Category Archives: if I’d known than what I know now

Highs and lows

When I turned 20 I was living in France for my study abroad. It was already then concluded to be the best year of my life. It’s hard to describe why, other than feeling like the world was made up of fellow 20-year-olds, situated on the beach of Southern France, inhabited by people that I thought were the coolest ever, and they seemed to feel the same. Everyone was interesting, smart, attractive, fun, interested in the same subjects, learning the same things together. It was like living with all of your best friends ever in one place, one without worries.

How depressing that was. My 20 year-old-self thought, “How can I live a happy life, knowing the best year is over!? Now I have to live 60 years (should I be so lucky) trying to not to look wistfully back.” Eventually I came to terms with that (I mean, after all, isn’t that the very definition of being 20? Thinking in dramatic terms that life could never be so good.)

Well, I am pleased to announce to my 20-year-old-self that my year in France has met its match in the wedding. Surrounded by people that I think are just the best, all of whom have gone through a lot of trouble to show up and demonstrate that they feel the same, all meeting each other at long last to make the connections I’ve long wished could be made – it’s the same as study abroad was. Sadly we couldn’t invite everyone we’d have liked, and it only lasted for days. But hey – at least we dragged it out that long! That’s the place that I wish Del and I could move to (you know, the place where all of our loved ones live. All together.)

Similarly, it seems cruel that we are now at home and – aside from the mess of suitcases and some boxes just waiting to be opened – it’s almost like we never left.

Everyone tells you that your wedding will go by in a blur. To take it easy, take a breath, soak it all in. Well, guess what? It’s nice advice, but it doesn’t help at all. Time is the trickiest of forces. You can pay close attention all you like, but he won’t be slowed or sped. He’ll bring everything you’ve waiting for, but he also promises to take it away. What a thorny friend.

My sweet sisters and best friend all seemed to have the post-wedding blues for me. I’m hoping they have taken the bullet in my place and that I can avoid the sadness that comes when most of the people you love most in the world have come together and thrown a big love-fest for you and then gone home. Like before, they’re now spread again to the 4 corners of the globe. I just can’t wait for the next wedding. Sister – you’re next up!

P.S. No wedding photos yet. We’re waiting, waiting…

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Filed under if I'd known than what I know now, life, this time THIS year, wedding stuff

And here I thought I was keeping my head above water

About a year ago I got mail from the IRS. I wasn’t worried. What could they want from little old me?

I was being audited for my 2005 taxes. That’s what. In 2005 I was still in grad school, living in Belgium and commuting to NYC for work. So my accountant and I claimed an exclusion because I lived abroad. Apparently, they didn’t like that.

But I wasn’t too worried. I sent them all the info they asked for: a copy of my apartment lease and proof that I paid rent in the foreign country, work schedules, a copy of my residence permit, etc etc.

To get to my point, I thought that, Ok, maybe they were going to decide I owed them some money for whatever reason. It wouldn’t be worth fighting; I’d just pay it and be done. It couldn’t be that bad – I mean, after all, I don’t make very much!

So imagine my cranky surprise when my father came to visit this weekend, toting a big fat envelope from the IRS. We were joking, I gave a drum roll to see how much they’d decided I owe (hoping it was $0, of course, assuming at worst it was a number with only two 0’s in it)…and just about choked. Somehow the IRS thinks I owe them over $4000! The most insulting part is, a big chunk of that is a “penalty”. How can they charge you a penalty for not having paid money they never told you you owed?!

I’m not a Conservative. I don’t have a problem with taxes. But, please, just not all at once. This is one of those crappy times when I feel like I just learned what it’s really like to be a grown-up. And I don’t like it. Sigh.

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Filed under if I'd known than what I know now, life, work

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. 

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Filed under breast cancer, if I'd known than what I know now, life, reconstruction ("upgrade"!), surgery, this time THIS year

My most outstanding chemo issues

My chemo would become about 2 issues for me. Out of all the possible side effects and things that I dreaded, I had many of them (the racing heart, the ringing in the ears, etc.). But really it always came down to two things that made me miserable: hemorrhoids and Neulasta.

The first one is not an elegant discussion. It’s something I’d normally never openly talk about, but as a warning would have made all the difference to me, I’m putting it out there for anyone else it might help. Anyway, medical chat is no time to be shy, so here goes. I’d never had such a thing in my life (somehow I was lucky for 30 years I guess). So when the problems began I was not wise enough to catch on and take preventative measures. I didn’t realize what was up until the problem was in full swing. By then it was too late.

The thing is that one of the things that chemo really screws with is your mucus(es). This means that the nice little lining of slime that normally covers your intestinal track is gone. This is rough. Seriously, this problem had me terrified every single day. I’m still shy about going into detail, but suffice it to say that if anyone ever searched the caches on my computer they’d think I had some weird fetish. I tried everything out there and read up on the possible complications (which only served to make me more paranoid, which does not help the problem)! Everyday I wondered all day whether or not I’d need the bathroom. If not I was cheerful, but scared for the next day. It all sounds so silly, but it was terribly serious to me. There is no worse enemy to have than your own bodily functions. As this one brought pain sometimes akin to childbirth (so my research said. And if you disagree don’t tell me or I’ll never have a child!), Chemo passed largely as an anxious attempt to balance my need for fiber vs. my need for easily digestible foods vs. my need for vitamins and minerals vs. my inability to eat fresh foods (b/c of low WBC) vs. vs. vs. vs. vs. It’s a maddening cycle that any person in chemo will face in some form or another.

What did I settle on? Weary of taking any more meds than necessary I first tried taking 2-3 Tbsp of olive oil a day. This is an ancient remedy and serves to line the intestine. It’s also a disgusting remedy. I discovered that I can’t stand straight olive oil and eventually it made me want to gag (not to mention burning my throat). I went on to fish oil capsules. Fish oil is also gross. I would burp foul things for hours after taking them, but they were good for me if nothing else. Eventually I found a combination of things that got me through, which I will be happy to email with you personally about if you need. But out of all the things that I thought chemo would entail, living in terror of going to the bathroom each day was not one of them! If only someone had warned me…

My WBC count was the other monkey on my back. Just after chemo #2 my best friend came from NYC. I was so happy to see her. And she took me on a very generous shopping spree to buy me clothes that I could wear (since I was still having problems with my mastectomy wound and couldn’t wear a bra). Normally I would never have accepted such a gesture, but I knew that she really wanted to do this and we had a great time. She is awesome.

I felt a little faint during the shopping but hung in there. I’d had Neulasta, which is “guarenteed” to work, so I wasn’t worried. When the time came to go to my blood tests I was severely disappointed to discover that my WBC count was nevertheless 1100. I’d gritted my teeth through the shooting pains it causes for nothing. The disappointment wiped me out as much as the low counts. Three years to get her to visit me in Europe and the rest of Wendy’s visit was spent on my couch. Boo.

Why hadn’t the Neulasta worked? That was something which I would struggle with for weeks and weeks. And weeks. The first obstacle was to get someone to listen to me! Try telling your doctors that their favorite most expenisve wonder drug that “always works”, doesn’t always work! They aren’t too prepared to believe you. trust me, I tried.

Tune in next time for my Neulasta rant…

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Filed under breast cancer, chemo, if I'd known than what I know now, in praise of true friends, life, this time LAST year

Chemo #2

In general, chemo was a quickly established routine at least as far as certain things were concerned. I would get a headache during the last drug’s drip. I would go home and get ill almost exactly 2.5 hours after my drip. I arranged my chemo for the afternoon, so that by the time I was finished the evening was upon us. I would come home, change immediately into my pyjamas and crawl into bed, hoping to sleep through the worst of the sensations.

For chemo #2, two Brussels friends volunteered to come with me. This was an unexpected and touching gesture, especially as one if them was a guy. Chemo is just one of those experiences that I assume most people would not be eager to watch. It’s uncomfortable and highly personal. Call me sexist but it just seemed like the kind of thing that many friends – particularly guys – would rather opt out on. But I was proven wrong when both Dan and Pia voluntarily took off work and sat by my side for the long hours.

As usual, my hospital would surprise me with thoughtfulness. Usually one only gets a bed the first time, (a reclining chair the times after). However, my head nurse had taken note of me the first time and reserved me a bed again in advance. “You were quite upset last time, so I just wanted to make sure you are as comfortable as possible. I’m sure you’ll be a pro now, but still….” I wanted to throw my arms around her for her thoughtfulness.

To get to the good part: we chatted all through chemo and this time, indeed, it was much less traumatic. No tears, all casual. Del also surprised me by getting off of work early and showing up. The nurses did not mind that was exceeding the limit of visitors (another advantage of taking chemo late in the day).

Then, Dan and Pia insisted on coming to our place to “hang out, watch a movie.” I tried to tell them that it would not be a pleasant night for me and it wasn’t very appropriate for social calls. They didn’t seem to get it. I didn’t mind them being there when I got sick, but it was if they didn’t quite believe me. So I was a good sport and they came over and ordered in Japanese food. I clenched my jaw against the smell and tried to participate by asking for rice. (Which I couldn’t eat because the restaurant foiled my plan by putting some fancy seasoning on it. Bleah.) It was a challange but I made it through the smells of their dinners.

We put on Napolian Dynamite. All was going well. Then, right on time, 2.5 hours after chemo, I ran out of the room, tossed a few cookies, put myself together and re-emerged from the bedroom. Dan and Pia were scrambling to get their things together. “Oh, my, we should go….no really, we should go.” You would have thought that they had walked in on quite something else. Poor things were tripping over themselves to get out of there. I was sorry to make them uncomfortable, but to be honest a part of me found it humorous. It was hard not to sing, “told you so…” just for the fun of it. But I didn’t. They weren’t quite ready to joke about it yet. (My chemo twin, Jess, on the other hand, had a good laugh with me later!)
I managed to keep Del company for the movie and then gratefully crawled into bed, willed myself to go to sleep immediately. With new drugs in my arsenal, I thought I was going to make it through the night. I slept well until Del came to bed a few hours later. I woke up and had to go to the bathroom. As I set there peeing, the urge to throw up hit hard and fast. Obviously I couldn’t jump off the toilet that quickly, so I clamped my hand over my mouth. You know how well that works: there I was in all my glory, sitting on the john and throwing up in my lap! (As Del just said, “ahh, the good old days.”)

I think I may have giggled about it a little right then, which you can imagine struck Del as strange from the other room. A few paper towels did the trick and it was not so bad. And I made it through the night with no more problems. Most importantly I learned two good lessons: 1 – survey the nausea situation before blocking your only receptacle. 2 – Most importantly, no matter how bad the last chemo was, there’s plenty of hope that the next one will be better!

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Filed under breast cancer, chemo, humor, if I'd known than what I know now, in praise of true friends, life, this time LAST year

Worst Hospital Ever (I dare you to find a worse one)

I promised convincing evidence. Here it is. A sampling of what my week in this place was like:

• Several times I had to point out that my IV was empty and needed changing /or was not dripping. They always ignored me like don’t know what I’m talking about. They barely look at me, nod and say “it’s fine” or “someone will come do it when the time is right”. That is, until I’d point out that my blood was running back up into the tubes. Then they’d say “oh no” and rush to change/fix it. Obviously it wasn’t “fine” and no one will come to do it when the time is right”.

• I asked 4 times over the first 2 days for a tv remote. They’d say “sure” and then disappear, never to return or say another word. Finally the answer is that I have to go to admissions and ask for one and pay 50 euro deposit (and you kidding?!) Plus 3euro per day. I point out that I’m in isolation and am not permitted to leave my room. Duh. Still, no one gets it. They either look at me like I asked something ridiculous or else they do that thing where they agree and then disappear forever. They are sooo good at that.

• I am not allowed to eat any raw fruits or vegetables. However, they tell Del that the dried apricots he brought me were fine. (They weren’t.)

• They feed me crappy white bread, butter, jelly, fake cheese (like VacheQuiRit) for 2 meals a day (dietary score=0.0024), and tea when I ask for coffee, or else they forget anything hot at all. I get only one .5 liter of water per day. My only other option is to refill the bottle from the tap in the bathroom (for someone with no immune system!). I get no juice, nothing else.

• When I am finally allowed out of isolation and can go myself to get a tv remote, I have to go through whole shebang of “choosing” which room I’d like: single, double or quad. And I have to agree to the price and conditions and sign a contract saying so! I say to the woman, “but I’ve been here for 4 days already. I’m already in a single room.”

She says, “Yes, but which room would you LIKE?”

I repeated myself several times, but she continued to give me the same answer as if it wasn’t ridiculous. I told her to forget the remote. Then she said I had to pay the 50 euro deposit for the room anyway, which they’ll give back to me. But she said I can pay it when I leave if I like. (Which means of course that they should turn around and give it right back…weirdos!!!)

foto-deliris.jpg

Del in all his visitation gear.

• This is the best one: a med student enters my room to ask me some questions while I’m still in isolation. Except she has no gown or any of the other paraphernalia on. I say something about my being in isolation and she looks at me blankly. I try another tactic where instead I say, “Oh, that’s great. Am I no longer in isolation?”

She looks at me like I said something stupid. “Ummm, what?”

“I was in isolation. But I see you have no gloves, mask, booties, gown or cap on. I guess that means I am no longer at risk. Nobody told me the good news.”

She holds up a finger. “One moment.” She goes to the room door and opens it, to see a big sign on it warning people not to come in without the coverings. There’s a trash can next to it for people to discard these things when they leave. Somehow, this brilliant girl missed all that. She leaves, comes back dressed, then admits that she’s a student and didn’t bother to read my file. (Excuse my French but) For fucking fuck’s sake! What is wrong with these people?!?!

• On Tuesday and Wednesday, the docs said they couldn’t give me a special shot (later to be known as Neulasta) to raise my WBC because it cost 1500Euros per shot and insurance won’t pay for it until the next time this happens, because I have to have proven that I have a problem keeping my WBC up first. (Sounds like US-style insurance!) Finally on Thursday they give it to me, since my WBC are still going down. That night I start to get shooting pains in my hips and the base of my spine. I feel the necessity to rub my kidneys, but that makes it worse. Nothing helps. Not moving. Not sitting still. Not lying down. By Friday afternoon I have complained about this several times. It has gotten seriously worrying and I go to find the doctor to ask him in person. He tells me “it must just be from lying in the bed for 5 days. It’ll go away.” Now, I get released from the hospital, only to find out that such bone pains are the most common side effect of Neulasta. I suppose it would be too much to ask, for them to know anything about the medicine they gave me, no?

• All week I asked that my oncologist be informed of my situation. They assure me he will be/is, but when I call on Thursday because I have my doubts, I find a very upset Dr. Awesome, who has not been called once and had no idea that I was in the hospital.

(As an aside, he’s upset also that I am not at the Leuven hospital, where they know me and can give me good care and offers to transport me right away. I decline as I will be released in the morning anyway. When I explain how I came to be in this excuse for a hospital, he’s furious at the people I spoke to on the phone on Monday night and I have no doubt they received a proper lashing. Dr. Awesome leaves me with his home phone number, just in case I should need it. Don’t I feel special?!)

So go ahead. Tell me about a worse hospital. We’d all appreciate the warning!

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Filed under breast cancer, if I'd known than what I know now, life, this time LAST year

Picking up where we left off

Finally, after what seems like quite a while, I am back. I won’t be able to post every day for a while yet, but I’ll do my best to get posts up as much as I can.

Here, today, I have returned from my family vacation and am happy to say that I have finally seen cancer from its best angle….in the rear view mirror! This trip to Turkey was the first time that I’d meet lots of new people and it wouldn’t even occur to me hypothetically to mention cancer when telling about myself. Finally, it feels like something that just happened to me once. In the past. Just one boring story among many that one accumulates with age. Cool.

Yesterday I had an appointment for an abdominal sonogram so they can chart the blood vessels that will be used in my reconstruction surgery. It’s 2 months away today!

The sonogram was generally like any other, except that they mark me up, it took about 15-20 minutes and I fell asleep on the table. You can see where he put a sort of ruler on my belly and marked off belly marks

intervals down to the crotch (see photo). I’ll be getting the DIEP procedure, which means they’ll take a football shaped bit of my stomach fat, along with the blood vessels, and reattach it all up top. I’m a little nervous about such a big surgery, but hey, whatever. I’ll be over before I know it.

For the sonogram the lab technician said I just needed to loosen my pants. It turned out he needed more access to the area, so he tried to tug them down a few inches. Well, I have worked quite hard to put on extra fat so that I have enough for the surgery, so all my pants are quite tight. He hemmed and hawed about how tight they were. I was slightly embarrassed, but because of being “fat” but because of him thinking I was purposefully wearing such terribly tight jeans – as if I’m a 20 year old going to the disco. It was quite funny.

This ties in nicely with where the story left off – post mastectomy in the hospital. This is because I chose not to get reconstruction at that time. I’ll tell you, a large part of me wishes I had gotten reconstruction immediately. I mean, I’m not going to dwell on it. One never knows, it could have been terrible to do at the time. But I chose not to do it immediately for 3 reasons:

1-the counselor said that they recommend waiting so that one can adjust to the mastectomy first. Psychologically, it is preferable. 2-I wanted a bit of an “upgrade” and to do it immediately that would not be possible (so what’s the point if I wouldn’t end up with what I wanted?) . 3-I just didn’t have the information necessary to know in what ways it would really be preferable. I had so much other more important information to be researching/processing.

The upsides however? Most importantly, at the time of my mastectomy I was dead set against taking the right one as well. Now I am more than happy to do it and am volunteering for the procedure. The other pros/cons are little in comparison to that. And for the moment I figure that’s most important for me. Anyway, I can’t change it so no point in dwelling. I’m on my way to surgery in September and that’s plenty to think about!

Tomorrow: back to the story of mastectomy recovery….

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Filed under breast cancer, if I'd known than what I know now, life, reconstruction ("upgrade"!), recovery, surgery, this time THIS year