Monthly Archives: August 2007

A Little Note from my Travels…

I just had to share: as I am in the midst of this marathon of travels and errands in the lead-up to my big reconstruction surgery, I have been doing very well. I feel great. Really great. Forgive me if I said this already (I don’t think I have, but if I’m mistaken then just consider that I mean it enough to say it twice!)
but when I was in Turkey with my family at the beginning of this string of trips, my sister wanted to know how I was feeling about things in general. Was I fatigued? Did I feel I could keep up? etc. etc.

I told her that I’ve reached a new, important point in the journey. The point that I was looking forward to since the diagnosis. The point that I day dreamed about to keep my spirits up through out the rough days: the day when it all feels like just another thing that happened in my past.

Now, it’s a little ambitious to say “just another thing”…it will never actually be “just another thing”…but that notion has come to seem real. One day I just realized that on all our travels, as we met lots of people along the way, the task of presenting myself to strangers felt different. For so long, the breast cancer makes up so much of you, of your everyday experience. It is the biggest thing in your life for a long while. While I’d never (of course) meet someone and say “Hi, I’m Sarah, I spent the last year in cancer treatment. Isn’t that crazy!?”, the idea always flitted though my head. For a long while, it actually felt like there was nothing else to say. That it was disingenuous to make small talk about other stuff.

But not now. Now when I meet people, it doesn’t even jump in my head as something “interesting”. It’s just a story from my past that seems pointless to tell them out-of-context. I explained this to my sister in the most casual fashion. But it made her eyes well up. She said she had been waiting to hear me say just that. I was surprised by the emotion it stirred in her, but then I realized what I had just told her: in the mere ability of my thoughts to be taken up by banalities such as whether or not I had promised to meet friends for dinner or what we’d do on our vacation, I’d gotten my life back! In my life inside my head, it was back to being “all about me”, not about it. It made me want to well up too.

It was a milestone I’m glad didn’t completely pass by without noticing, and I thought you’d want to take note of it too. It will come your way, I promise. Keep an eye out for it and take a mental picture of it as it passes. It will look like a dull shot to some, but it will always be beautiful to you.

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My Cancer Twin

Back in early July, before I’d gone to Spain, I had lunch with an American friend of mine. I hadn’t seen her since before all this began, and we obviously needed to catch up.  I’d known Jess since before I moved to Belgium, though I didn’t meet her face-to-face until I got there. We’d been “set-up” by a mutual professional contact, as we had the same interest in international education, and thus a friendship was born.

For our catch-up, we met at a local Mexican place, me still in a chest bandage, but now “tubeless”. She had lots of questions and I gave her the entire story. At the end, she told me about her own medical issues. Namely, that she had a very mysterious symptom that no one was able to diagnose: every time she drank alcohol, even two sips, she would experience a pain in her neck, which would radiate out. Sometimes it went all the way down her arm. It usually lasted about 90 minutes.

In that phrase that people would begin to say so often, “of course, it’s nothing compared to your problems, but…”, she described it to me.  (I always hated this. Of course, it’s good if my situation made others put their problems into perspective. But at the same time, I did not want my friends to stop telling me about themselves. It’s not like I ever felt that other people should suddenly decide their lives were perfect in the face of my problems! Nor did I think everyone was obligated to compare their problems with mine. Cancer is a pretty hard card to beat! And everyone has got their own drama to deal with.)  She told me how it was getting worse, how she was now having to take pain pills every night, and how she was frustrated at the lack of progress in resolving it. They’d run all sorts of tests but couldn’t find a thing. Now the docs were thinking she had a pinched nerve, and I recommended my wonderful, house-call-making PT.

Then, just a few days before chemo began, I got a call from Jess with the most unbelievable news. You know that problem that was “nothing” compared to mine? Well it was almost exactly mine. Turns out she had Hodgkin’s (lymphatic cancer) and would be starting her own chemo just a week after me. I was terribly sorry for her, but was so relieved we’d have each other to go through it.

Jess was to start her own chemo two weeks after I started. Even though our chemos would be different, She was grateful to have someone just a bit ahead of her to give her a preview of what to expect. I told her that I treasured her as my new dearest friend because she was going above and beyond the call of duty since, throughout cancer, everyone says over and over “let me know if I can do anything,” or “if there’s anything you want or need…”, they’d be happy to oblige. I said to Jess, “but you’re the only one who understood that what I really wanted to say was ‘Please don’t make me do this alone’. Talk about throwing yourself on the fire! That is a true friend!”

Suddenly, the coincidences that Jess and I had in common were freaky. We were both 30 with birthdays a few days apart, were both Americans who had known each other previous to my moving abroad, who ended up – by sheer coincidence – living just few blocks apart in the same city. We shared the same (uncommon) professional interests. We were both cohabitating with our foreign boyfriends, which created the same unique combination of medical, insurance and residence issues. Our anniversary dates (with the boyfriends) were even just one day apart! At the “Office of Foreigners” we became known in tandem. If I was having trouble explaining my unusual situation, I’d say, “do you know the other American girl with cancer?”

They’d straighten up. “Do you mean…Ms. Black?”

“Yes,” I’d say. “I’m the other girl.”

And they’d say, “ohhhhh! Of course. Now I get it!”

Thus, my “cancer twin” was born. (You can find a photo of us here. I will post a photo properly once I am back on my own computer.)

I cannot say how treasured a friendship hers would come to be. Now I had someone who really did get what it was like. Someone who really did find it funny when I made a joke about chemotherapy or cancer! Someone who found blood draws, needles, stupid doctors, scary tests and losing hair all sincerely hysterical. What a relief! We had a whole world all our own. We could bitch and moan about all this and more, as long as we wanted, and never got tired of it, never found it uninteresting. She didn’t just listen, she understood. While I can’t say that I wouldn’t have traded it, for either of us, I certainly have a treasured bond with her and our experiences together cemented my feeling that Belgium really was where I was supposed to be.  You’ll be hearing more about Jess as the story goes, I’m sure.

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Week 1, Chemo 1

First of all, I’d like to say a thank you to everyone who has left me lovely supportive comments. I try to make it a habit to answer all first time commentors personally, but with all the traveling I’ve been doing and limited internet access I’ve had it just hasn’t been possible. I do thank you though. Each one means a lot.

After the first hellish night post-chemo, I am happy to say that things went rather smoothly for that first round. The French call a chemo drip a “cure”, which I like saying very much.  It’s so positive! (And, let’s hope, literal!) My drips were all on Fridays, so that I would have Del at home during the weekend days to help me through the first 48 hours if needed. On that Saturday, I wasn’t anxious to travel, but it went without incident. From taxi to train to 2 hour car ride, I slept as much as possible and basically felt like I was nursing a bad hangover. Nothing I can’t handle.  I met the parents in England and they made me feel completely welcome, completely at home and completely unself-conscious about the situation. I was in love with them immediately, and I let his mom “mother” me a bit, and I enjoyed every minute.

At her insistence, I took a nap everyday, even though I didn’t really feel like I needed one. Feeling that well just seemed to good to be true, so I didn’t push it and took rests for good measure. Even though I didn’t feel fatigued, I slept well each time.

The main thing I was worried about was my blood work. I had no idea what anything meant or what was normal or what to expect yet, but I would soon learn. I had my blood work done there on day 7, and the doctor was nice enough to explain it all. My White Blood Count was already down to 3-4,000, but she said that was to be expected. I was disappointed, and a little nervous about getting sick, but I was optimistic it would not get worse. Day 7 was supposed to be my low point, so all was well. We limited visits to the house from people coming to meet me, as not to risk me catching anything.

The subject of my hair falling out came up often at this point. I was on the look out, but nothing had happened yet. Del’s mom kindly offered to treat me to her salon, to cut my curly, shoulder length hair short. I was really fine about the whole going bald thing, but when she offered to make me an appointment I felt very sad. Apparently I just wasn’t ready to deal with that yet.  

Other than that, it was a blessedly easy 1st week. I had a few headaches. Nothing so exotic that it scared me. I had the very, very occasional few seconds of dizziness, which was quite strange. They passed before I even knew what was happening though. The most alarming symptom was the heavy racing of my heart. Sometimes, particularly during the first week, my heart would beat so fast and so hard in my chest that I thought for sure it’d be visible through my clothes. Often that happened when I was resting. I would just lie there and listen to it racing in my ears. Ka-thud ka-thud ka-thud ka-thud, it pounded. People said I was imagining it, but I certainly was not.  

I could not complain, however. All in all, one night of vomiting was a worthy trade off for the following easy week. Pssssh! So far, this chemo stuff was a piece of cake! I was hoping that would remain to be true….

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After Chemo 1

Just a quick word here, stealing 5 minutes of internet time…

 So, I made it through chemo, and the staff made it through doing what they needed to do, not giving into my pitiful state — holding my lip steady but with tears running down my face. I felt I should be embarrassed about it, but I really didn’t care. Once there was no more need to actively discuss what was happening with the staff, I was calm.

After it was over, I had a headache. The ice cream I ate seemed to stave off mouth sores and discomfort. Otherwise, I felt…weird. But not necessarily sick. I felt fragile. I wasn’t nauseous, but there was a feeling in my insides that told me the feeling was bubbling somewhere underneath, in the same way that local anesthesia doesn’t stop you from feeling peripheral pain.  Some dear Belgian friends picked us up and drove us home. I remember them joking, as we rattled over cobblestone streets, that the vibrations were good for me. I smiled and sat as still as possible.

The next day Del and I were scheduled to take the Eurostar train to England, where I would meet his parents for the very first time. Dad had said to me over and over, “you’re one brave lady, meeting his folks for the first time 24 hours after your first chemo.” I wasn’t thrilled about it, but you do what ya gotta do. The doctor had said it was possible and there was no way of knowing how I would be to travel until the day came.  

Once home I went straight to bed. Oh, have I mentioned that throwing up is the part of having cancer that I dreaded the worst?!  Seems silly but it’s true. I HATE to throw up. I will do anything to avoid it. I know it’s foolish, but be it from drink or flu, I will lie around feeling awful for days rather than just throw up once and get it over with. So, when I was able to sleep for about 90 minutes, we had some hope that I wasn’t going to get sick at all. Then, around what would have been 2 hours exactly after the end of my drip, it all started. You don’t need every detail, but I woke up suddenly and bolted to the bathtub.

Our apartment is very European in that the shower and sink are in a separate room from the toilet. The toilet is on the other side of the apartment. Small though it is, I just wasn’t going to make it. This turned out just fine because I found that I definitely prefer hanging my head into the bathtub than the toilet. It seems so much more elegant (ha!). Besides, I had immediately developed a super strong (or, perhaps, distorted) sense of smell and I swore that our toilet room smelled like chemicals. I couldn’t bear to be in there.

All night long, up and down up and down to be sick. By the end of the night there was nothing but bile, coming from the intestine. I’ve never felt so awful in my entire life. If I hadn’t known better I would have been sure that the next thing to come up the esophagus and out my mouth would be my liver and spleen. It felt like I was doing actual damage in there.

We tried all my nausea medicines. I had one, “in case” I got sick. Then I had a second type of pill in case that one didn’t work. And I had a third type of pill, in case those didn’t work. Of course, it doesn’t matter what it is if you can’t keep it down. Never before had I envied people who had drugs for the other end. All in all I suffered 14 fits of vomiting by the time the final heave came at 2am. After that I slept blissfully.

The morning seemed beautiful. The sun was shining. I had made it! I was so grateful.  I felt weak and still fragile, but my stomach wasn’t trying to leap out of my mouth, so I was happy. Now all I had to do was get to England…

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Pause

Hi dear readers, I’m afraid I’m going to have another blip of severely limited internet access for a week (hardly seems possible but it’s true!) or so. Just to warn you that there will be another patch of spotty postings. I’ll do my best though to get here though! 

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And then came Chemo…

Now I am not going to lie to you — chemo scared the pants off of me. I wasn’t very brave about that bit at all (and I’m not ashamed about it!). I got a litte weepy when I went to bed, so I took a sleeping pill to assure that I’d get some rest.

The day of chemo, I also had to get my Port-A-Cath put in. PACs are common practice here in Belgium as it spares the patient’s arm veins. Generally during my treatment I was not very detailed in sharing with people, but I wrote a brutally honest mail to my family on chemo day #1, which I can share in hindsight and which I think says it all…the only thing I didn’t share is that for the first time I really wished my mom were around.

4Aug06 (fri. after noon. Leuven hospital.)
hi family.
so i’m now at chemo 1. thought you all might appreciate being here in a mail, even if you’re not here in person. i have to be honest, i did wish for all of you today once i was here. but i have del. i’m glad i had someone form this group for the first time. it is a bit difficult today.so first was the insertion of the Port-A-Cath (PAC). ummm, that was the worst. of course there’s the fact that it’s quite a psychological reminder of what was coming in the immediate future, it just freaked me out a bit. i wasn’t prepared to feel the surgery. it was under local anesthesia. i thought i’d sit in a chair and they’d cut an inch or two and slip it in and del would be there. but it was a real operating room. on a table, they covered me head to toe with sterile blankets like real surgery and taped them on my skin so only the few inches of skin they were working on showed. they were very nice and empathetic the whole time, with a nurse watching my face to see if i was ok and asking me every once in a while if i was ok. because i was supposed to tell them if i had pain more than a little.so. i was awake. and i could even feel when they made the incision. i told him that and he said it’s normal, as long as it doesn’t hurt too much. then…just ugh. he’d tug on the vein he was inserting the tube into and he’d tell me “oh that’s just a vein. it’s going into your heart. you’re going to feel it but it’s normal” …thanks. but it still FREAKY!! feeing the vein being tugged on quite firmly (and ‘m thinking ‘CAREFUL! you’ll break it!!’), from my shoulder down my arm (a bit) and just, yeah. 30 minutes of me knowing exactly what they were doing. (“ok. i’m just going to make the pocket for the PAC here under your skin.” swipe/tug under the skin, swipe. swipe….if i could shiver in words i would.) i did NOT like that at all. and as a matter of fact i got out of the O.R., told del i wanted to get out of there, and promptly burst into tears just outside the door. now my OTHER arm is out of commission as far as lifting and pulling and showering for 2 more weeks. GRRRR!  I was shaking on the OR table. And really after. I was shaking quite a bit for a while, that upset thing I do, and probably still am a bit….i got it together and came here. they, nice as always, gave me a little consult where they explain everyhting step by step. (i blubbered through half of that too, but i’m ok now) i get a bed today since it’s my first time (you get a comfy chair usually otherwise unless you’re just lucky). then they start.so now i’m in bed. del’s reading Catcher in the Rye beside me. they gave me lunch and nausea pills to take for later at home. i have a 5 footed IV that i can roll around (jen. like the guy with beer and chips that you saw wandering the hallway). but i feel some strange safety here on the bed so i’m going no further than the bathroom today i think. they hang all 3 medicines on it, ready to go, plus saline. they inject first some neausea med’s into the IV. i get saline for 20 minutes. then i ring the bell. in that time the awesome head doctor (Dr. Neven) came by and was his usual lovely self, just checking on me. came back and gave del a kind squeeze on the shoulder from behind when he walked out after checking on his other patients a few minutes later.once i ring the nurse comes and starts med. #1… 30 minutes of that. then i ring again. 10 min of saline again. then i ring. then 45 minutes of the big red medicine. it’s strange to see the red creep up the tubes and into me. but i don’t feel anything so far, so that’s quite nice. they say i will pee/cry red for a few days. (it makes me want to cry again just for fun as i will look like a vampire! –they cry blood in case your evil entity folklore isn’t up to snuff…). then 10 min of saline again. i ring. this is where i am now. the nurse is just opening the last medicine drip, 15 minutes of #3.we’ll be finished a little early today it looks like. other weeks it will take an extra hour so they can test my blood stats first. PJ is on call to drive us home. and that’s that. i should have my hair for 2-3 weeks they say, so i won’t go all baby head at del’s parents house, which is nice. (we leave tomorrow for a week to birmingham by train. his parents are sending a car from there to pick us up in london so we don’t have to take the metro to another train. nice…) so. i’d say the toughest day so far, but the worst bit is over i think. and really, that wasn’t so bad. so far so good.i’ll write more form england and probably talk to some of you tonight.
(rae, forward this to kelly and co. if you think they’d want it. i’m not sure if it’d be nice or a bad reminder/too much reality. thank you.)
love you lots.
xxxxxxxxxxxxxx
s

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The Ordeal of the Wound

I had some weeks to recover before chemo would start. One major thing of note happened in that time: (sorry, long entry here, even for me…)

The wound healed up prettily for about thee weeks. I got my second tube removed earlier than normal as well and my sister returned to America. Then, just before the staples came out, a few drops of blood started appearing. I tried not to worry. My GP assured me it was fine, that a bit of the gash in the center was stitched a little tightly, where the skin had to be pulled tighter to close. Not abnormal, not painful. But when she took out the staples, she placed a few sticky strips over the part that was pulling to give it a little support.

From then on it got worse. A few drops turned into a few more, which turned into a re-opening wound. A week later when I went to the oncologist to give him a look, he pulled off the strips and said that was a bad move (though she couldn’t have known it). It looked baaad. Exposed tissue, red and slimy. It seems like the few drops of blood were just trapped under the tape, which meant humidity against the wound and skin. I had three pencil eraser sized ones like this.

The problem wasn’t deep, but it was getting worse. First, the gauze began to stick to these wounds, which was of great concern. One day it was really badly stuck and Julie and I didn’t know what to do. I’d left the gauze on for a day but it was not coming loose without opening the scabs that had managed to form. I called several doctor friends and the hospital and they all said the same, dreaded thing: you have to get it off or it will infect.

What followed was another act of hilarity. Julie and I bought a gallon of saline solution, as it was the only recommended thing to soak the gauze in to soften it. After the 20 minutes it took us to figure out how to open the damn bottle (duh!) the next question was: how do you soak a wound on the chest in this stuff? Think, how would you manage that?…

After various attempts, I ended up lying in the bathtub in my underwear. By the time Julie found a good angle to pour from, she was standing with one foot on each side of the tub, bending over me, slowly pouring saline on my chest with careful aim. We’d wet it heavily it, rolling out eyes at the silly mess we’d gotten ourselves in, and talk while waiting for it to soak in. Then she’s stand up, balance over me again, and pour some more. It took about 30 minutes but we finally got it off without reopening the wound too much. I really wish you could have seen it. We were totally ridiculous.

The last week in July, my boyfriend and I went to his family’s house in Spain to relax before I had to start chemo. To my great concern, the red, raw bit was still spreading. Two of the three spots grew together into one big one and the edges seemed to creep out everyday. The doctors all said it was not infected and I cleaned it religiously. I looked at it in a magnifying mirror at every cleaning, fretting over whether it had spread or whether it had been arrested. I wanted to cry with frustration sometimes as I was doing everything I could think of and it was only getting worse. My pretty little scar wasn’t going to be so pretty anymore, though that was the least of my concern. If it wasn’t sufficiently healed in time, chemo would be delayed.

I was obsessed by it, as it required constant thinking on how to care for it. I was instructed to let it breathe. Again, how does one do that for a chest wound? I was a month post-surgery and still I couldn’t wear a bra or any other fitted clothing. But I had to keep it protected. Everyday (everyday, every day) I was scheming on how to cover it best and most conveniently. I tried every sterile product on the market and combination thereof. Mostly, I built a sort of tent of gauze over it with the help if scissors and tape. Never mind that now the skin around the wound was painful, raw and peeling. (Try removing a band-aid from the same spot everyday for weeks!) Dealing with this wound was like a bad song that just won’t get out of your head. I just couldn’t stop it from being distracting, worrying and uncomfortable.

Finally, the red stopped spreading and I realized after that night’s good sleep that the nightmares I’d been having constantly all week (several per night, I still remember some of them) must’ve been due to my anxiety about the wound. I spent that week walking around the house in nothing but bikini bottoms and a light scarf over my shoulders during the day to let it breathe. At night I had to cover it with my gauze tent or the covers would stick to it.

In one more gem of a moment, Del took me into Alicante city as I needed to buy some more medical stuff to experiment with. My Spanish has decayed into what I call “traveller’s Spanish”, but I can usually manage to get what I need. This one pharmacist didn’t have any idea what we were after. I ended up indicating to my chest, that I had a wound. She reached right over, pulled out my collar and looked down my shirt! I wasn’t offended, but I couldn’t believe she had done that! She stuck her nose right in! Then, in an earnest desire to help, she said she didn’t have what I wanted, but she had something just as good to cover my wound — and handed us a box of sanitary pads! I thanked her sincerely but declined her offer with a straight face Del and I were almost on the floor laughing after we left. Ohhh, those wacky Spanish!

Otherwise, the week before chemo was a nice memory to tide me over in what was to come. I enjoyed my week in good spirits. I did my PT exercises like a good girl and reveled in the arm movement that I had recovered. The last night in Spain Del made me sit still and listen to him while he asked me if I felt ready for chemo. He stroked me hair, and I knew we were both thinking it would soon be gone. I tried to say yes, but tears rolled down my face. I was terribly scared and just hadn’t allowed myself to stop and think about it until then. He was foiling that plan, damn him. Distraction had been working very well, thank you very much. He just held me for a few minutes until I’d had enough and was able to distract myself again. I just didn’t want to think about it. One step at a time was the way I was doing things. One step at a time.

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