unweaving the nest

your mileage may vary

This is the view from the west wing of the sixth floor of Roswell Park Cancer Institute. It's like its own little medical research city in the middle of beautiful downtown Buffalo. (Can you see the frozen edge of Lake Erie in the distance?) It is a also a hospital and is where I had my surgery and then stayed over night to begin my recovery. It's a pretty good place to be if you have to have cancer. They seem to know what they're doing. And sometimes, if you are really lucky, when you leave there to go home...you don't have cancer anymore.

That is the news I left my room on the sixth floor with on Wednesday morning---at least the preliminary news before the final pathology report. During my mastectomy the surgeons did a sentinel node biopsy and it came back negative. They inject the site of your cancer with a radioactive blue dye and watch it travel to the lymph nodes. The first node that it reaches is the sentinel, or first, node...and the thinking is that if the cancer has spread it would arrive at this node first. Makes sense to me. SO they remove this node and biopsy it to see if they find cancer...and mine was all clear. That's what they said. I don't think my day could have turned out any better. That is about the best case scenario; you go into surgery with cancer and you come out without it. місія виконана... (that is Latvian for 'mission accomplished." Latvian just seemed cool at 2 a.m.)

The thing about cancer, any kind of cancer, is that it's different for everyone. It's not like the flu. You know, how everybody who gets the flu can expect a high fever, muscle aches, congestion. Cancer isn't like that. So when I tell you how it was for me, it is certainly not the norm...because there is no norm. For instance, my room mate, who was a few years younger than me and had the same surgery and surgeon, slept through the entire 12 hours we had together. I on the other hand never slept at all. We spoke briefly in the morning before I left, and she was feeling miserable. I felt horrible for her. I felt almost guilty for feeling so good. I was ready to go home; she said she really felt like she needed another day. Everybody's different.

I feel very, very lucky.

I was really nervous before my surgery about anesthesia. About being medicated in general. I am not good at the medication thing. When my anesthesiologist came in that morning to talk with me and get my IV's started I just flat out said "I am really nervous about this. I am asking you to not give me any pain medication during surgery that would alter my consciousness." He didn't flinch at that and said he understood and that he could give me enough ibuprofen to rival morphine as far as pain relief goes, and that after surgery I could continue on that unless I felt I needed something more. I was relieved. I went to sleep happily after he slyly started running the la-la juice into my veins while having a conversation with me.  I'm not brave folks; I am terrified of narcotic pain medicines after an unforgettable experience with them when I had an emergency c-section 22 years ago. That experience has followed me on my medical charts as having an allergy to morphine, ever since. They always try to give me something else, and I always refuse. And I have to say that the Motrin has been just fine. I came out of surgery alert, no nausea, no drowsiness or dopiness and I was out of bed in a few hours and hungry and eating solid food 12 hours later. (Nurses who smuggle you food in because it is too late to get anything and your docs have not released you to solid food yet are AWESOME)

I feel remarkably well. I mean, it hurts and I am uncomfortable at times but it's supposed to hurt when your skin and muscle are cut into, body parts are removed, and then you are sewn back together again. But I was home in just over 24 hours and feeling very very happy that the whole surgery thing was behind me. I am bandaged up pretty good...the most frustrating thing is that I cannot take a real bath or wash my own hair...and I can't lift my right arm over my head or lift anything over a few pounds. I can't take the cap off a child-proof bottle. I can't bend down and clean the cat box (heh heh) but I can type and make coffee. I can wash my face. I can get dressed by myself and all that jazz. I can empty the little plastic hand grenade drain coming out of my rib cage all by myself. I can make tea for my friends and eat their delicious homemade mac and cheese, Greek salad, lentils, fresh veggie juice, scones, (even though I can't hold a plate or a bowl and eat with my left hand very well) etc, etc, etc... and I can smile whenever I think that besides the upcoming year of implant procedures, I am really done with the cancer thing. They tell me my risk is only slightly higher than any other woman who has never had cancer before. And of course I know that once you have had it, it will be lurking somewhere in your subconscious that you might get it again...the people I now know that have been through this tell me so...it's always going to be a part of your life...but not a very big part, not like it was when everything was still so uncertain. I am one lucky woman to be able to say "I don't have cancer anymore."

The implant feels very tight and there is a lot of pressure in my chest. I have no feeling under my arm. The incision site burns almost all the time, but not in an unbearable way. It hurts, but it's definitely not unbearable. Migraines are unbearable. I had migraines for many years. This is nothing like that. And to be honest I don't feel terribly weird to not have a breast on the right side. It is somewhat padded with dressing and tape right now, but I have not felt the need to wear anything to fill it out when company is here or when I leave the house. I didn't know how it would feel, and I wrote about that before. But you know what? It doesn't feel anywhere near as horrible as I thought it might. I am the same person I was when I had a matching pair...and the lone survivor looks really great and is doing just fine on its own. I am still content with my decision to have the implant, and we'll see how the next year plays out as far as that goes. It is a gradual process and I will know what it's like to have a lop-sided chest for a while. Right now I am feeling like I'll just let it be that way, that I don't feel the need, yet, to wear a prosthesis or stuff my bra. And maybe that will change. But for now it feels just fine. In a year from now when I have a matching pair again, if I am not comfortable with the implant I can always have it removed. But my gut told me to give it a try. It seemed like the right thing to do, for me.

I have been lucky in my recovery to have my mom staying with me, and my daughter being home most of the time. I have had a steady stream of friends come to visit and bring me yummy food and things to cheer me. My house feels happy and vibrant and full of good energy and therefore so do I. It is a real gift to have those who love you nearby and so amazing about helping you through something like this. I am very, very fortunate.

So that is my update for now. Thank you to all of you who have written to me and sent your thoughts and good wishes and prayers. I have no doubt that all of the positive thoughts and energy and prayers put out there for me have made all the difference. Thank you. Really really really.

priorities (?)

(I am writing this post with the awareness that every woman who goes through this has her own very individual and deeply personal feelings about it. There is no right or wrong, and my thoughts and feelings that I am writing here in no way attempt to portray a perspective of this beyond my own.)

If someone told you that you have breast cancer, where would your mind go first?

Am I going to die from this?

Seems like the most rational response to me. And of course it is one that has been rattling around in my head now and again---but it's not what keeps me up at night.

Even though it lurks somewhere in the shadows of what is happening in my life right now, I have never felt that I was going to die from this. Now, how in the hell can I know this? I don't know how. I just know. (Written with the full-realization that I have been self-duped before.) So what IS keeping me awake at night this week? (Last week it was something else entirely.) As if the diagnosis of cancer in your body isn't enough, or the thought of losing your breast---which can emotionally knock a woman down pretty hard. What else can keep me awake?

At the moment it's implants.

I know, I know...what a great thing. Something that women have not always had available to them as an option after mastectomy. There are certainly other options, but all of them require intense surgeries and massive scars. Long recovery times. Risks. I've written about all of that already. But the one option that seems to be very best one for a woman's health and for ease of recovery and getting on with life is the last one on my list. And I am starting to panic about why I can't choose this one.

That option is? Simply doing nothing at all about reconstruction. An option that was never mentioned to me once by my physicians, even though it is a very viable one---although not profitable for the medical industry. Of course they most likely think this is so obvious that they do not need to mention it. But what is left unsaid is often just as powerful as what is said. Maybe we are left to think there is something wrong with doing nothing at all.

I'm thinking every doctor should be offering this as a valid choice for every woman facing mastectomy. It is safer. It requires less surgery, less pain, less money spent, less risk of complications, less recovery time. And during a time when a woman's focus should be on taking care of her WHOLE self in a healthy way, it would be one less heavy decision to make. One less thing to keep her awake at night.

I guess the whole point of reconstruction is to make you feel whole again. If you lost an ear, you might want another one, whether you could hear out of it or not. I suppose if you lost an eye you'd consider a glass replacement. And certainly if you lost something as important as a leg you'd want a prosthesis. I wonder if a man lost his testicles if he could have testicular reconstruction? I wonder if he would even consider it? But a woman's breasts are a different kind of thing. They are hidden from the public (at least in our puritan culture), and once you are past the child-bearing stage of your life it's not like you rely on them to get you through a day. No one but you and the one person you are most intimate with is going to know that they are missing. You will still be able to get up and go to work and take care of things. So why is it so damn devastating to some women to lose them? (Myself included.) And why are we a culture that is so obsessed with breasts anyway?

I'm not alone in these feelings I am having. According to a recent medical study:

There is a significant psychological trauma associated with the loss of one or both breasts. In one study it was noted, the breast, far more importantly than any other anatomical part, is an emotional symbol of a woman's femininity, sexuality and motherliness.

Emotional symbol of femininity, sexuality and motherliness. Can't say that about an ear or an eye or a leg. So even though you won't look weird to a person passing you by on the street, and you will still be able to get up and go to work and take care of things...that is a pretty hefty hole to fill I would say. Emotional holes are the hardest to fill. And will an implant be able to do that? I'm starting to doubt that it can.

Well, of course it can't. This is an issue of heart and spirit and love and knowing---truly knowing---that we are more than our individual body parts. I have to laugh when I think of something an amazing woman, exactly my age, who has gone through all of this, wrote to me recently. She said she seriously considered not getting reconstruction at all. Her breasts were never a big deal to her and her husband would think she was hot even if she gained 60 pounds and lost both breasts. But the bottom line for her was that she didn't think she could keep track of a prosthesis. She has a hard enough time keeping track of her car keys and her children and could see herself scrambling to find it and only to discover a chewed up piece of plastic near the dog dish. Oh I laughed when I read that. But she also wrote to me that I am more than my breasts, or any other singular thing about me. And of course I know that, my mind knows that, but it's an entirely different thing to feel that way deep inside when you are faced with all of this crap. Her words stuck with me though. They swam around my bedroom last night while I was staring at the walls.

Back to that medical study. The femininity, sexuality and motherliness. Femininity is something I will never lack. I may not be a high-maintenance diva who dons high heels and painted nails and lips, but I'm a girl through and through. I'm soft. I'm emotional. I love kittens and lacy things and tragic, romantic stories that make me cry. I do love a gorgeous bra and how I fill it out...but is that the crux of my femininity? Not the last time I checked. I'm in no danger of losing any part of my femininity, so cross that one off the list.

Motherliness? My breasts fed my children and they nestled their sweet little heads through many years of joys and sorrows. But my heart and my deep, unconditional love for them is what mothers them. They no longer have any need for my breasts anymore than they need my uterus. I don't need breasts to be a mother, and truly I never did. They would have survived and thrived just the same without them, and truthfully I know some men that make better mothers than some women I know. So cross that one off, too.

Sexuality?

Aye, there's the rub. I told myself that if I was going to write about this I would tell the truth as best as I could, and the truth begins with the fact that my self-image has been through a bit of a battle when it comes to my sexuality. I am by nature a very, very sensual creature and making love with the man that my heart belongs to is about one of the most important things in my life. But the physical aspects of it, even the mechanics of it, have never held a candle to the emotional or spiritual side of things for me. Nevertheless I spent many, many years in a marriage to a man, a perfectly nice man, that put high value on appearances and he let me know time and time again that mine just didn't measure up to his standards. It's just who he is, and I am not here to judge him. It was by no means all that he was and I can't discount all the other sides to him. But he did some emotional damage to me, and I will not discount that either. And he would freely admit if you asked him. It has taken me a long time to even begin to overcome that shadow, and it's not over yet. But I know the difference now, and I know that it doesn't have to be that way. And I know that the man who holds my heart forever will be the antidote to all that emotional pain I carried with me for so long. That is one of the most beautiful truths I know. So why, why, why do I have this fear of my breast not being there? Why does it scare me so much? Why do I feel that I need two perfect whole breasts to be the same person that I am, right now, today? I don't have an answer for that. I only know it kept me up in tears last night. And I know that I am struggling with the reason, my reason, that I feel I need to replace what I am about to lose.

I am a writer, for all of the reasons that I mentioned in my post a few days ago. And putting all of this down here in this space is one way I can attempt to work through my uncertainty. Has it helped this time? Not really. Maybe it's too early to tell. Maybe I'll read through what I've written later tonight or even many days later and something will hit me like a bolt of lightning. Maybe I'll have some clarity. But for now it's still a hole. An achy, gaping hole.

And maybe you are reading this and thinking "Hey now, let's stick to the important part; you know you're not going to die. Let's get the priorities straight here." And believe me, I know this myself and I repeat it like a mantra. But it's real and it's how I feel right now. And I bet there are other women out there who have had the very same feelings. We are never alone in our struggles, that is one thing I know for sure.

I read a true story about a young woman who really struggled with all of these same issues. Who put her life on hold and turned down a chance of real love because she was too afraid of the pain of revealing her scars. It took a long time for her to recognize her true beauty. The sum of all of her parts, concrete and abstract. And then the man she wanted to love had this idea. This beautiful idea. And here is the result.

And they LIVED happily ever after.

My wish is that whatever I decide, I will have that kind of grace.

 

greetings from room five

Greetings from room 5 in the breast center at Roswell Park.

One of many, many rooms I saw yesterday. It was my pre-op visit. You know, blood work, chest x-rays, EKG, meetings with all doctors for any last questions, complete physical, meeting with anesthesia, genetics counseling, and then signing all of those consent forms that you really wish didn't disclose so much. Oh, and then there was the pre-op and post-op instructions meeting with the nurse. Thank god for nurses. They don't forget anything. Like the fact that I will have drains coming out of me in two or three places. Doctors never mentioned that. But that's okay, my nurse even had one in her pocket to show me how it all works. Brilliant little device. Looks like a clear hand-grenade. Works like a siphon. Some things in the midst of all of this complicated medical science remain very simple, so it seems. Anyhow, six hours after I took this photo I was on my way home from my last visit there (except for a quick one next week for more blood work) before my surgery, which is scheduled for the third week of February.

There are breasts everywhere. Half-breasts. Sitting on every counter in every room, even in the conference rooms that they try to make feel like a living room in a house. But how many living rooms have half-breasts sitting next to the coffee table books? Like this one that was in room 5.

It's like those big plastic teeth you see at the dentist. You know, the ones that are cut in half to show you all the nerves and roots and stuff. The stuff you really don't care about when you are actually in a position to need to know what a root looks like. You just want the root dead and gone. Who gives a shit what it looks like in your tooth. Same thing with a breast. I know what a breast is supposed to look like. I even know what the inside of a breast looks like. But that's not what I'm looking at right about now. I want to see what it all looks like when it's gone. Sure, there are photos to be found if you search for them. But why not have a little 3-D model of what remains? "This is about how big your scar will be, and here, touch this, this is what the plastic expander will feel like under your skin. And this is what a drain looks like while it's hanging from your body. And the fluid will look like this. This is normal. And here, see this? This is not normal."

Sure, they can tell you what to expect, but the real experience lies ahead, shrouded in mystery. Because every one is different. Everyone feels things differently, too. And they really DON'T know how it will all turn out. That's evident from the consents you sign. So many if's.

I spoke with my doctors about the benefits of having a prophylactic mastectomy on the healthy side. Many women decide to do this, and I can certainly understand why. In my case, the percentages just don't make sense. My risks would outweigh the benefits. My survival percentages would not improve. They are already really good. Almost as good as a woman who has never had breast cancer. I cannot justify having the healthy breast removed, not even for the idea of having symmetry between my new breast and my own breast. And to be honest (and this may seem trivial to some, but it's how I feel) I am already taking comfort in the fact that I will wake up from my surgery and be able to put my hand on my remaining healthy breast and take a deep breath of thanks. It's just how I feel.

Thank you, to every woman who has written to me and shared her amazing story about her journey with breast cancer. I am so inspired, so lifted, so in awe of the spirit in each of you, the generosity and honesty, and the wisdom of experience that you are sharing with me. I am learning so much. I will be writing you all again in the next few days. Thank you, thank you. It is the biggest help you can imagine, to see all the light at the end of the tunnel. You are all remarkable.

I have a few hours left of my morning before I have to head into work. My daughter just made coffee. And I am reading a wonderfully creative collection of short stories by Kelly Link that I wish to get back to. Hope you are well, wherever you are.

xo...

vanity press?

Is it vain to post a photo of my breast on a blog? Heck, maybe it is. But forgive me if I want to give it the spotlight while it's still around. Or, a round. That's what the plastic surgeon said today. Yes, dear readers, my breasts are round. Marvelous revelation. And that apparently makes them well-suited for implants, you know, for symmetry et al. I won't need much more than a little nip-lift on the natural side after all is said and done. Until it starts to really age, anyhow. Then what? I'll cross that bridge when it comes, that's what.

I met my plastic surgeon for the first time this morning. That is something I never, ever, EVER thought I would say. But then I really never thought I would have cancer either. No, I pegged myself as a heart attack on carrot sticks. I really don't have cancer in my family; we're a crew of cardiovascular nightmares, all of us. But you just never know.

Back to Dr. T. What a funny man. Pitch-perfect sense of humour and enough warmth to keep a girl in her skivvies, and a hospital gown wide open in the front, at least room temperature. We got along swell. He's from Croatia, and he went to school in Bologna, Italy. Speaks Italian. So do I. And he's an artist. A painter. Made me feel good that he has an artist's eye. Oh boy it did. And he supported my choice for silicone implants over saline, and especially over the more invasive TRAM surgery I had been considering. For my body and breast shape it should be a good fit. But most important we're going to say good bye to the cancer first and foremost and be practical about the cosmetic side of things. One step at a time. Not jump too far ahead. Like when I asked about nipple tattooing he said we'll cross that bridge when it comes. "Don't get too far ahead. There is plenty of time for those decisions later." I like that approach. I am comforted by focusing on what the headlights are illuminating on the dark road right in front of me. I've always been somewhat night blind anyway.

Nipple tattooing. Did you even know that's what they do? I didn't. Well, first they take a skin graft from the uppermost part of your inner thigh. They sculpt a little nipple and attach it and then when it's all healed up nice and wrinkly they tattoo it to match the colour of your natural nipple. Pretty awesome. And I saw something else that really took my breath away today. There was a poster on the wall of a normal, everyday woman lying tastefully naked on a beach. She had one natural breast and the other was gone. But the most interesting part was that over her mastectomy scar she had a beautiful tattoo of a delicate tree branch and vines with tiny new leaves sprouting. There was a poem written on the poster, something about new life growing over old scars. About what beauty really is. It was something to behold. Unique and brave, I thought. Braver than me. It made me think about why I am so bent on going through all of this reconstruction for a year or more and then maintaining it for the rest of my life just so I can have a breast. But maybe I can't explain it. Or maybe I can and I just don't want to. I just know it's what I want. At least right now.

I felt good when I left the hospital today. It's a strange kind of place. There is a lot heavy stuff going on there. You see some very tragic things. I was in the head and neck clinic today and let me tell you...it's not pretty. Makes me feel like I'm the healthiest person on the planet. And yet, the people there never fail to make me smile. Amidst all the pain and reality and serious, serious illness there is a penetrating joy. I leave there feeling good. Maybe it's because when people are faced with something possibly devastating and life-threatening the true grit comes out. The appreciation for all the things we tend to take for granted when we are healthy and going about our business as normal. I like to make a lot of eye contact when I am there. People's eyes tell a story. In a lot of those eyes that I see, fear is as palpable as pain, but when you really look into them there is a different kind of connection than you get from the every day guy or gal on the street. I can't explain it any other way than it's just terribly real. It's hard not to say many many prayers for strangers on the drive home.

I still don't have a surgery date. They said next week after my pre-op visit I should have a better idea. Is it weird that I'm looking forward to going back already? Something must be wrong with me. I have been reduced to posting photos of my breast on the Internet and I actually enjoy going to the cancer hospital.

But hey, at least I put a t-shirt on. Okay, okay, yes, a white t-shirt, but it's not quite blog porn. It's just a marker for the journey.

warm

I love how mysterious a mound of snow can be in early light, the way the shadows and light make it into something that feels like it could be liquid, or under water, or how the reflection of my wooden floors through my window made an overlay of texture on the powdery surface. How even snow can emit a certain warmth.

When I cropped this photo all I could see was the suggestion of a breast. Go ahead and laugh. I am. It's funny. I see them everywhere lately. Especially my own. Especially my right breast which in one month from now will be gone and replaced with one of the so-called miracles of modern medicine...the implant. Yes, I made the decision to have an implant instead of having a huge elliptical slice taken from my belly and pulled up through my mid-section and formed into its own kind of modern medical miracle...a TRAM flap that is molded into a breast-like mound.

I was considering the TRAM flap for a while, even though it means a much longer surgery, hospital stay and recovery, and a huge scar from hip bone to hip bone. It would mean almost two months of recovery compared to under a month for the implant procedure. And do you want to know why I was considering it? A TRAM flap "breast" is made from your own fat and muscle and therefore is warm to the touch like a real breast. It loses and gains weight with the rest of your body. It feels soft and squishy almost like the one you left behind. There is a greater chance that you might re-gain even a fraction of sensitivity when touched. That seemed important to me. It still does. But after quite a bit of reading and researching and really thinking about what it means to me to have perfectly healthy parts of my body cut up and moved around and sacrificed just so I would have a warm, squishy "breast"...well...I just can't do it.

There are pros and cons to both reconstruction options, and of course it's a blessing for women undergoing mastectomy to have these options at all. There was a time when they just didn't exist. I understand the many reasons why women would choose either of them. But this decision feels right for me. Numero uno is that I do not want the risks of such a major abdominal surgery and the sacrifice of healthy parts that can never be un-done. I know that implants don't last forever, and that it will be a foreign substance in my body. But I also believe that implants will only improve over time and when it's time to have mine replaced there will be better options than there are today. Replacement is also a very simple out-patient procedure, no need for anesthesia and barely any recovery time. It just feels like the right choice for me.

But I won't have my warm breast. Nope. Silicone is kinda cold, although it is squishier than saline. But saline is cold, too. And that's why I'm keeping my left breast just the way it is. Many women choose to have the healthy breast reconstructed as well, and while I understand that, I'm really certain that I want to keep mine the way it is and I believe that it will be fine. And why I am telling you all any of this? Because since I have discovered that I have breast cancer I have come across so many women who are going through the same thing, or know people who are going through the same thing, in different ways. And so many women who have not even heard of one of the kinds of cancer I have (I also have this kind) and it's undetectable in a regular mammogram. And breast cancer of any kind can happen to very young and otherwise healthy women. One in nine women. Roll the dice.

There is also a general feeling of "hush" about it. It's a sensitive place, a woman's breasts. And we kind of like them. Or we hate them. I really love mine, but I have also talked to women who didn't have those feelings at all and are happier with their new "breasts" post-mastectomy and reconstruction than they ever were with their god-given pair. So...I guess the good news is that it doesn't mean the end of the world scary heart-achy awful outcome that most people believe. I think the fear we have comes from not being informed about the realities of the outcomes and treatments available today, all the unknowns, and I think sometimes those fears keep us from acting on those first feelings that something just isn't quite right. I know I waited almost four months. Sometimes we just don't want to know. But sisters, we need to know. Time is on our side with early detection. My doctor said these words exactly: "Thank god you acted on your intuition. We would not be having this same conversation in a year from now if you had settled for your initial mammogram results." My initial results said "Come back in one year. Everything's fine."

You gotta trust your gut. And you have to be informed about these lesser-known types of disease that may be rare but still happen. I had never heard of Paget's Disease, and I would wager you have not either and chances are most of us would never need to...but obviously, quite obviously for me anyways, we do need to know.

I still have moments, daily moments, especially when I'm taking a bath or dressing, or other more private moments, that I get pretty deep-down sad about it. And then I think of the alternative...not being here at all, or being left with a disfiguring scar across that sacred female place over my heart like many, many women have been before. And I think it's important to talk about it...or write about it. I hope that if you are reading this that you educate the women in your life about Paget's Disease,  and if you know a woman who is facing these decisions or has gone through breast cancer that you pass a link to my blog along to them. I want to hear their stories, and I want to share mine as it comes along. It's not the only thing in my life I want to write about it, for sure, but it's a big part of it right now. It feels right to have this space to explore it as it comes...and goes.

We have had a good dose of winter here in Western New York. I say, bring it on. Here are some images of what I saw out my windows when I woke up this morning...and no subliminal suggestion of breasts in these at all. ;) Stay warm, but don't hesitate to get out and feel the beautiful cold...xo.

 

 

 

 

joy (& light in all its disguises)

 

This sweet little painting was given to me last night by my dear friend Alix. She had shown it to me in a photograph of where it was hanging in an art show at the Neighborhood Collective in Buffalo. I fell in love with it, its name is Grace, and last night she surprised me with it...along with a much needed hug (more than one) and her inimitable grace...which any woman would be lucky to be witness to. She also brought another surprise yesterday...a new puppy. A sweet little girl that will be a wonderful, magical surprise for her three children on Christmas morning. We get to babysit until then! Just look at her!

 

We are calling her Zuzu (after the little girl in "It's a Wonderful Life") until she gets her real name from her new family. She snuggled with us all night---perfect little bundle of joy. Oh that puppy dog smell!

 

 

That is Alix holding her while visiting last night. :) My daughter is smitten with little Zuzu...and I need to keep telling myself "You don't need a puppy! You don't need a puppy!"

Not yet, anyhow.

I have been given another gift of sorts. And even yesterday morning I would have been hard pressed to call it a gift. Even after receiving this quote in a daily email I receive about Gratefulness:

A sacred illness is one that educates us and alters us from the inside out, provides experiences and therefore knowledge that we could not possibly achieve in any other way.

After a couple of months of doctor's visits and speculating and worrying and feeling generally great but at the same time like a mess of tangled yarn...I got some definite news yesterday.

But first is the obligatory disclaimer: I was not certain if I wanted to write about this or not, but suddenly it was clear to me that I needed to. For many layers of reasons, but most importantly because of the nature of the beast. Knowledge is power and knowledge is also sometimes evasive and hard to come by. And if one woman reads this and is helped by it, well, I don't wish this on anyone, but the fact is that it happens to many women at every hour of every day. This is not a plea for sympathy, or anything of the sort. This is me, the writer, telling a story of how important it is to pay attention. So...

I have cancer.

Scary fucking words.

But real ones that many many people---women, men, children, people of all ages---will have to say one day. And the scariest part to me is that I almost didn't know about it. Even after going to the doctor several times with the same complaint.

Now, granted, the cancer I have is a rare form of breast cancer. It's called Paget's disease of the breast. less than three percent of all breast cancers can claim the name. See, I'm special already! So I can't blame my doctors for not knowing that is what was going on? Or can I? Well, if you get right down to it, it is a physicians job to know these things...but I'm not going to blame anyone. I believe we have to be our own advocate when it comes to many things in life, and when it comes to our own health care for certain.I didn't know what was causing my symptoms of my right nipple getting red and itchy except that it was annoying. It would come and go and certainly didn't seem dangerous. I have really sensitive skin anyways, and my skin does get dry...I ignored it for several months. When I went to the doctor the first couple of times he told me to use cortisone cream if it bothered me, but it wasn't anything to worry about. It would get better. But it didn't.

And I got a weird feeling in my gut. Like I knew something was just not right.

So I went back and showed him again and he said he really didn't think it was anything to worry about, "But you are due for a mammogram. Go have one." So I did.

Mammogram doctor: "Everything looks great. See you next year"

Me: "Really? Because I just have this feeling. I mean are you sure?"

MD: "Everything looks great! See you next year."

But everything didn't feel okay to me. And guess what? The next morning the doctor called me.

MD: "Mrs. van Huystee?"

"yes?"

"I've changed my mind about your mammogram. I'd like to get some more pictures. Can you come in later today?"

And so I went back the next day, had 5 more detailed pictures taken, an ultrasound, and then...a biopsy.

One week later I had the news that the cells they noticed in one of my milk ducts were stage zero cancer. Completely contained. The best kind of cancer to have. Very well-behaved. You should be in an out of a simple surgery within a morning's time. Piece of cake, toots.

On the advice of a friend I decided to get another opinion at Roswell Park Cancer Institute, which is luckily located not too far away. My first appointment was spent filling out forms, becoming a registered patient there with my very own ID card, and then being told that the doctor could not see me because instead of sending my slides over for another pathology report, the lab sent someone else's bladder tissue. Okay, fine. Human error. I would have to come back in a week.

So I did. I was there 5 hours last Wednesday. Tests and exams and lots of questions and vitals. And then my new Doctor had her first look at me and said "Classic Paget's Disease. We'll need a new biopsy to confirm, but I am 90% sure."

What? What the hell does that mean? Still an in and out by the end of morning ordeal? I'm not going to lose my breast am I? How long have I had this? HOW THE HELL DID I GET THIS? I've never heard of this! And hey! Am I going to die?

My doctor explained that it is a rare form of breast cancer that affects the nipple and underlying tissue. They don't know what causes it except that it is almost 95% of the time connected to an underlying cancer in the ductal system. She has not seen much of it, and the nurse practitioner had never seen it before. I couldn't see it at all! I had an itchy nipple for god's sake. How the hell did she know this just by looking at me? And if she was so certain, why didn't anyone tell me this in the previous series of doctor's visits?

So they did another biopsy. This time the little stitches were on my nipple...and let me tell ya folks...that smarts. They did take the time to make sure there would be no trace of a scar. Very thoughtful...but even I know that if there is cancer on my nipple it ain't going to be making a damn bit of difference if there is a scar.

So yesterday the biopsy results were in. My doctor called me and said it was positive for Paget's Disease, and also that my particularly lovely, rare and exotic cancer cells are ER Receptive. That means they feed on estrogen, those hungry little buggers. This can be a good thing, because the cells respond very well to estrogen reducing medications such as Tamoxifin. But Tamoxifin also has some hellacious side effects, especially for people like me with blood clotting issues. There are other options of course...like the removal of your ovaries, cool shit like that. But I am jumping ahead.

What the doctor then told me was that now they needed to see exactly where the cancer has gone between my nipple and those milk ducts. Apparently this type of cancer does not show up on a mammogram or an ultrasound. PAY ATTENTION to your body, ladies. If you feel something is just not kosher...don't let it go.

My MRI is scheduled for January 2nd. This will give us layer by layer images of my body. This will tell us just where the hungry little cells are hanging out. And where we need to make our next move. Notice I said "Our" next move? That's because as far as I am concerned I am now a doctor of myself, and will be working alongside my new prestigious colleagues very, very, very closely. We are going to be great friends. I can just tell.

SO I don't know everything yet. I do know I will more than likely lose my right breast. I definitely want a new one. I mean heck, maybe I'll even consider a matching pair. I have no idea yet. And if I'm honest that freaks me out, makes me cry sometimes, but I also know it's not the end of the world in any such way. Maybe they'll be even better than before! But I kind of like (love) my breasts. They nursed my babies, and well...I won't get into the rest of their resume. But people lose a lot more than that sometimes. Like their life.

So why am I telling you this? I want you to know how important it is to be your own advocate. To know your body. To not wait when something feels a little off. To not take a doctor's word as the last word. You gotta be responsible for your own self. Nuff said.

I also want women to know about Paget's Disease of the Breast (not to be confused with Paget's Disease of the bone...completely different.) The link will take you to the Mayo Clinic Web site and it provides the most accurate information I have found on the Web. Please pass this information to other women you know and love. It's basically an unknown disease.

One other thing...I'm looking for allies. If you have had breast cancer and wouldn't mind sharing your story with me, please email me. If you know anyone who has been diagnosed with Paget's, please pass my email address along? There is very little information out there. Knowledge is power and I am not afraid to ask for it.

So, at the end of the day, this day at least, I'm feeling pretty revved up for an adventure. I have my moments...lots of feelings to sort through, lots of ways something like this can affect your life. I can wallow in self-pity with the best of them. But today I'm feeling like I've been given a gift. I don't know what's inside of the box yet, and it may take me a long time to unwrap, but there is a reason for everything and I can honour that. My friend Alix said to me last night that I will come out of this even stronger than I already am. Stronger, wiser, more compassionate, and I bet even happier with a greater capacity for joy than ever before. Time to turn the light on BRIGHT. I have written about grace before, many times actually...I believe in it. And sometimes it does come to us in disguise...like a strange dark angel that comes in the night to toss the heavy furniture about the room. There is a reason for everything.

A sacred illness is one that educates us and alters us from the inside out, provides experiences and therefore knowledge that we could not possibly achieve in any other way.

Feeling kind of like a superhero.  :)

XO