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 factors...in 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 memories...now 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 about...my 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 become...how 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 eternal...it'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 abandon...to 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 kids...one 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 slowly...you 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!