (and out of the workout habit) and we walk around the neighborhood, my legs begin to go crazy itching about halfway through the 2.1 mile circular trek. My god it’s torture. It is an intense itching and doesn’t stop until about 10-15 minutes after I stop moving. Scratching makes it much worse, but it’s near impossible to resist. It feels like when you get “pins and needles”, except the sensation of prickly tingling is also full of evil itch.

I sort of assumed everyone got this sometimes. But the strange looks I’ve gotten from friends we mentioned it to told me that is not true. Now I discover this has a name, exercise urticaria. Basically this means that I get hives when I exercise. Some call it exercise allergy which I find terribly funny. Can you believe it exists? It’s a “diagnosis” I would have paid for in years past (as a cop out for not going to the gym). I have also had it happen after hot showers or baths, but only for a few months and then it stopped happening as suddenly and mysteriously as it began. Standing in front of the fireplace invariably brings it on as well, making me choose between the luscious heat or no itching.

Word on the internet is that it means I have a hypersensitivity to a rise in body temperature. (This makes sense when applied to the NY subway as well, as anyone who has used it knows how extreme the temperatures can be on the platform.) It also says that when people are out of shape, the capillaries in fatty tissue collapse. (Mmm, sexy!) When the blood gets back into them from exercise, they open up and this creates the itching sensation. Once the capillaries are used to blood flow again, they will stay open – and voila – no more itching. While this only explains the occurrence as a result of exercise, the situation indeed quickly improves when I get in a little bit of shape. (My goodness, between that and my hot flashes I should look into moving into a refrigerator!) I’ve begun taking walks now, and it seems that each time I can go noticeably further without the itching starting.

So, three weeks on my rump and I’m “allergic” to even the slightest exercises. How’s that for “be careful what you wish for”. I’d rather be able to fool myself into thinking I’m fitter than I am. Hmph.

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Filed under breast cancer, life, recovery, this time THIS year

Out with ‘Quasimodo’, In with ‘Frankenbabe’

As you can see from the title, my progress has merited a change in nickname from my boyfriend. I’m quite keen on the new one! Makes me sound like some sort of hot comic book heroine. 🙂

Otherwise, I’ve had all the people I know in chemo on my mind recently. I have several friends/acquaintances struggling through the stages where it’s no longer even mildly “interesting” (for lack of a better word) as something you never thought you’d have to learn about. Unfortunately, you’re now a pro and it’s just boring to feel bad all the time. And while I did feel bad a lot, it wasn’t necessarily the side effects. It was the guilt that I really detested about chemo.

That’s right. Guilt. This is because of the amazing fact that your body is simultaneously one harmonized organism, yet somehow one part can be doing something major that the rest of you doesn’t know about. Like the tumor, of course. I used to creep myself out on occasion with the realization that just because I had breast cancer didn’t mean (technically) that I didn’t have/wouldn’t get another. Here my liver could be going about its business and decide to freak out and become cancerous, thinking it was putting on quite a show, having no idea that its tantrum was nothing new. However, I figure if my liver could know what my breast was doing, it would be considerate enough not to pull that trick (ever). It would only be fair. But, alas, there are no such negotiations.

This relates to chemo in the sense that my healthy cells had no way of knowing that all these chemicals were for my own good. So a lot of my discomfort came from the knowledge that – as far as most of my body was concerned – I was just poisoning myself. And if that’s the case, how could I expect them to be motivated to hold strong against the onslaught? If my good cells knew what was going on with the breast, surely they would understand. But they didn’t. They just saw toxins being pumped in with my permission. They told me their hurt by the bald head, the bothersome gut, the acidy stomach, the ringing ears, the sore mouth, etc. And I wished there were someway to say to all the 99% healthy part of me, “I’m sorry! Just bear with me. I promise it’s not aimed at you. And if I didn’t do this now it’d be worse for you later.” Even though I technically felt fine during my chemo drip, it’s a real mind bender (the real phrase I want to use is quite impolite) to go somewhere, sit down and just let them pour gasoline into your veins. That’s where the associative nausea came from. I wonder if it’s the same for other patients?

I say all this not to put creepy ideas in the minds of women who might not have them already. I say it because I haven’t seen it said before and it’s no small “side effect”. If I am the only one, well, now you know my neuroses and I’m glad that others don’t have to deal with that guilt too. But if I am not the only one (as I suspect) than I say it to sympathise and say, I don’t forget how crappy it was. But my body understood in the end, and yours will too.

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Filed under breast cancer, chemo, life, reconstruction ("upgrade"!), recovery, this time THIS year

Wonders

One thing I cannot get over is how much easier getting over this surgery is than my mastectomy was. Obviously not counting the first 48 hours, this recovery has been much less daily hassle.

What I mean is…after my mastectomy (and lymph node dissection) I couldn’t use my left arm at all for quite a while. It was all I could do to brush my teeth with that arm. Forget the simple things we take for granted like, say, schooching myself upright on the bed when slid down from sitting. I had to have months and months of physiotherapy. I couldn’t begin to sleep on my side for a month. Plus I wore that armpit-to-waist bandage in the summer heat for what seemed like ages. With my skin healing problems it was 8 months that I went without a full-on carefree shower. Those are the types of things I expected this surgery to irritate me with, x 10.

But with this monster surgery, I’ve had some use of my arms since day 1. My main limitations in that area are instructional, not physical. And the big ‘ol bandage? Nothing. Nothing! I’ve been able to get the wounds wet since day 1, too. I first found this out when I spilled water on my stomach in the middle of the night at the hospital. I called the nurse and he wasn’t concerned at all. “Did you get sprayed today or yesterday?” He was referring to the little aerosol can of smelly, cold liquid that gets swept over my wounds after cleaning. I answered affirmatively. “Well then, no problem. I’ll change your bed if you’d like though.”

I’d been told that this human schlack was in the place of bandages, but that was hard for me to grasp and really trust to be true. But apparently, that stuff is amazing as they say. The doctors began enticing me with the promises of showers as soon as I got released. I find all this nothing short of amazing. (Of course, after 8 months of carefully not getting my mastectomy wound wet, I found it hard to break the habit. I have now gleefully done so.)

Now that I don’t even need the wound cleaning and such, the care routine is mostly to “tidy me up”. Much of the incisions are looking like nothing more than a regular anonymous cut, so the stubborn remains of glue from the miscellaneous medical stuff taped all over me looks more alarming than the wounds do. The doctors use something called Ethol to remove the stubborn sticky. I have finally identified Ethol as that mysterious “smell of chemo” however, so I refuse to bring any into the house. I must’ve smelled the strong chemical in the halls of the day clinic during my drips. Regardless, it’ll have to be resolved with good old soap, water and patience. As for the schlack stuff? Well, remember being in pre-school and putting Elmer’s glue on your finger tips to dry, just so you could peel it off? (Or am I the only one?) This stuff works just like that, albeit a bit more stubborn. So not having had to use it in a week, I can now entertain myself for quite a while peeling it off from here and there.

A few days ago I began lying on the sofa for little bits of time. Last night I tried my bed (my bed!) and while I woke up often and was a bit uncomfortable, I stayed there all night. Milestone!

Ahh. Beds and showers. I’ve got everything a person really needs in life to feel spoiled.

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Filed under breast cancer, life, reconstruction ("upgrade"!), recovery, surgery, this time THIS year

Sensations (and Pain Meds)

Update: Grr. Having lots of those random shooting pains now.  One here. One there. Peuw. Peuw. (That’s the sound of them shooting around my chest, cartoon style, in case you were wondering!) I can survive them of course. I’m lucky that’s all there is. But they’re just enough to drive one crazy!

So how are things feeling? Pretty okay.

The long overdue story of pain meds I can tell you in brief: I came home from the hospital on a Monday. I was okay until Wednesday and Thursday, when the pain was kicking up a bit. It was survivable, just making me terribly cranky, and I didn’t want to go through the weekend with nothing on hand in case it continued. Getting pain medicine from my doctor in person would require another $200 taxi trip, and it had to be done that day because my doctors would be off on the weekend. So, I called Dr. Awesome and he offered to fax a prescription to my pharmacy.

I’ve used the same pharmacy for two years now. In a country with stores that sincerely don’t give a damn whether or not you ever return, building up loyalty, getting them to know you, is about your only chance of decent service. They know my situation and I have been very happy with this place. I called to make sure the prescription was in. They said yes, but they would not give it to me. I got one of the typical Belgian customer service (read: bullcrap) excuses, “I must have the original prescription to give it.” This is wrong on so many levels, namely that What’s the point of being allowed to fax prescriptions then?! and that I had done just this thing about 5 times before and never had a problem. This is not to mention the fact that Belgium’s rules are just as flexible in the opposite direction if they want them to be. (I have simply walked into an unknown pharmacy before and said I needed more codine pain killers and been given them. With no prescription, nothing but a pitiful face.) I argued and argued with her. She said, “Well, if we knew you, then that would be different.” I said, “You do know me! I’ve been coming there for 2 years!” Blah blah blah, she finally agreed “maybe”.

I sent my friend over with my passport and loyalty card, who came back empty handed. Not only did they refuse to give it over, he even offered to ring Dr. Awesome and have them speak to him and they simply refused. This is when I tried to march my hobbled self over there on person, but was thwarted by the street of busy shoppers.

By the time I went to the doctor this Monday, it was not worth getting a new prescription. But that’s a
good thing. The sensations I have now consist mostly (still) of both a bit of heavy numbness and sensitivity. The heaviness has eased a lot from what it was. I can take deep breaths, sneeze, all that. The stomach pulls (not really painfully though); it’s just the breasts that feel heavy, probably because of the numbness.

But the numbness is not complete. And it’s improving. The first days in the hospital, I felt a little weird about the new breast. The right one (with its original skin) felt strange, but the left one (made from the stomach skin) felt like someone had strapped a steak to my chest. It just didn’t feel like it belonged to me. I was slightly creeped out wondering how long this would last (some women complain about feeling that the new breasts are not part of them for years or indefinitely), but that sensation has completely gone. (Yippee!) Both sides have the same vague numbness. There are occasional shoots of mild pain, but mostly there is somhow a simultaneous lack of feeling and a hypersensitivity. For example, I can’t tell exactly where an itch is, but I do have them, and if I itch the wrong spot, it hurts the nerve in a way that it would not do on “normal” skin. It’s difficult to explain, but it’s much like the original mastectomy armpit feels. Regardless, the breasts now both feel equally mine, and that’s the sensation that really matters. I am very optimistic that I will have quite a bit of feeling before I’m done, which is lucky icing on the cake.

PS. I’ve added photos of my little toy to yesterday’s post.

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Filed under breast cancer, reconstruction ("upgrade"!), recovery, surgery, this time THIS year

Who’s Better than Him?

Tonight something blissfully light-hearted. So I ask you, who here has ever heard of a “push gift”?

I never had, until I visited an American friend who lives in Hong Kong with her husband and their first kid. At the time the child was just 6 weeks old and my friend was discussing what she got for her “push gift”. Now, I don’t remember what she got, but I remember it was something pretty swank. I didn’t understand, so she explained to me that women – at least in her expat circles – each get a lavish gift from their husbands after giving birth. Me? Never heard of such a thing. But it doesn’t sound like a bad idea!

So when someone compared my reconstruction surgery with giving birth (“It’ll be rough, but you won’t remember the pain once it’s over.”), Del and I joked that I deserved a push gift.

And, much to my surprise, the dear man excitedly presented me with a brand new iPod Touch tonight. Yowza! May I just say that it’s gorgeous? He must’ve had this in the works for a while because we’ve talked about these sexy little gadgets for weeks, me firmly resolved not to buy such a luxury when not working. Besides, I never have the newest, greatest, flashiest gadgets. I’m just not quite that cool. I’ve barely shown any excitement because I’m almost embarrassed (though in a good way). It’s so unnecessary. It’s so sweet. He didn’t even get himself one yet. I don’t feel like I deserve it.

iPod thumbnailsiPod WiFi

The iPod touch, (1) showing thumbnails of my favortie photos, and (2) caught in the middle of switching from vertical to landscape view as I look at Killerboob on the internet.

But then again, of course I do! Cancer sucks. Why shouldn’t we get to be distracted with shiney objects to celebrate hurdles jumped? Actually, what I really deserve is a new breas-….oh wait. I guess I got that. Well, what I really really deserve is not to have gotten this disease in the first place. Sure, he can’t take it away, but he’s not beyond a little spoiling to compensate. And who am I do deny him? That would just be cruel and selfish, right? Bless his heart. As my New York friend would say: Who’s better than him? *dreamy sigh*

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Filed under breast cancer, reconstruction ("upgrade"!), recovery, this time THIS year, what's it like for him?

Lots of Good Things

So the pain med story got trumped by WhyMommy‘s setback; I just couldn’t write about anything else just then. I will get back to it.

But more importantly here, I’ve had some good things to report. Namely, yesterday I went back to the plastic surgeon for my first follow-up. First, it was a long and hard day for me, considering I hadn’t even left that house until then. But it went so very well.

We felt that I still wasn’t ready for public transportation. My only friends with cars still around (many have moved away) are those angels in Leuven and I refused to ask them for anything else. So Del and I decided to suck up the 140Euro ($200) round trip cab fare. ouch!

I thought I was brilliant when I remembered a cab driver we had a few weeks ago. A lovely man named Georges. Polish, speaking English eagerly, very friendly, really loves Anglos. Talk about a rare find in these parts! He gave us a discount that night, just for being us, and his card for future work. Well I called Georges in the morning and he said he would do the round trip for 60Euros ($75). Del and I were excited and agreed between us we would pay him 100Euros ($144) anyway.

We should have known, given Brussels’ customer service habits. Georges said he’d come at 2. We gave him until 2:10. I had told him clearly that I had an appointment at the hospital. When I called to see what was keeping him he was nice and cheerful as ever. “Oh, I’m going to be late. I got busy after you called. About 30 minutes more. Will that work for you?” Of course I said no, that won’t work for us. I was stunned that he didn’t even call us so we could make other arrangements! I didn’t even scold him, for I was in shock and expected that at any second he’d say, “ok, well…” and come up with some solution. Instead he cheerfully said, “Ok, well, another time then. Bye-bye!” click. Urrrg! The worst thing is that he did that Brussels bit where they don’t even apologize, they just pretend it’s your fault, or that nothing is out of the ordinary. But what can ya do? We shrugged our shoulders. Called him a few names between us. And took a $100 taxi. At least it came.

So that bit wasn’t such a good thing. Nor was ending up there 2 hours early, as the appointment time somehow or another (read: by either me or the nurse) got mixed with my next one. Still, it was a surprisingly painless wait even though we went to lunch and missed Dr. Fabulous attempting to squeeze us in when he heard I was early. I also should have known, as my hospital service is as good as the Brussels service is bad. Ok, so that wasn’t go great.

But, Dr. Fab said everything looks well. He took of all the sticky paper over the incisions – tape again being the most painful part of the ordeal (that’s a good thing). He also cut the few stitches straggling to dissolve with a creepy looking finger blade made for the occasion. But there I sat, unable to believe that 2 weeks out of surgery the wounds are – at least superficially – closed! What ridiculously amazing creatures we are!

And what a ridiculously amazing surgeon he is! Even at this “raw” stage, the skin flap meets the surrounding chest skin almost invisibly. My pale, never-sunning self luckily has stomach skin that matches in tone to the rest of my chest’s skin, and the scar on that side is finer than I thought physically possible. It looks merely like I took a very (very) fine pen and drew a little line on my chest. It’s crazy!

Fabulous said not only can I take a bath, he recommends that I start doing so. He also said in a week I can start swimming and that is most highly recommended. Unfortunately the pool I go to is not that convenient, but I look forward to getting in the water when I can (read: bother to) get there.

Dr. Fabulous did that thing that I thought was all part of their plan. As I eased myself onto the examination table he said, “Is it still that tight?”, at the sight of how bent over I still was. I had been feeling pretty advanced, but I stammered out something about a long day to hide the fact that apparently I should be more advanced.

But I have to tell ya, this morning – amazingly – I got up and can stand almost normally! Sure it pulls (not painfully, at least not at the moment), sure it’s not a relaxed stance, but seemingly overnight, Quasimodo is definitely on the way out. That is one of those good things I was talking about!

Del also made my visiting friend Adam and myself a full-on, kick-butt, completely improvised meal last night. And you know what I did after that beautiful meal? I got on my returned-to-me, seemingly fully functional, not accepting death-by-Diet-Coke computer! Who hoo!

Those are very good things.

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Filed under breast cancer, life, recovery, surgery, this time THIS year

Angry Too

Today is a day to be angry. Today is the type of day when the relentless evil that cancer is sticks its head up and says, “Hey now, don’t you underestimate me! I am heartless and mean and I will be as difficult as I can be sometimes, just cause I’m a bastard.”

That is what’s happening to WhyMommy, as she struggles with setbacks in her chemo. My Cancer Twin, Jess, almost had to do more chemo herself, so I know how utterly gutting that can be. You draw all your energy to deal with the chemo from that promised end point, and then it dances a little further away like a carrot on a string. It’s so demotivating. So to all my readers, pop over to support her if you can. Hang in there WhyMommy. You are doing an amazing job. And we will all say prayers, cross our fingers, send positive vibes, or do whatever it is we each do to encourage your body to rally, for all the good soldier cells to get angry too and go into the battle with a vengeance, for the tumor to learn its place, cooperate and wither. After all, you’re doing your end of the bargain, it can at least do that same. You are in my thoughts. You are so in my thoughts.

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Filed under breast cancer, chemo, life, this time THIS year