Monthly Archives: June 2007

Surgery

I slept quite well, though woke early. My sister was there. The nurse offered “a little something for my nerves,” a small pill. I left it on the night stand. “I feel fine. I don’t need it.”

“We recommend you take it regardless,” she urged.

“Really, I’m fine. I don’t like to take medicine unless absolutely necessary.” (Ha! Wouldn’t that change!) She shrugged and left it on my nightstand.

Jen and I hung out for a little while. My entire ward was women all there for BC related surgeries, and I liked that thoughtful organization. My roommate was Marin, a mother of three there for her second go-around with BC and on the same surgery schedule. They also avoided putting a fresh patient in a room with someone who was just ahead of them in the surgery process, as not to scare or stress the “new girl”. Jen and I explored the place as if it were a resort and we just liked to hang out there. I wasn’t even nervous. Finally, she and I returned to my room from goodness-knows-where, and the nurse was there with a hospital gown. “It’s time to change.” I just stared at her. “It’s time to go. We need you to put this on for surgery.”

Completely accustomed to being top-naked in front of strangers by now, I took my last chance to show off my small but beautiful rack. Too bad the nurse didn’t have Mardi Gras beads to throw at me. The left one was just going to have to retire without that sophisticated honor.

Off came my top and I put my arms out like a zombie to accept the cotton garment, which opened via a line of snaps in front that ran from my neck to my armpit on either side. (How handy!) Now I was scared. Now I was sad. NOW I wanted that “little something” for my nerves. Why, oh, why didn’t I have a warmer attitude to drugs?!

Tears started to stream down my face. There was no more distraction from why I was there and I admitted my fear. I’d never even been in the hospital before, much less under general anesthesia. Jen asked me if I wished mom were there. I said no, I was glad she didn’t have to watch me do this and I believed it. I laid on the gurney. They took my glasses and the world went fuzzy as well as wet. Jennifer walked beside me as far as they allowed her, holding my hand. I really did not want her to leave me. I felt a little silly, as no one on TV or even anyone I’d seen on gurneys in the hall ever rolled by blubbering. It was not my “bravest” moment. I suppose I didn’t jump up and cling to my sister like a money, so it could’ve been worse.

I got into the prep room and Dr. Awesome came to say a few words to me as I was given the first steps of anesthesia. He comforted me and said he understood that I was scared but the he was doing my surgery and would take very good care of me. His words and presence did help. I stopped crying but my face was all blotchy, swollen and red like it gets if I really cry. (It’s like I’m allergic to tears or something. I’ve been accused of having the measles before. You can imagine that it helps my comfort level about crying in “public”.) Next they wheeled me into the very cold OR. The assistants were struggling with English, so I proudly got a little Dutch practice as I helped them get me positioned correctly. I looked over and saw Dr. Awesome in the corner, back turned, looking at my chart, seemingly taking a private moment to prepare himself. And then blissful ignorance…

Some hours later, a nurse would wake me up once or twice, seemingly just to get me to respond. I remember being unhappy that they woke me. I was still under the blanket of heavy sedation, but I could tell I hurt and I wanted to sleep through every minute of discomfort possible. Finally, they came to wake me for real, with my sister and Del in tow. They looked down on me lovingly and I asked, “Hey…so who won the game?”. This was June 28th and the soccer World Cup was on. Now, I like me some WC, but even I am impressed with myself for that.

They visited for a little while and I was glad to have them, but mostly I just wanted to sleep. The rest of the day was a blur of discomfort and fatigue. I was tired and I hurt, and I couldn’t move, that’s all I knew. They had taken 12 lymph nodes, I would find out, which seemed to cause the worst of the pain. For this first day they had doubled a sheet over with my arm in the fold and the length of the sheet running under me, so that I could not move my arm accidentally (or on purpose for that matter). Nurses came in here and there and pressed on my chest, nearest the armpit. That hurt a lot though I was too out of it to care strongly about much of anything. Apparently I had some blood pooling just there and they stuffed some extra material in to increase the pressure and force the fluid to drain. Suddenly I thought a bed pan was the most wonderful invention ever, so grateful I was not have to face walking and moving. At the moment that seemed an enormous task. I just wanted to lie there and sleep for the next month, to wake up feeling all better. Unfortunately, they didn’t go for that idea.

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Hospital Check-in

The afternoon before surgery, my sister accompanied me in. I felt fine, I was ready to get it done. We were told that the doctor wouldn’t be free for a few hours, so we should go have lunch and return. We joked that I needed a beer, and the nurse informed us that would be no problem. “Really?” we asked incredulously. “Well, if you ever needed a drink, now’s the time, right? I’m not saying go crazy, but one couldn’t hurt.” Well, where do we go then?, we wondered. “Oh, they sell beer in the cafeteria,” the she offered. Man, I love Europe.

After lunch the nurse sat us down in my room. Still, I felt casual. She took some information and answered any questions. She was very attentive and kind. I would spend the night in the hospital and they would take me in to surgery as soon as the ER was free in the morning. Hopefully 9am, but you never know. When she mentioned the time when my sister would have to leave, I was a little less fine. The lump came to my throat. Eveything was cool as long as I was not alone, so it seemed. As usual for the hospital, the kindness of the nurse made me want to emote even more. She said it was no problem for her to stay past visiting hours.

Eventually the radiologist came in to see me. He sat down on the bed next to where I was sitting and said, “so, you’ve had some trauma to the spine.”

It was actually a question. I shook my head. “No.”

He looked at me seriously. “You must’ve fractured your spine.” No way. I could think of nothing. He pressed. “You had an accident…”

“No…Never.”

A fracture was our only hope. I was getting worried. Wouldn’t I know if I had fractured my back?! He reached around and gently touched the damanged spot. “There.” He did not touch the spot that had been hurting for days. Instead, he touched several inches down, and as soon as he did, I knew what it was. Understanding burst open in my head. “Oh, that.”

Long story short, I had taken a fall at work back in February. I felt something was wrong. I tried to work but could not even roll my suitcase with one hand. My company sent me to the airport doctor. For weeks they gave me muscle relaxers and insisted it was a soft tissue strain. I went back several times complaining of continued pain and asked for further examination, but they never did and x-ray, and never investigated further. Even today, 18 months after the fall I can tell when you touch that spot. Not only had I not known that I’d fractured the vertebrae, but their negligence had led to this scare. But boy where we happy. Especially when Dr. Rads breathed a sigh of relief. “Good,” he said, “because if there was still any possiblity is was cancer, we would have to cancel your surgery.”

Later that night Del showed up after work. Handsome in his suit, he was also carrying a small handled bag. It was a present for me before surgery – the watch that I had been eyeing with my sister earlier that very day. Surprisingly, when they finally left, I accepted the sleeping pill the nurses suggested I take and went right to sleep.

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On Fighting and Crying

Ok, in light of all the past week’s happenings, it time for a reconnaissance. (And as anyone who goes through this knows, military terms are precisely the most appropriate, because all this now becomes a battle of the cells, the Goodies vs. the Badies.)

The spinal scare put everything into perspective. (And there is always “perspective” to be had. Remember, no matter how bad off you are, there is almost always someone who has it worse.) So here’s the situation: My boob is now officially trying to kill me. It’s that simple. I know there are some good soldiers left in there, but sometimes you’ve got to make sacrifices. They’ve been infiltrated by the Badies and they just can’t be weeded out. Left breast, I loved you most, and this is the thanks I get. Off you go then. “Y’a dead ta me!” Ptuh. (*spits on ground*)

While I am not happy about going to the hospital, my attitude now is, “Get ‘er Done!”

While I’ve given the gory details of every difficult moment, don’t let that misconstrue the tone of life on these days. I still went out for drinks and generally enjoyed the visit of my sister. Watching both parts of Kill Bill seemed terribly appropriate and inspirational! I’ve developed an M.O. for the emotional ride and it goes like this: if you feel sad, sit down and just let it out for 5 minutes. You blubber all you want. Give yourself a break.

My sister taught me after mom died that mourning is hard work but it has to be done. It’s not fun, but being tough all the time is just not real. The emotional work also has to be done or it will come back and bite you on the ass later. With breast cancer, it didn’t even occur to me (aside from the spinal scare) that I wouldn’t ultimately “win”, at least for the time being. But there are still things to mourn. I’d be lying if I said there weren’t. As positive as you are, it just plain sucks to be doing this. But when your cry time is up, pull yourself together, put it back on the shelf where it belongs, and get back to life. And it works surprisingly well.

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How will a simple x-ray detect cancer?

Jen and I went to the hospital and had the spinal x-rays. She is a smartypants and explained to me how an x-ray would leuvenwork for such a situation. When a bone experiences trauma, the body, of course, reacts to repair it. Cancer on the spine would register as a trauma. The resulting repair activity on the bone would leave a trace in the form of calcium deposits. The x-ray would show such an area; that’s what they were looking for.

The x-rays took but a minute, but it would be hours before the final word came in. Jen and I decided to make a nice afternoon of it in Leuven, so we went for a lengthy lunch in the beautiful town square. Believe it or not, we had a great day and managed to forget all about calling for the results. We called just as we stepped on the train home, catching the office only minutes before it closed. It appeared not to be cancer, but we’d talk details the next day. Whoopee!

That night as I am preparing for my last night of sleep as the “pre-me”, I swallow my pride about being the first to say it, and I offer the sappy words to my bf. (You know, those three.) It just feels too silly to not to say it at this point, if for no other reason than to let him know that I recognize what his level of commitment means, even if it’s not been said. And to acknowledge that accepting said commitment from him and sharing such an intimate experience means the same from me. Certainly I don’t expect to die under anesthesia. That’d be crazy. But you never know. I wasn’t into tempting fate just now.

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The Scariest Day of my Life

It was his assistant who called. She said, “we need you to come back in for a spinal x-ray today. We have found a spot on your spine.”

I don’t remember the rest of the conversation, but it was brief. I put down the phone and told Jen the news. I was due to go into the hospital the next day for my surgery. I didn’t really want to spend my last day there as well, but the caller had made it clear this was something “very important”. Truly, I have never been so scared in all my life. I had thought that mastectomy and chemo were bad, but even then I had been looking at recovery. This was something else.

Cancer on the spine is baaaad news. I called Del and told him. I remember standing in the kitchen, by back to my sister, leaning on the countertop with my elbows, white flip phone pressed to my ear, the weather hot and sticky, the room quiet. He excused himself from the phone rather quickly. This is the only time I have ever heard him struggle to keep his composure. I mostly remember the feeling of panic; a feeling of wishing to have back the previously terrible-seeming news from the other day. I didn’t know any hard facts about cancer on the spine, but I did know that that meant my cancer was metastatic (spread to other organs) and that that automatically upgrades my cancer to Stage IV. In one moment my cancer had gone from highly curable to “advanced”. For the first time I had a real fear of dying. Absolute terror thudded in my chest. And I had thought my inherent feeling of security was knocked out before

Thank God for Del once again. Jennifer and I had been getting ready to go to an internet cafe. We needed facts; we couldn’t have our suppositions getting the better of us . (Del’s place had no internet as of yet.) Before we got out the door he called back and, in perhaps the smartest thing he has ever said to me, he adamantly advised against going online. (The implication of what he’d found there was doubly frightening.) I argued with him a bit about needing information. He stood his ground and insisted that I call the doctor directly instead. The internet, we had all discussed, was full of all sorts of information, much of it incorrect, sensational, or at the very least, claimed with some personal agenda behind it. “You really need to know exactly what they’re talking about. Do not go fishing for facts that may or may not actually pertain to you. Ask him what this means. That’s his job.”

In another show of what appears to be a pattern of my heroics of the time, I once again had Jennifer call for me. She got through directly to Dr. Awesome and I heard “uh huh…uh huh…oh!” Her posture crumpled in the act of releasing a held breath and 1,000,000 pounds of pressure psi. Her hand fluttered to her chest. “Whew!…(a nervous half-giggle)…thank you!…Ok… Ok…oh, Thank you!…Ok. Bye bye.” I was on top of her with anticipation.

“He thinks it’s just arthritis,” she got out before taking a moment to swallow deeply and still her heart. We processed and savored that for a few seconds before continuing. “There is a spot on one of your vertebrae. But because all of the blood and bone tests were negative, he thinks it must be a random spot of arthritis. They need to check to be sure though. He says you don’t have to come in for an x-ray if you don’t want to, but he fears you won’t sleep tonight if you don’t.”

In what is surely the most dramatic moment of my life, we stared at each other silently for a moment with big grins on our faces. What came next can only be described as emotional diarrhea. We roared with laughter at the release of stress. Heeee heee hooo hooo haaaa haaaa. (Urm…Yes, that’s what I sound like when I laugh.) We positively howled. And somewhere in the middle that laughter turned into sobs. I am embarrassed at revealing such an intimate moment, but I said I’d be honest here. We were clutched in a tight hug by the time we finished. Then we pointed at each other and giggled again at our outpouring of theatrics. We were a right old couple of Spanish TV novela starlets!

My previous “worse then expected” diagnosis was looking like an awfully good deal about now, and I was eager to have it back. While indescribably relieved, I was not home free. A random spot of arthritis seemed strange at the age of 30, especially to manifest itself on my spine the very week I was being diagnosed with cancer. Such an easy resolution seemed too good to be true at this point. So off to Leuven we would go.

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Wonderful Men and Well-Meaning Friends

On the hard day of receiving the results, I was not able to call my bf until the train ride home. Of course I wasn’t going to get into it on the cell phone, him at work and me in public. I just told him “it is not what we’d hoped,” and that we’d speak that night. While it was not the first thing on my mind, I had mulled over the implications on my brand-new relationship and made a decision.

When he got home, Jen and I told him the news. It was no surprise to any of us when I suggested he and I go in the other room to talk. We settled comfortably on the bed and I explained to him that three months into a relationship was a little soon to ask someone for the kind of commitment that would be required of him. Immediately he interrupted in a worried voice. “I don’t want you to break up with me.”

To be honest, I had a feeling he was not going to bolt. He seemed like a stubborn and committed guy. But I dared not expect that. I was happy to have his words above, yet still I dared not cling to them right away. I proceeded to present my suggestion that we call a hiatus to us and, “once I’m back on my feet, we can decide if we want to try again. I will harbor no ill feelings whatsoever.” He said doing that would make him a “coward.” I repeated that it’s not like we’d been together for a year. Three months doesn’t obligate one to make any personal sacrifice if you ask me.

“I want you to move in,” he blurted. Again, rational me was keeping control over (happy, relieved) emotional me. I encouraged him to take some time to think about this decision. “You have never taken care of an ill person; I have. Trust me when I say that you have no idea how difficult it is. Please think carefully about this.” Stubborn thing that he is, he would hear none of it. I was moving out of my shared, hot, 4th floor walk-up apartment and into his beautiful place. I chose to keep paying on my place for a while, just to be safe and to provide a bed for the continuous trans-Atlantic visitors I was sure to have. He and I had never even said we loved each other.

In what I thought was nothing more than a passing occurrence, Jen and I went to my apartment to access the internet, and after 45 minutes on the laptop I developed a sudden, sharp pain in my upper spine. Just below the neck I had what felt like the most severe of cricks. I assumed it was from bending over the computer, though it had not gone away by that evening or even the next day when we joined friends for a few beers at the outdoor haven for expats, Place de Luxembourg (or “Place DeLuxe” just outside the European Parliament building). Standing at a table drinking, a wince led me to divulge the pain to my dear friend P. Helpful as she is, and unfortunately knowledgeable about cancer, she advised that I should call my oncologist. “You might think it’s nothing, but that’s what happened to [personal information] and that’s how we found that it had gone into his spine. Make sure you bring it to their attention.” I reminded her that the tests had shown nothing. She pointed out that he had had tests too.
This was my first taste of how life would be from now on: nothing was “just a little pain” anymore. I would learn to listen to my body with a suspicious mind. What she said concerned me but I was hesitant to “bother” my oncologist.

Imagine my surprise when he called me about a “suspicious spot” on my still aching spine two days later.

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Last weekend of duel-breastdom and decent showers

I’m posting a lot right now, but a lot was going on at this time last year:

My sister Jen was very smart in presenting the news to my family, in that she avoided saying that it was worse than we expected and instead focused on the fact that the news was to be considered “good”. That is, that it had not spread anywhere else. That was one a point one couldn’t argue with (not in my family, who really had a concept that it could be worse).

I was exhausted from the day, but I woke up often during the night and very early the next morning. Crying always comes a little easier in the company of sleep deprivation so I took advantage of a little private morning blubber. Jen was still asleep. Unable to lounge comfortably in bed – one of my favorite things to do in the entire world – I was wide awake and had to get up straight away. My friend Johanna called and I took a stab at telling someone the news. I got a little choked up, so even though she could barely understand me (and surely hardly believed what she thought she heard) she got that it was bad. She had never seen me upset over anything. Actually it felt good to tell someone. Vocalizing something is part of making it “real” I find. It sort of ties together the mental and physical aspect of how something is affecting you (My fellow anthropologists will dig that one!) and that was needed. After, it was time to take the bull by the horns. I felt it was a good time to tackle a little of the information the breast nurse had given me, and to generally start educating myself about this cellular freak out of a disease.

Most memorably, one brochure contained the personal stories of many different women. According to my journal: They both touched me personally and didn’t. Everyone was different. I was trying to maintain my objective, professional distance. Then one lady’s story said oh-so-nonchalantly “even though Mary Moo has had other physical discomforts to deal with, like Multiple Sclerosis and…” I don’t even remember the rest. (nevermind the fact that there was MORE tragedy in that sentence.)

I realized that one of the only “good” things about all this was my subconscious feeling of security that, given this, surely my number for terrible life things was up. (As a family, this was already over the line of what you would expect/is fair…from anyone not belonging to an unrecognized minority, not chronically suffering from any more financial challenges than most folks, and just not being born into a less than First World country…) But reading that this woman got cancer AND MS? That’s just fucked up. And they called it a ‘physical discomfort’?! They dropped it like it was an quiet fart and no one would notice how rotten it really is.

But I knew. And when I read that a chill went down my spine. Well, it would have were that not a bit dramatic for my taste. So, a figurative chill went down my spine. But an almost unnoticeable (almost) shade of darkness tinted my vision of the world. Literally and Figuratively.

To clue some of you in a bit, MS is what had my mother struggling for 20 years and bed-ridden for 10 more until she passed. I’m rather pissed to realize that technically I still have to worry about that too! Grrr….

My sister asked if I had broken the news to my best friend Wendy in NYC. I said no and that I didn’t want to call her. I didn’t want to admit it, but I was feeling a bit sore at her because I hadn’t heard one peep from her since this whole “maybe cancer” thing start several weeks ago! (My mention of her in a recent post was a little out-of-sequence.) I’d be damned if I was going to go to her to give her the news. If she wanted to know she could damn well call. Jen suspected that Wendy was simply scared to call because she was afraid of the answer. So I agreed to call her, but telling Wendy was like telling a sister and sassy as my attitude had been, as soon as I heard her voice I could not talk through the lump in my throat. Wendy probably thought it was a heavy breather until I handed the phone to Jen, who gracefully took over.

Sure enough, Wendy had been procrastinating. (Doesn’t please me, but I do understand.) She and Jen chatted a while, until I was involved enough in the conversation for Jen to be serving as an intercom. Past my weak moment, I grabbed the phone and said “Hi, my friend…”. Again, I heard her voice and I had to thrust the phone back at my sis. What a silly wuss I am! No way would I have gotten through the family calls without freaking them out!

My life was suddenly about several categories of stress: medical, financial, bureaucratic. In interest if length I won’t start all the details here, but the situation was that my Belgian residency and health insurance had lapsed on the 1st of the year. (Hence, the reason I had gotten the mammogram the year before! How’s the for a tasty dish of cruel irony?) My American insurance was of doubtful use. So, on top of everything else, I had to figure out what to do there. My last weekend relaxing started off with me making bucketfuls of calls to the US to start the process for having my coverage apply to my surgery. Fat load of good that would do. But I’ll get to that.

Meanwhile, I did have one last weekend of duel breastdom and normal shower-taking. I wouldn’t see either of things for a long time…

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