Friday, December 18, 2009

I had my first chemo!


And I swear there's a large part of me that thinks it may be my last.

It sucked. Really, really, really bad. Like I'd rather die of cancer bad. That is until I look at my kids. I've often used the expression that I would "cut off my right arm for my children". Trust me, doing chemo is the real life equivalent. But I don't know if I'm up for this. Even for them.

During the infusion their was a problem (but of course, nothing is simple) and I had to go across to the hospital to have a "port study" -- they thought perhaps my port was leaking. This would be very bad because the drug they were giving me can do alot of damage if it escapes the veins. But the port study showed no leaks so back to the infusion center I went.

I was told that typically nausea doesn't start for about 48-72 hours so we'd planned for Michael to go back to work and that way he would be home during the potentially worst part of it.

What's that they say about all the best laid plans?

When I got home I felt tired but otherwise fine...almost sent my mother home, but SOOOO glad I didn't. The vomiting began about 2 hours after I got home and continued, every ten minutes, for the next eight hours straight. We called the doctor for more anti-nausea meds...they were prescribed & given -- nothing. It finally got to a point where I was told that I would just have to ride it out and come back in the morning for IV fluids. Michael came home early and slept on the floor next to the sofa where I spent most of the night. My mother stayed in with the kids.

Today I have progressed slowly from all out retching to nauseous to queasy. I'm just so damned relieved to not be throwing up anymore I can't even begin to tell you. I went back to the infusion center and also got another injection, this one is to keep my white blood cell count up because I am doing dose dense chemo.

The bottom line is, across the board the general statistics are chemo only helps about 30% of people with breast cancer, even with all the individualized analysis of tumors, hormone receptor status and other various still comes down to only helping about 30%. It also can cause irreversible damage in various ways, from congestive heart failure, neuropathy, even minimal brain damage.

I'm gambling with my life either way.

While I sat, sofa-bound, puking in a bowl and not caring whether I lived or died, I swore to everyone around me I would NEVER do this again. That's it, I'm done. I'm already a vegan health nut I'll just kick it up a few more notches, maybe even fly to Mexico and go to one of those alternative cancer treatment centers/spas...meanwhile let them rip out my ovaries and I'll start popping those estrogen blockers asap. The doctors at the NJ Cancer Institute as well as several others all said that in the end the most important thing I can do to keep the cancer at bay is to cut off it's estrogen supply...I'm lucky to be so highly hormone positive. Luck being relative.

Today, as I sit finally able to type without getting nauseous and I look at the pitifully concerned expression my husband wears on his face each time I catch him watching my kids interrupt their all important playing to come over and give Mama a hug...right now I think that I will try another round...see if there is ANYTHING they can do to tweak my meds. Because I guess even with how awful this was (and I can't do it justice without being totally gross, trust me)...despite it all I'm too afraid NOT to do chemo.

Fear sits on both sides of me right now. It's not a good place to be.

Wednesday, December 16, 2009

I just don't know

I don’t know when I will be starting chemo. I see the doctor tomorrow.

I don’t know who to trust anymore when it comes to all these freak medical issues. I am tired of this, tired, tired, tired. I don’t know why it seems my body is falling apart piece by piece, right along with my life.

I don’t know what to write, what to blog about. I just don’t know what else to say. But I had to say something.

So this is all I have.

I'm still here.

Friday, December 4, 2009

Heart problem postponed chemo

This is freaking unbelievable...I mean, really, if there's a Murphy's Law just for breast cancer patients then clearly it is working overtime on me.

Went to have the port installed yesterday morning -- surgically all went well. Felt fine afterwards, no nausea, no real pain. The surgical center is about 1/2 hour away from hosptical where oncologist is. We got to the oncology office and ran into the chemo nurse, Eileen, in the hall. I like her very much, she is funny, smart and sweet. We stood there joking around for a few moments and then I went into the waiting room to hang out until they were ready for me. I was in good spirits. But suddenly my heart started racing. At first I thought maybe it was nerves coming on, tho I truly didn't feel anxious emotionally at all. But within a minute or two I realized this was not anxiety, something was very wrong. I told Michael to get someone and then all hell broke loose.

The nurses and doctors all looked worried (never a good sign) and they called the EMT's. Mind you, the hospital is across the parking lot and these people are medical professionals. To make a VERY, VERY long story short my heart rate reached 215 (normal is 60-100). I thought it would pound right through my ribs and out my chest like that scene in Alien. But emotionally I was know, other than being worried about what was happening. It was very strange. Eventually they were able to bring it down with some magical injection to just above 100 where it has stayed (hopefully) since then. I spent the rest of the day in the ER having tons of tests. I am now at home waiting for a cardiology consult and more tests. No chemo until they figure out what this is.

Chemo delayed AGAIN.

My feeling right now is that somehow this port has done is placed in a vein in my chest, clearly this is what caused the onset of the symptoms. But no one knows anything. They are all scratching their heads.

I have a previous condition, Mitral Valve Prolapse -- but have had no symptoms in about 8 years. I used to smoke 2 packs a day and weight 300 lbs, no big surprise I had heart flutters back then. But this was more than flutters. I think this port placement aggravated something, triggered some sort of reaction. But no one seems sure if this is what it is.

Either way, I'm not anxious, not scared, I'm just getting totally fed up. The greatest risk of cancer recurrence is in the first five years. Getting treatment clearly reduces that risk. I NEED TREATMENT!!! It has been over 8 months since I found the stupid lumps.

Yet here I sit, waiting. Again.

Wednesday, December 2, 2009

Wigging out

Tomorrow morning I go into surgery to have a port installed, and then off to have my very first chemotherapy infusion.

A port is a quarter sized disc that is surgically implanted just under the skin. A thin catheter tube connects it directly to a vein so meds can be given thru a needle inserted into the port rather than an IV in the arm. It is an outpatient surgery and supposed to be simple and safe. I'm frankly not thrilled about having it done the same day as chemo, but that's just how it worked out. I'm also not crazy about having yet another scar on my body thanks to cancer. Although compared to what my mastectomy left me with, this is nothing.

Switching gears...

On the house front, the first house I posted about is no longer an option. We actually made an offer but had immediate regrets and major doubts due to the road situation as I blogged about. However before we could withdraw the bid the owners accepted one from another couple anyway. It was not meant to be and I'm relieved. The second house, however, is still a possibility but let me tell you, it needs ALOT of work on the interior. We are considering it but would have to make a low offer so it might not work out.

Either way, all this house stuff has actually been very positive for me right now, despite the frenzy and confusion it has produced. For one thing it has given me lots of other stuff to focus on instead of chemo. Since we also put our house on the market we did a major cleaning from top to bottom and now I have a nice organized home to recuperate in to boot.

Today as my last preparatory act before chemo I went and got my wig. I chose the same shop my mother used in a posh upper-middle class town near where I grew up about an hour from here. I expected the shop to be nothing short of aristocratic and was quite surprised when it was completely the opposite. You went into the back door of a nondescript building and thru a dark hallway reminisent of what I would imagine a 1920's Speakeasy to be like. I half expected to have to give a secret password to be allowed in! It just never occured to me that many women would wish to keep this secret, that it was somehow shameful or embarrassing to wear a wig. The woman who ran the place told me that if I wanted to be discreet I didn't even have to use the full name of her shop on my check because it contained the word wig. It all made me feel sort of dark and gloomy.

The wig I chose is a close match color-wise, but the cut is completely different than I ever wear my real hair. This was per the owner's advice, the idea being it is less traumatic to use a wig of a different style because you won't compare it to your own natural hair. Makes sense, I guess. I'm not sure I like it, but then again it's hard for me to be objective right now.

I am dreading tomorrow. I keep trying not to freak...reminding myself that the chemo nurse assured me I would probably feel just fine tomorrow, nothing will happen right away. But the idea that I am pumping poison into my veins, chemicals strong enough to make my hair fall out...well, it's just damn scary. I mean, you want it strong, you want it to kill stray cancer cells for goodness sake. But I feel like this has already been such a long road, I'm weary and tired of this and want to move on, want it to be over. Yet I am realizing now it is just the beginning. Very soon, when my hair falls out, I will finally look like a cancer patient. It's real. I have cancer. Someday I will be a cancer survivor (if the fates allow) and will carry scars and battle stories with me into the future.

Not to sound Pollyanna, but hopefully sharing my experiences will in some small infinitesimal way help someone else who is facing a tough road, whatever it may be. Throughout my saga I've met so many women that have walked this path and each has generously shared their tales with me, to comfort, to inform, to help show the way. I thank them, and all of you, dear readers...all of you who are traveling right along with me. I can't imagine going this next leg alone.

Saturday, November 28, 2009

Out of the mouths of babes...

There's been all kinds of stuff going on in my life...chemo scheduled to start December 3rd, of course...less than a week now -- and then there's THE HOUSE. We took a quick look around and found a second house that we love (photos below). They are both very different, both have pros and cons. I could elaborate specifically but that's not really the point of this post

We have been agonizing over choosing which home to bid on. It's all complicatecd by my illness, naturally, so one might think I should forget the whole thing and wait until after chemo. Yet to let both houses go could be a serious mistake, they are singular properties and for us it turns out this is actually a pretty great time to buy, financially speaking.

I was talking to Megan (8yo) about all this...going back and forth, bemoaning my concerns, listing the positives and negatives. I've been driving myself crazy, truth be told. Last night in a fit of confusion at one point I lamented, "Good grief, Meggie, this is just the hardest decision I've ever had to make!" which she said, without missing a beat: "But Mama, I thought you said choosing between lumpectomy and mastectomy was the hardest choice you ever had to make?"

Indeed, I did. Indeed, it was.

Here I am going nuts over which home to buy. Heck...this is nothing. Aside from the fact that I'm blessed as all get out to even have such options available to me, let's face it -- any choices I ever have to make after the one I made this past summer pales by is SO not worth freaking out about. This is just life. And the point is it goes on no matter where I live.

Damn smart kid I got there.

PS: Okay, I know that house looks positively massive, and it is a larger home...but it also needs major updating, which is why it's even remotely in our price range.

Saturday, November 21, 2009

It's finally time

I knew this day was coming, but on so many levels I have been able to ignore the inevitability.


If you saw pictures of my gaping flesh at its worst and compared them to today, you would be amazed. The human body is extraordinary. Mind you, I am still disfigured, but so much less so than I could have imagined. And there is more healing to do...scars will fade, indentations will fill out. One would hope in terms of my mastectomy reconstruction that the worst is over.

But this wound closing also means I can start chemo now. The week after Thanksgiving I will begin poisoning my body in order to make sure no stray cancer cells that may or may not be lurking can ever survive to set up housekeeping -- or at least that's the hope, anyway. Today I am a completely healthy woman with a full head of, yes, I'll say it -- pretty darned nice hair. Within about two weeks time that will all change dramatically. I do not know, nor can anyone predict, how physically devastating chemotherapy will be for me.

During the last few weeks there's been a flurry of doctor appointments to various oncologists that I haven't blogged about. There's been some choices to make between two different drug regimens, along with dosages and actual locations for treatment.

I will receive my treatment at the local hospital, the doctor there is as good if not better than any of the rest, trained at Sloan Kettering, etc -- plus it's only about 15 minutes from home (either home, btw).

I have reluctantly chosen the potentially stronger of two different drug regimens, meaning it will take longer and could possibly make me sicker, cause more side effects -- but it has a better proven track record. However there is one drug of the three that I may use the newer version of in hopes that it will leave me with a lessened risk of permanent side effects -- particularly my greatest fear, which is neuropathy.

It has also been suggested that I take the first phase of drugs in shorter rounds, as in every 2 weeks. Although that leaves my body less time to recover between rounds it might have a higher success rate. This is called "dose dense". I haven't decided that one yet. I think I might try it -- I can change my mind at any point and slow down the time between rounds if my understanding is correct. There is a slight chance of heart problems with one of the drugs and I need to know if dose density increases it. Although because I am young it is believed to be a very, very low risk.

The particular chemo regimen I've chosen will take anywhere between 4-6 months, depending on dose density and my individual tolerance. The other regimen would have taken only 3-4 months. In the scheme of life that's not a huge difference in time but in the midst of suffering...well, you get the idea. This was a tough choice.

I swing back and forth between calm, purpose driven multi-tasking and literally laying in bed with the covers pulled up over my head and hiding from even the simplest of requirements. I find my mind tracing mental pathways back to other times I have endured...from the emotionally devastating to the physically dangerous. While former evidence of my apparent ability to overcome adversity gives me comfort, it also terrifies me. Is there a limit? Where is the line between what strengthens or diminishes us?

What will this all look like on the other side, will I even recognize myself? Having come thru some major traumas before I know that I might not. I also know that change wrought by ordeal is a double edged sword that can transform our lives for the better or for the worse. It takes sheer strength of perspective to determine which it will be.

That is what I wish for, what I need now: an unending source of industrial strength perspective.

Monday, November 16, 2009

What would you do?

As if I haven't already had to make enough agonizing decisions of late, now I can't decide what to do about the house we are considering purchasing. Once again I find myself in a quandry. I'll say this, tho, it has definitely taken my mind off my impending chemo, lol!

Here's the deal: Love, love, love the house. Did I mention that I love it? It is almost perfect. While it is at the tippy top of our price range it is quite doable. Thankfully the house doesn't need any work to move in. Even my furniture will all fit just right. All I will need to purchase is a new computer desk for me to write at, with an incredible view to gaze upon while I ponder, I might add.

So, what's the problem, you may be asking?

The house is on a VERY busy street. It's a county road, just two lanes...but the speed limit is 50mph. It's also in the middle of a straight run of secluded woods, meaning some folks tend to go faster than recommended. The house itself is only shy of 25 feet from the road's edge. That feels pretty close.

Of course first and foremost I'm worried about the kids. I also know that between the fact that we are the epitome of over protective parents and that children do grow up and learn not to run out into busy roads, Daniel & Megan would no doubt always be safe. But there is that idea of a slim chance, that awful reality that if they somehow pulled away or got careless at just the wrong moment and went a couple dozen feet away from our front door they could be....well, I don't even want to say it.

And talk about life imitating art! In my novel, for those that don't know, the family lost a son about the age of my own because he was sadly struck by a car when he managed to get out of the house unbeknownst to the parents. Now, these parents were wrapped up in their own issues and were careless...I'd like to think that would never happen to us. I'd have child safety locks on my child safety locks I'm that nuts about keeping my kids protected. But still, it gave me an uneasy feeling to think that here I am writing about a child being tragically killed by a car and I decide to put my own children more in harms way than they are now.

Now, let me say there is a sturdy little picket fence across most of the front of the property which we could continue to essentially completely block access. Also, with the addition of a simple gravel driveway the door which the family could come & go from, seen here between the well and the tree, is much further from the street than the official front probably at least 50 feet...and that area of the yard is blocked by not one but two fences (thanks to it being behind the garden). And further -- most of the entire 2.5 acres of land is behind the house and practically 2 acres of it. There's plenty of room to play and explore (with supervision) far, far away from any danger. You can see the back yard is quite expansive in this picture.

I should also add that Michael is very artistic and handy...he has wonderful carpentry skills and is a folk-artist in his own right. This property being on a main drag would open up the opportunity of him selling some of his work, we could even spruce up the little old barn and open it as a sort of impromptu rustic shop/gallery now and then. In fact, we once considered buying commercial property to have a little shop so this is not a new idea. What with the garden and perrenials and herbs, we could also do up a little farm stand right there by the road side -- there's even a small parking lot already there.

In terms of noise, when things are quiet inside (rare in a house w/kids, lol) you do hear the cars go by, but not as loudly as you might think. I believe that this old house has rather thick walls because the sounds from outdoors are kind of muffled. The nice thing too is that the main living room is at the back of the house so it the most quiet. Even with a screen door open I was surprised at how buffered the noise was -- but it can always be heard, no denying it. Where I live now is pretty quiet. It's also not a busy street...because of a blind curve I don't let my kids play or walk by themselves, but hours can go by without a car. I'm a bit sensitive to noises so this is all a concern.

I am back and forth about this. We bought our small home 15 years ago and intended it to be either a starter house or something we expanded. Yet in all these years we have looked at many houses, never finding one we wanted to make an offer on, good houses here are hard to come by. The house in question is move in ready, larger than my home now. It clearly oozes charm. But my present house is kinda cute too and could be easily expanded, maybe even for less money...and while we have a smaller amount of land (1/2 acre) we also back up to protected woods, just like the other house.

What would you do? How do you feel about busy streets? Would that preclude you from buying what otherwise could be your dream home?

Should I stay or should I go?

Monday, November 9, 2009

I'm in love

I don't know about you, but I have a mental list of homes that I have always loved. Some are no doubt out of our league financially speaking, but several could be within reach if they should ever come up for sale. I've lived here in this town for 15 years and only once has one of these dozen or so houses been on the market. Unfortunately it was a smidge over the top of our range and had a bidding war already going on. We also were surprised at just how small it was on the inside. It lacked a few necessities we have in our present home. So we let it go.

Right before I was diagnosed another of my favorite houses came up for sale. We called and it was out of our budget. It turns out that it has almost three acres of land and is larger than it looks from the road. The home is an historic 1880's colonial complete with cottage gardens and authentic well out front. I always thought it looked like the kind of house a writer would live in...romantic that I am. Not that a writer couldn't also live in an industrial loft...or a rustic cabin...or some other such place. I know a novel can be written anywhere...but ambience doesn't hurt either -- I'm easily inspired by my surroundings.

Anyway, Sunday Michael and I were out & about and drove past the is surprisingly still on the market and they were having an open house. I say surprisingly because even in this economy I thought it would already have been sold. Turns out not only is it still up for sale, but they have dropped the price in we could theoretically afford it now.

Yes, I am crazy. Yes, I know this is not the time to even think about this for soooo many reasons they are beyond counting. This is absolutely not practical on several levels. But I am still going to think about it. I may even do it!

A person with cancer wouldn't do this. And that is precisely why I want to do it. I can't explain it any better than that.

We went inside and fell in love. Wide plank oak floors, a sun room, a view of the gorgeous back yard, a small dilapidated barn...

Okay, it is on a very busy county road and the front of the house is quite close to the hear the sound of cars whooshing by while you are in the kitchen. But the kitchen has the cutest window over the sink and more cabinets than I have now.

Yes, it's old and not as easy maintenance as our home now...but it has been very well cared for...there's also a rolling hill in the back yard that the kids could sled down come winter. It's surrounded by protected woods. It has a fenced in garden just screaming for herbs and vegetables. And I just know that in one of those upstairs rooms I could finish my novel.

Speaking of which -- tho I haven't posted some of the excerpts, there are several that prominently feature the homes that my characters live in. Homes are like characters in and of themselves. This house is a place I could see myself in. Don't get me wrong, I like my present house well enough, but I have never loved it. Yet I always thought I would live in a home that I was crazy about...that I truly adored.

I would totally love this house. I already do.

So, we'll see...if it doesn't happen I will chalk it up as not meant to be. But here are some pix in the meantime:

Thursday, November 5, 2009

Like mother, like daughter

My mother and I are vastly different. We often don’t see things the same way and have opposite approaches to most everything in life, from motherhood to style. Still, I will say that when it comes to fashion I do take a few cues from Mom -- in my own way. I also have been known to ask her advice on what to wear to particular occasions when I find myself in doubt. So when I was wondering recently what one typically wears to chemo infusions she was the first person I asked. I specifically wanted to know what she wore to her treatments two years ago.

Mind you, my mother was the original fashionista in her day…so I planned to take what she said with a grain of salt. Mom puts make-up on to go to the mailbox…she wouldn’t dream of ever appearing out of the house in sweats and is a woman who was once known to go months without ever wearing the same garment, let alone the same outfit. Rain or shine, sickness or health, old or young my mother has always been put together appearance-wise. During her cancer treatment I never once saw her without full make-up and styled wig -- plus dressed cute…even if it was just for a visit with her grandchildren.

But I never went to infusions with her. Back then Daniel was a baby and her chemo day was a day Michael worked. So her answer to my inquiry about chemo clothes surprised me: She wore the exact same thing for each and every single treatment. Right down to her shoes. When I asked if it was because others were uber casually dressed she surprised me again and said no. Mom noticed what everyone else wore, of course. She said sometimes women came from work and were dressed rather nicely…and yes, some women came in the equivalent of sweats & t-shirts…but still others came in some version of jeans and a blouse. She never noticed anyone wearing the same thing twice, and apparently she usually saw the same people treatment after treatment. However for some reason my mother chose to practically wear a uniform for the only time in her entire life. It hangs now in her basement. She’ll never wear any piece of it again and says she’d like to burn it…but it’s still there, collecting dust hanging from a pipe in the ceiling. It was as if she didn't want cancer to touch any of her real clothes...a way of holding the awful reality at bay, perhaps. Clothing as a defense mechanism, if you will.

As I have been getting ready for my own treatment I once again cleaned out my closet…just like I did at the beginning of summer before my impending mastectomy and reconstruction surgery. At first I figured that once again I would only need comfortable, practical clothes – lamenting the fact that many of my winter things won’t get much use this year. Since I will be avoiding crowds and other unnecessary exposure to germs at the height of cold & flu season, I won’t be venturing out to do my holiday shopping or go to large festive gatherings.

But I decided not to take my cues from my mother’s wardrobe choices this time after all. Instead I am planning chemo outfits that yes, are comfy, but are also pieces that make me feel good about the way I look. My favorite cardigan, the soft new black sweater I bought, my most sparkly pins and the best fitting jeans I own…these are the things I will try to wear to chemo. And if I am able, I will snap a picture before leaving for each treatment since it is likely to be some of the only outings I will go on.

Because even though that’s not how my mom did it, I learned the value of putting my best foot forward from her…learned that appearances matter. Of course I know they matter not so much in terms of the impression you make on others…but more importantly, because of the way it effects how you feel about yourself on the inside.

Thus, I’ll wear some cute clothes for chemo and try to look at least a little nice. Guess I am my mother’s daughter after all – but totally in my own way, of course.

Tuesday, November 3, 2009

Hold that menopause

I mentioned in a previous post one of the oncologists I saw suggested starting ovarian ablation & estrogen blocking drugs now, rather than after chemo, since my chemotherapy has been soooooo delayed by this darn wound.

Well, scratch that.

For one thing, it would really only cease one, maybe two menstrual cycles at this point -- not really worth it. Additionally, chemo will effectively put me into rapid menopause anyway, often known as "chemopause" by those who've experienced it.

So the other oncologist (a woman) thought, why torture me more now for such a small benefit? Had anyone known the skin necrosis would delay things this long, yeah, sure, it might have been a great idea. But since no one did predict this holdup, that shipped has pretty much sailed.

So we're hitting the pause button, however briefly, on menopause.

It's kind of weird knowing that right now as I type this I am PMSing for probably the last time. The last of my eggs has been released, the last time I'll bleed is approaching. While I wouldn't say I loved getting my period I did love what it represented...the cycle of life, the particular gifts of being a woman. Even if one never conceives children it is always there, a symbol of potentiality, of promise. Menstruation is a connection to Mother Earth, to the lunar cycles, to the wild side of our own natures. Monthly bleeding connects all does the natural cessation of that bleeding.

But there is nothing natural about what will happen to me now, and that makes me sad. I wasn't looking forward to menopause...admittedly, since I knew HRT was out of the question due to my blood clotting issues I was even a little fearful of "the change" -- I watched my mother pretty much go deeply insane for a while at the onset of her menopause. Still, I had hoped that maybe I would be spared that...maybe somehow with some herbal supplements and such I would manage to muddle thru it with some modicum of grace.

But that was supposed to be about 10 years from now. It was supposed to be a gradual process. I was supposed to even have the option of giving birth to another child, perhaps -- or at least the illusion of that option.

I will miss getting my period...both biologically and psychologically. I will also miss it spiritually, strange as that may sound. I will miss knowing every month that my body was making a fresh start, a cyclical reminder to me that all things are possible.

Tuesday, October 27, 2009

101 Dalmatians or I'm seeing spots before my eyes!

How about a post that doesn’t mention the “C” word, not even once?

And further still…how about a blog entry that just talks about simple mom stuff for a change…you know, the ordinary happenings of domestic bliss? These little seemingly mundane moments actually always end up being amongst the most delightful memories I have, so I thought I’d share this little slice of life.

Halloween happenings…

Megan will be a Dalmatian for Halloween (thus the post title). Megan is utterly crazy for Dalmatians…yet she really doesn’t care for the Disney movie. I think perhaps the villainous Cruella de Vil is a bit too much for her.

Daniel wanted to be a firefighter so this worked out kinda cute…but as any good mom knows there’s every possibility that Danny will want to be a Dalmatian too, and at the last minute of course. So Mama is making two doggie costumes just in case :) This involves white sweatpants and hooded sweatshirts and painting lots & lots of little black spots and dots all over them. I bought some cat ears & tails and will adapt them so as to look less feline. Voila – Dalmatians!

Michael and I usually dress up a bit to go with the kids trick or treating…much to Mike’s chagrin for he’s not a center-of-attention-kinda-guy ;) This year we are going as firefighters ourselves…we bought plastic fire hats and are putting yellow masking tape stripes on jackets we already had. That and some boots and well, there ya go – instant fire fighters.

Food fight…NOT
Some may wonder what vegans like us do about Halloween. It’s really not that difficult. Lots of candy is surprisingly vegan…stuff like most lollypops, Twizzlers, Good ‘n’ Plenty, some dark chocolate, taffy, pretzels, Oreo cookies, etc. That stuff Meggie keeps. The other stuff we trade her for treats we’ve already bought. She’s quite happy to do it – we’ve told her she is old enough at 8yo to make her own decisions about occasions like this and she still wants the vegan option. If she ever changes her mind, that’s okay too.

Daniel won’t be eating candy. Daniel doesn’t eat hardly anything. He will eat yogurt (soy) oatmeal, carrots, applesauce and prunes – all of it still the babyfood version. He won’t chew anything. Really, give the kid a cookie even and he’ll lick it or sniff it but he won’t bite it, lol. As strange (and frustrating) as that sounds I’m not really too worried. Perhaps not ironically Megan was the EXACT same way. But by the time she hit 3 ½ or 4 she began expanding her repertoire in leaps and bounds. This too shall pass for our Daniel. Patience...I’ve never heard of a kid going off to college who still eats babyfood prunes, lol.

Okay, that’s enough of a painting break for Mama – I’ve got lots & lots more spots & dots to address. Hope this little slice of life was at least somewhat entertaining. It sure was a nice break from “you know what” for me too ;)

To all those that celebrate I hope you have a howling good Halloween!!!!

Wednesday, October 21, 2009

A worthless cure

Before my breast cancer diagnosis, if I were reading this blog…a simple little style blog by some SAHM… and I saw this saga begin to unfold I’d be thinking, “Holy shit, that poor woman!” and I might also be quietly wondering if something like this could happen to me...subconsciously hoping to find some difference, something unique about this unfortunate woman with breast cancer that separated us and meant I was not in danger.

But there is nothing particularly different about me.

And if you are a woman reading this you are in danger.

One in eight women will get breast cancer sometime in their lives. That’s the worst math ever, if you ask me. It shouldn’t be ignored. It should make each and every one of us incredulous, angry and proactive. But it usually doesn’t. I totally understand that. I wasn’t proactive or incredulous or angry either.

But I am now. And I don’t want to be alone.

Yes there is better awareness today, earlier detection methods… new drugs, new tests, new treatments. Breast cancer is fast becoming considered almost a manageable disease by some standards, tho not by mine, not by a long shot. Instead I find myself wondering more and more…what about prevention? I mean, if I were you reading this blog that is what I would want to know more about. Is there anything I can do to try and prevent getting this awful disease in the first place?

Turns out there are things you can do. Granted, they are not a guarantee, but doing nothing clearly shouldn’t be an option either. I’m learning as much as I can about prevention because the same things that prevent breast cancer from occurring in the first place will also help keep it at bay once you’ve had it…because I want to prevent my children from ever having to face what I am facing now.

So, to do my little tiny part during "Breast Cancer Awareness Month" I’ll be blogging about what I feel are preventative measures we all MUST be aware of to protect ourselves, our friends, our mothers, our sisters and most importantly – our collective daughters, from this hideous disease. Whatever you think your personal risk level is…remember, over all it is 1 out of every 8 -- a pretty crappy statistic.

Let’s start with this: Know your family history.

Now, let me emphasize that more cases of breast cancer occur in women with ABSOLUTELY NO FAMILY HISTORY. That being said, having a familial pattern does greatly increase your risks. Oh, and don’t think if your mother and her family line are cancer free you are off the hook. Men also carry the presently known inherited genetic mutations that greatly increase the risk of breast cancer. These mutations occur in tumor suppressor genes that we all have and are commonly referred to as the BRCA 1&2 genes. The fact that mutations in these genes can be passed down from our fathers is something I didn’t know before I got cancer. Moreover, it’s not just breast cancer in your family tree that raises your risk…if there is colon, ovarian or prostate cancers amongst your relatives all can indicate the genetic link for an elevated risk of breast cancer occurrence too.

(CLICK HERE for more info if you think you may be a carrier of the BRCA genetic mutations...and for a GREAT blog read from a brave woman who does carry the mutated gene, check out Goodbye to Boobs --brilliant, witty and informative)

However, you should understand -- it’s not just about your family tree when we talk about genes.

Not to get too sciencey here (is that a word?) but ALL BREAST CANCERS ARE GENETIC– they are just not all hereditary. What’s the difference? Genetic diseases and disorders involve mutations of the DNA in cells, you know, the stuff that is sort of a blueprint for how to build more cells…something we do constantly. There are basically two kinds of cells, ones involved in reproduction…call them sex cells, and ones that aren’t, called somatic cells. The DNA in sex cells determine how you get hereditary factors, like everything from your eye color to a BRCA gene mutation for breast cancer as I mentioned before. But the other kind of cells, the somatic cells, carry DNA mutations as well…copying errors during normal cell division that cause tumor growth.

But why does that happen, what causes these cells to go astray, as it were? If we knew that definitively we’d probably actually be close to a cure. There’s likely not one single answer here…but essentially the DNA is damaged in some way not related to hereditary other words the faulty DNA is not something one is born with. It is damaged by other influences that occur throughout our lives – and there’ll be more on how that might happen in a future post.

Without a doubt there are many other genetic links to breast cancer as yet undiscovered (or under reported) -- inherited or otherwise. If you’ve read any of this blog you’ll remember that my mother was diagnosed with breast cancer just two years ago. I had the genetic testing for BRCA 1&2 gene mutations and was found to be negative, as was my mom. Do we share an undiscovered hereditary genetic link or was it communal environmental exposures…or both? So far there isn’t a clear answer…for my mother, for me -- and a lot of other women, too.

And that's where the problem lies, IMO.

Nearly all the focus seems to be on new drug treatments for women who already have breast cancer. As much as that is important to me in particular, it isn’t at the top of my priority list. I want to know how to keep my daughter…and my son for that matter, from getting this. With what I’ve learned so far I’m making a decent start…nutritionally, environmentally, etc. I intend to share that info here in other installments. But in the meantime I hope I’ve got some of you started on thinking outside the box during this month of pink ads for breast cancer awareness…hope I’ve got you thinking about awareness from another perspective. I really hope that maybe if a few more people shift focus to prevention we can stop this disease in its tracks and diminish the need for medical technology after the fact.

An ounce of prevention really is worth a whole lot more than a pound of cure. It makes the cure worthless. That’s what I want. I want the cure for breast cancer to be worthless because it’s no longer necessary.

(stay tuned as next time I’ll talk about knowing your body and understanding how fat effects your risk)

Sunday, October 18, 2009

10 things I will do after cancer treatment

1. Go with my family to Cape Cod to show Daniel the ocean. We were supposed to go this summer, but that got waylaid. I've been going to the Cape since I was 4 years old and it is my most favorite place on earth...the energy there is unique and I feel more myself on those windswept shores than anywhere else. We were blessed to share that magical place with Meggie and have precious I can't wait to share it with both my babies.

2. Take up belly dancing. Hey, I've got a flatter tummy now, might as well flaunt it, lol! It's something I always wanted to do but was too self conscious before. I think it's damn sexy and no doubt I'll need a little boost in that area after this is all over with (be forewarned Michael!)

3. Go back to my 1000 words each day. I miss the ritual of sitting down at the keyboard every night at the end of the day and working on my novel. That wonderful flow, the dance of rearranging words, that connection to my characters...I need to know what happens next (and I think notSupermum will positively explode if she doesn't find out what happens to Nola!)

4. Get in touch with old friends that I've been thinking teenage best friend, the beloved headmaster from highschool, the woman Mike and I worked for when we first met, maybe my old band-mates...and several others who have crossed my mind since I was diagnosed. It's really the people in our lives that matter, not what we did or didn't do.

5. Catch up on correspondence, most especially thank-you notes/emails -- there have been so many acts of kindness that have touched me, both in the blogosphere and "real" life, that I feel the need to recognize the generosity of spirit from each individual that has shared with me and my family. Every kind word and deed has meant so much that it's impossible to convey my gratitude, but I'd like each person to know how they have impacted my life during one of the most challenging times I've ever experienced. It truly amazes me how important these connections have much it can really contribute to my sense of well being. I have been blessed indeed.

6. Get organized once and for all...I want to let go of things, of the material objects that weigh us down. As reformed pack rats we made great strides since Meggie was born, truly it has changed our lives so much for the better to weed out and discard the possessions that we don't need. But there's lots more to be done and I feel compelled now to be even lighter in our footprint upon the earth.

7. Somehow share my experience with breast cancer in a way that helps other women. I don't know if it's volunteering, activism, writing or what, but if I can use my experience in any way to help other women...and especially to help them avoid this disease, then I will feel like some good could come out of this mess.

8. I look forward to once again waking up in the morning and sitting at the dining room table, sipping tea, gazing out at my little corner of the world thru the lace curtains while jotting down simple musings or snippets of poetry in my trusty composition notebook. I miss that gentle morning routine...a few stolen moments before the children get up and the day belongs once again to mothering and chores. Instead, for that brief bit of time, the day is mine and mine alone and it nourishes something in me that is starved of late.

9. I want to make more memorable moments for my children...they can be small things, simply being together, engaged in the present...but I want there to be more opportunities for making memories. I am under no illusions, my life could be considerably shorter than I'd planned -- but then again, that could be true for every single person reading this. I just happen to know the odds are not as favorable for me as they once were. Be that as it may, I am here now and my kids have me today, tomorrow and the next. One of the things I want to keep from this experience is the realization that life is fragile and memories are's what we really give our children, what they carry forward with them. Our words, our actions, create permanent grooves in the life they carve for themselves.

10. Most of all I want to laugh, to have fun, to be silly with utter be unleashed, free. I wish I spent more of my energy enjoying life like that before. I can still imagine a happy future sometimes...catch a glimpse of what that might look like. Other times, too many times lately, that vision is illusive, blurry...barely discernible in the haze of my present situation. Cancer is such an immediate and demanding focal point, so all consuming and encompassing by necessity that I can lose sight of anything remotely resembling unfettered happiness. But I want to let go of cancer as much as I can and move on. It might take work, it will no doubt take patience. I have no idea what irrevocable changes I may be left with in the wake of treatment. I have no idea how successful treatment will or won't be. But somehow I have to tap a source of joy for myself again. The nine other things on this list are my path back to that. I just have to forge ahead, step by step, day by day, little by little as best I can.

Sunday, October 11, 2009

What lies beneath

On the left you see me and my wound VAC ready for a Sunday outing. Looks like a purse, albeit fairly unstylish, lol.

But sans blouse & vest you can see some of what goes on with the tubing (yes, I really DID pose on my deck in just a sports bra -- crazy or brave, take your pick!) The tube comes out of the top of my bra from my right breast and then I hook it thru my belt loops to help control it since I carry the VAC on my opposite shoulder.

(You can also get a glimpse of the results from my tummy tuck.)

I can tell you that this VAC is a miracle healing apparatus, the wound looks much better than it did -- surprisingly so. I never would have thought it could heal to this extent.

I felt compelled to share this because when I describe the machine to most people it sounds scary or barbaric...a sterile sponge taped over a wound with a tube attached to a machine that constantly sucks on it is not exactly appealing to say the least. But in reality it's not so bad, as you can clearly see.

Michael and I had a lovely lunch and did some shopping...oh, and I was fully dressed during all of it, I swear ;)

Friday, October 9, 2009

A tip for dressing the post mastectomy body

(Actually, if you have any issues with your bustline this entry could be of interest)

This may seem a frivolous subject at first glance – really, who cares what one wears while they are recovering from breast cancer? Clearly comfort is the word of the day immediately after surgery…soft, baggy clothes are essential, especially items with buttons, snaps or zippers to make limited arm motion easier and avoid having to put anything on over your head.

But what about after that?

Life goes on. There’s your job, errands, and typically many miscellaneous doctor visits. As I well know now, battling cancer is not a short-term process…a lot of life gets lived during the various phases of treatment and recovery. Depending on your individual situation you may need anything from an entire professional wardrobe to just something decent to run to the store or pick up the kids at school.

Speaking personally, now that my midsection swelling has gone down I can almost fit back into my jeans again – but the top half of me is a completely different story. I have to hide bandages or tubes at the moment, but even without that issue I still couldn’t wear my old bras and probably won’t be able to for some time. I always wore good supportive bras and really notice the difference without them. And because like a lot of women I was always trying to camouflage my tummy, most of my clothes also seem to accentuate my chest with empire waists or v-necks. That look TOTALLY doesn’t work right now on many levels and I’m betting it probably isn’t flattering or comfortable for most women post-mastectomy, for a while at least.

So what I’ve found that does seem to work great are various button-down style shirts and blouses…and I suspect that they would be effective for many women of all shapes and sizes in similar circumstances. First and foremost the blouse has to fit properly – no gaping or pulling at the button area; frankly that would only make matters worse. To detract from any asymmetry issues try a darker hue or an all over pattern. Shape-wise, a princess seam that tapers in slightly at the waist will flatter or create an hourglass figure and make you feel more feminine – something that is often much needed emotionally after surgery. Pockets on the chest can either work for or against you, depending on what type of reconstruction you had (if any) and what size you are. I’ve found that some flap pockets actually make my breasts look a little higher up and less droopy, others, not so much.

The length really depends...try to hit at mid hip for regular jeans or pants but you could go longer with so called skinny jeans. And if you have the waist for it, try belting -- just be advised, if you belt too high up and close to under the bust you defeat the entire purpose of trying to find another area of focus. A shirt tail type of hem, which is curved, works great for some, but if you are concerned about your hips a straighter hemline might work well. And there are lucky women who are brave enough to tuck their shirts in -- experiment and see what looks best.

If you are not too curvy, stripes can be great to elongate the body. No matter what your figure type the vertical line of the buttons down the front emphasizes the center of the torso and shifts the eye away from the breasts. Since v-necks are flattering for most women you still get that effect too, but if the shirt also has a collar that further draws the attention back up to the face rather than below the neck. For those of us wearing camisoles or sports bras these shirts are additionally nice because we can let the cami peek out from the blouse to add another dimension of color or texture with layers.

A button-down blouse or shirt is a classic so even after your body recovers any pieces you invest in will continue to get good use. They fit every style sensibility and work with practically anything, from casual jeans to more dressy or professional looks. They also come in a myriad of fabrics and sleeve lengths to work any time of the year.

In the end, feeling like you look good can matter alot more than you think at a time like this. It can contribute to your state of emotional well being thus helping to speed your recovery, especially when you feel less like a sick person and more vital and healthy. Any boost of confidence in your appearance can help restore control over at least one aspect of life. The first time after surgery that I was able to look even a little like my old self gave me a sense that there would be an end to this…a return to, if not my exact old life, then at least some semblance of a new normal.

I’m not saying that anyone should ever feel the need to hide or otherwise compensate for their figure – whether due to surgery or anything else for that matter. But I know that a lot of women feel losing their personal sense of style, or not looking like themselves when they gaze in the mirror, is yet another in the long line of cancer’s many assaults upon our lives. But with a little simple rethinking you can still just grab a blouse, throw on a pair jeans and move forward through treatment, and more importantly, beyond it.

Monday, October 5, 2009

New plan: menopause!

Sooooo, here's the new plan: ovarian ablation now -- as in shutting down my ovaries ASAP.

My wound, while doing very well and visibly healing even to my untrained eye, is still taking a while to fully close. Estimates are at least another month before I can even think of starting chemo.

That's just too long.

Oncologist I saw today says why not start the hormone suppression now so at least any potential cancerous cells floating around my body are starved of estrogen (ER) & progesterone (PR) while I wait to start nuking myself with chemotherapy. For those keeping track my tumors were strongly ER/PR positive (a good thing) so depriving my body of these hormones is necessary anyway, it's just usually done after chemo.

Normally a pre-menopausal woman like me would take a drug called Tamoxifen for about 5 years. But Tamoxifen causes blood clots and with my known genetic mutations it is NOT advisable. So instead they need to essentially turn me into a post-menopausal woman so I can then take the drug typically used for that stage of life. It's an aromatase inhibitor (basically an estrogen blocker) usually the drug Arimidex.

My ovarian function will be chemically stopped via injection, usually either Lupron or Zoladex -- they are what's known as GnRH agonists...they cause the pituitary gland to cease production of certain hormones and that in turn prevents ovulation. The bottom line is no more periods, no more ovulation, no more fertility.

As someone who struggled with infertility and yet was blessed to have two of which was only three short years ago, this is all disconcerting to say the least. We are lucky to have the two beautiful healthy kids we do considering all we went thru. But I suspect if I were younger I would try and have more children. Truthfully we never completely ruled it out despite my age now. According to my perinatologist I have the womb of a 30 year old (if only I had the body to match, lol!)

But by as early as next week all the choices will be gone. Boom. The end. I mean, I could freeze eggs or create embryos...but when would I have the chance to use them? The earliest would be age 52. I know women do that and I think more power to them. However for my life that would be a bit later than I think is advisable...not to mention that the hormonal changes during pregnancy would spell trouble for my chance of cancer recurrence anyway. This is it. No more babies.

I always expected menopause could be difficult on many fronts...not the least of which is the emotional issues for me regarding loss of my hard-won fertilty. But I also figured it would happen somewhat know, sort of sneak up on me a little before I had a chance to really let it fully sink in. The natural progression of intermittant periods and various symptoms would gradually increase until I knew I was smack dab in the midst of it. I'd have time to adjust, to get used to the idea if not the physicality of change.

But this is so sudden, so quick, so...drastic. And I have to admit I'm really scared of the side effects...there's no HRT for me, no bioidenticals. We're talking cold tofurkey (remember, vegan here). Or maybe that should be steaming tofurkey considering the hot flashes I will no doubt be experiencing shortly ;)

All weak atempts at humor aside...I really do know I have to do this. In fact this is the one thing all along I have been sure of. My surgery choices were up in the air...chemo or no...axillary dissection or not, but hormone suppression was a given based on my biopsy report from way back in April. It's probably the MOST important part of preventing my death from this disease, second only to removing the actual tumors themselves.

So brace yourselves along with me, dear readers...within the next week or two I take the menopausal plunge. Hold onto your seats and get the fans and ice chips ready!

Tuesday, September 29, 2009

Blue ribbons

It's gotten to the point where I dread when people ask me how I am. I'm really not sure how to answer that. On one hand I am doing well, all things considered -- I'm in no significant pain, a little achey still from the surgery but not even worth speaking of. Cancer-wise nothing has changed yet...still healing from the wretched wound, still waiting to do chemo.

I'm in a holding pattern, pretty much.

Meanwhile I am extremely fatigued. Not sure if it's due to the slight anemia I have from blood loss or just the pace I've been running at...traveling for hyperbaric treatments and doctor appointments, keeping up with the kids -- I have moments where I feel bone so tired I can't move. I wish I could crawl into bed and sleep for a week.

I have to admit that some of my exhaustion might be depression oriented. I realized the other day it's now been six months since finding the lumps. Six months of living, eating, sleeping and breathing cancer. It's hard to think of anything else, and believe me I try. Distraction for any length of time is nearly an impossible feat. My own body won't let me forget, it feels foreign to me now every time I move...and then there are little things like TV commercials for bras, or PSA's for the impending breast cancer awareness month...a pink ribbon magnet on the car in front of me while I'm running errands -- heck, just making plans for the week and trying to keep schedules straight comes back to something having to do with my breast cancer. There's pretty much no escape.

Even little Daniel turning three soon has its reminders. I think about my pregnancy and his birth every time I go for hyperbaric treatments because they are at the hospital where he was born.

The team of doctors we used for my pregnancy were across the street and each time we would go for a prenatal visit I would look at the hospital and happily think, that's where I'll finally get to meet him, my miracle baby number two, my son. The place was obviously under some sort of construction then and I wondered if it would have an effect on my stay. But it was a seperate building, a new center in fact. It was a breast cancer center.

Now I think about his birth and realize the cancer was there growing inside me while he was, like some evil parasite laying in wait to pounce on my health and try and destroy my family. As I nursed my baby son with love and hope for the future, cancer was lurking in the same breast that flowed with mother's milk.

They finished construction of the breast cancer center near the end of my pregnancy. Multiple pink ribbons were tied 'round all the trees in front of the hospital in celebration of the grand opening. I remember Meggie saying once it was too bad they weren't blue since I was having a boy.

Too bad indeed.

Friday, September 11, 2009

Of towers & tumors

Yesterday was my 46th birthday. It was the first birthday since being diagnosed with cancer. I spent my day at the hospital, first seeing the plastic surgeon for a regular visit and then the oncologist's office for bloodwork. These places have become routine, part of the eb & flow of my life now. I barely gave it a second thought. But in reflection, that's kind of sad, isn't it?

I imagine that every birthday from here on in will take on new meaning. I will be celebrating not just the day I was born, but my survivorship, another notch on my belt as the years (hopefully) roll by. Now all my birthdays will have an extra reason to celebrate tacked on to them. Perhaps it sounds ungrateful of me, but I found myself thinking that I really liked my birthdays the way they were...just a day to mark the usual passage of time… still believing I had plenty of it.

I never minded getting older, I proudly tell people my age and have no hang-ups about it. But now whenever I think of my age I can't help but calculate in my head...if I survive X amount of years, how old will I be then? It feels different. So I tried to treat yesterday like it was just any other day. The plan was to do a little celebration today when I had more time and Michael was home. Mostly for the kids' sake, as to be truthful my heart wasn’t really in it.

Today started with a wound review session from my favorite visiting nurse…and then after that I had to run to hyperbaric therapy. That whole process took six hours. Six hours devoted to cancer today. Probably about the same amount as yesterday, actually.

I was feeling pretty down about it all until I sat in the waiting room at hyperbaric medicine and looked up at the TV. They were reading the names of the World Trade Center victims. Of course, I know that 9/11 follows my birthday, living in the NYC area it has especially not escaped my notice. But I guess this year I got all caught up in cancer and sort of let the memory pass without acknowledging it.

On that fateful day 8 years ago I was home alone, still very sick from my emergency c-section and all the complications. In fact it was the first time I had been alone since Megan was born about 5 weeks earlier. My mother was planning to come later in the morning so it was only supposed to be for a few hours…just a few hours between when Michael left for work in Manhattan and my mother would come.

Ironically, September 11th had been Megan’s original due date. I remember joking with the doctor and asking if we could change it to my birthday the day before. What a wonderful gift -- a baby on my birthday after so many long years of trying.

But life had other plans and instead I almost died delivering her 5 weeks prematurely. Life often has other plans.

And on that day…that horrible, tragic day 8 years ago, I awoke from an early morning nap on the sofa to the sound of the phone ringing. I looked at the TV, left on while Meggie and I dozed, and sleepily answered the phone to hear my mother’s panicked voice. She was saying something about being able to talk to Michael for a few moments right after “it” happened…that at least he was okay as of that conversation…to try not to worry. All the while I am trying to make sense out of what my mother is saying, I am also looking at news coverage of a towering inferno on the television. And then the caption underneath finally became clear…what I am looking at is the World Trade Center. But there was only one tower. One. One where there was supposed to be two…where there had always been two towers for all these years now there was only one. How could that be? I asked my mother why there was only one tower. She didn’t answer. I said it louder…finally I shouted, “Where is the other tower???” She said quietly, “It collapsed…it’s gone.”

Just then the second tower fell. I clutched Megan and felt dread run through my body. It all made sense. Somehow, inexplicably, I had lived through her birth because the Universe or God or Whatever, was going to take Michael instead. Manhattan was under attack in some bizarro world and today I would become a sickly widow with a new baby that her Daddy wouldn’t get to see grow up.

All that day I sat with the phone in my hand. All that day I watched the TV with a sick heart like every other person with a loved one in NYC…like every other person in our country…in the world. But as we all know my husband came home. As we all know so many, many did not. Too many mothers & fathers & sisters & brothers & children…people loved and adored, needed and wanted by their friends and families…too many didn’t come home.

Thankfully Michael was in no great danger that day, tho I didn’t know that until midnight, until he managed little by little all day to make his way thru the chaos of NYC and walk across the George Washington Bridge…finally able to meet my mother who drove him all the way from Fort Lee to our front porch where I hugged him so hard I think I hurt him. We spent the next few days shell shocked and realizing how fragile life is…how lucky we were.

And again today as I listened to the all too familiar names of the dead being read aloud and I saw the towns they were from…the town where I grew up, the town I married in, the towns my babies were born in, the town I now live…again today I realized that I am still lucky. Today I am here. I now have two children, both healthy and happy. My husband came home from work again. I lived another year and a day.

Today I will make that be more than enough in their honor.

Thursday, September 3, 2009

First post-op photo!

Thought it was time to show my face...and the rest of me too ;)

It's been around 40 days since my surgery. Other than my necrotic wound issue I am feeling quite good physically...I can move around fairly well now. My abdominal area is no longer what I'd describe as painful, simply a sort of stretched, bloated ache at worst. Trust me, I'm a total wimp when it comes to pain so I'm not being blase' about it in the least. The new breast is pretty much comfortably numb, tho there's surface feeling here and there. Thankfully it doesnt hurt either, tho certain arm movements can cause a bit of tenderness where they removed my two lymph nodes.

Since my midsection is quite swollen yet I went out and bought new jeans in a larger size -- plus size 14 to be exact. Pre-surgery I was typically a regular size 12-14 but even my loosest jeans still feel too snug on my middle. The fuller cut of a plus size is better on my tummy, but they tend to droop a bit and require discreet antics to yank them back up into place, lol. Small price to pay in order to FINALLY wear real pants, tho. And I actually like the coloring & leg cut too...they are from The Avenue and are their Easy Going Boyfriend Jean. It's been a while since I shopped at The Avenue but I noticed alot more clothes I liked than the last time I was there.

The plain brown camisole is from Target as is the cardigan worn before here. The polka dots sort of detract from all the bandaging and a print camouflages the ever-so-lovely position of my "girls" sans bra. I can't wait till I can wear a bra again! So many of my tops look absolutely atrocious without one. Last year I went for a professional bra fitting and I swear a proper bra can take 10 years & 10 pounds off any woman -- and I can totally tell the difference without my favorite Wacoals keeping things in their proper place.

Oh, and the necklace is from The Avenue too (couldn't resist as I was checking out).

Gee, wow, how normal is THIS??? Another post about clothes complete with pictures even. Huh, guess it's like riding a bicycle :)

Tuesday, September 1, 2009

Musings on my present style

So, let's talk clothes & stuff...remember when I used to do that?

Fashion, I have always maintained, should evolve with a person's journey -- simply put: it should fit the lifestyle and flatter the figure. Frankly that's a tall order of late.

My lifestyle today, beyond being home with the kids, consists mostly of going to hyperbaric therapy several days a week. Along with no jewelery I am not allowed to wear make-up, hair products, nail polish, or any lotions whatsoever in the chamber. It might sound vain, but this face has not gone beyond my own property line without at least some version of tinted moisturizer & mascara on it since I was about 14. Not to mention my hair needs. But I dutifully follow orders lest I catch on fire or something.

I will say, it saves a great deal of time getting ready.

Since I'm still convalescing the only other place I go is to see doctors -- ah yes, more of those. I have a standing appointment with my plastic surgeon and am scouting out oncologists, but of course. While most of my socializing is now done in paper gowns, I do try to look presentable coming and going.

As far as flattering my figure goes, that's an even greater challenge. For one thing, my body is still unfamiliar to me. My entire midsection, while partially reduced, contnues to be very swollen and I have an incision from hip to hip. In fact I'm quite puffy all over still. So I am pretty much limited to sweat pants of some sort. I managed to find some yoga pants that are cut loose & sort of flattering.

My other issue is I can't wear a bra -- not even a sports bra. While my new boob is pretty ravaged wound-wise it nearly matches the original in size & sag, which is to say I really NEED to wear a bra in public. I am also quite lopsided, tho not anatomically speaking, thankfully. It is due to the amount of bandaging and antibiotic cream I have to wear on the reconstructed breast to protect the wound as it heals. It's a sight to behold, let me tell you -- like making half a bra every dressing change, the entire breast is slathered in Silvadene and meticulously swathed in sterile gauze. This makes it look alot plumper than it really is. I also need a bit of help keeping the bandage in place beyond just the tape...something soft and form fitting yet not constricted in the least.

Camisoles to the rescue! I live in them....something I wouldn't have done before the tummy tuck portion of the surgery I have to admit. When I realized how essential they were going to be I bought a ton from...yes, where else, Target ;) Dark colors work best as I have, shall we say, seepage issues (TMI, I know). For going out I have been wearing either printed blouses or dark colored but lightweight cardigans over my new assortment of camis. The dark shades & prints hide my asymmetry & sag while additionally camouflaging pesky seepage probs (sorry TMI again).

What about shoes and a bag, you may be wondering? Well, flats are the order of the day as I'm still a bit off center due to not being able to fully stand up straight yet...almost there but not quite. Since I'm not allowed to lift anything more than 5 lbs yet a small handbag with only the essentials is my best accessory.

Okay, okay, I know....after what I've been thru who cares what I wear. And I suppose I look pretty decent, all things considered. Style is clearly not the most pressing issue in my life right now. Still, I want to look like my old self...if not naked, then at least in clothes. I want to feel normal again. I long for the day I can just put together an outfit and go without thinking about swelling or wounds. Without thinking about cancer.

Truly small potatoes, of course, but I am reminded of yet another thing, great and small, that cancer has touched. Cancer changes parts of your life that you don't foresee when you are diagnosed. You expect certain things....really BIG things, like major surgery, chemo...marring the body, loss of hair...weight changes -- oh, but did you know that more women gain weight during chemo for breast cancer? Okay, really? Seriously? I mean, how unfair is that???

But I digress as I kvetch.

While I deal with the big things the small things leave an impact too. Looking in the mirror now a month or so out from surgery I still barely recognize myself. I am slightly stooped, wearing baggy clothes fit more for an invalid than a woman in the prime of life. I can catch a glimpse of what I thought was my distant future coming at me a little quicker than I'd imagined, albeit (hopefully) mostly temporary. On the other hand, I look better without make-up on than I thought...maybe even a bit younger, so I suppose that's the proverbial silver lining.

In light of the physical changes guaranteed to be on the horizon due to chemo and forced menopause this is all a mere drop in the bucket. And I'm sure I'll adjust, heck, I'll probably be doing a post before you know it about how to style a wig or wear a headscarf while having a hot flash, lol! But with this wound issue, aside from the disturbing cosmetic ramifications, my recovery has been much delayed and waylaid. It's getting to me a little that I'm a bit behind schedule, you could say.

But then again, let's not forget -- this is Fashionably Later...and I suppose it's better late than never :D

Friday, August 28, 2009

How 'bout some good news?

I got my Oncotype score back and I am in the low risk category!

Okay, what does that mean? Well, with a low Oncotype score if I didn't have that pesky micro metastatic bit of cancer in my first sentinel lymph node then I would not have to do chemo. But of course since they did find that .7mm smidge the current wisdom is to do chemo therapy.

So, how is that good news then, you may be wondering?

Well, the Oncotype score is based on a 21 gene assessment of my actual tumor specimen to gauge the aggressiveness of my individual cancer cells. The tests indicate the likelihood of a recurrence. The score is broken down into three categories, low, intermediate and high. Any score less then 18 is low, mine was 16 -- again, if it weren't for the micro mets in my node, chemo would be out.

Now, my oncological surgeon felt that my positive node was due to something called displacement...basically when they remove the tumors from the breast during biopsy or surgery some microscopic bits of cancer can break lose and end up caught in the first sentinel lymph node. That's far different than if it migrated there by itself, if the cancer spread of its own volition.

However, usually if there's a positive lymph node then they go back and do an axillary dissection, meaning they take out all the lymph nodes. This is both to diagnose if the cancer got further up the system and potentially could have spread elsewhere and to prevent a future recurrence in the lymphatic system later. But my second sentinel lymph node was clear...and while it's technically possible for cancer cells to skip nodes along the chain, it's not as likely.

Plus I've been scanned up the wazoo throughout this whole process...from MRI, PET, CAT, and a few other initials combinations tossed in for good measure. Not one suspicious bit of anything anywhere else.

What this all says to me is that while it's unfortunate I may not know for sure how that microscopic tidbit of cancer hit my first node, it is good news that my recurrence rate would probably be low to begin chemo should successfully annihilate any unlikely but potential malignant cells that could have theoretically made it out of the breast.

Sooooooo......I am fairly sure I'm going to get to forgo an axillary dissection, which my surgeon agrees with as well, tho some oncologists might disagree -- in fact, this is a hot button issue in the cancer world right now. But I feel that this is the right course of action. Losing your lymph nodes can lead to some major life-long health issues that I don't want to deal with if I don't have to.

Chemo is still necessary just in case, but it is also very likely overkill (literally) and that makes me feel better somehow. Well, sort of.

The other bit of good news is that my wound has made wonderful progress according to everyone that looks at it -- the plastic surgeon, the visiting nurse and the hyperbaric RN's & MDs. I can't really tell too much of a difference yet myself but all assure me that I am healing rapidly and whatever I'm doing I should keep it up.

So, what am I doing? Along with the hyperbaric therapy I am consuming protein, protein, and more protein -- that's what wound healing needs most. Additionally I'm eating plenty of nutrient rich vegetables and grains and practically no sugars. And just to be extra sure I get my vitamins I've added some supplements that promote skin health/growth: A, D, zinc and iron (I was found to be iron deficient from the surgery due to blood loss). I'm also taking something called QBC-plex and a homeopathic remedy called Arnica. Those last two were highly recommended by someone on the message boards at -- and after researching it myself I thought they sounded like exactly what I needed. My wonderful nurse discussed it with me today and she wholeheartedly agreed with my choice -- always a good thing to have traditional medical professionals check out anything supplemental one takes.

Well, there you have it, my good news for the weekend -- many thanks to all who gave me extra love after my last post, your lovely kindness, that good cry and this heartening Oncotype score has lifted my spirits immensely :)

Have a great weekend!!!

Wednesday, August 26, 2009

The tough cookie crumbles

Actually, as falling apart goes this was relatively minor...but since the cookie reference was fresh (good pun!) I decided to go with it.

As mentioned in my previous post I've been doing Hyperbaric Therapy -- last week due to scheduling conflicts I only did three days, Mon/Wed/Fri. This week I was determined to go all five days, so yesterday was the first time I did two days in a row. Last week my ears had a chance to clear on the in between days and I wondered if I would be able to handle this week.

Apparently not.

My ears are extremely full, everything is muffled and the tinnitus is significant. Btw, around here we call tinnitus "brain music" to make it sound less negative -- which inspired the name of my other blog, incidentally :)

However, this is not what crumbled the cookie...maybe it took a nibble but it didn't finish me off.

This morning I was supposed to go for a MUGA scan, this is basically a radiological scan of how my heart functions. They need to make sure it is healthy before giving me certain chemo drugs, essentially because they can damage the heart. So yeah, let's make sure it's nice and healthy before we potentially wreck it.


They need to start an IV for the test to be administered. Since having my sentinel node biopsy I am no longer allowed to have any needles or blood pressure done in my right arm for fear of lymphedema. Problem is, I have difficult veins, so I've been told, and now there is limited access with one entire arm out of commission. They tried to do the IV three separate times. It's more than just inserting a needle, the nurse said something about having to thread it in further.

It hurt and I started to cry...and just couldn't stop.

Now, considering EVERYTHING that has happened to me, surgery, a somewhat difficult recovery, necrosis, wound issues, debridement,'d think a simple IV would be nothing. But after the third attempt I had to ask them to stop. I couldn't recover myself and had to leave, promising to reschedule between my sobs.

I canceled hyperbaric, I just can't do it three days in a row. I am now planning to spend the day catching up on simple things, resting and making a food shopping list for DH. Maybe if I'm ambitious I'll take a shower.

Then tomorrow I bake a new batch of cookies.

Sunday, August 23, 2009

H. O. T.

As in Hyperbaric Oxygen Therapy. I’ve had three treatments so far, 17 more to go. It’s been, shall we say, challenging. In short, let’s put it this way -- I will never become a SCUBA diver.

In HOT you are placed in an airtight glass tube and breath 100% oxygen (usually we breath about 20%) while at the same time you are under greater than normal atmospheric pressure. It can increase the oxygen levels in your body tissues which better enables new blood vessels to grow and can also help treat/prevent infections by supporting white blood cells.

The language the hyperbaric doctors and nurses use is very much like that used by divers -- they talk about taking you down to a level of thus & such feet, but of course you are not actually moving, it’s just referring to the amount of pressure.

My biggest problem has been with my ears. During your descent (again, not really moving) you are supposed to clear your ears…swallowing, yawning, pinching your nose and gently blowing, that sort of thing. Some people can do it a few times and be done with it. Not me – they have to descend me slower than usual and I have to clear my ears vigorously during my entire descent (about 20 minutes). Once I’m down to the right level I lay there watching TV and trying to hear it above the constant whooshing noise of the air. I stay like that for 90 minutes. After that they bring me up slowly again and my ears sound like Rice Krispies on steroids (normal)…but unfortunately they don’t quite fully clear. The doctor examines my ears each time, and each time they are red and have bubbles behind the eardrums. I’ve been repeatedly assured by the hyperbaric doctors and my own private ENT that my ears are in no real danger; it’s just very uncomfortable…like the congestion one might have with a wicked cold. By the time it starts to go away I am back for another session.

Another challenge is that I already have chronic tinnitus. It’s a long story I’ll tell someday but at its onset I was driven nearly insane by the constant ringing, so much so that it drove me to therapy. I managed to overcome it but this process makes it a bit of an issue again so I’m having some anxiety problems as well (as if I didn’t already!)

Not to toot my own horn, but the doctor who runs the hyperbaric program said I was one tough cookie – and since I usually don’t see myself that way I took it as a compliment.

The other challenge is that this place is quite the commute, 45min to get there and about an hour to come home since I hit rush hour traffic. When you add it all up it takes at least 3.5 hours out of my day. I now have a part time job – healing this wound has taken over a huge chunk of my life to say the least.

But bottom line, I am grateful to have the opportunity to do this. It will help to speed my healing which is crucial since I can’t start chemo until this wound is completely healed. The more things I can do to encourage healing, the better. And despite the hassle and challenges I think this therapy is really very interesting and could be promising for a lot of people with various medical problems, so I hope that by sharing this little smattering of info it helps someone else who may need it :)

Thursday, August 13, 2009

Update: time

Accomplished what I set out to do: convinced oncologist to send my specimens to Oncotype & plastic surgeon from different hospital prescribed hyperbaric therapy. The two hospitals we went to were far enough apart that it took the whole day. Spending that much time in a car in my condition is not the most comfortable thing in the world, let me tell ya.

The dual issues I am dealing with now are figuring out what kind of chemo I need and how long I can safely wait to start it. Wounds don't heal on chemo, my breast needs to heal, so the longer I can safely postpone chemo the longer we can wait and see how much more my breast skin heals before we go removing any of it that doesn't look good. Every day counts and every spec of skin does too.

Aside from the when we have the question of what, as in what type of chemo. According to this oncologist, no surprise -- I'm in the gray area. Some would treat me as node positive, some as node negative. Some would also recommend going back and removing all my lymph nodes, others would not.

So, first up -- I need to do find a breast pathologist to reassess my sentinel node biopsy to get a more accurate picture. Thing is, pathologists usually don't talk to patients directly...they do their lab bit and give reports to other doctors. Here I go again, bucking the system. See, this is why doctors don't know what to make of me, lol.

For now, I have alot of waiting to do. I wait until Thurs for my plastic surgeon to come back. I wait to find out my Oncotype score. I try to find the breast pathologist. I start hyperbaric therapy -- where I lay in a tube for 2 hours, 5 days a week waiting for the oxygen to do its thing. I wait to see how much better or worse my skin gets. Besides that, I keep researching.

This is getting to be same old, same old. I thought after the surgery things would be straightforward for a while, either chemo or no -- simple, definitive, no more vagaries, no more decisions for me to make. I thought that my days of Googling my brains out and seeing a gazillion doctors each with vastly differing opinions to wade thru would finally be over.

What the heck did I do with my time before all this cancer shit???

Tuesday, August 11, 2009

Something is wrong!

The incision looks bad, something is wrong. Skin very dark, seeping, sunken in. Am getting the kids ready to head for the hospital ASAP. Will post an entry when I return, might be late today. Pretty freaked out.

Any and all prayers, vibes or good wishes are welcomed with open arms & heart. Wish me luck!!!!!

Sunday, August 9, 2009

2 weeks post op: not all is dark...

...literally & figuratively.

1 -- As to the final pathology report on my lymph nodes, there's some potential discrepancy. Seems that there can be displacement of cells at the time of the sentinel node biopsy itself that may account for the micrometastasis of cancer detected in that first node. This is of course different than if the cancer cells migrated there themselves. It is also a strong possibility in my case, strong enough infact that the surgeon doesn't want to remove any more lymph nodes, which is the usual practice if any cancer is found in the sentinel node.

In addition there are two different methods to test nodes and one is more sensitive than the other, which it is believed accounts for picking up these misleading micrometastases. Not to mention the current prognosis/treatment protocols are based on the less sensitive method.

Guess who is calling the pathology dept ASAP and hounding the pathologist with multitudes of questions?

This link explains everything for those interested or needing info.

Bottom line: According to my researach I should have my specimens retested by a breast pathologist. Yup, doctor search, here we go again. More on all that as the situation progresses.

2 -- The other HUGE piece of news is (drum roll please):

I finally looked!!!!!
The good: The shape of my breast is amazing -- even tho it's a little perkier due to swelling you can see that once the swelling goes down it will probably darn near match Lefty perfectly. And even if it didn't droop one bit more it's pretty darn close already. Michael was right, it does look exactly like me only really, really beat up. This is SO not what one thinks a mastectomy looks like. Only the colors of my skin show the signs of my ordeal. Truly, the breast shape itself looks totally normal. The visiting nurse was aghast, she didn't believe I'd had a mastectomy.

The bad: The skin is dark and it's freaking me out. It's every shade of purple and wine you can envision. The very center of my nipple is particularly dark, almost but not quite black, and a little hardened. The plastic surgeon says there are no topical ointments, no treatment -- and she can't judge or predict if it's going to get better or this is the beginning of the end either. And then even the end isn't necessarily the end -- sometimes when skin dies new skin underneath is healthy and pretty. We just have to wait....there's nothing to be done but wait and see.

In case you haven't guessed, I'm not real good with the whole wait and do nothing bit.

So, I've been on the Google prowl for everything and anything I can do to increase blood circulation and improve skin health. No lotions or potions -- I'm following doc's orders there. But food & vitamin-wise, I'm on it. From beta carotene to licopene to protein and diet is getting stuffed w/as much nutrient dense food as I can stomach and a few carefully chosen supplements tossed in too.

I'm trying not to get discouraged while at the same time bracing myself for the worst in terms of losing some/all of my NAC. Honestly? Not sure I can handle it if the worst happens...just the thought of it is too much right now even as I write. After all this to lose it would feel so unfair I can't even go there without falling apart.

Which brings me to the third and final issue...

3 -- Putting the above aside, otherwise my emotional state actually seems to get a little less dark day by day. There are still periods of true despair, but I also can now see them punctuated with some vague sense of normal moments. Like now, as I write this...I probably feel as good as someone in my position could. Yet hours ago I was completely lost and beyond hope. "Mood swings" doesn't even begin to cover it! But at least there is some light creeping in...a thin glowing sliver through the cracks.

So, I'll end for now on that positive note, only to add a thank you to each of you reading this. I know that flicker of light is in no small part fueled by my readers, friends & family.