Day Four: And on the fourth day she rests

Mostly, at least.

Last night, in an attempt to finally get a good night's sleep, I took an OTC sleeping pill and crashed until after noon. We had "stuff" to do today, but it didn't get done. Before we knew it, it was pushing five, and we were supposed to be in Indiana for "our" niece's 2nd birthday. She's Jason's niece, really. I first met the family six years ago at her brother's first birthday. And although Jas and I haven't been a couple for a very long time, I'm still sort of family. The kids call me Aunt MeMe.

Anyway, I guess it's just as hard NOT to talk about what's going on with me as it is to talk about what's going on with me. No one mentioned anything about my situation while I was there. I don't blame them. I probably would have done the same thing. But it still felt weird. Jas's brother in law asked me when my school year was ending, if I was happy to have it over, if I was looking forward to the summer?... and I just didn't know what to say. I just shrugged, said, "Sort of," and left the kitchen.

Talked to Ma for a little while this afternoon. This morning she spent about an hour on the phone talking to a co-worker who'd also had a double mastectomy around 4 years ago. Turns out she tested positive for the genetic predisposition. This woman also opted for simultanious reconstruction, but her plastic surgeon took fat from her stomach to rebuild the Girls.

I wonder why I was not offered this possibility. I do know that her friend was and is overweight. Perhaps I don't have enough extra fat? It's definitely something I'll ask the plastic surgeon. I read up on it a bit, and it makes for a longer surgery, a longer recovery, but also offers fewer future risks associated with inplants. Perhaps my surgeon assumed I would want to go back to having E-cups. That's not my plan, and I'm pretty sure I don't have enough fat on my body to rebuild E-cups. But A's or B's? Maybe.

Otherwise, it was pretty much your run of the mill day here. Sent a few email thank yous to people who have offered support. Had a fantastic time playing with the kids (mostly my niece, as my nephew was rapt by a NASCAR race).

I guess the only other big thing is that my mom is now totally on board with the bilateral mastectomy. I thought if anyone would talk me out of it, it would be her. And yes, I suppose I have been hoping someone WOULD talk me out of it. I told her about my thoughts about the nipple tattoo, told her that I was thinking that the best tattoo would be those silhouettes of naked chicks you see on truck mudflaps. She said, "It's nice you have a sense of humor about it." But her tone said, "don't you dare!"

Crying jag? Check. On the way home from Indiana. And I racked up another last night before I went to bed. So, we're averaging one a day. Maybe tomorrow's goal should be to skip the crying jag entirely.

Email Update #1

As part of my goal for this blog is to create a sort of "scrapbook" for my experience, I think I will occasionally include big broadcast emails that I send to my friends and family. There will probably be repeat info in these emails and the blog. C'est la vie.

Thanks to all of you for your support and concern. Sorry for the broadcast, but I'll try to get back to get back to each of you individually this weekend. And sorry for those of you who were just checking in and really don't need this much info. This is cheaper than therapy.

I met with my surgeon today and then with an oncology counselor and a genetic counselor. I basically spent four hours at the hospital today getting advice. Good advice. I feel like I'm in excellent hands.

Speaking of which, before I forget, I should say that Jason deserves a huge gold star. I initally told him that I wanted to do this alone-- in my typical, stubborn, "I am a rock; I am an island" way. But the surgeon called him in without even asking me and then Jason travelled around to every meeting with me, asking questions and being his pragmatic, thoughtful self. I hope all of you have such a best friend in your lives. That being said, it looks like whatever surgery I have to have will be during Jason's big yearly workshop, so I'm probably going to have to take the Big Step without him. Ma will come, of course. But still...

Anyway, no decision has been made yet. But I've narrowed it down to two, very drastically different, options.Pardon the frankness of this-- but it turns out I have very complicated breasts. (In any other circumstances, I might have taken that as a compliment.) They are (ahem) large. They are dense. And they are incredibly fibrous. That makes detection of abnormalities very challenging. This tumor did not show up in ultrasounds and mammograms as late as January. But that doesn't necessarily mean it wasn't there.

I am a good candidate for a lumpectomy. This tumor is presenting as, as my doctor said, very "run of the mill." But. That doesn't mean that it is. And that doesn't mean that there aren't more. It just means that this one tumor that they can see (it's pretty close to the surface-- I can feel it) is your standard issue breast cancer.

But. The doctor said that doing even an MRI on both breasts was a waste of time. It would just turn up a whole bunch of clutter, none of which they could be certain about without doing more biopsies. Basically the girls are full of "stuff." In most people's breasts, that stuff can be ruled out as being dangerous through mammograms and ultrasounds and MRIs... but not mine.

Everyone I talked to said that they would support me choosing to do the lumpectomy as long as I understood that it meant constant vigilance for the rest of my life and periodic biopsies when things looked iffy. And honestly, the biopsy, which sounded horrid, turned out to be a piece of cake, really. And believe me... I'd be vigilant.

That being said, everyone I spoke to suggested that I seriously consider a bilateral mastectomy. I do not have a strong history of breast cancer in my family, although my grandmother had it just before she died. But in 75% of people my age who get breast cancer, the cause is genetic. If you are genetically predisposed to breast cancer, then you have as much as a 90% chance of getting breast cancer in your lifetime and have a 65% chance of recurrance if you've had a lumpectomy. I agreed to have the genetic test, but the results won't be back for as much as three weeks.

I have an appointment with a plastic surgeon on Wednesday. My oncologist wants me to understand the ins and outs of cosmetic reconstruction should I opt for the double mastectomy. And my plan is to make a decision between the lumpectomy and the double mastectomy then. But, truth be told, I feel fairly resigned to the fact that the right option is the more drastic option. Even without the genetic testing (which would all but demand the whole shebang... or shebangs), I don't feel very good about my chances for living a breast cancer free life after a mastectomy. There's just too much static in the picture.

I almost just said "F it," and scheduled the surgery today.

Anyway, the more maudlin side of all of this is that I won't know if the cancer has spread until I am under the knife. During whichever surgery I choose, they harvest a lymph node and biopsy it while I am still under. If it's clean-- awesome. If it's not, they take all of the lymph nodes on that (the left) side and harvest them to test later. If they're cancerous, then the journey has just begun and the hunt begins to find out where the buggers have migrated to. Regardless, chemo may follow.

But we will cross that very ugly and rickety bridge if we come to it.

So that's the scoop, my friends. It all sounds very drastic and weird, but if you know anyone who has had breast cancer then they've probably gone through the exact same thing. There's nothing really special or interesting about my case except my age and my dense and lumpy breasts. :)

Mastectomy Fun Fact: Did you know that when a woman has a mastectomy, they are unable to preserve the woman's nipples? Many women who choose to have their breasts reconstructed opt to have their nipples TATTOOED back on!! My thought is, I wouldn't be ME if I chose to have just your run of the mill nipples tattooed back on the girls. So, should I opt for the whole big kit-n-kaboodle procedure, what do YOU think I should have tattooed where nipples should be? Fleurs de lis? Smiley faces? Peace signs?

Anyway... thank you again for your kind words, your support, and your offers of everything including the kitchen sink. I promise I will do my damnedest to NOT be my usual "suck it up and suffer in silence" self. Lots of love to you all. I'm ok. I will be ok. And believe me, if I have one thing going for me in this situation it is that I'm a frigging terrier when I'm angry. And of course this makes me angry. I'm prepared for a fight.

Day Three: The Girls gotta Go?

Well, the big meeting with my surgeon came and went, but I haven't yet made a final decision.

My surgical oncologist gave me two important pieces of information for me to consider while I am making my decision:


(1) I have very dense and fibrous breasts. This makes it exceedingly difficult to read mammograms and ultrasounds. The fact that this tumor was not picked up in any of my previous films gives him pause and makes him worry about every other lump and bump in my lumpy and bumpy breasts. Should I opt for a lumpectomy, I will have to be exceptionally diligent for the rest of my life. I will also probably have to have any irregularity biopsied henceforth. He worries too that subsequent malignancies could go unnoticed in the chaos of my breasts until they become a very big deal.

(2) The fact that I am "so young" for breast cancer is an indication that this very well may be genetic and not sporadic. That means that I may have an irregularity in either my BRCA1 or BRCA2 gene, the two tumor suppressing genes that are supposed to help protect the average person from breast cancer. The lifetime risk of breast cancer/recurrence of breast cancer for people with an irregularity in the BRCA1 or BRCA2 gene skyrockets to 80%.


In theory, my cancer is a prime candidate for a lumpectomy. But even without considering Thing 2, Thing 1 caused my surgical oncologist to spend a lot of time talking with me about the possibility of a bilateral mastectomy. In other words, letting go of the Girls.

The surgeon asked me to see a plastic surgeon to go over the possibility of a simultaneous bilateral mastectomy and reconstruction to see if I could be comfortable with the idea. I have an appointment on Wednesday.

Next, I went to the Norton Cancer Center to have a sit down with the-- I don't actually know what she's called-- a Cancer Consultant? She hauled out five pounds worth of workbooks and reading material and once again went over my options.

I was then passed off to a Genetic Counselor. She spent 40+ minutes going over my family history of cancer and explaining how the whole BRCA1 & 2 things worked. Honestly, it was fascinating, like the very best of biology class in high school (and she was good at it; she missed her calling as a bio teacher). By the end of our discussion, she recommended that I have the test. My grandmother had breast cancer, and just about everyone else in my family is either too young or too male to be a good predictor of this genetic problem.

If I didn't already know I was at least going to have to have a lumpectomy (which will exceed my $2500 insurance deductible), I would never have been able to afford this test. It costs $3175 and is performed by only one lab out in Salt Lake City who has the patent on the test (damn Mormons!). The test could take up to three weeks.

If this test comes back positive then there is no choice, really; the bilateral mastectomy reduces my chances of recurrence to 2% rather than the 80+% of a lumpectomy. It also means that we have some detective work to do. First, Ma will have to be tested. If she comes back negative, it goes to my father's side of the family.

If Ma comes back positive, then her sister will be next. If her sister comes back positive, then her daughter, my cousin, will have to be tested. If her sister comes back negative, then my cousin is in the clear. That's the way this works.

If Ma is negative, then we open a bigger can of worms. Dad had four brothers. Three of his brothers have daughters. I have a total of six female cousins on that side who could potentially be at risk.

The BRCA genes also put women at far greater risk for ovarian cancer, and if my test is positive I will have to be tested regularly for ovarian cancer for the rest of my life. In my 40's or whenever I'm done with (or have given up on) having children, it's recommended that I have my ovaries and fallopian tubes removed. Any female family members with the BRCA gene issue will likewise have to do the same. This also puts the men in the family at a slightly higher risk for male breast cancer, pancreatic cancer, and prostrate cancer, and they too will have to be regularly tested.

The chances that my BRCA genes are f-ed up are about 75%. Three-quarters of the women my age who are diagnosed with breast cancer in their 30's have a genetic predisposition to breast cancer. 25% are just flukes.

I've always been an oddball, so I'm rooting for the oddball case now, if only to spare my family... THIS.

So, anyway, no big tears yet today. A lot of information. A wealth of information, actually. Just about all the information that I need to go forth and decide.

The decision is this: I am young. I really, really like the Girls. I am single and divorced and had always kind of imagined that Roommate wouldn't be the last man to enjoy the Girls in their natural state. If I come back genetically hunky dory, I could have a whole rest of my life of good times with the Girls. And if I had a recurrence, I could always take the more drastic step then.

That being said, even if I am genetically hunky dory, I could have a recurrence five years down the line that goes unnoticed until it's too late or super terrible. And would those five years with the Girls really be a good trade off for the worst case scenario later?


And do I want to wait three weeks to find out if I'm genetically clean or dirty?


All of this sort of masks the darker side of the decision. We won't know until I have whichever surgery I choose whether or not the cancer has spread. When they do the surgery, the harvest the nearest lymph node and they biopsy it while I am still under. If it comes out clean, it's all good (pretty much, more on that in a minute).


If it comes out not clean, then they go ahead and remove all of the lymph nodes on that side (which can leave permanent damage to, in this case, my left arm). If the cancer has spread to those nodes, we're looking at cancer that has found its way who knows where. The hunt is on. Chemo is required. And life gets very, very ugly.


All that being said, (back to the "if the lymph is clean" discussion) the surgical oncologist has suggested that he may possibly prescribe chemo or hormone treatment regardless because I am, again, "so young." If even one cancer cell has broken away from the flock and headed into the blood stream it could hang around for decades just waiting to strike who knows where. Better to pounce on the possibility now.


I had kind of thought that somehow they would be able to know if the cancer had spread before the surgery. That I would emerge from surgery facing perhaps radiation or chemo, but also with the knowledge that the bulk of the fight was over. And that may be the case. But it may also be the case that I will emerge from surgery to find out that the fight has just begun.


And that, my friends, has me pretty damned messed up right now.

Day 2: History

Way back when, I used to be a compulsive journal-keeper. In my late teens and early twenties, I carried notebooks wherever I went and wrote whenever I had nothing better to do. I filled lunch breaks with journaling. I wrote on the subway. I wrote daily, sometimes multiple times a day, sometimes a dozen pages in a day.


So I'm no stranger to navel-gazing.


I stopped after I got married. This is just speculation, but I think I stopped because my marriage was so unhappy that I couldn't bear to write down the truth of my life on a day to day basis. Writing it made it real. That was what had made journaling such a pleasure in the first place; now it was a threat to my sanity.


I still wrote occasionally, but usually only when I was "in my cups." I turned my writing energy to fiction. Creating false realities when my real reality was unbearable. I once wrote the first draft of a novel in less than two months.


In the days after Katrina, I returned to writing about personal stuff. It was three years after my divorce, and honestly, writing in a blog was easier than keeping my family and friends in the loop on an individual basis. They wanted to know what was going on with me in the wake of the flood, and I wanted to vent. Win-win.


And when I left New Orleans and moved to Louisville, the crisis of living in a Post-Katrina world was over for me, so I turned to writing about my new town. I changed blogs and began a recreational hobby of writing features and editorials about the Ville.


Just this past weekend at a Derby party, a bunch of us were talking about the "lack of a need for privacy" exhibited by the younger Facebook/MySpace/blogging generation. And of course the conversation turned toward a discussion of narcissim. My friend, who knew I blogged, gave me a knowing look and I said, "I know, and that's why I don't blog the personal stuff any more."


Well, folks, welcome to me blogging the personal stuff again. A public journal. I know I could keep it private if I want, but why?

I developed early. By the time I was in jr. high, I was a C-cup. I remember distinctly being made vicious fun of when I was in 5th grade because I was the only girl who wore a bra. It was the favorite passtime of prepubescent boys to snap the straps on girls' bras in 6th and 7th grade.

I'm five feet tall and up until I turned 30 or so, I weighed less than 100 lbs. In fact, I weighed just a smidge over 90 when I met my best friend/ex-boyfriend/Roommate. I remember this because when I started to gain weight, he used to tell me how glad he was because I was "too skinny" when I met him. In 2003, I got pregnant and my doctor warned me that I was too thin to support a pregnancy, and I started stuffing myself full of food. I lost the baby, but the weight gain never stopped. I'm still a size 4 (I was a size 0 or less for most of my life).

I mention this because I have spent my entire life as the girl/woman with the "Gigunda Gazoombas" (as Ma used to call them). Top heavy. Scrawny, short little girl (for most of my life) with the huge rack. While I'm a bit more stout now, my breasts still stand out as my most dominant feature in all their 34DD/34E glory.

I inherited these puppies from my paternal grandmother who has to be a F cup plus. When I was a little girl and started to develop, she apologized for this inheritance. Told me that her breasts had always caused her problems: grooves in her shoulders from her bra straps (check!), poor posture (super check!), and back problems (not yet).

When I was in high school I had my heart broken when my male classmates did a "poll" (this was long before the internet came along and facilitated anonymous teenaged meanness). They had categories like "Ugliest girl in the class" and "Easiest girl in the class." The "ideal girl in the class" turned out to be ANOTHER girl's face on MY body. My best friend was furious at me for being so sad. She hadn't even made the poll (and tragically, and perhaps ironically she lost her life to complications of breast cancer when she was 27). But it stayed with me, the idea that my body was great as long as my face (and perhaps my mouth and my brain) were omitted from consideration.

There are so many "body issues" that surround this cancer for me. My boobs have (I feel so un-feminist admitting this) been part of what has defined me. And, to be frank, my breasts have been very active and enthusiastic participants in my sexual life as well. They have been sources of pleasure for both me and the men I've been involved with. My most recent ex, Roommate, is decidedly a "butt guy." And I've been lucky in that department as well. But the bulk of my lovers (and most men, I think) have been "boob guys."

I remember when I had my miscarriage, the tremendous feeling that my body had betrayed me. I'm not going to say that that was the worst feeling associated with that tragedy, but it was up there in the top five. My body (please pardon the maudlinness of this statement) killed my child. Thirteen weeks into my pregnancy, my body revolted against this little thing with arms and legs and a heartbeat, and it caused it to die. I've never been the same.

And now, part of that which makes me a women, that which makes me me, has decided to revolt and go bad too. These beacons of pleasure and beauty and identity have been causing me stress and worry and pain since November, and now have finally decided to go over to the Dark Side entirely.

I'm sure every woman with breast cancer feels the same way.

And on the flip side of all of this, I've always been jealous of my mother's barely-A cups. The woman opts to wear bras, but it's truly an act of habit and not necessity. Her mosquito-bite tits used to make me nuts in the summer when she could slip on a tank top and go to the grocery store but I had to strap on my bullet-vest bra just to look okay in a t-shirt. There are so many clothes I can't wear because I look totally trashy in them. Going bra-less is never an option (although I did, gloriously, during last year's Bonnaroo). I've never found a strapless bra that truly reins in the Girls. I've deleted more pictures than I can count because my cleavage so thoroughly outshines my smile.

Side note for history: Last year, I took a knitting class with a colleague during the winter. I slaved away on a cardigan sweater for months. When I finally had the pieces all knitted, I took them to the teacher to have her help me put it together and the two sides refused to meet by more than six inches. "Aw, honey," she said, tugging and pulling. "I'm so sorry, but you're never going to be able to wear this. How is it that we never took the Girls into consideration?"

That's where "the Girls" came from.

May 7: Day One

Today I was diagnosed with breast cancer.

The possibility has been looming since November when I went to my doctor because I was having breast pain. I underwent a series of no fewer than five ultrasounds and as many or more mammograms. I developed mastitis. The folks at the Women’s Diagnostic Clinic knew me by name. And in January, because my OBGYN LPN wasn’t happy with just leaving my negative mammograms and ultrasounds alone, I went to see a breast surgeon. He looked at my films and pronounced me “probably just fine” and scheduled a three-month check up. It was on the three-month check up, that I scheduled a month or so overdue, that the cancer was detected. Ironically, I had been concerned over the left breast, but everyone else seemed hung up on a golf-ball sized lump in my right. She’s still there, the Titelist lump, but it’s the irregular mass in my left breast that when biopsied turned out to have ductal carcinoma.

This journey that is only just beginning has been peopled with the very best folk that the medical profession have to offer. Even my LPN at Total Woman clearly cared about my health in a way that you don’t see all that often. I say “even her” because every time I went to Total Woman, I swore I’d never go back. I never waited less than an hour to see a doctor. The general staff there never offered so much as an apology for all the time wasted. And frankly, my OBGYN herself wasn’t exactly the picture of bedside manners; in fact a year ago, I asked if I should start having mammograms and she told me to wait until I was 35. But the LPN knew what she was talking about.

I can’t imagine how many techs at Women’s Diagnostic I’ve interacted with. And even though this may be a misconception, I feel like I have one tech in particular to be grateful for. Julie, who ran my follow-up ultrasound, the ultrasound that I believed would release me from concern for at least another year, was the one who saw the lump and who disappeared for a half hour (I admit I was annoyed, not knowing why she was gone) to corral a doctor and confirm her suspicions. It was Dr. Stevens who was impossibly sweet—it’s hard to imagine a doctor with a kinder, more soothing tone—and urged me to immediate action. And today, when Dr. Stevens went home sick, it was Dr. McLaughlin, the first doctor I dealt with there, who called me, unbidden, to express his sadness at my news and answer any questions that I have.

Today was a tough day at school. I was waiting for the biopsy results and found out that my job next year was changing and that I would have to share my teaching of American Lit with Marti, an iconic, brilliant teacher who intimidates me to no end—part my insecurities, part her personality. She is not a woman with whom I share a good relationship, although I’ve been making a concerted effort all year long. All day we went back and forth together about next year; honestly, I was trying to please her, but I was also on the defensive. And when the news came, she had just left me, and I knew she was just next door, and without thinking I went straight to her. With the most intimate, personal news possible. I find it hard to believe. But I went in her room and I just said, “I just found out I have breast cancer.” And she hugged me and she said, “But you won’t soon. It will all be okay.”

I had to then enter my classroom half full of next period’s student. I wasn’t crying. I didn’t really cry until around a half an hour ago. But I was struck. “Are you ok?” asked Katie Beth.

“I just got some really sad news.”

It was hard not to tell her. Honestly, if I had to choose a single kid to confide in, it might be Katie Beth. She asked me what I was wrong and I said that I couldn’t talk about it now. And not wanting her to think that I didn’t trust her or care about her, I touched her arm and whispered, “We’ll talk about it later, I promise.” Because we will. At some point, I’ll have to tell them all. I don’t want to just disappear. Lord knows, should anything terrible come of this, I don’t want to be the teacher who just disappeared.

Before I got the news, between the troubling ultrasound and the biopsy, I’ve thought a lot about that—what do I tell my kids? How do I deal with these last few weeks of school before summer? If I had my druthers, I’d just pronounce class over. They’ve been a great class. We learned a lot. They’ve jumped through all the hoops I’ve set before them. Let’s just call it a day. But that’s not my decision to make.

I came straight home and told Jason and the day has unfolded quietly since then. My mother was stronger than I had given her credit for being. Beth called. Pat and Ralph just emailed. I puttered in the garden for a while. And I cried after watching the season finale of Eli Stone.

Probably not a wise viewing choice, but how was I to know that he would nearly die and only be brought back by his will to live and the strength of love of his friends and by his faith in God and his knowledge that he had done good and still had more good to do??

Because those are the kinds of questions that I’m stuffing down right now. Should this turn out badly, how strong is my will to live? I don’t have many friends and my family is so far away. I don’t have a family of my own to live for. My faith in God is weak and utilitarian. How much good have I done? The answer is not much. And while I have always believed in my potential to good or even great things, I’ve not done much to live up to even a meager shred of that potential.

So I’m frightened. Not about what it is but what it may be. If it is just this, I can be strong, I can power through this. If it is something worse, I worry about my own determination and faith. Not just in something greater than myself, but in myself.