…and more waiting

I had hoped to find out the new date of surgery… now it appears I have to wait until next week to find out when the Plastic Surgeon and the Oncology Surgeon can find when their schedules can coincide to perform the bi-lateral mastectomy… and so, a weekend of more waiting to find out when.

In a very small way, I’m impatient to have this done with… and yet, the weather is gorgeous and I’ve been granted some ‘playtime’ which I will wait for 2 months post-surgery.  Today, we went mountain biking near our home, tomorrow, sea kayaking in South Carolina.

Today, a dear friend of mine called to describe her Breast Cancer chemo reaction (which landed her back in the hospital) and the arduous journey she travels.  There is no ‘easy’ path on these journeys.

Did you know that October is Breast Cancer Awareness month?  Some of us are far more aware as we live it every hour, minute, and second of our lives.

So I’m sure you’ve been wondering what a bag of ‘pig ears’ has to do with all this?  Absolutely nothing at all!  I just couldn’t believe it is a delicacy for dogs!  aaargh!

More to come.

 

 

Surgery Postponed…

I’m sitting once again in the clinic at Duke, waiting for the Medical Oncologist.  My discussion with him will determine the extent of mastectomy and possibility or not of reconstruction (it is always possible, but I do not wish to impede my health any further, and having an implant in my ‘good’ breast has it’s risks too).

On the surface, everyone (almost) has the same reaction…of course reconstruction…but once you understand the procedures, risks, and lifetime investment, it doesn’t seem as appealing and necessary anymore.  The recovery period is longer.  There is substantial pain and more drain tubes, and silicon (and saline) implants do not last forever…if you are lucky, they last about 10 years, then you either have to have them replaced or removed.  To make sure they have not leaked, you go for MRIs every 2 years (the 1st is 3 years post surgery).

Sure I would prefer to have breasts, but my life will not be incomplete without them either…on the contrary, I will have more freedom because less time at doctor’s offices, surgeries, and potential problems, to say nothing of trying to be active and worrying about ruptures.

Lots of factors (I’ll post to let you know what they are soon) to consider.

Surgery was canceled because this changed in structure – a new date has not yet been assigned.

Once this happens, I’ll be on the other side of this wild ride through a forest of barbed trees, admiring the blue sky, listening to the birds, and returning to the love around me.  We usually move so fast, we sometimes  forget the important things and people.

Yes, this is a huge bummer.  Yes, I wish it weren’t happening, but yes, life goes on, and so will I.  The trick is to make decisions with eyes open.

As soon as I am able, I will begin posting some of the research I’ve done – hopefully, it will help others make their choices too.

M-Day approaches

 2 days to go…. there is almost not a thought in a moment of time that does not involve the mastectomy…. even my dreams are about the impending surgery and my decisions, yet to be made.

I want this over with… is it ever really over?  Or is that just an illusion so we can get back to life?  I think it is…but that is probably true of most things, or we’d never do anything but sit in a dark corner.

Times I cry?  When my wonderful neighbors call and tell me that they will take care of dinners when we get home from the hospital… There is no way I can ever express how much this means to me and how grateful I am for their friendship and caring (and not having to eat my husband’s cooking!…actually, he boils a mean pot of water!)

I thought I’d pamper myself pre-surgery and have my hair done…problem was, I mis-read the time and arrived 2 hours too early with 1000 other things to do today…. bummer…. spent the rest of the day (and no hair treatment) searching for a durable goods shop nearby to get my compression sleeve.

Oh, compression sleeves? For Lymphedema, and the prevention thereof… Now that I have 3 nodes removed, my left arm is ‘at risk’… they suggest nothing tight and binding on that arm, no handbag straps, no blood pressure cuff and injections, lots of ‘no’…. air travel is a concern that the sleeve will hopefully mitigate…. I know I’m supposed to feel ‘lucky’ because I don’t need chemo and radiation, but somehow, being at risk for Lympedema and having a mastectomy does not feel lucky.

My definition of lucky?  Winning the lottery and flying with all my friends to a tropical paradise…see the problem there?  BIG difference.

So last week I had my 10 year MRI for a brain tumor (meningioma) I had surgery and Gamma Knife Radiation for 10 years ago…. CLEAN!  so, here’s a revised definition of lucky… not having a brain tumor and breast cancer at the same time!

Thank you to all my friends and family for ‘being there’ for me.  I am truly grateful.

Endless research

Today is the First Day of Autumn, and I’m still in  beautiful New England.  Another day, another endless day of research for an upcoming appointment with the Medical Oncologist….

So while I’m doing research and reading studies and the news, I stumble upon a news clip that announces that comedian Wanda Sykes had a bi-lateral mastectomy for cancer.  That got me a bit curious,..so a little more digging and I pulled together this short list of some others.

The thing that came blaring out to my awareness, was that breast cancer does not discriminate…..of all the things that knows no boundaries, religions, ethnicity, age, even sex, it would have to be breast cancer.  Gay/straight, Rich/poor, Celebrity or not, it does not discriminate.

Curious which celebrities have battled Breast Cancer (some remain very active advocates of a cure)?  Here’s a partial list:

  • Wanda sykes
  • Edie falco (Sopranos)
  • Melissa Etheridge
  • Gloria Steinem
  • Kate Jackson  (Charlie’s angel)
  • Jaclyn Smith (Charlie’s angel)
  • Rue McClanahan (Golden girl)
  • Sheryl Crow
  • Betsey Johnson (Fashion designer)
  • Diahann Carroll
  • Elizabeth Edwards, (deceased wife of  VP candidate John Edwards – I won’t even begin to comment on him)
  • Nancy Reagan
  • Marianne Faithfull
  • Betty Ford
  • Suzanne Somers
  • Christina Applegate
  • Robin Roberts
  • Cynthia Nixon (Sex & the city girl)
  • Lynn Redgrave
  • Carly Simon
  • Sandra Day O’Connor (Supreme court justice)
  • Peggy Fleming

I almost posted this under ‘wisdom’…  for the sheer  irony of it.  Disease is the one thing that does not discriminate… people  do.  So it makes one wonder if something ‘good’ can be gleaned from this horrendous disease;  if we can offer love & kindness to all life indiscriminately vs. the ‘I got mine’ mentality that is becoming so ugly and pervasive… if we can only take some good from the bad, perhaps then, the bad will have brought forward some good into the world, and the suffering will not be in vain.

My mind cannot believe that there should not be a purpose… “to everything, there is a season”.  And I steadfastly believe that this is not ‘punishment’ – it is a part of life – just like any living organism whose genetic makeup allows for the invasion of a mutation of cells based on its environmental factors.

As advanced as technology and technique have evolved from the days of blood letting, it is still barbaric and damaging, both physically and emotionally to most survivors.  A cure is still needed.  Easier, less invasive treatments are needed.

October is Breast Cancer Awareness month….  1 out of 8 women will develop breast cancer in their lifetime.

Life is a Fishbone

Isn’t that so true?

My wonderful identical twin sister went for the BRCA testing for us (I assume we are truly identical in genetic makeup..just external factors and life experiences re-shape predispositions).  I am thrilled to tell you that it came back negative.   What a wonderful word…negative.  It used to hold a, well, ‘negative’ meaning…these days, it is the best word you can hear on this journey.

That said, I am still acutely aware that I went from no cancer this time last year to where I am now.  My mother had breast cancer.  I have dense breasts, and there are other factors that increase the odds… like once you have had DCIS (breast cancer), the odds increase that you will have it again – not because it migrated, but as a primary.

I am scheduled to have a discussion with the Medical Oncologist at Duke regarding this genetic ‘stuff’ and my odds.  A mastectomy will only help the breast that already has cancer…and give me a 98-99% chance that is will not reoccur in that breast.  It does nothing for the other ‘innocent’ breast (at least it looks innocent…but I thought that of the one that betrayed me too).

Which brings me to a slight digression – I saw a wonderful saying on a t-shirt: “Hell yes these are fake, my real ones tried to kill me!”  If you want a few giggles, link to the Mind/Body > Enter Laughing > Bloopers…..

So, what does this mean? Well, based on our discussions, I have a new fishbone diagram of action.  And dear friends, you’ll have to indulge me… like a cliff hanger from a TV series, you’ll have to ‘tune in’ in early October to see where all this leads me, because quite honestly, I don’t even know myself.

I do know a few things:

  1. I am so tired of every waking minute centered around breast cancer
  2. I am so thankful for all my dear friends and family – what would I do without you?  I love you all.
  3. Life is short – years go by too fast.  Be happy, be peaceful, be loving – to yourself, to others.

Are you Dense?

When most people ask this question of you, it is almost always an insult…. when you’re in the breast world of radiology, it has to do with the breast tissue and % of fat and connective tissue.   I used to think that having dense breasts meant my muscle tone was good!  Nooooo, has nothing to do with muscle..has to do with fat!

My breasts have always been dense in complexion.  This makes it harder for radiologists to obtain clear readings of the presence of cancer.

This is not trivial.  To compound this, a study has revealed that women with dense breasts have a higher likelihood of DCIS – (ductal carcinoma in situ – surprise, that’s what I have!).  It gets better… The researchers found, as expected, that the risk of breast cancer increased progressively with increasing breast density.   The dense area consists primarily of breast ducts and connective tissue, while the non-dense tissue is mostly fat.

Results of a previous study showed that patients with DCIS who had higher mammographic density had about two to three times increased risk for a second breast cancer.

As you know, I had been struggling with the decision of breast reconstruction. This made the decision for me.

All implants, silicone and saline, impede the ability to detect cancer on mammograms.  However, the studies indicate that two important points:

  1. Cancers are more frequently missed in women with implants
    1. 68% sensitivity for mammography for women without implants versus 45% for women with implants
    2. But, the overall stage and prognosis of those cancers, once found, is the same for women with or without implants.

Combine this with the proclivity for breast cancer…. I choose health and life over cosmetics, and I will not go for reconstruction.  Some of this may be difficult mentally, and perhaps times of tears, but life calls and there’s so much more to enjoy.

Thank you to everyone who spoke with me (always at length) to discuss this topic of reconstruction and support me through the journey.  I can’t tell you how much it means to me.

 

To go Bust or not to go Bust

 You’d think this would be an easy decision with the social stigma of Barbie doll like bodies out there and everyone busting out at the seams.

I’ve been small breasted all my life, and admittedly, there were times I thought of breast augmentation.  Now that I’m educated in what that actually entails, I cannot believe millions of women voluntarily go through this – some, even 4 times, increasing breast size for boyfriends or their whatever their reasons (the gal I once knew did it 4 times for a boyfriend – she looked like a very short version of Jessica Rabbit by the time she was done).

The problem is, there is substantial risk involved to one’s health.  And these things actually fail/leak within 10 years, requiring additional surgeries…but that’s the least of it.

FDA has recently approved 2 silicone brands (the saline are even less desirable), but it is still under scrutiny and is now being tied to another form of cancer..Anaplastic Large Cell Lymphoma (see the FDA article), and this ALCL study.  The  chance of this happening though is reportedly 3 in 100 million..so not a huge risk… the larger risk is infection, breakage, leakage, etc.  Also, these things don’t last forever.. there is a 40-70% chance it will need to be replaced in 7-10 years!

So, is it really worth it?

Logic tells me no, but wanting to look ‘normal’ is there too… on the other hand, why further risk your health – going through this once is quite enough thank you…. on the other hand, the risk percentage is very low (for at least ALCL)…but there are other known risks that can complicate one’s health.

It would be nice to have it ‘all’ to have an easy implant without any risks of complications….actually, it would be nicer if this evil didn’t happen all together…but it is reality.

So the pragmatic part of me is not liking the options one bit.

Oh, and as I write this, I just received word from my MRI that I remain clean from a Brain Tumor I had surgery and radiation for in 2001.  Thank goodness!!! whew!  Time for celebration!

What are your thoughts?

BTW, if you wish to support the fight for Breast Cancer with just being online, please visit the breastcancer.org website, supported by Stonyfield Organic Yogurt.

Work in Progress

Waiting for the mastectomy at the end of the month, and trying to heal from the Sentinel Node Biopsy.  It seems this is more problematic than the breast biopsy… working on trying to regain range of motion (tearing scar tissue – often quite painful), and dealing with that huge lump under my arm where fluid has collected from the removal of 3 lymph nodes.

The surgeon thought it would reduce on its own without aspiration…. I’m not so sure…but I’ll continue to do what I can until I’m back in the OR.

People ask how I am… what can you say?  You’re about to lose a breast.  I reply I’ll be better soon.  Its strange.. they don’t know how to ask and I don’t know how to answer.  No one really wants to explore the depth of feeling one goes through in these cases.  But the intent of concern is there, and it is appreciated.

In the meantime, I kayak a little (no rolling for me yet), mountain bike a little (lower key), and go on hikes.  I exercise to bring up my stamina for the upcoming surgery/recovery.  And, most importantly, I try to enjoy each day, a gift.  I met my two sisters (by marriage) and laughed so much with them over drinks.  My husband and I tried various kayaks with two of the nicest people we just met, and now, I’ll see friends who I haven’t seen in years.  This is all good stuff.

I am work in progress.  Usually I’ll say that from a personal/spiritual standpoint…but now it has more meaning.

 

The “C” Word

I was thinking about this…about everything that has happened and what is scheduled to happen.  And I realized – I originally sub-titled this the “C-word” for cancer.

But as we progress through the stages, it could also be

  • C for Challenge
  • C for Celebration of good news along the way
  • C for Cure
  • C for Consciousness
  • C for dark Chocolate yum… antioxidants too!
  • C for Clinging to Hope
  • C for Clear of disease
  • C for Caring
  • C for Creative – how we adapt
  • C for ….  what’s yours?  feel free to add in the comments!

 

 

In Denial or Being Strong

This morning I woke up and thought about how all this time as I refused to entertain the idea that this insidious uninvited guest (cancer) has spread through my body, I was being strong.  … and then I realized, I was in denial, because I didn’t know how I would and could react with any other news which would necessitate chemo and radiation therapy prior to mastectomy.

As I pondered this, I understood that I would accept it as 1 out of 8 women do, and cry, and move on.

For me, it wasn’t to be my path.

My husband and I sat in the Dr’s office this morning and received the wonderful news ‘ that the sentinel node biopsies (all 3) were negative.

It is bizarre to be grateful to only have to have a mastectomy.

But, regardless of what we endure, whether mastectomy, radiation, chemo, and drugs, increased risk of lymphedema, deep vein thrombosis, strokes, and heart problems as a result,  we remain who we are… and perhaps, maybe a little improved in other ways too.

I’ve met a wonderful woman who is a strong, brave woman, and whose path veers slightly from mine.  She is not having a mastectomy, but is going through chemo and radiation.  As I mentioned, she is strong, and smart, and vibrant.  She will always be this, for it is who she is… even breast cancer cannot change it.  Tears cannot change it.  And I know, like me, she will walk through this valley of hell and come out on the other side.

Our friends and family rally around us, endless prayers, thoughts, angels and wishes surround us.  Our mind understands what is happening, our body experiences it,  and if we can choose, we find strength in the love around us, and the fact that we are not alone through this.

So I sit here, knowing my life has changed and will change, forever.

 

 

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