Little Victories

I promise I am working on the next part of the diagnosis chapter. Meanwhile, I thought I’d share a couple of sweet-tasting news items.

One-I got the results from my gene testing. They were (drum roll)…surprisingly…negative for both BRCA 1 and 2! I am kind of shocked, considering my age and family history. A small (silly) part of me thought I’d like it to be positive, just so I’d have an answer to the “why me, why now” question. However, I am thrilled with the results. The why’s are really not important (it’s just a natural mental habit that I think it unavoidable, at least to some extent.) Whoopee!

However, this doesn’t change my mind about getting the other one taken off. One reason is that, in case you didn’t know, negative gene testing doesn’t mean that your cancer is definitely not genetic. There are something like 6 or 8 possible gene mutations known (note the use of the word known). However, BRCA 1/2 are the most common by far. It is not considered feasible at this point financially and resources-wise to test for every random mutation possibility, both because they are so rare and because there could still be others yet unknown. Thus, there’s still a small chance it could be genetic. Secondly, my favorite one is already gone. I might as well avoid the runner-up from giving me problems later. I don’t ever want to go through this again if I can help it. And I’ve got so very many years for it to come back. (boo!) Lastly, if I am “upgrading” in size (which you-bet-your-bottom I am), I have to alter the other one anyway. So I figure, “get ‘er done!”

Two-Speaking of mastectomies, the last little bit of scab finally came off in the shower on Saturday. (Sorry if that sounds gross.) That’s right, in my story almost one year ago, I am not far from the surgery part, and in the here and now it’s still healing 11 months later!! Of course I will tell you more when the time comes, but if you are about to go through the surgery yourself, never fear. I had a very random and mysterious healing problem. It’s not likely to happen to you and besides, it was more frustrating than anything else. Double whoopee! No scab!

Three-Here at my family’s house in North Carolina, I’ve been doing house projects with my father. Cleaning, spot de-rusting and repainting the iron patio furniture and, best of all, redoing my father’s library. Why do you care? Well, you may not. But it’s relevant because ever since I had my mastectomy I’ve mourned the loss of my 12 lymph nodes. I have found there to be a gross lack of information regarding the healing process in specifics.

For a long time I thought I would never be able to do many physical things again. I have constantly wondered “Can I do this yet? Can I do that ever again?” The information simply didn’t say how much use I could expect to regain. One day, watching The Best Show Ever to Come on TV (LOST, in case you didn’t know that) I actually started crying a little. This is because I always identified with Kate in the sense that I’m somewhat tomboyish.  I love to challenge myself physically, I love to climb trees, I used to do gymnastics, etc and have always felt pretty tough, like I can do anything I want, even weighing 100 pounds wet and wearing 3 inch heels. After surgery, I didn’t feel that way anymore and watching her do that stuff made me so envious and sad. She represented the part of me that had been snatched away. And it was a very important part. I’d never just hoist myself up an air-conditioning shaft (cause I do that so often, right?) without greater consequence than pulling a muscle. I’d never again be able to defy the people who’d say “You can’t do (X) by yourself!” I really missed that “I-can-do-anything, just-watch-me” feeling.

While the extent of my future tree climbing days remains to be seen, I constantly feel more optimistic about my arm’s abilities. And here at the house, I’ve been moving furniture up and down stairs and painting walls. I’ve never been so happy to do house chores. Mind you, all is done carefully and conscientiously, never forgetting and always favoring my good arm, but done all the same. I’m not quite ready to get stranded on a deserted island and chased by (a different sort of) invisible monsters, but I’m getting there!

Coming soon…

Don’t mean to pause the story, but I’m momentarily distracted by a visit home to the USA and my semi-annual Junk Food Tour of America. (After this, I should have enough excess fat on my belly to make some fabulous new you-know-whats! Yeay!) Be back very soon…

Diagnosis

A year ago, about now, I was sitting in my doctor’s office. I told her there was one thing I had forgotten to mention in our last meeting (just 2 weeks prior when I’d presented a laundry list of other things, including the little pains in my left breast area). As I told her about the retraction and lump, she pulled my mammogram report up onto her computer screen. “Ah, yes” she says, “we saw that last year. We were going to have you do another one this year just to see…yes here it is.” She’s pointing at the Dutch words on the screen. “You have some calcium deposits there.” She turns back to me. “Nothing to worry about. We were going to have you go back and have another one this year to look at it.” (“You what? Oh. Thanks for telling me before! It’s only 8 months later.”)

She did examine me, unable to feel it when I was lying down, it’s heavy weight being obvious when I sat up. “Yes…yes, I see it. Well, calcium deposits are nothing abnormal. Though the retraction means that it’s growing, which is unusual. Let’s go ahead and send you over to that second mammogram. It’s just a precaution.”

I scheduled the mammo for just over a week later. I wasn’t going to call off of work for it… Perhaps now is the time to mention that I am an international flight attendant and I work out of NYC. I know I know it’s crazy, but working means flying to New York, working a 3 day round trip back to Brussels or Paris, then returning home to Brussels. There is no fitting errands into your day. You’re either off working or home living. And we get no automatic quota of sick days. Every absence has to be excused, so we save them carefully. So, in this case, I flew away and worked. After all, I didn’t want to be dramatic.

When I finally got to it, the mammographer showed me the lump on the sonogram screen. Most importantly, he highlighted the blue and red squirming lines. “See those?” he said in his gruff Dutch accent. “That means it has blood vessels.” He turned off the machine. “I say, take it away!” With that vague pronouncement, he said I could use as many paper towels as I liked to wipe of the sono-goo, and abruptly walked out.

I swear everything was in black and white. My heart dropped so heavily that you could have heard it thud on the table beneath me. Other than that, my insides were numb. I thought in slow motion as I wiped it off and dressed myself. What does he mean “Take it away”? Take what away? The lump? The breast? Take what!?”

I had a lunch date with my good friend Dan and I had just enough time to make it. I didn’t know what to think. It couldn’t mean the breast. He wouldn’t make such a big pronouncement and then just leave me there. I’m being dramatic. He means they can remove it in a “little procedure”, surely. Do I take time off of work for this? I was supposed to fly out tomorrow. There was no time to call my boyfriend or any family. I had no idea what to say anyway. Getting to lunch seemed inordinately important.

I made it to lunch spot on time. (Whew! Thank goodness “important disasters” avoided right?) And I couldn’t keep in my confusion. I told him, “I have news that I feel kind of weird not talking about to Del of my family first…but I need to know if I should call off of work for this.” Immediately he says, “you’re pregnant!” I bust out laughing. “Noooo,” not having any idea at the time that I would have preferred that to be true. I told him the story. Dan assured me that it was “perfectly appropriate to call sick at work for possibly having a tumor in your breast.”

Dan’s a Business Sort, so I trusted his judgement. He was also not my boyfriend or family, so I trusted his (more objective) judgement. He convinced me to go to my doctor the next day and not wait another week to find out just what the mad scientist meant. We had a nice lingering lunch. It was cool. It was casual. I noticed that my wine glass was shaking. I began sliding the glass to the corner of the table before picking it up for a drink. I hoped he hadn’t noticed.

Hair Chronicles

Just for you, a photographic flow-chart of the hair.

07 Aug 06…………….14 Aug 06……………30 Aug 06

Dec 28 06…………….Jan 07…………………early Feb 07

early Mar 07………..today

First Follow-up

In the here and now, I have just had my first follow-up appointment. In short, my oncologist did a little examination. I have remained slightly concerned with the fact that I still have some movement limitations in my arm, 10 months after surgery. However, when I peeled my shirt off over my head, a smile sprung to his face. “Look at that! It is amazing how you can do that.” My heart sung both with praise from him (Akin to getting a gold star in Kindergarden. I have some weird drive to be teacher’s pet.) and with the confirmation that I have not somehow failed to properly look after my recovery.

He then listened to my lungs, did a little physical sizing-me-up with with his hands the way you pack little bits of (whatnot) into a pile with your hands: A little cupping pat on the hips, the ribcage, the shoulders. I’ve no idea what this looks for, but I trust Dr. god. He listened to my lungs. He felt along the line of my scar. He kneaded my lymph nodes. He gave me a pleased smile. “See you in 3 months.”

I was confused about what follow-ups would entail. I had read over and over that it meant PET scans, bone scans, all sorts. My onco said that the new guidelines are just to do blood tests once a year. Here, however, I would get them done every 3 months. If I wished for scans, I could have them. All I have to do is ask at any time. I have decided I am fine with not getting various radioactive substances shot into my veins several times a year unless I suspect something. I will have a work up of scans when/if I move back to the US for a final clean bill of health before changing medical systems.

It feels like a long time since I have to give blood. The needle in the soft inside my elbow took me back a little to less cheery days. But just for a moment. Just enough to remind me how good today is.

I have also packed up my wigs to be sent back to the friend that lent them to me (Thank you, Helen!). I have not figured out what to do with the handful of terrible ones I and my dear family ordered off of ebay. Yup, that’s a real wig that I got (photo above) and somehow I had no idea it was going to be that bad, though I’m not sure how photo could disguise that. (What?! I wanted a “headband” wig! I thought I would look like Fran Dreshner on The Nanny! They looked so cute!) People would have felt pity for me, but not because of the cancer. I am sure you all agree it’s appropriate to thank Helen again for the nice wigs she sent me after.

• ebay wig: $20

• wig from cancer specialty store: $1300

• photo of yourself looking more ridiculous with a wig than you will bald: priceless

(got other captions for the photo above? them them in the comments!)

Setting the Scene

This time last year, it is my last week of innocence. As I mentioned before, I am newly 30. I have a new boyfriend that I have known for just over 2 months. I have just finished grad school and moved from the small Belgian college town to Brussels, staying in Europe out of sheer stubbornness (as I don’t want to leave). I am living the life of a young expat: learning to drink beer with my meals, busy meeting peers from all over the world, exploring nearby countries, traveling to the US for work 50% of the time.

My dad has arrived for our annual trip, this year to Croatia. He gets here a few days early and I give him my bed. As I travel so much I share an apartment with two French-speaking boys – one French, one Belgian. It’s ok, but I am tired of living with people that I feel I am constantly cleaning up after when I am hardly ever there. These are my concerns of the day. I plan to buy an apartment soon. For now though, dad has the bed and I use the blow-up mattress that the new boyfriend has kindly lent me. It is on that mattress where I will have my one and only dream that the mysterious lump is in fact cancer. I don’t remember much about the dream, except the final moments where I get a mammogram, and the tumor glows very brightly white from the film. It glows brighter and brighter until I wake up. It is the first moment I realize that a part of me is scared. I reason that that kind of fear is merely healthy, and may save my life one day (when I probably have BC for real).

What I haven’t told you yet is that I’ve already had a mammogram. This is a large reason why I refuse to really think it’s cancer….About 8 months ago, I had had an annoying little pain around the left breast for about 6 months at that point. A doctor friend had assured me it was nothing, and I had also asked this (my regular) doctor. She assured me it was just little muscular strains. I’ll be honest, my gut wasn’t sure about that, but I’d asked two docs. What more could I do? Both doctors said there was no way it was something like cancer. While I mostly believed them, it did spur me to get the mammogram. With family history, it was a good idea to get a “baseline” mammo anyway. I was told that “no news was good news” and of course, I never heard anything back from that examination.

After returning from Croatia we plan to go to Strasbourg for a weekend. When we get back however, I will send dad on alone and finally tell him very casually that I have a lump I want to get checked out.
We both agree that it’s nothing, but with a family history, I better be smart. “Don’t mess with that stuff”, he says, happy to give me time alone for an appointment. He goes to France and I go to the doctor, eager to get my clean bill of health.

beginnings…endings

This is a “full circle” story. As such, I’ve decided I’ll be doing some toggling between the past and the present. After all, the most interesting part about where I’ve been with this cancer, is where I am now. Because I’m in a good place. I’m in that place where suddenly, I’m starting to feel like myself again. I feared that wasn’t really going to happen. So for those of you who may just be embarking on your own difficult story with BC, I want to assure you show you that it will. That the roller-coaster that is your life right now doesn’t go nowhere, and doesn’t ultimately lead you to a place so far off from where you started that you are lost. It will feel like it for a while. But not forever. To that end, if you don’t believe me, here’s a photo of me in Turkey, finally starting to see the me that was here this time last year.

Me this time last year: Days before it all began.

Me today: In the hat with my “cancer vixen” friend Jess, and then also with my bf from NYC.

Life is good today. That’s what I want to convey. Turkey is the first time I had some drinks, without anxiety that it’s not good for me. Turkey is the first time I’ve been dancing since the top photos were taken, and the first time I’ve done exercise without being careful and aware of my surgery side. In short, whereas I lamented for the longest time that I would forever feel like I went from 29 to 50, I am starting …finally…to feel 30 again. That is a very triumphant feeling.

I promise in the course of the story, to be as honest as possible…even when it comes to things that aren’t easy or are usually embarrassing to talk about. Having waited a year to do this means I have some of the emotional distance necessary to poke around the wounds of some moments, and the perspective to know what things aren’t talked about enough but really need to be. Knowing that it all ends well, I hope you enjoy the ride.