six words: see ya soon

minor eye injury still needs healing

 

six words: b-day weekend

our meggie's turning 12 this monday!

 



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six words: small house

small house + no quiet = writer's block

 

mama needs quiet space to write

 

 

 

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confessions of a slow-baked couch potato

I am so busy doing nothing, that the idea of doing anything — which as you know, always leads to something — cuts into the nothing and then forces me to have to drop everything.

~ Jerry Seinfeld

 

I just might be a hardcore couch potato.  There, I said it.  The truth is, I love to sit around.  Of course, I’m not exactly doing nothing.  I do a lot while I lounge about.  Talking, reading, writing, thinking – these are my favorite pastimes and conveniently all can take place from my living room sofa.

(Does anyone remember that children’s show The Big Comfy Couch?  Well, my dust bunnies might be bigger.  Seriously.  Oh, and I wish I had as much cool stuff tucked under my cushions as Loonette the clown does, but there’s just lint...and aforementioned dust bunnies.) 

Don’t get me wrong, I have to get up off the couch plenty.  I exercise, run errands, do laundry (now and then), cook for and feed various people, even clean once in a while.  Okay, all kidding aside -- I don't channel surf, nor do I gorge on junk food and I’m also an animated person in my demeanor.  People even describe me as energetic and enthusiastic...and I am, just not by inclination. Yes, if only they knew the truth, that by nature I’m more of a sloth.  Now, sloth is considered a sin by some and a trait to be ashamed of.  I guess I have been embarrassed by my slothiness at times.  Everyone else seems to be so busy that I tend to feel a little guilty.  Or at least, I used to. 

We live today in a culture of busy is better.  Ask someone how they are, and more than likely the answer will be “busy” – complete with the litany from an exceedingly long to-do list.  This is not necessarily a good thing.  An article in the NY Times last summer refers to busyness as trap, even further, as a means of hedging nothing short of existential angst.  I’ve noticed that the complaint of being over extended is almost treated as a badge of honor.  Everyone is trying to cram so much living into their lives that they aren’t actually living IN their life – instead they are continuously burying every present moment with frenetic activity, and often as a means for distraction.  

(There are people in this world for whom free time truly is a luxury.  They work harder in order to survive than most of us can possibly imagine.  People in those circumstances are obviously not busy for the sake of being busy.  To them, no doubt, this could all sound churlish or elite;  they should have such problems.  Mindful of that let me just say – busy is clearly relative.) 

As I blogged about recently, during breast cancer treatment I did a lot of reflecting on what mattered most to me.  When my mortality seemed immanent I didn’t care about projects I’d never complete, activities my kids didn’t participate in or how messy my house got (as if).  Every single ounce of guilt or expectation went right out the window.  Think about that -- no expectation, no guilt.  It was a rare opportunity, a moment of unprecedented clarity for me.  And as I went thru the mental files of my life I realized some of the best memories were the times I just sat still and talked with my children...listening to all their thoughts, great & small.  It was those precious moments with no agenda, no pressure to accomplish anything, that gave me great joy.   

I’m not suggesting everyone sit on their couch and vegetate for the sake of happiness.  Things need to get done, sometimes a lot of things...and sometimes we want to engage physically.  Being active is healthy; in fact, it’s one of my personal goals, to be more active.  But it’s another goal of mine to let go of as many inessential activities as possible...to gently cull from my life what is unnecessary, because being busy is, in my opinion, decidedly not better. 

Kids need ample unstructured time to let their imaginations grow...and so do us grown-ups.  We need time to slow down, to stare out the window and day dream, to be creative not as a means to an end but for the sake of creativity itself...we need time just to let our minds wander...we need time to be.  Socrates said an unexamined life isn’t worth living.  If you are too busy filling every moment with a flurry of activity then there’s no time to examine anything to begin with, let alone much of any substance worth examining when all is said and done.  Busy is not only not better; it can be the very thing that, instead of filling your life, leaves you completely empty.

I found out there are others interested in letting go of busy, such as those in various slow movements --slow food, slow home, heck, there’s even slow fashion!  But truthfully I feel like some of these slow advocates are still too ambitious for a slacker like me.  Perhaps my speed isn’t slow, it’s off -- as in turn off everything, sit down and settle back for a bit, get reacquainted with your family, your friends...and your own self, too.    

Like at this very moment...I am sitting (where else) on my couch typing these words.  My kids will be up soon, and the first thing they will do is come sit next to me, curling into my waiting arms all groggy and still warm from sleep.  I’ll put this laptop aside and breathe them in, take a moment to absorb the sweet scent of childhood in its precious brevity.  We’ll talk about what they dreamed last night and what they want to do today.  I’ll remind them we have chores and schoolwork, but after that the day, this day, is ours.  We’ll begin it from this place of centering, the middle of our lives and our home, this humble, slightly sagging, well-worn sofa.  The dust bunnies will be there, too, lurking...and that’s okay.  They can hang around for a little while longer...I don’t mind.  I have more important things not to do.

 

 

six words: first exhibition

Megan's beautiful sketch won Honorable Mention!

 

 

sketch close-up
 

happy girl, proud father





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angelina jolie

I thought about doing a blog post regarding Angelina Jolie's prophylactic mastectomy.  It goes without saying that we have very little in common, though...even cancer-wise.  I had cancer, she didn't, I tested BRCA negative, she didn't, my mother is still a alive, still surviving, sadly hers is not.  Even our mastectomies were different -- hers was bilateral and used implants, mine was unilateral and used my own tissue for immediate reconstruction. 

Yet it occurs to me in the most fundamental way she and I do share the important issues.  We are both mothers.  Cancer has touched us.  We both did whatever we could to keep it from taking our lives. 

There is a lot more to say on this subject, especially from the perspective of those whose lives have been touched by cancer...but perhaps no one has said it quite so well as Nancy, from the blog Nancy's Point.  I urge you to read her piece on Ms. Jolie.  It really gets to the heart of the matter.

Of course I'm hoping for a future where our daughters (and sons) never have to face these impossibly difficult decisions...a future with nothing to fear from breast cancer.  But until that day, staying informed is our best weapon. 

six words: motherhood

 

blessed twice, and twice as blessed

 

May all devoted to the art of mothering,

in any way...have a lovely mother's day tomorrow!!!!

A day to forget

I’m having a hard time. There’s no way around it. I keep trying to turn the corner but I just can’t seem to do it.

Sometimes it’s the big things, the obvious stuff that would keep anyone up at night…like, will the cancer come back, will I live a natural lifespan? That’s understandable…I can deal with all that long term, I think. But it’s actually the little things that hold me back from moving on…I’m finding the subtle stuff worse. All those countless reminders, the myriad ways that the aftermath of cancer infuses every nuance of my life. That’s what is eating away at me. And not just me.

Daniel has a number of mosquito bites on his leg and he is very upset by them. At first I thought it was the idea of a creature biting him that was the trouble, but he seems more worried about the appearance of the red bumps. I’ve had to assure him numerous times that they will go away, he won’t be marked forever.

This morning I think I finally figured out why it has been so disturbing for him. He asked me if the boo-boo on my reconstructed breast would ever go away. The scar from the skin necrosis is significant, and what’s left of my nipple & areola is markedly different than my unaffected breast. I told him that no, it would not go away, but that was okay. I explained again to him that the boo-boo didn’t hurt, it was a scar from when Mama had cancer. Did he remember that, I asked? No. He burst into tears that my boo-boo was there forever -- and that’s when I knew…he was afraid his mosquito bumps would be too. I reassured him over and over again that his bites were not the same as Mama’s scar. He seemed to feel better but was still quite sad that my boo-boo was permanent. I told him that I was okay with mine, that I even was happy to have the scar because it was from the doctors taking out cancer, and if they didn’t do that I would have gotten very sick and not been here to take care of him and watch him grow up.

It’s hard to believe he doesn’t remember the summer of my mastectomy in 2009, but then again, why would he, he was only 2 at the time. He barely remembers me being sick from chemo in 2010 either. However he does fondly recollect my hair and every once in a while he’ll say how much he misses it. It’s longer now, finally down over my ears…but still not long enough to play with the way he used to.

Daniel doesn’t remember nursing, either, and that breaks my heart to pieces, I will truly never get over having to wean him and the painful process that was. He’s heard us talk about nursing, tho, and I’d like to think on some subconscious level it’s still there in his little soul, all those tender moments, that precious experience. After seeing a baby nurse on TV last night he asked me if I could ever give him milk again from my “ta-ta” (what we used to call it). I hesitated for a minute and by the time I was ready to answer him he’d moved on to another subject. I’m glad. I don’t know if I could have held it together even after all this time.

The trifecta came just a few moments ago. I decided to clean out a drawer of a long dresser by our front door. The first thing I pulled out was a receipt. It was from an upscale maternity boutique, one that I visited only once. I needed nursing bras. Michael had found a silly little baseball cap and bought it for Daniel. It was listed on the receipt by what it said across the front…“Boob Man” -- $15.00 .

My kid had mosquito bites, I cleaned out a drawer and WHAM, here I sit trying not to drown my keyboard in fresh tears. Forgive me, I know Memorial Day is something different, but right now for me remembering is overrated. Just once I’d like to forget.

Joy To The World

I'm not sure what to blog about so I’m just going to share what I’ve been thinking lately...it's about joy, I've been thinking alot about joy.

Do you have enough joy in your life?

What do you do that brings you joy?

Right now there are days where for the life of me I can’t think of a single thing that would actually bring me joy – not anything realistic anyway. I mean, winning the lottery would be totally amazing, so would a free trip somewhere exotic. Finishing my novel would surely bring me veritable fits of joy – and maybe someday I’ll get there but for now I’m not even close, so that leaves me pretty much back to square one.

No question, being a mom often does bring me great joy (among other things, lol.) My kids can completely delight me on a regular basis just by being themselves. I'd say delight is right on par with joy. Fulfillment, too, is at least a close relation to joy.  Probably my most fulfilling moments in all of my life have been as a mother.

In the last couple of years or so my other moments of fulfillment have mainly come from writing, in one form or another (the slow progress of my novel not withstanding). I do sometimes find the actual practice of writing itself joyful-ish, to a certain degree. But truth be told it’s also equal parts maddening and agonizing depending on the hour. Apparently I’m in excellent company: I recently read that when Virginia Woolf was asked about her love of writing she retorted that she loved having written.

Still, I do get a thrill writing something profound or witty…I've even had the rare experience of writing something that took my own breath away. However, touching another person in any way with my writing is probably the most profound joy outside of motherhood that I’ve ever known. Those moments can be rather few and far between…occurring just often enough to keep me going, but not nearly often enough to keep me "joyed up" for very long.

The last time I remember actually being joyful for reasons beyond motherhood or writing was…well, I don’t remember but it was no doubt probably before cancer. And I’m also guessing it was fleeting. I think I was regularly happy…happy blogging here, about getting my novel underway, about finding more time for poetry…happy in my marriage, with my children (always) and even getting there about myself. Frequently my life achieved a satisfying rhythm that often brought me a certain amount of contentment…but it’s hard to remember now when looking back thru the lens of cancer if I felt much joy before my diagnosis.

But then again, what is joy anyway? How do you describe it? Is it like pornography, indefinable but you know it when you see it?

Would I still know it if I saw it?

For now joy remains elusive. Happiness is not a frequent visitor either. It was two years ago yesterday since finding the damned lumps and I still feel like I’m in the thick of it. Cancer duties linger…there are scans, appointments, maintenance. Michael now has his own set of appointments, scans and research…he’s the one in a holding pattern now. In between I try to reassemble my life. But I feel like components are missing. Pieces of me were taken away with the scalpel that contained more than flesh, tissue and cancerous tumors. I think they contained some of my capacity for joy.

But I'm still looking for it because you never know.  You just never do.  It could be anywhere.

hair raising

I have a love/hate relationship with my wig. Okay, maybe that statement is a bit strong. Let’s just say it reminds me of having a haircut that you’re not completely sure of…you know, it’s not the worst style you’ve ever had but you’re not all that crazy about it either.

There are a few things I like about the wig. For one thing it doesn’t seem to look like a wig, or at least that’s what everyone says whenever I reveal the truth. People seem to be genuinely shocked that it’s not my real hair. And a wig is very easy to maintain – just put it on, straighten it out and go. It’s also more comfortable than I thought it would be and always feels secure…no sense of it slipping or blowing off.

What I don’t like about the wig is the shape, or cut if you will…there’s something a bit off about it. Maybe too full on top? Too thin on the bottom? Not sure. It’s not the worst style I’ve ever worn, but if my hairdresser had done it, next time I’d tell him to leave it fuller on the bottom and not so poufy on top.

Gosh, I miss my hairdresser.

Which brings me to my own hair…at first it took a long time to even start coming back in…like a scary long time. And then when I finally began to see faint evidence of growth it was only on the sides and the back. As each week passed I became more and more alarmed. I mean, I looked like a balding man, as if I had a receding hairline. Of course it didn’t help that little Daniel kept saying I looked “just like Daddy”…(I will SO remember that, Kid!)

My concern was not just paranoia. Unfortunately there is a small risk of permanent hair loss with one of the chemo drugs I took, Taxotere. (Let it be known tho that while the other common choice, Taxol, doesn’t have the same risk regarding hair loss, it may instead have a slightly higher rate of causing neuropathy.)

Anyway…just as I was about to totally freak out, thankfully the front and middle finally began to lightly fill in.

However, my hair is a completely different color! It is very dark, sort of an ashy brown. From what I’ve heard it often grows back darker on those with lighter hued locks. After about a year or so the dark color starts to fade out and the original color usually returns, although sometimes that doesn’t happen. A number of women will also end up with very different hair texture after chemo…again, sometimes it eventually returns to its original state, sometimes not. Typically those formerly with straight hair will have curlier hair after, not as often the other way around. Since my hair was naturally somewhere in between, sort of wavy, who knows how this will all turn out? It’s hard to tell anything much when it’s barely an inch long.

For now I’m attempting to just go with it, to varying degrees of success depending on my mental state at any given moment. I’m trying to be patient and just take it as it comes – not like I really have much choice in the matter anyway. On the bright side I may use this as an opportunity to try hair colors and styles I never would have dreamed of experimenting with before. So in the end I guess you could say this is sort of a once in a lifetime opportunity…at least all things considered it had certainly better be once in a lifetime!

Out of the mouths of babes

The day before yesterday Daniel hugged me tight and said he wished I would never die. Then he looked at me intently and asked me if I was going to die soon and stop talking, because, “…when you die you stop talking forever ever.” I told him that this was true, when you die you do stop talking. I asked him where he heard about dying and the answer wasn’t clear. Though we’ve had many conversations about cancer I don’t talk about my death to him as I think it would be confusing and beyond his age, not to mention totally unnecessary at this time. I’m all for openness with children, very much so in fact. But a 3yo doesn’t need to hear that this disease is capable of killing me, not that he could even grasp what that meant anyway.

He wasn’t upset in the least when we had this little exchange and as much as it could have been a bit poignant for me it was so out of the blue that I didn't have a chance to be taken aback. I suspect that although his description of death was pretty apt I don’t think his concept of “forever ever” is quite the same as an adults.

Now Megan is a completely different story -- she has a significant understanding of this saga, but she’s 8 ½ and obviously needs to. She knows that some women die of breast cancer and some survive, and that Mama is going to try and do everything she can to have a very long life. But I also wouldn't want to mislead her into thinking that once I'm done with treatment I'm cured and this can't ever come back -- so I have told her that this might be what I die from…eventually -- or it might be something else. Either way, it certainly won't be today and not for the near foreseeable future.

Meggie saw pictures of reconstructed breasts before my mastectomy in preparation. She watched with fascination as my visiting nurse change my bandages for months as I dealt with skin necrosis. She has seen me suffer physical pain, seen me cry, seen me deal with anxiety, and no doubt been aware of me sometimes feeling like I wanted to give up on my worst days. But more importantly she has also watched me get up, get dressed, put on my wig and go for treatment anyway. We have talked about everything along the way and any discussions have been at her comfort level. I must say, regarding my cancer journey she is incredibly astute beyond her years. I firmly believe that keeping children in the dark is a mistake – they need to know, in an age appropriate manner, what is going on. The unknown, the hidden, the secrets are what make children afraid. We grown-ups fool ourselves into thinking that we’ve managed to protect or shield our kids and we rarely do. As my grandmother used to say, “Little pitchers have big ears.”

Before I had Daniel there was a time when I dealt with some deep depression and acute anxiety in front of my daughter, it was impossible to hide it from her. Even in the midst of my emotional crisis her father and I managed to talk to her and explain to the best of our ability how I was feeling and what it was all about. She also saw me get through that only a little the worse for wear in the end. And I think it taught her something important. Sometimes when faced with certain challenges people fall apart – and that’s okay. Ultimately they heal, they move on. It’s a lesson I wish I’d known at a young age. I was always afraid that I would break, that each crisis or tragedy would be “the one”…the thing that destroyed me. Sometimes, very often lately, I admit I’m still afraid of that. But I try to remind myself that falling apart doesn’t negate strength and life rarely breaks anyone. We fumble through it and keep going.

And my Meg comforts me sometimes by reminding me of that past episode…wise little creature that she is. She says, “Remember how bad you thought that was, and yet it was okay, you learned to deal with it and things got better. Cancer is just like that, Mama, you’ll see. I know it.”

As for Daniel, I told him that I wasn’t going to die for a long, long time. He said, “Good. Can you fill my juice cup, pease?” And so I did. Because there are always juice cups to be filled. There are always little things that need doing and I’m their mother so I do them…not their mother with cancer…just their mother. And that is always a huge part of what gets me through.

A year ago today...

...on April 1st, 2009 while touching my breast as I was about to nurse my son I felt a bean-sized lump. I tried not to worry, thought maybe it was something breastfeeding related, but knew I needed to get it checked right away. My primary care doc is less than a mile from my house so I decided to just show up first thing and get a script for a mammogram. As I sat at my dining room table the next morning waiting for her office to open I continued to absentmindedly feel my breast. It was then I found the other two lumps. I looked at my husband with sudden clarity and said, “I’m screwed.” It took 26 more days to get the diagnosis of invasive ductal carcinoma.

Since that day last year I have had a mastectomy and reconstruction, discovered the cancer spread ever so slightly to my lymph nodes and have gone through the wound healing process from Hell thanks to skin necrosis. I experienced an SVT after port placement, had almost a dozen chemo infusions and now have been diagnosed with lymphedema. To say this last year sucked more than any other year of my life would be the understatement of all time.

But I’m still here. My kids still have their mother.

That doesn't mean I am positive or grateful or even contemplative. That doesn't mean I haven't cried my eyes out a dozen times just this week alone. It just means that I know I have to hang on, there isn't any other alternative.

So today I will go to the infusion room at the hospital for treatment and joke around with the nurses and all my chemo comrades. We’ll hang out in our vinyl recliners while poison drips into our veins and we’ll laugh…because we always do.

Yup, today I will laugh, and for at least right now, that will have to be enough.

Farewell to Thistle Dew

So, amidst my various health issues there's been an additional saga going on regarding the house we're buying . One thing after another has delayed the purchase. But as of today we are looking at a closing date of around mid to late May (barring anymore unforeseen glitches). All this means we will have to pack up 16 years of our life here at the cottage in a matter of about six weeks. It seems an almost impossible task.

This is actually the longest I have lived anywhere. From the time I first left my parents home at 17 until I came here at the age of thirty I moved over ten times. Of course, I wasn't moving in and out of houses, just apartments or back home with the folks...and I didn't have two kids to pack up back then either so I traveled a little lighter. But clearly I'm a little rusty at the whole moving thing now after all these years of staying put. Guess you could say this stone has gotten quite mossy for lack of rolling ;)

The process of packing inevitably inspires a few trips down memory lane as you dig around the dark corners of basements, attics and closets. You can’t help but start thinking about your past, good bad or indifferent. That will be an about face for me of late since everything has been so hyper-focused either on the immediate present of illness or the uncertain future of questionable longevity. Perhaps as nerve-wracking as this moving ordeal will be it might also serve as a good thing -- a welcome change of perspective as I look backward for a little bit. It will be a chance to sort thru some of the junk, both literally and figuratively speaking.

I remember when my mother sold the home I was raised in. While I loved the gracious old house itself and I do have some fond memories growing up there, there were also quite a few recollections I would have gladly not packed up and taken with me. But even with all that, I still found myself feeling very emotional as I stood in what was my old childhood bedroom, the last one to leave the house on the closing day. I whispered goodbye aloud because it felt like the house needed to hear it as much as I needed to say it. For a long while whenever I drove by the street I couldn't look, couldn't bear to see the evidence of someone else living in my home.

My late grandmother kept the house she raised my father and his sister in till the day she died. That house was her life and her determination to stay there is actually what killed her in the end.  Although healthy well into her 80’s she was not very surefooted.  One tragic day she fell down the stairs.  Days later she died of her injuries. It was a shocking end and seemed so preventable. In fact all of us had tried to get her to give up the home, to move into some sort of assisted living arrangement or even just a single floor condo or flat. But she had packed the house from cellar to rooftop with trinkets and treasures. And then there were her cats…if you were a stray within a 50 mile radius you knew to go to Hazel’s house – at one time she had nearly a dozen cats. She just couldn’t imagine limiting the population of either felines or material objects to fit into a smaller space.

After she died, some in my family were filled with regret and remorse for not having tried to force her into leaving, myself included. But in retrospect I think her life ended as she would have wanted. The prospect of uprooting her self and her belongings might have proven worse and hastened her death more than the fall. She died in her beloved home. That is where she wanted to be after living a long and full life. That is how she wanted to die. I understand that more than ever now.

I’ve never felt quite that way about any place I’ve lived, you know, loved it so much that I would make such a significant sacrifice. But I can imagine feeling that way very easily…I’ve always been a born romantic when it comes to houses.

The house we live in now is a wonderful little place, but it never quite felt permanent…it was supposed to be a starter house though we ended up staying way longer than we originally intended. In fact we actually tried to move once before, years ago. We had a buyer at the ready but when we began hunting for a new house it quickly became apparent that even by spending more money we wouldn’t be able to find anything that we liked all that much better in our price range at the time.

After we’d returned home from what ended up being the last day out with the realtor, my husband stood in the driveway, looked at the house and said what I thought was, “Thistle dew.” It took me a few minutes to realize he’d actually said, “This’ll do,” as in this house would do instead of moving. From that day forward our little home was named Thistle Dew Cottage. It fit. All these years we’ve thought it wasn’t grand or very special, but it was fine, it was quite nice. It would do.

And now it is finally time to say farewell. Some of the very happiest times of my life have been spent in this house...both my children were born while we lived here and Michael and I started our married life together shortly before we moved in. We've surely faced our share of challenges and weathered storms here too, especially this last year. This house has contained it all, it's part of the very fabric of our memories, the background for the most important moments of our lives, good and bad. And even though we are moving up, going somewhere bigger and better it will be very hard to say goodbye. Thistle Dew Cottage turned out to be special after all, just by virtue of being our home, the place where our lives happened around us. Within these walls a family was created. I will miss this place and hold it in my heart forever.

PS:  it turns out not to have been goodbye...we are still here, apparently this'll still do :)

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 women...as 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.

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!!!!

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 tired...like 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.

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.

UPDATE: The good, the bad, & the ugly

I'll start with the ugly and work backwards so as to end on a more positive note -- as much for myself as for my readers.

THE UGLY: The final pathology report came in: there was microscopic cancer found in the first of my two lymph nodes. I believe this means my cancer is now Stage II (B). This was not the news we were hoping for. I found out only a few hours ago and am pretty devastated right now. I've more research to do but this really knocked us flat.

THE BAD: I have been in a very dark place emotionally....way before the final path report today, in fact it's been creeping up on me since I came home. I cry on and off all day, can't sleep and vacillate between deep sorrow, simmering anger and this nagging feeling of vague regret. Intellectually I know I had no choice, but it feels like I took a perfectly healthy body and mutilated it. The feeling of loss is almost overwhelming. I don't know how to write about it now...I've lost a little of the will to blog and perhaps that scares me most of all. This feels like the worst post partum I could imagine, which is also disturbing to me on many levels.

THE GOOD: I got my drains out today (3 of them), which makes me feel waaaaay more human and means I can shower. My pain is slowly decreasing little by little each day. More importantly, the margins for the rest of the breast are clean -- which is especially good because they did find more cancer there after all -- mastectomy was indeed a good choice. The nipple/areola complex gets to stay (if it survives) -- that came back clean too. My children are coping well and DH has been with me every step of the way. I don't know what I'd do without them.

So, that's the state of affairs at the moment. Will keep you posted. Any good thoughts and vibes are perpetually appreciated more than words can say.

Fare thee well...

...but not to my breast -- well, not quite just yet, anyway.

That is something I will no doubt continue to write about, here and at my other blogs, intermittently and perhaps perpetually. But today I am thinking about another body part that shall be leaving me. Today I am saying goodbye to my belly, or at least a rather large portion of it.

I will be having a tummy tuck as part of this procedure. It's not optional, not an added bonus like buy one get one free. It's a necessary part of the operation.

If there were one body part I felt suffered the most for the triple ravages of time, pregnancy and obesity, it's my tummy. In fact, ironically, I was just beginning to research the process of having a tummy tuck when I found the first breast lump. It was a procedure I needed to have done eventually, not so much for vanity's sake but for health reasons...suffice is to say that much extra skin isn't easy to deal with and we'll leave the TMI aside for the time being.

So, after a 2nd meeting with my plastic surgeon I found out that not only will all that extra skin below my navel be removed, but the upper ab area will also be flattened out as a result of suturing the remaining muscles.

Wow, I hardly know what to think!

"You do realize," I said to my husband as we left the hospital, "that this means a whole new shopping process when this is finally over?" He just shook his head and smiled.

I mean, nothing will fit me anymore. And maybe I'll be able to tuck shirts in...and I won't have to buy my jeans a size larger just to accomodate my waist -- they'll fit me better right off the rack. When I try on clothes that look good from the front I won't be continually disappointed that the profile view is, shall we say, protruding.

And perhaps the most incomprehensible factor of all...no more dreaded muffin top!

Lest you think I've forgotten why I get this little extra boon and what I have to sacrifice for it, I have not. But still, I can't believe that after all these years....almost 8 years since I lost the weight, I will have a normal looking stomach.

Amazing.

And yet...I find myself nostalgic. I earned that belly. True, that belly began to grow from my depression and discontent, from self-medicating with food a life full of pain and malnourishment. But it also expanded and welcomed my two precious babies, accommodating them safely, proudly, until they belonged not just to me but to the world.

What's left of my former girth is now a flopping, sagging badge of determination...to live, to be healthy, to lose the weight that once filled it up -- no small task, I assure you. It is deflated evidence of how far I have come.

So in closing, perhaps a moment of silence for my soon-to-be-gone belly? It was the best of times it was the worst of times. Thanks for all you've done...and perhaps most importantly, thanks for still being there, for without you I would not be able to fill the empty space left from my mastectomy. If it weren't for you, I'd have no right breast.

So gee, I guess it's not really goodbye after all...more like see ya later. In fact, you'll be closer to my heart than ever before.

Just do it

I died once. Seriously. I took what was (almost) my last breath on the evening of August 5th, 2001. For real.

After being hospitalized for a battle with pneumonia while seven months pregnant with Megan, my blood pressure suddenly spiked. I slipped from pre-eclampsia to full tilt eclampsia and before they took Megan via emergency c-section I went into convulsions.

Finally, while in recovery with my (thankfully) healthy baby safely in the regular nursery, Michael watched as I struggled to breathe. And then there was that fateful, final breath as I coded. Right in front of him.

Needless to say, I'm still here, so there's a happy ending. But it was a long time coming. My breathing remained compromised and my blood pressure stayed high even on medication for months. Two weeks after that event I developed the addition of excruciating gallstones and was at constant risk for pancreatitus. But no surgeon wanted to touch me to remove my gallbladder -- all were afraid I wouldn't live thru even a laproscopic procedure. No one thought I would be able to care for my child. I did tho, thru sheer will, determination and pure love.

The saga of how I went from that dying woman to relative health (if you don't count breast cancer) is a long one, destined for another time. What I am writing about today is what if feels like to die. It's an uncomfortable thought for many, but I want to share my experience.

My eyes were closed and I was unable to open them, tho I didn't try very hard. Still, I remember taking that last breath. I remember it very clearly. I had no awareness that the surgery was over. For all I knew I was still under the anesthesia or just waking up, it made no difference to me. After every thing I had been thru to conceive this precious child (a saga in and of itself) in my unconscious state I couldn't think of her at all.

Instead I was completely absorbed with the process of breathing. It was the most difficult task I had ever experienced. Each breath was a struggle, and it had been for weeks. But now it was harder than ever before. I was trying with all my might to remain calm, not to panic. Like someone trying to tread water I knew that if I panicked I would drown, I would not be able to maintain my breathing. And as suddenly as that realization hit me, an inner voice said, "Just let go. You can stop now. You don't have to do this anymore, it's okay."

And so I stopped. I just simply stopped struggling, stopped breathing. A feeling of peace came over me, a sense of calm and relief the likes of which I have never known. I was almost thrilled that it was that easy. So much fighting and struggling and all I had to do was let go.

I don't remember having a choice about living or dying, just the feeling of falling and the sound of someone screaming at me, "come back, come back, come back!" After that, my next memory is waking up later in the ICU and trying to find out about my baby. It was a long, painful night until the next day when I could finally hold my precious little girl. That memory too is powerful, in fact, more powerful than life or death. It was only the horror that I could have left her behind that made me glad to be back in my suffering body again, more than glad, I was elated...and grateful.

I carried away many insights from that trauma, some still reveal themselves to me now, nearly 8 years later. I consider my daughter's birthday my re-birthday because it was the beginning of a journey to health and a new life. You don't realize how precious something is, sometimes, until you almost lose it.

In a literal sense I found out death itself is nothing to fear. True, the time leading up to it may be more horrendous than anyone can imagine if you suffer from prolonged illlness, but the end part is simple, peaceful and soothing. I find that to be a great comfort. Especially now as I face an illness that could be what I eventually die from, tho I am as determined to avoid that fate now as I was to live once I came back from the dead on that August day.

I also can't help but think in metaphorical terms and find a life lesson in the symbolism. I had struggled alot in my life, I had railed against inevitabilities and prior traumas, held on tightly to my many wounds. It had left me battle scarred and more weary than I can describe. I needed to just let go, but somehow I couldn't. Over the first years of Megan's life as I dealt with recovery and motherhood I realized letting go is easier than we think. It really comes down to an infamous cliche of three little words: Just do it. Nothing is so important that it can't be let go if need be.

Oh, except life itself. That's worth the struggle at all costs to the bitter end. But when that end naturally comes, letting go of even that can be simple, gentle and freeing.

I will not go gentle into that good night, but when the night is over, many, many healthy years from now, there is peace waiting for me...for us all.

Trust me, I've been there, done that.