What a Difference a Week Makes

I know I just posted a hair update, but I received a lot of feedback that confirmed it’s something a lot of people are watching. So guess, what? I (already!) have another photo update. I reassured several anxious/frustrated people that they’ll be shocked to see how much difference a week can make when your hair is growing out. As if co-operating to prove me right, today is the day I’ve been looking forward to for a year: I actually would have chosen this haircut! 🙂

5 Weeks Out

So I haven’t told you how I’m doing recovery-wise in a while.

Two thumbs up. The incisions have been upgraded to closed-scars for two weeks. I have one stubborn little healing spot on either side, but these are smaller than the eraser on a pencil, so I don’t foresee any complications from this.

I’ve been standing completely straight for probably a week and sleeping in bed for two. The stomach is still tight when I am board-straight, but still this doesn’t hurt. It’s sort of like having a piece of Scotch (or “cello” as the Brits call it) tape on the back of your hand and tugging on it. Except it’s a big piece of Scotch tape on my stomach. No pain though.

I have been in England for 2 weeks getting pampered back to health by my bf’s lovely parents. I had a really lovely stay and indeed, was just delivered home yesterday looking much better than I left it. I’m walking about 20 minutes a day (though just today the autumn rains have set in and I’m not sure I’ll be walking anywhere). I am doing gentle stretches everyday and though my range of motion is quite good, I’m still working on it. (I can lift my arms pretty much all the way above my head, but lifting them above my shoulders from straight out to the side is another matter.)

I’m home alone for several days until Del returns from a business trip. I actually miss his parents’ company, but I will enjoy a few days of my house to myself. Technically I have one more week during which I am supposed to me “waited on hand and foot” (words of the doctor) but I’m happy to say, folks, that I see the end of the story in sight!

Support

Just a weekend note to encourage you to vote for Law Mom as she competes as a finalist for a blogging scholarship. Not only does she deserve it, but it’s for a good cause (as the money will help with the finances associated with treatments).  Best of luck to her!

Scar Wars

When I was 20 I moved to France for 8 months. My best friend and I went to London for our Spring Break. While there, she pierced her nose and I pierced my belly-button. It was big drama in the family, as someone leaked word to my father, who detests piercings of any sort and thus thought I was rebelling. To this day I contend that it wasn’t rebellion; we had a great relationship. Simply, I was in college and in London and it was just something that college kids in London do. Anyhow, a falling out ensued that eventually healed. The ring eventually grew out. All the way out, as if it were a splinter or something. And it left a scar detailing the path it had taken. I remember someone saying, “Aren’t you sorry you got that now? All that fuss and now you have a scar.” I merely retorted back, “What does it matter? It’s not like I’m a belly-button model.”

It wasn’t pretty, but I just grew accustomed, ignored it. (After all, I wasn’t a belly-button model!) But then yesterday, here I was looking at my new, underwhelming navel, again suspiciously wondering how in the world it could be my old one. And then I saw it.

A part of the old scar! And I loved it! It was me! It was mine! I never knew I could have such affection for an imperfection. And now, it still doesn’t look like it did, but I have a new found respect for the navel I have, knowing my old one is in there, even if it has gone through some transitions (like the rest of me). And that made me think about my new scars…

When I was struggling with which type of reconstruction to choose, the expected scars were no small matter. My chest was already going to be heavily scarred, did I want my stomach to be cut up too? I liked my tummy. I didn’t need a “tummy tuck”! I’d rather have he scars above my bum where – frankly – I could ignore/forget about them.

But if I chose the bum-scar option (SGAP) I’d have to have 2 major surgeries 6 months apart. There’s only one place in the world (that I know of) that does both sides all at once for SGAP and, besides requiring me to go to New Orleans, I wasn’t all that hot on that idea either. (Props to the women who do it all at once. You’re some motivated, tough cookies!) I was also told that recovery from SGAP is tougher than from DIEP and that belly fat gives a better result (in terms of mimicking the original breast tissue). So, while I dreaded the belly scar, I chose it. I wasn’t happy about it, but I just tried not to think about it, to keep life in perspective.

And guess what? Since having the surgery, I’ve felt proud of the big ol’ stomach scar! It shows what I’ve come through. And it might sound wierd but, there’s something “right” about a physical marker that parallels the mental and emotional healing I’ve gone through: closed, discreet, but never to disappear completely. I never would have expected it (and of course I’d prefer not to have to have had to get the scar), but just like my old piercing scar, it tells a story about me. It’s a story that might not be pretty, but it’s a story I survived, and it’s mine all mine. They always will be and, for that, they have earned my affection.

P.S. For those interested, the hair has reached another stage and there’s a new picture in the photo “flow chart” to the right. 

Tsk Tsk! (Can I still claim ‘chemo brain’?)

Somehow I have almost managed to let the entire Breast Cancer Awareness month go by without so much as a nod! Well there’s some great information to nod at. I’d like to mention that Sam over at WhyMommy has been featured in Fox 5 reports on Inflammatory breast cancer (IBC) and will be doing a webchat tonight as well (click the link to her site for details). Fox 5 has also done two other features, one on 21-year old Colleen Capon and one on 8 year IBC survivor Elena Whiddler. Check them out if you get a moment. Three cheers to Fox 5 for their attention to the cause and helping get the word out there.

In another oversight which seems to reveal today’s theme as “forgetfulness” (or what I like to call ‘brain farts”, if you will), I also want to give a cheer to a website that I found indispensable throughout my own treatments. Breastcancer.org has information on everything you will want to know about, provided in such a way as not to be overwhelming. I found its discussion boards to be more helpful than I can say. If you have a question, are feeling scared, or just need to whine, head over there and the other ladies (and gentlemen) will sort you out with a welcoming dose of support!

Picks and Pans

First I’d like to give a big thumbs-up to the newly up and running breastreconstruction.org. A woman I “know” vis the discussion boards of breastcancer.org – a spitfire named Beth – has been working tireless in her new job to get the site going. And I must say I think they’ve done a wonderful job. If you have any questions about reconstruction, start there.

Meanwhile, there is one thing I have been underwhelmed by from my surgery. That is my belly-button.

I did have quite a nice one, if I do say so myself. Technically, the one I have now is supposed to be my original one. I’ve heard some doctors “make new” ones. My plastic surgeon seemed to think this was a horrifying idea when I asked him how the whole belly-button part would go down. He said, “Um, no. Your navel is attached to all sorts of organs inside. There is no making you a new one.” What he would do, is cut around the original one in order to use that skin for the surgery, then resew the belly-button into the skin that would be pulled down (from higher up) to cover my tummy. Fair enough.

But it doesn’t look like my old belly-button. I’m sure it is. I don’t doubt him. But instead of a sunken dime-shaped dimple, it looks like a slash now. And oddly the stitches go around in a three-quarter moon shape. Strange. Oh well. I’m sure it will be more dapper as it heals. And I’m sure I can sacrifice my “classic” navel style for a new one and breasts. I’ll let you know how it shapes up.

I wrote the second part of the above about 2 weeks ago and never posted it. Tomorrow, I’ll let you know how it’s coming along.

Headlines

Today cnn.com has posted a story with the headline “Breast Cancer Chemo Raises Heart Risks“.

I find articles like this a little strange simply because, well, doesn’t anyone getting treatment know that? They should. It’s not new information is it? It seems a little like posting a headline such as, “More than One Kind of Chemo Available” or “Breast Cancer Patients who Have Lymph Nodes Removed Risk Swelling in the Arm for the Rest of their Lives” or “Hey, Breast Cancer Sucks!”

Don’t get me wrong. I’m not knocking anything that works to keep the issue in people’s minds, keeps them thinking, keeps them realizing (as much as it is ever possible) that it can happen to them so to be aware. Maybe it is just to keep the cause in the headlines. I’m all for that! But if that’s not it, then it just seems odd to pick something like that feels like “old news” out of all there is to say on the matter.

I’m simply curious. Or am I missing something? (Quite possible.) Cause right now it seems the only thing I’m missing is a cush job writing breast cancer articles for CNN! Where do I sign up?!

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.

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.

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.