Monthly Archives: July 2007


*A note before today’s post: if you are going through this and read the comment from a day or two ago that I wouldn’t take a shower for 6 months, don’t panic! That’s not normal; I had some weird healing issues. Generally you should be able to go back in the shower by 4 weeks post-surgery is my guess. Now onto today’s post….

I’ve heard that the most important thing about a dream is how it makes you feel when you wake from it. So, when you have that dream that you’re snuggling with kittens but you wake up scared to death, you have to look at the dream in the context of that feeling to determine what the dream is telling you.

I was having lots of dreams these days. In the weeks leading up to this day in the hospital I’d had two particular dreams that left me feeling like they were very important. In fact, even though I cannot find where I may have written about them (cause I’m sure I did) I do more or less remember them.

In the first one: I am at a bar in NYC. It turns ugly. Girls are getting attacked and I watch from a hiding place up high above the action. Eventually only I and another person or two are left there. We run in escape across a dark barren field, still in the city. I don’t know where to go to be safe. I ask the other person near me, “Where are you going to go?” She says, “There’s a safehouse for communists on the lower east side. I’m going to go there.” I say, “Yeah, that’s where I’m headed.”

So we go there, to this several story house that – as advertised – is some sort of “safehouse for communists”. (I just can’t get over how silly that seems.) Now let me clarify that “communist” isn’t a bad thing here. While unpopular, this house is not like a harbour for the likes of Stalin. The people living here are pretty much your average granolas. They believe in helping one another and living as a symbiotic group. They are socialists really.

They kindly accept me in and let me stay. But I am not really a “communist” and I don’t know how it works. I feel out of place and try to pretend that I know what I’m doing. I don’t understand whether we take turns cooking for each other, or if we cook ourselves, etc. I remember someone explaining that I can use any coffee mug I like. I just wash and put it back for the next person when I’m done. As we all sit and drink coffee pleasantly, it is announced that it is our time to do community service. We all go out ont the porch that over looks a filed and then the highway. There are empty potato chip bags everywhere and we decide our service will be to pick up the trash from the field.

Then I am on the porch and my friend Wendy is there. Here it gets fuzzy but I remember trying to make a phone call but the numbers melt off the phone. I end up taking off my shirt and showing her my scar.

What’s the deal with this dream? I think the “communists” are the Belgians. Since my conservative friends have long frustrated me by oft-confusing socialism with communism, and in reality it is the Belgian’s socialist government and ideals that are taking care of me. (Because the American system sure isn’t.) By opening their medical system to me, the socialist Belgians are welcoming me into their world and taking care of me, even though I am not really one of them.

The 2nd dream was that I had something in my foot. Something foreign in my big toe. We went to get it out so that I could walk. We cut open my big toe and there was a huge grape in there, which we take out. One of those big fat dark purple ones. I think that dream is more obvious.

Enough psycho-babble for you today. But if you’re going through this, pay attention to those dreams. They offer interesting insight to the things that are going on behind the scenes!

Next up, I’ll finally explain the mysterious health insurance situation…I have to travel again so it may take a few days to post, but if I don’t get it up by Monday, I’ll double post (or more) once in range of some wi-fi. 


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Journal-Day 5 in hospital

DAY 5 (SUN. 09:11 Universiteit Ziekenhuis Leuven, Room 155 Bed 1)

Last night I tried to go to sleep without using my pill. I was comfortable (relatively) and unstressed, and I was tired. But my mind kept running…with completely useless things. (For example, looking at the beautiful lilly of some sort that Pam gave to me…I’m thinking, “why on Earth is my flower in a pot of green Jell-O? And why isn’t it dying? Very strange.”…I’ll spare you the rest of those thoughts. You get the point I’m sure.) I decided to stop competing with myself to heal “better than” the norm. If they give me a pill, to take the pill. And indeed I slept in a lovely way. No dreams that I remember this night.

Had breakfast with Marlijn (my roommate). Yet. Another. Orange. But I ate it like a good girl. And Marlijn goes home today. I’m quite happy for her. That competitive streak feels stupidly insulted that she gets to go home early and I do not, like I don’t get the gold star for “Fastest Healing”. However, it might be nice to have the room to myself. Last night she talked on the phone a few times. (Course, it’s ok when I do it! but when she does it it’s just slightly annoying. Humph.) Thank goodness I brought my own earplugs. Didn’t help at all, but made me feel just smart and smug enough to be satisfied anyway.

But she’s told me that her husband has informed her that they have nice fresh tomatoes in the garden, and they are instructed to put her favorite chair underneath the chestnut tree (no, the tomatoes aren’t instructed, her family is, you smartass), where she will relax during the rest of her recovery. Sounds nice. A lovely little daydream life from The Shire.

Note: I call Flanders – the Flemish part of the country – The Shire. To a foreigner Flemish people can seem to be part of a secret, sweet seeming little culture. Everything seems introverted, quiet, quaint and cute. Just like the Hobbits’ land in Lord of the Rings. Imagine how tickled I was to be told that the early little dinner I am served in the hospital is what the Flemish call “viertjes”. That’s “foursies”…just like the Hobbits have!

The incision is mostly still numb, thank goodness. But I feel a int bit more each time the nurses clean it. And I feel everything by the tubes in my side. There’s a little tingly itch that says bacteria wants to come in and the skin is anxious to close over it. Almost every movement is felt up to the wires in my skin now, though it’s often more eerie than painful. It’s hard to separate the two actually. It makes me cranky, like Chinese water torture.

–I took a nap. Didn’t realize I had fallen asleep and woke with a real start when del showed up and woke me with a kiss on the lips. The prince charming comment is far too easy…Went out on the sunny terrace and I sat in a laz-y-boy someone had dragged out there. Then aga and michel came. Then rode and jen came, bearing ben and jerry’s Cherry Garcia. It was a great time, actually. Del finally left and said privately that my friends should not visit too long. And he was right. I hadn’t noticed concertedly till then, cause we were having fun, but it’s true: Damn my friends are loy-al (or else lazy 🙂 , and stay allll day long. I finally realized I was tired and said I was “kicking [them] out”. Jen then washed me again, and plucked my brows so I feel domesticated. When dinner came she went to the cafeteria and bought some stuff so we could eat something together. And we read my friend wendy’s long letter again. We had fun tearing up at the proper parts, laughing at the proper parts, and reading certain jokes and comments out loud in the proper voices. We got into bed and we had a good long talk. Some scary stuff. Some funny. Now I’m tired…

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Today a post from my Journal

The last few days of my hospital stay were at times so much like a World Cup Soccer BBQ that I felt sheepish when the doctors came around. Some nights I had four or five friends visiting. We’d close ourselves into the lounge with TV, they’d get some beers from the cafeteria and some juice for me and we’d have ourselves a fine evening, all things considered. It was just all sorts of wrong. Hospital are supposed to be yucky places! Everyone jokes that it’s pleasant enough that we should meet there to watch the soccer even after I’m discharged. The hospital is, they point out, the safest place to get really drunk!

For other events on days 4, I point to some journal entries:

–Jen presents the idea that my scar is like a tattoo (but much less passé and unfadish). A marker of a rite of passage. Like a tribal tattoo (says me). “it’s badass” she says. I am really taking to this idea.
–Some of the sensation is starting to come back. Which is both good of course and terrible. Last night, and again tonight, I got a little irritable, tired, painful, impatient. I cannot quite 100% put my finger on where the pain is. There is something deep in my shoulder. And along my side I guess. I think the shoulder pain is from the surgeon digging around for my lymph nodes, deep into it.

Today I realize it is (also?) from holding my shoulder taught. If I gently massage my left shoulder with my right hand, the back of the shoulder, the pain goes deep and hits the spot. Definitely the feeling is coming back to my skin and I can feel the tubes and wires sticking out of my torso. Before it was nothing. Now I can feel them. It might not be the heaviest pain in the world, but it sure is gross, cause I know that it is tubes and wires sticking out of my side like some mad science experiment. The grossness makes the pain 10x worse.

The bitch nurse tonight is not my regular one. They give me a shot in the belly every night against flebitis. Tonight when she did it, it hurt. And she pulled on my tube roughly (relative to what should have been). I think she must care a fraction less since I am not her regular. Grrrr.

As I lie in bed trying to sleep I feel the sensations. There is a bit of a weighted pressure that is in movement, mostly traveling up and down the main part of the incision. It’s not at all unpleasant. Like a snake slipping over grass. Smooth and consistent. It hurts there a bit as I breathe deeply, like a bruise in my lung, though must less than when I had the supertight bandage on. There is a here-and-there, more then occasional, skittering, tingling that also moves by the tube entry in my skin. By the wires that hold it in. Across the incision. The feeling of a stick poking harshly into my arm pit, where it hurts the most often, when I try to fully relax my shoulder. Surely my back is generally still achy from unnatural posture as well, though of course better than previously.

Only two more days to go in the hospital! I will be ready to leave, though I cannot imagine that in the US it is 48 hours maximum and sometimes an outpatient procedure. This seems absurd. I think, not for that last time, that I am happy I decided to stay.


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Back in the Saddle Shower

In the present, my hair is in an annoying stage of growing out. It is starting to regain its former curl, which is great except that it’s still short. So curls = crazy freak hair. The funny thing is the observation that my boyfriend made yesterday. He said, “honey, do you realize that all your hair fell out and you were bald for months, and you never complained once? And now you complain about your hair!” Strange but true.

Back in our story where I left myself – in the hospital having seen my scar for the first time and made quick friends with it – I also have to start physical therapy today. I hate it. It feels too soon and I feel panicky about hurting myself. That could be because it hurts! The guy comes in, sits me in a chair and tells me to move my arm 10 times this way and that way. When, for example, I can only raise my arms a few inches, he “helps” me out by yanking it up over my head. He’s counting gruffly, “one…two…three”. In my mind I’m whimpering, “ouch! ouch! OUCH!” I swear I can feel things creaking and ripping, even though it’s pretty numb. Well, I thought it was numb until it started hurting! I have this fear (irrational, so they say) that I m going to split open the incision under my arm. …The PT also has a trick that Dr. Awesome has: when they want me to lift my arm more than I am able because the tendon that runs along my armpit is pulled taught, they will say “here, try this…”, grab my arm and use their fingers to push up on that tendon very hard. I wince and scrunch my my face and try hard not to whimper (or punch them in the crotch). True, I can raise my arm a little higher for a few minutes after, but I really have a hard time feeling that it’s worth it.

That night my sister Jennifer asks if I want to take a shower. Oh, do I! I wish I had realized before surgery that I wouldn’t be able to take a normal shower for 6 months! Now, only 4 days into it, I felt pretty skanky. I was a little weary of the physical obstacles to this dream, but was more than happy that my sis was up to the challenge (of both encouraging me and helping me do it).

My ward had a special bathing room, with lots of room and all the helpful amenities one could think of. Jen and I had quite a time figuring out how to wash me without getting my upper torso wet, not to mention her. Eventually we gave up the idea of her staying dry and just decided she’d be getting a shower also – voluntarily or not. We locked the door tight and managed to bungle our way through carefully. I felt so very good afterwards. Clean and fresh. But I couldn’t brush my hair and my whole upper torso ached from the effort. I ended up having a good fat cry. I sat on a little stool facing her, both wet and wrapped in towels. I was so bleeping tired of being careful of every motion and unable to just relax and move naturally. I blubbered for 5 minutes as she looked on sadly. And for the first time it wasn’t just cause I hurt. I was actually mad and upset at having to go through all this. I admitted that it sucked and that it just wasn’t fair. It’s true, and I was really sad about it. Mostly, it’s very hard to get your head around the fact that one day, you feel fine and they tell you that you’re really sick. Then they make you feel really sick, and tell you that you’re better. It’s a mentally challanging concept to accept and put up with.  

I was glad to have someone who would encourage me to get that out. It was a concept that I would struggle with again. I know we weren’t the first (or last) to say it, but “There’s got to be a better way to build character.”

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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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I’m coming!

Back from Turkey here. I have to attend to life for a day or two and then we’ll be moving along in the story again. Thanks for your patience!

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I just wanted to drop a very quick note to say sorry for dropping off the face of the earth for the last week. I am on a family holiday (still one week to go). I had well laid plans to post a note before leaving, but Little Miss Organization here had our flight time wrong by several hours and I had to pack and leave the house with 30 minutes notice! (Can I still use “chemo brain” as a legitimate excuse?) Turkey is breathtaking, so I’ll go enjoy it a little more. Be back in just over a week with the next chapter!

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