Our Own Ghosts

I thought this was especially timely being that Halloween is coming upon us in a few days…. and we laugh and have parties, pretending to be ghosts, vampires, and whatever scary image comes to mind.  But what about a pink Cancer ribbon as a scary symbol?  It’s hard to take it seriously being pink…but it IS scary.

That said, I was writing to a friend of mine about something she was going through and words flowed – sometimes you truly don’t know your own mind until you voice it.  We were chatting about her aging mother and her mom’s unhappiness.  What about anytime we experience unhappiness…

“Happy” is a state of mind, isn’t it… and when we feel we are losing control of things (and goodness knows we love to feel like we’re in control), we become unhappy… but in reality, we rarely are ever IN control, we just think we are, and to that extent, ignorance is bliss, isn’t it.  We delude ourselves – so does that make us delusional too?

Let me go back to happiness.  The Dalai Lama stated that “the very motion of our life is towards happiness… and the first step in seeking happiness is learning.”  The learning and culling of our positive and negative emotions that help or hurt us.  Some say it is the difference between having what you want and wanting what you have…. contentment and peace.

The Dalai Lama explained “..hatred, jealousy, anger, and so on are harmful.  We consider them negative states of mind because they destroy our mental happiness; once you yourself are filled by hatred or negative emotions, then other people appear to you as also hostile.  So as a result there is more fear, greater inhibition and hesitation, and a sense of insecurity….”

Translating that to breast cancer, I know there were times in the hospital I was abandoned by the staff in my highly fragile and dependent position.  It brought me despair which I translated to anger and then action to resolve… happiness never entered into the picture because I did not allow it.  I could have…but it was forgotten.

I’m not suggesting being happy about situations where our primary needs are not being met and allowing it to continue.  But taking action and coming from a different place.

Fear of the unknown is a biggie for most of us.  Some of us get lost in it and succumb to immoblization.  Some of us just get angry and unleash hostility around us.  Some of us adapt a pollyana attitude and ignore it (but it still lurks inside).

As I begin the path anew for the next procedures (whatever that may be post-consultations), I will work hard to focus on accepting the unknown unconditionally, while not abdicating my responsibility.

“When you are aware of your pain and suffering, it helps you to develop your capacity for empathy, the capacity that allows you to relate to other people’s feelings and suffering.  This enhances your capacity for compassion towards others.  So as an aid in helping us connect with others, it can be seen as having value”…. our suffering may not be as worthless and bad as we think”. – Dalai Lama

I do always try to seek something positive out of a negative experience – that was one of the reasons for starting this blog…so that someone else may benefit from my experience and research and perhaps make their journey a little less painful…. and it offers peace to my heart and mind to understand that living the human experience allows us the opportunity to be compassionate – towards others and at the same time, towards ourselves.

Perhaps I will do better now that I am aware… I hope so.  I would like to give up the ghost.

 

Advertisements

3 Ring Circus

Coordinating doctor’s schedules to synch up when you live 4.5-5 hours away…that is what this felt like – a 3 ring circus.

But finally, we were able to speak with the right (and very helpful) folks to assist us, and we now see the reconstruction surgeon on Tuesday morning, the Genetic Cancer Counselor (for statistics) Tuesday afternoon, and the Radiation Oncology physician Wednesday morning, concluding with the Oncology surgeon Wednesday mid-day.  Holy cow.

The one thing you learn is that you can’t let anyone else be your ringmaster – you own it.  You are your own best advocate.

All this to get sufficient information and discuss statistics, probabilities, options, risks vs. benefits, and timeframe.

I have my thoughts on the matter from my internet research – now we get to speak with people who live and breathe this.  It is the ‘gray area’ without SOP.  Somehow just knowing you are always at risk for re-developing breast cancer (without a breast!) is a little unnerving… but then again, every woman who walks this earth is automatically at a 12% risk which will increase based on environmental conditions, ingested elements, predisposition, health (prior cancer), weight, breast feeding..and probably other factors. 1 out of 8.  My risk will be higher.

So what do you do about it?  There is no such thing as zero risk… you choose the path, accept the odds, and do what you can to minimize the risk….all while enjoying your life with abandon – for now.

I’ll have more info to share soon.  My gratitude goes out to you all who check in, say prayers, communicate your love & support, and know that as soon as we can, we will find that light at the end of this dark tunnel and come out on the other side.

As Clear as Mud

Yup, this sign about sums it up…especially adding the ‘good luck’ below the directions!

I’ve done research on use of Tamoxifen, Radiation, Aramatase Inhibitors for patients in my situation – positive or thin margin clearance from excision.

Conflicting sums it nicely.  Lots of studies with various recommendations.

Right now I’m coping.  I’m also trying to break through scar tissue on two breasts and regain range of motion (ow).  I expect that to take a few weeks.

Life goes on until the next interlude…sometimes we are given longer interludes than other times.

Feel like reading?  Check out the studies below.

I’ve also posted some additional information under Nutrition (more conflicting data) for survivors.

On the chopping block

Dear friends, I am SO sorry to give you the news we got today from the oncology surgeon’s pathology report at the post-op visit.

He said my breast was ‘loaded with dcis’ and the pathology report indicated a positive margin after a mastectomy…that means that I am still at risk for cancer if no further action is taken.

We travel back next week to meet with the Radiation Specialist to discuss possible radiation, and the Genetic Cancer Counseling group to discuss the drug Tamoxifen which works on positive estrogen receptors (which my cells have..not everyone does).

Neither are very attractive to me, and the thought that this is way not over is tremendously upsetting being one week out from the week from hell.  So here I am on the chopping block waiting for the axe to fall.

I don’t think radiation is an option without first removing the reconstruction (another surgery), and then re-constructing it (yet a fourth surgery) thereafter (with drains and surgery aftermath both times!!)…. needless to say my mind is screaming ‘NO!’  But before we all think the worst case scenario, take a breath, let it out, and just wait again to find out towards the end of next week.

In the meantime, I intend to get stronger for what lies ahead.

 

 

Freedom

Ahhhh..

Today the drain tubes and bulbs were able to be removed – all remaining 3 of them…what freedom!  The sun shines brighter, the birds sing sweeter, and I’m not an accident waiting to happen anymore!

Just in case you can’t envision why I am ecstatic, let me describe this miracle of surgery.  We produce internal body fluids and blood, especially when a surgery has taken place.  If left without drains, it would fill the cavity it is in, causing great pain and swelling.  It would need to be released through either surgery or aspiration.

To prevent this, they insert soft tubes (looks like a drinking straw) that travels from point of incision, culminating in the suction bulb you see pictures, with a clip to clip on clothing to release its weight and tension.  The tube runs about4-5′ long.

Because this is a result of surgery and indication of health, you monitor the ‘output’ twice a day (12 hours apart) and lovingly  measure the concoction, recording each volume in cc on a chart.  If you are fortunate enough to have under 25cc within a 12 hour time span, the tube and bulb may be removed.

Oh, and another fun fact… every time you drain the bulb, you have to first ‘milk’ the drain tube to clean out any clots, etc… lovely.

Being an Engineer, my husband had way too much fun with this , also coding the color (ie. cider, tea, cranberry juice…yum)

Whenever you walk into a room with knobs like a kitchen or bathroom, the tubes which are looped reach out and grab them to threaten to tear them out of the stitched incision in your body… changing clothing or any function such as sitting, sleeping (only on your back so you don’t squash them),  requires you to gather these up to release the weight.

When walking, they bump against the legs, and of course the loopy tubes threaten to catch on anything nearby, so wearing an apron or silky short robe is necessary.

Well, I guess you can see why I’m so happy to be rid of these after a full week.  One step closer to ‘normal’ whatever that is…. tomorrow, a meeting with the oncology surgeon.  Saturday I can start rehab exercises to regain Range of Motion –  light at the end of a very dark tunnel.

I’m honored…

Really, I am honored to have two beautiful children of our friends participate in the run for a cure in my honor, and, if that were not enough, for big and tough guy Jonas to dye his hair pink!  How cool is that?

THANK YOU BOTH for doing this!  YOU ROCK GUYS!!!

Next October, I am planning a few Paddle for Breast Cancer events, both in the Greenville area and in Charleston.  I think it will be fun and so supportive for all our friends, family, and new friends. I hope you all will consider being a part of this cause. And if you don’t live near either of those towns, perhaps consider holding one (kayak or bike!) and donate the contributions.

love,

Rocking…

It is autumn here in western N.C…. absolutely gorgeous.  A primo time to be on a mountain bike or kayaking, and where am I?  In a rocking chair with tubes and drains sticking out of me.  “We don’t always get what we want”.

My life since we’ve been released post-surgery is comprised of getting over the effects of all the narcotics and drugs administered that plays havoc with your mind and body.  Twice a day, my drainage tubes are ‘milked’, emptied and measured.  I have to sleep propped up on my back – so sleep is an hour on and off. My skin feels tight in my chest, the drainage lines pull and poke to a low level of pain constantly, and my digestive system is running amok from antibiotics.  And I tell myself, this too will pass.  As my wonderful husband reminds me, I’m healing and had cancer.

I am SO looking forward to Wednesday when the drains can be removed (they snip the stitches and then pull the tube out…creepy but not painful).

I am SO looking forward to moving around without the loops of tubes and exhaustion. But I cannot even do any activity other than walking until another post-op on the 25th when I’ll be given exercises – until then, I am not to raise my arms above my head..everything is done with elbows down, so I suspect the shoulder will take a lot of P/T at some point… but I’ve been there before and I don’t back down from working past the pain of breaking up scar tissue – after all, it is the rest of your life, isn’t it….and that is pretty darn good and worth working for.

 

Aftermath

That’s me with all 5 drain containers all streaming down from my breasts.  Two removed today (1 from each side).

Today the reconstruction surgeon was pleased with progress – the top of one drain is poking me in the upper breast by the underarm and periodically causing a little pain, but after the 220cc of blood in my breast and almost fainting with pain the other night, this is totally manageable.

Tomorrow we head home and return on Wednesday to see the Oncology Surgeon.  Healing is beginning and the bi-lateral mastectomy journey has passed a milestone.

As we left the hotel to go to the surgeon’s office, the sun shined and filtered into my being, and I breathed in the warmth of the day.  After leaving the doctor’s office, a few tears of relief that this part of the journey is behind me and I will only get stronger – and kayaking and mountain biking  soon.

Surgery Update

Thank you all again for the prayers, love, support, healing energy, calls & emails you sent to me.  I cannot express my gratitude.

The surgery initially went very well, and I was served dinner.  Sometime after I finished, I felt much more soreness in my left breast.  We checked and sure enough it was larger than the other.  After the surgeon and plastic surgeon were called in, I was moved by ambulance over to Duke hospital from the Ambulatory Center.  Only when we got there and prepared for another surgery under general anesthesia due to massive internal bleeding in the breast.  There was actually a lot more to it (and pain so intense I almost fainted), but suffice to say I am on my way to healing with all your thoughts & prayers surrounding me.

So please do keep those healing thoughts and wishes coming.

Tonight, we returned to the hotel room (the hospital is no place for healing).  On Thursday we see the plastic surgeon again for a check up, and then maybe home for almost a week before returning to see the surgery oncologist.

So what I’m getting from this experience is this – with every decision, there are repercussions – we can never know what will be.  But we can put our energy forth to move past.

My love to you all,

 


Countdown

Counting down the hours, minutes, seconds…Monday, arrival time: 0600.  Surgery time: 0715.

I’m still not liking the fact that this has happened and what must be done, but I’ve come to terms with it and now looking forward to Tuesday – the day after when healing begins.

When the constant attention to 2-4 drains which need to be ‘milked’ and measured for 7-14 days begins, and when at the end of that time, when true healing begins and I start taking my life back.

When I started this blog, it began with ‘a life hijacked’.  And so it has been.  You never really understand how derailed a life can become so easily.  How fragile we all are, and how we live each moment on a precipice of illusion.

In 2001, I had a brain tumor and got that message loud and clear.  As soon as we were able, we left the corporate world to begin a life where we were more in control of our hours, minutes & seconds and made the most of them.

We became complacent in thinking there’s always tomorrow.  News Flash.  There’s not. Tomorrow is not guaranteed. Life is not graded on a curve, and sometimes, it isn’t fair.

Understanding this brings us to a place of making the most of our time and opportunities.  Being ‘there’ for others as well as ourselves.

Anna Quindlen once said ‘Don’t ever confuse the two, your life and your work.  The second is only part of the first.’  In the words of Senator Paul Tsongas when he decided not to run for re-election because he had been diagnosed with cancer: “‘No man ever said on his deathbed, I wish I had spent more time at the office.”  John Lennon wrote (before he was gunned down in the driveway of the Dakota) ” Life is what happens while you are busy making other plans”.

We don’t talk much about the soul anymore.  Well, there is a small group here and there that do, but for the most part, people are ablaze in conflict.  We need to get back to being mindful, to practicing kindness.  My generation was so strong in the 60s with these thoughts – what has happened to us as we age?  We have surely forgotten who we are.

Most people define ‘wrong’ as that which is different from them…. think about that.

When was the last time you felt your soul sing with boundless joy?  If it was not today, then we need to ask ourselves why we are denying ourselves the greatest of riches….because life is short.

These words seem trite, but always true….love, laugh, live.

I send love and hugs to you all.  And as always, thank you for all the love, prayers and support you have given me.  I take all that with me into surgery very soon.

Previous Older Entries

Enter your email address to follow this blog and receive notifications of new posts by email.