Over The Hill

From time to time I will create artwork/poetry for others on their birthdays or for Christmas. This one I wrote on my 45th birthday. For me.

 

It’s a girl!

Crawl…

Walk…

Blissfield Royals and back-flips; pom-poms and proms.

Step…

Nursing school and we don’t know what’s wrong with you. Medical tests with no answers. Just scared.

Step…

Disease discovered and meds that change everything. Too far behind and I have to catch up. Study and work til at last, I can walk in my cap with my class. 

Step…

Hi, I’m John, nice to meet you.

And I do.

Step…

We see two heartbeats! Pure joy. A girl and a boy.

Step…

Tar Heels and twin moms and I understand. A house full of crazy and messy, but fun.

Step…

It’s a boy!  Now we’re complete.

Step…

I’m just so tired and can’t seem to get up. I’m pleading for help and alone here again. This disease, no one understands how it feels to succumb.

Step…

More medications and moon face. Control is long gone. Not sure how long I can hold on. There are long hospital days and painful days. And dark days that stay.

Step…

The minute I’m back, we need to admit him.  Worry and heartache and I am so sorry.

I say goodbye to my daddy.

Step…

I fight to keep going and days slowly get brighter. Running with friends and kids growing up. Beach days and soccer games and grateful for John.

Step…

Docs say that to have a long life without cancer, I must lighten my load. No choice, really, my breasts have to go. Inner strength and courage took my hand that day.  And led the way.

Step…

Asking for help and caring for me. I finally see how necessary. Searching for answers and That’s our time for today. I wish it were easy. I hope this self-compassion will stay.

Step…

As I pause at the top of the hill, the view below is astounding. I know the trail down won’t be easy, so I’ll keep watch on my footing.

But to see how far I have come?

I’ve won.

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Strangers

Hey,  it’s me.

I’m not sure if you are ready to talk

but I am

sure

I am ready

for you to listen.

 

We have drifted

much too far apart

to even recognize each other any more.

We are not meant to be strangers.

 

Remember how easy it used to be?

We were happy

easy, strong and carefree.

No one was closer

or more connected.

What are we now?

Who are we?

We are not meant to be strangers.

 

You’re angry?

And you think I’m not?

You think this is how I imagined our life together?

It is complicated

and hurtful

and challenging.

I honestly didn’t think

it would be

this tough.

 

But, despite all this

I’ve always understood you

trusted you

and loved you.

I hope you realize by now

that I’m not ever going to give up on us.

I’ll never let you give up on us either.

I’ll die before I do.

 

So, if you need me to spell this out more clearly

I can do that for you.

I am Susie.  Your self.

And you, my one and only body

belong to me.

And we are not meant to be strangers.

 

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Here

light

 

 

 

 

 

 

I guess we have a lot to catch up on. 5 months since you’ve heard from me? Sad. What has happened in the past 5 months also makes me sad, but no time for dwelling, I’ve got a recap to write. Hang with me, it’s gonna be a long one.

May 2014: Shit, meet fan.

It started with a hint of things changing, but I will spare you the gory details from the water closet. I have learned in the past 23 years with chronic illness, one is never sure if random bodily changes mean something minor (like a GI bug or a newly discovered intolerance to gluten) or major (anything life-threatening or related to TA). Of course we must investigate, hoping for the lesser of any evils, and in most situations that is the case. I have become accustomed to worrying that any new symptom could be a flare or cancer (taking drugs for 20+ years that predispose you can do that to a girl), finding out it is nothing and moving on. These chronic diseases turn those of us who have them into hypochondriacs in the worst sense – because what you fear CAN happen. It just might be the time that those symptoms mean more…. and in this case, they did. They meant a flare. As the first week of May continued, all GI tests were normal but my symptoms progressed to extreme fatigue and even more troubling, severe pain. I wish I could effectively explain the feeling of TA/Vasculitis pain. I know it is different for each person, but for me when I flare, it is a deep, stabbing pain in different locations, but consistently in my armpits, jaw, groin, behind my knees, ankles and/or in my abdomen. Think of places you might feel a pulse, and most likely I have felt pain there.

The fatigue and pain got steadily worse (read as uncontrollable) and I bought myself an admission to Duke for IV pain meds and IV steroids. This was May 11th. Three things to note (again, I won’t dwell because that just isn’t me – but if you care enough to read this, you know me well enough to realize that if I’m mentioning it, it wasn’t easy. And, not easy in a way that means devastating). First and most importantly, I had been successfully weaned off prednisone for the first time in twenty-two years in May of 2013.  Wait.  Did you skim that part?  Go back, that was key.  OFF prednisone. As in, nada. Nashi. None.

I got one year off.

In. Twenty-Three. Years.

And in that single year, I realized how it felt not to be on steroids for the first time since I was a teenager. My face returned to recognizable, steroid acne cleared, I lost 25 lbs. without really trying and lost fat in those places where fat should not ever accumulate (buffalo hump. Eww). It could also be mentioned, if I wanted to underscore the unfairness of it all, that during the one year off prednisone, I had a bilateral mastectomy to tackle. Despite what I went through with my surgery, the euphoria I felt in being well enough to come off prednisone cannot be overemphasized. Nor, the depth of my pissed-offed-ness in needing to go back on a high dose with this flare. Side effects returned immediately. Round face: check, acne: check, buffalo hump: check-check. But, I digress.

The final two things to note: May 15th was my scheduled movie showing of Decoding Annie Parker and May 16th was my birthday. I was in the hospital until the 18th.  In the interest of full-disclosure, my 42nd birthday despite being in the hospital, was very nice. I saw friends and family, felt loved and was well medicated. Also, through an amazingly thoughtful act by friends Teresa and Cara, my movie showing was rescheduled to May 29th so I could attend. After discharge, my symptoms did not improve. I was unable to walk without an arm to hold and not able to go further than a few steps assisted. I did make it to the movie, albeit in a wheelchair, and it was a touching and fulfilling event. I was so happy to have been able to see it through to the end. Thanks to all who came and watched.

June 2014: Broadway is dark. (Goo Goo Dolls, anyone?)

June consisted of handfuls of medication (without improvement), pain meds as often as I was allowed to have them and stillness. My world was as narrow as I could imagine. I felt like a disappearing act. It was as if I had been plucked up out of my life with everything else carrying on, as life does. Work was abandoned without notice, others helped feed our family, delivered groceries, and John was left to attempt to maintain a work schedule, care for all things children, pets and my slumped body/mind on the sofa. Like I said, dark. The sliver of light in the middle of June was the decision to try a new medication called Remicade (Infliximab) by IV infusion. It was quickly approved by insurance and I got my first infusion on June 14th. The second infusion on June 27th was expected to be a turning point, so we made the decision to continue with our Florida plans and spend most of July in Siesta Key. I knew my ability would be limited, but with a smaller living space and wider outdoor space for the kids, I wanted to be there.

July 2014: Saltwater heals.

Enough said. I had enough improvement in pain that I was able to wean myself off of the heavy pain medication while in Florida and very slowly regain a little strength. I still required assistance if I needed to walk a long distance or long periods of time (yes, the electric wheelchair at the grocery store with my kids giggling happened).

August 2014: Great expectations.

I had my 3rd infusion of the “loading dose” of Remicade the last week of July. I expected a dramatic boost. I expected one day I would wake up and be back to my old self. In many ways I’m still waiting. A few medication adjustments after the 3rd infusion (decrease in Cellcept) unfortunately caused a dip in progress and by mid-August, I was heading the wrong direction with more fatigue and pain. I had serious doubts that I would ever see my former quality of life. Fortunately, the past few weeks with another adjustment in meds (up on Cellcept, down on prednisone), I am again on the upswing. A new lump in my left chest capped off the month of August. Yes, a new small, round mass that multiple doctors told me felt like a lymph node popped up near my left chest incision. Remember my propensity for assuming random body changes could be major? Yep, I was convinced that the lump was something bad. It didn’t go away so after 3 weeks, the rheumatologist told me I needed to see the breast surgeon. I saw him last week and had a needle biopsy. Thankfully, it is neither a lymph node nor cancer. It is a benign collection of irritated tissue/fat necrosis that can develop after trauma or surgery. Finally, a little more light.

Summarizing the physical details does not come close to the whole story. I am still processing what the emotional cost has been to me the past few months. I do not recognize myself yet. The loss of control is overwhelming. I see glimpses of myself; my strength, my humor and I’m trying to focus on those traits to help get through. It is difficult for me to be this honest about my condition because I never want it to be construed as pity-seeking. I struggle every minute between being so thankful that I am not where I was in June, and being honest enough to admit I am still a long way from where I want to be physically on a daily basis.

But at the risk of sounding trite, the show must go on. It’s time to play the music; it’s time to light the lights. And there IS light. Enough light to want to sit down and write. Enough to be willing to share my dark. Enough to know that I will do what I can to not disappear. I have gratitude for simply being, well, here. I want to fight, even if right now the fight looks a lot less like a badass warrior princess with armor (that I imagine in my head) and a whole lot more like me dragging my prednisone-ravaged body through the day.

Getting knocked down gets tougher each time. My middle-aged body takes longer and longer to recover. And, I am tired. It also gets harder to stand back up not knowing when the next knock will come. Because it will. My knocks will look different from yours, but the dark will happen to all of us. Let’s not be foolish enough to think if we just get through THIS difficult event, the bright will last for good. I know that sounds pessimistic, but I believe it is a truth we need to acknowledge to have the guts to keep going. It takes more strength to stand up despite knowing what could come or how long you will be upright before you fall again. More determination to keep pushing that rock up the hill fully accepting that one day it will roll down and we will need to start again.

But we will keep going. Keep pushing. Because when the light comes back? Worth it, every time.


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My something

I know.  Listen, I know.  I know before even posting this that 8 out of 10 of you already have this information. But, if you can believe it, there are several people in my world whom are not on Facebook (imagine the freedom!) and otherwise would not yet know about the movie.  Yes, THAT movie.

Okay, now that 3/4 of my audience have already clicked off this post, the rest of you get the back story on my latest project.  Recently I received a movie preview in my News Feed on Facebook (again with the Facebook) for a small, low-budget movie being released on May 2nd in limited cities across the country.  It is called Decoding Annie Parker.  I watched the video trailer and was touched.  That is really all it takes these days to get me hooked.  And boy, was I hooked.  Obviously, it is not too difficult to realize why a movie about a breast cancer survivor would be of interest given my recent year, add to that a strong, determined woman scientist named Dr. Mary-Claire King who was steadfast in her determination to prove a genetic link to cancer (specifically BRCA 1).  Furthermore, Dr. King is a real woman, geneticist, pioneer who (UC Berkeley/University of Washington) in 1990 succeeded in proving the link.  Women are now able to be tested for the presence of BRCA1/BRCA2 and can thus make decisions about their future/prevention before cancer is given a chance to strike.

On the Facebook movie preview there was mention that one could have a local showing of this film through a company named Gathr online.  I did my necessary research on the site, realized that I could attempt to have this movie shown locally, but I would need to have 50 people sign up before it would be confirmed.  50 people?  Could I reach that number?  Let’s see…..there is my husband, my mom…..um, a few friends….Being one to not shy away from a challenge, I had to try.  So through the hoops I jumped, requested a date/time/theater and waited.  A couple of weeks later I got an email…I had a screening!  I now had a theater, Southpoint Cinemas in Durham, NC.  A time: 7:30 PM and most importantly a number: 81.  Wait.  81?  I thought it was going to be 50.  Nope.  I needed to get 81 people to commit to buying a ticket ($11).  This was because I happened to have been given a large theater and needed a higher quota to meet the requirements of the company.  Long story short, 2 weeks ago I started sending evites, emails, Facebook posts, to any and all local friends/family/neighbors.  I humbly share that to date we have sold 90 tickets and the movie is an official GO.  Thank you, thank you to all  who have already bought tickets to the movie.  To those who haven’t, here (again) are the details below and I would LOVE to see you on the 15th.

A few people have asked me so I will share.  No, I am not BRCA positive.  Honestly, I was never tested.  My decision for bilateral mastectomy was based on other factors (my autoimmune disease, a “high-risk” type of cells found in my breast, some family history, my lack of cancer treatment options if cancer had occurred, etc).  I find myself a bit of an anomaly in this sect.  Am I a cancer survivor?  No.  Prophylactic mastectomy?  Yes.  Am I BRCA positive?  No.  Did I have reconstruction?  No.  But, I feel such a strong drive to get information out to women, encourage patients of any gender to be empowered to make medical decisions that are right for them, raise awareness for breast cancer, genetic testing AND enjoy a night out with those who have been so amazingly supportive of me this year.  That is why I am doing this.

I have expanded my marketing a bit since we still have 200 seats in the theater available before we are full.  Not in my wildest will we sell out, and even if only 20 people show up, I will be grateful.  But, I just do not want to waste the opportunity to share the information in case there are people in town who would enjoy seeing the movie.  Bottom line: please share this information (email/post/list-servs).  I am now reaching out to local charities, hospitals, genetic counselors and some of my Duke caregivers.  I just got an email yesterday to be interviewed on a local radio show to help promote the showing!  So, please help me get the word out.  I will be especially grateful (at least more than I already am, if possible).

Decoding Annie Parker

May 15, 2014 7:30 PM – One time showing

Southpoint Cinemas, Durham, NC

For tickets:  www.gathr.us/screening/7745

Trailer:  https://www.youtube.com/watch?v=LQQRTrV1Tos

Lastly, for those of you who are used to reading spoonsandarmor, you know I can’t end without leaving you with a small take-away.  If you took the time to watch the trailer, you will see there is a point (1:50) where Annie’s husband says “Why can’t you just leave it alone?” and she replies “I’ve got to do something.”  The first time I saw this movie trailer it compelled me to act.  I am still not sure why.  But, I continued to go through the process to see if I could make it happen.  It just felt like something I needed to do.  Something I could do.  My something.  It doesn’t matter what it is, but if you have that feeling that something matters to you, that you could make a difference, no matter how small, I suggest you follow your gut and give it a try.

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The fence

I expected it would happen.  It’s called LIFE.  I’m back to busy and finding less and less time for writing.  While going through the most trying experiences of the past several months, the words flew onto the screen so fast my typing fingers were a blur.  My thoughts, feelings and posts were easy and open.  Now, not only does it take me longer to find time to sit quietly, but more discipline to find the right words and enough confidence to continue putting it out here.  During this experience I have learned that writing is something I must do for myself.  I love it when ideas percolate and start to form.  As soon as I realize I have something to say but am not making time for it, I feel restless.  I have trouble sleeping.  I go back to the topic I have in mind so often that I do not feel alone in my head.  If I ignore it or procrastinate, it is as if I have disregarded something important.

It has been 5 months since surgery.  I am doing so well, it is amazing even to me.  My body has healed beautifully.  It is cooperating and dare I admit, thriving.  In my life, I haven’t ever been able to rely on my body doing what is expected.  Ever.  With a chronic illness, one gets accustomed to the lack of control and doubt, so things going this smoothly is an unexpected victory.  I saw the surgeon last month for my final office visit.  As much as I like and respect him, I am happy to say that I never need to return to the breast cancer clinic!  I am still having some significant tightness in my pecs and his recommendation was “massage, massage, massage”.  I explained to him that I have been going to massage therapy since before surgery and have continued consistently since.

I have an amazing massage therapist named Mary.  She has experience with surgical (specifically mastectomy) clients and is responsible for a considerable part of my smooth recovery.  The first time I was healed enough for her to start to work on my pecs was a fascinating experience for me.  I was face up on the massage table with the sheet tucked up to my shoulders.  She slowly drew the sheet down to my mid-chest.  My immediate reaction was to think I needed to yank it back up.  I mean, my chest was exposed….isn’t that, um, private?  Should I be okay with this?  The simple fact was that all (well, both) reasons for modesty regarding my chest had been removed.  I literally had nothing to hide and that in-and-of-itself felt different.  I was grateful for her reassuring yet matter-of-fact demeanor.  As she began to work some of the tightness out of my incisions, as well as deeper tightness in the muscles, I became emotional to the point of choking up.  The bottom line?  She was helping me.  In a way no one else had been able to understand or provide.  It felt like letting out a huge breath of air.  I was trusting someone else enough to accept what they had to offer.  So much more than the simple massage it was at its core.  My muscles desperately needed it, and accepting the help despite the vulnerability it took was overwhelming for me.  In the many, many times since that first time, I continue to feel a bit exposed (pun intended) during the chest massage but have learned to allow my mind and muscles to let go.

I’m have been trying to sort out my feelings about mastectomy scars in general, and my own chest, in particular.  For a long time, my mind has been sitting on the fence somewhere between self-consciousness and openness.  At an MRA (an MRI machine/scan but with dye to see the vessels) last month for my yearly Takayasu check, the nurse came in before the test to put EKG electrodes on my chest.  As she started to bring down my gown to attach the stickers I quickly stated “Oh…..wait…….I don’t have breasts.  I don’t want my scars to scare you.”

Okay, hold on.  What?  Where had that thought come from?  Certainly I had not planned on blurting it out that way, but when push came to shove, I apparently felt like viewing my body needed a forewarning.  Would I have felt the need to caution medical staff about a long C-section scar?  A chest scar for heart surgery?  An amputated limb?  No.  This felt different from any of those examples, and, different in a way that did not feel good and did not make me happy.  It was right about then that my mind assuredly jumped off the fence over to the side on which it wanted to live.  Welcome to acceptance, friends.  It feels like home.  Now, that doesn’t mean that I will be mowing the lawn or going to the beach without a tee-shirt (although interestingly enough, it is legal for me in most states).  Nor do I mean it to sound like an easy thing to completely let go of the self-doubt.  But it does mean that I will no longer treat my scars as anything other than a couple of accessories that tell a powerful story.  My story.  And, I sure hope it means that by not wearing prosthetics, not making apologies for my scars, sharing my experiences, writing my blog, or just living normally will in some way empower or encourage others do the same.  For whatever you consider your “scars” to be, I hope we can all get to the point where just before we drop the gown, the only thing we feel compelled to share is a smile.

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An honor just to be nominated

My mom and sister told me today that they nominated me for an “Unstoppable Mom” contest on TV.  My first reaction was to cry.  My second was to say to myself “who me?”  Sadly, the first thought in my head (and I do think is a common theme in “previvors)” is to belittle our journey by thinking that because we didn’t have cancer, it is not as important.  It is however, important for me to acknowledge that I did something that required courage and although I was fortunate enough to not have battled cancer, what I went through is worthy of honor.  I am not removed from breast cancer.  It is because of breast cancer that I had to lose my breasts.  It was hard and I am proud of how I handled the entire journey (whew, why is that so hard to say?).  I am grateful to my mom and sister for helping cement that message in my head today.

Below is the letter submitted by Amy on my behalf.  I am working on another post, so an update will happen shortly.   The finalists for this contest will be announced on March 10th.  In no way do I believe that my story will stand out among all the other amazing woman who I’m sure were nominated by their friends and family, however, if I do get chosen, I will be the first to publicize my story and beg for your support through voting. 🙂

My sister Susie is a married mom with 12-year-old boy and girl twins and an 8-year-old boy. She embodies the very notion of “unstoppable” in her attitude and bravery in how she lives her life and sets an inspiring example for her kids.
 
At the age of 20, Susie was diagnosed with Takayasu’s arteritis, a rare form of vasculitis that causes blood vessel inflammation.  Takayasu’s arteritis (TA) can be tricky to manage.  Through her 22 year fight with her disease, Susie has tried a variety of medicines, been in and out of hospitals, and heeded the advice of her specialists.  Susie’s TA is an important part of her identity, yet she doesn’t let it define her. She successfully carried two pregnancies and dove in head first into community organizations like Mothers of Multiples, setting an example of involvement and community support for her kids at an early stage.  Early on in her motherhood, she established herself as the friend who would be the first to step in when another was in need.
 
As her kids have gotten older, Susie has continued to be a role model at the family level by helping with homework, driving to/from school and sport activities and running the house when her husband John has to frequently travel for work. She has even taken up two part time jobs to help contribute and use her nursing education.  However, Susie never stops at the typical “mom stuff.”  She goes above and beyond paying it forward in kindness with her friends, taking care of her family, herself and managing her disease.  She continues to show her children the importance of taking care of others by regularly contributing in her community through PORCH – People Offering Relief for Chapel Hill/ Carrboro Homes, an all-volunteer, hunger relief organization for families going hungry in the Chapel Hill and Carrboro community. Somehow, Susie even finds time to contribute to her local PTA during, “Teacher Appreciation Week.” She also met her personal goal of training and running a half marathon at Disney World, showing that she’s just as strong on the outside as she feels on the inside.
 
Susie was happily moving along in life when a new, unexpected health challenge occurred last fall.  A breast biopsy came back as questionable for cancer.  She consulted her team of physicians for a recommended path forward. She also thought long and hard about it herself. The unanimous decision was that a bilateral mastectomy without reconstruction was the best chance for her in living her life with Takayasu’s arteritis. True to herself, Susie owned this decision. She also wanted to share it in the most positive way with those close to her. She didn’t dissolve into a puddle of tears.  Instead, she started a heartfelt blog. She planned her recovery to make sure her family was taken care of. She honestly and openly shared her struggle and story and in turn shared others’ courageous stories as a way to deal and heal.  Yet again, she exemplified the best kind of role model you could be for your children and husband through her attitude and unwavering courage.  More than 3 months out from her surgery, Susie is doing great. Those who proudly know her share in her joy.  She can live a life free from worry about breast cancer causing additional health complications and spend her time doing more important things, like positively impacting her children and everyone around her. As she recently posted to her Facebook account, “I want to inspire people. I want someone to look at me and say, “Because of you, I don’t give up.”
 

 

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Staying open

It’s been awhile, friends.  Let’s hope I still remember how to write.  And, that my writing still has value to others now that I am out of the most intense aspects of the past few months.

Whew.  Did all that really just happen?  It is obvious to me that when I’m faced with something challenging and go into armor mode, the physical fight comes first and naturally, but the emotional part does not hit me until the immediate physical threat is over.  It is not so easy for me because it takes an effort to face the emotions.  And vulnerability.  Ugh.  Not my strong suit, for sure.

I have changed inside more than expected and I am still figuring out how to incorporate it into my daily life.  I feel much more.  I take in more.  I care.  I am not trying to say that I was icy before, but the emotions/thoughts/feelings are very close to the surface and accessible in a way they haven’t been in the past.  The differences show themselves to me both in small and more noticeable ways. Without thinking about it, I use a lot more terms of endearment.  With everyone.  It feels natural and easy for honey or sweetheart to roll off my tongue, even to strangers.  I need to say I love you to people I care about – to those who should have heard it earlier and more frequently.  I want to take all of your faces in my hands and give you a big smooch.  I want to cherish good times, be together, connect and be my real self.  Maybe not completely different to how I have felt all my life, just now it seems so much more crucial.

Over the Thanksgiving holiday, we were able to spend the week with extended family.  I sought out the advice of my future sister-in-law, Brandi (btw I love you) aka yoga master, about stretches I could do to help my tight pecs.  She got down on the floor with me and showed me numerous stretches, not only for my trouble spots, but to open all the way across my chest, shoulders, etc.  More importantly, she explained the feelings/meaning behind those stretches.  They are called “chest openers”.  They are challenging stretches for me, not just because my chest is physically tight right now, but because they do not feel natural.  You must be relaxed and allow yourself to be open and exposed to hold the stretch.  Curling up and closing in feels easier, but the importance of feeling open and vulnerable is essential.  The weeks following Thanksgiving, I found myself going back to the words “chest openers” over and over.  I realized it was such a good mantra for how I am feeling right now.  Physically my chest might still feel tight, but I am working on it.  Emotionally, I feel wide-open and have an aching desire to maintain it.  I hope by simply being cognizant of the feeling and continuing to work on my “chest openers”, I will be able to maintain openness in all areas.  This will be a major focus for me in 2014.

I continue to change and evolve in relation to my “new look”.  In the coming weeks I will do my “after” photo shoot with my friend, Robin.  I am ready and comfortable to capture how I look and feel in some new images.  I will share when they are done.  I focus less and less on how I look (thank goodness) and now getting dressed and going out seems uneventful.  I did have a recent shopping trip for a more “padded” option on the days I feel like having more shape, but mostly comfortable without.  I have been researching options for permanent ink (tattoo) for my chest to feel a bit more like myself.  There is a woman in Asheville, NC who specializes in areola tattoos for mastectomy patients and it is quite remarkable. This is a link to her website if you are interested in looking.  I share this, not intending to invade my own privacy, but to continue to be open.  I have met so many others who have been through my situation (reconstruction or not) – and if any of you know someone, please pass on the info for this type of resource.  www.restoreareola.com.  I expect to make a road trip to Asheville this spring. 🙂  Also (with rheum doc approval) I hope to mark my body with a Takayasu tattoo.  After 25 years of this disease calling the shots, I want to make the decision about how my body is affected.  It will need to be small (less risk of infection) but the reality of adding something beautiful to my body is the ultimate in empowerment.  Stay tuned.

In the meantime, I will try to stay in closer contact.  The time from Thanksgiving to the end of the year was a whirlwind.  A lot of processing, trying to get back to a daily routine after such a major event and the daily rushing of the holidays.  My next focus is on my overall health.  I am thrilled to be off Prednisone (going on 8 months!) and need to take advantage of having it out of my system.  I need to implement a much better fitness program – for cardio health/vessel health.  How cliché this time of year to be thinking of better fitness, right?  But, now that I am through the storm of this fall, I need to make sure I am taking care of the rest of me.  Take care of yourselves in 2014.  Thanks again for all of the continued support.  I love you all.  Openly.

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New paths

Oh, what a difference a week makes.  And, I think this is the third time in a row I have made that statement.  Today marks 3 weeks since my surgery.  The transformation and level of healing are simply incredible.  I have not one band-aid on my skin.  Nothing is stuck to me.  Nothing sticking out.  Prior to 3 weeks ago I didn’t know enough to be grateful for this feeling, now I know there is nothing like it.

Last Tuesday afternoon was my 2nd post-operative visit and now I won’t go back until Feb when I see the surgeon for the last time.  My surgical drains came out at that visit (I was desperate), new dressings on those spots, an additional 48 hour shower restriction (for those counting, I was already at 15 days with no shower) and I got the green light to start driving.  Woo-hoo!  I was free!  Let’s go!  Um, straight to bed because I was so tired from spending the afternoon at the doctor’s office.  The next day I decided I needed to drive myself to CVS to pick up a prescription.  I got no more than a mile up the road when the sweats and shaking started.  I was close enough to the store to finish my task but I was quite humbled by the level of fatigue I felt by simply leaving my house and sitting behind the wheel of the car (and I hadn’t even showered yet!).  I learned that just because I was allowed do those types of tasks, did not mean that I could do those types of tasks.  Good lesson.

I spent the next 3 days or so resting more, gaining more strength and spending more time in the shower than my 12-year-old daughter.  The end of last week and this weekend have been a big turn-around.  I have been out for lunch with friends, enjoyed a glass or two of wine, gone for a long walk and today ran several errands in a row without needing to come home.

As I progress down this road, I am firmly in the “just accept yourself already” part of the process.  I do not consider myself a vain person at all.  However, no one wants to worry that they have cause for stares from others in public.  I have a flat chest.  I have not found ANY padding, insert, etc that looks right, so I have decided not to use any for now.  Interestingly enough, no matter how many shirts I angrily throw down on the floor after looking in the mirror, I am not unhappy with the way I look.  It is just different.  It feels different.  It looks different.  I am now charged with the task of going through my wardrobe.  Every item, essentially, needs to be assessed and sadly, most do not work.  In the Great News department, there are many items that were previously too tight (we save those clothes in the back of the closet because of course they will fit again one day) that I now happily throw over my head and stare down amazed that something narrowish can fit around my body without looking too tight or inappropriate.  Happily, most of my tanks, running shirts and tee shirts are working…so at least I will be comfy until I have time and energy to replace the others.

One more quick topic before my spoons are gone for the night.  Nerves.  I was a bit on the cocky side that I was trudging through this recovery with expected levels of incision pain, no problems with healing, infection or complications.  When I saw the surgeon he kept asking me “having any zings?”  Huh?  You know, nerve pain.  Zinging pain.  Fortunately, I was not experiencing any of the “amputation” possible symptoms.  Then, one evening last week it happened.  It wasn’t a zing.  Zing is too nice.  Zing is a lovely flavor in a summer dish.  This was like someone decided to stick a pin multiple times into the central, particularly sensitive area of a breast, which I no longer had.  Without looking, I would have sworn that my whole breast was intact, and that particular part was there and suddenly very unhappy.  Obviously, being a nurse I have known about phantom pain for a very long time (and found it fascinating as well), but until I was desperately pressing on my chest trying to find the area of pain to help rid myself of it, did I realize how powerful it can be.  I could not stop myself from pressing all around looking for something that wasn’t there. (for any science geeks like me, the nipple is innervated by the fourth intercostal nerve in the ribs.  Not where I was looking for it).  The nerve pathways have been interrupted, but they are late to the party, so it takes them a while to realize their path is gone and they need to find a new way.  That is why I feel sensation in a body part that is gone.  That is why, if I am patient, once they find their way on a new path, all will quiet down.  I am very lucky that the “zings” have only happened a couple of times.

I would be remiss if I didn’t include a scene from a few nights ago.  Through this process, we try to help our kids appreciate just how many friends, family and neighbors have supported our family.  We have kept a running list of people to thank for their help.  John asked me to pull it up on the computer and show the kids so they could realize how long the list has become.  I started reading the list out loud.  My sister who flew here from Philly to be here the days around the surgery; my mom who sat with John at the hospital during the surgery; my father-in-law, who came from Atlanta to stay for a few days while John had to travel, to care for me and the kids; one of my best friends, who flew down from Michigan for a weekend and ended up doing laundry, taking kids to the park and changing my dressings, to about 20 families who have brought food, others who have gone to the store, taken my kids, sent me cards, gifts, told me they love me, are proud of me, help hold me up  and cheer me on when I’m not feeling strong, tough or normal.  I could not read the list out loud to them without choking up.  I am completely overwhelmed with emotion.  I have decided I don’t tell any of you often enough how much I feel about you.  That will change.  Thank you.  I love you.

Here’s hoping I will be equally amazed at this week’s progress next time you hear from me.  In the meantime, my nerves and I will each be finding our way down our new paths.  I hope we both get there quickly and successfully.

 

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Time to recover

The appointment with the surgeon on Tuesday went well, just not exactly as I expected.  More on that in a minute.

Before I left for the doctor’s office, I got myself cleaned up for the first time in 8 days.  I almost felt human.  A pair of jeans instead of pajamas will do wonders for a person.  I decided to take some photos of my bandages and drains before they were removed.  I have a very intense need to document every step of this process.  I am not yet sure why that part seems important to me, but I know I will look back frequently at these weeks of my life and want to be able to revisit each step.

I proudly presented my notes and recorded information for the surgeon, ready for his approval for drain removal.  He was content with my recovery progress yet felt that it would be best to keep the drains in a few more days to make sure they were really on the way down.  I had no idea how right he would be.  We scheduled another visit for Friday (yesterday) and I waited for the nurse to come in to remove the dressings.

In the meantime, he handed me my pathology report to review stating “good news, no bad stuff in there.”   He was absolutely right.  No cancer cells.  Very good news.  He walked out and left me to peruse the report.  Specimen A, otherwise known as my right breast, specimen B, the left.  Details, weight, measurements related to the “specimens”.  The emotion I had been waiting on was suddenly upon me.  It was there in black in white.  What I had lost.  What was part of me now reduced to details in a report.  I broke right there.  It needed to happen.  I took my time and actually was surprised that it took less time to recover than I would have thought.  I know we can think about our bodies in terms of what they are physically – a mass of cells, tissue, fluid…but we also know they are much more meaningful than that in a million different ways.  So that is what helped me wipe the tears.  The nurse came in, removed the dressings, took out the stitches, left the incisions undressed and sent us on our way.

I have felt much more careful with myself since the bandages have come off.  It is like when you hurt yourself, it you see blood, you freak out much more than if it is just a scratch.  The same was for me once the dressings came off.  When I could see the reality of the incisions, how long they were and the dried blood of the steri strips, I actually felt worse than when I couldn’t see them.  Now after being used to it for the last few days, I am feeling much stronger and more like myself.

And, the surgeon was right.  Ugh.  Being up and around so much on Tuesday, the drainage increased again and has stayed up higher than is eligible for having the tubes pulled.  So, the Friday tube-pulling appointment was cancelled, and we are looking at next week for removal.  I will be resting and reclining until then.

Lastly, for comic relief.  I few of my closest people and I had a side bet going on what the combined weight loss would be, not in body weight, but in actual weight on the pathology report.  There were 5 of us in on it…..and my guess was the lowest at 4 lbs combined.  Others were much more generous in their estimations (is that a compliment or not?).  Anyway, each side came in around 2 lbs, so I am the lucky winner.  Hmmmm.  Not sure “lucky winner” sounds exactly accurate from where I am sitting, but there you go.  Now I get to decide what my prize will be!

Love to you all.

 

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After

Well, they are gone.  I am extremely fortunate to have had such a skilled expert in breast surgery (and he is a plastic surgeon to boot) do my surgery.  I think I was in surgery about 3 ½ hours.  I did spend one night in the overnight short stay unit, although I did not get much sleep (nor do I remember much of what happened), it all went smoothly and I came home Tuesday morning as planned.  My chest is very smooth and flat even with the bandages.  I am amazed how much I look like….well, me.  I am also amazed that I actually like the way I look.  The dressings that are covering the incisions will not come off until this Tuesday when the stitches come out.  The incisions run from the middle of my chest, all the way around past my arm pits towards my back on both sides.  They are no joke. They are long.  They are painful.  I still have 2 drains in place and I hope to have those removed on Tuesday.  These are all of the broad positive things about this experience, but if I am being honest, this past week has been much more difficult than I expected (and I thought it was going to be rough).

I have spent every minute (awake and asleep) in a reclining chair, resting, taking pain meds around the clock, drinking lots of fluids, taking antibiotics and moving slowly.  It has been a painfully long week.  I am exhausted.  At times I feel panicky and almost claustrophobic because the incisions feel tight – like a squeeze across my chest that I want to loosen.  A few deep breaths get me back on track.  My family and friends have been solid as rocks and I would not have gotten through these days alone.

I do feel like I should be making more progress.  I am day 6 and still requiring pain meds all day.  I have reached a point where I don’t need to take them in the middle of the night and that seems like a victory.  Each day is a repeat of the one before.  Logically I know that I need to keep up the resting/healing for another few weeks.  As of now it looks like my body will require that amount of time, but my mind is ready for a few more challenges.  Time to start a thick book, I guess.

Why don’t I feel sad?  Grief?  Loss?  No idea.  I expected it to happen.  To be shocked after waking up from surgery to find a flat chest.  I cannot explain why, but it hasn’t happened yet.  I am prepared if it does and will be fine if it doesn’t.  I don’t know what to say other than I am happy that I have other ways in which to define myself.

So, this week I have the post-op visit on Tuesday.  I expect to get sutures out, drains out and full pathology report from surgery.  I will report back on what I learn.  In the meantime, I will be rockin’ the bed head, sleep-deprived, narcotic-glazed look from a reclined position.  Thanks again for keeping up with my journey.

*please disregard any typos, incoherent statements or grammatical errors.  You may refer to the above statement about current, less than desirable conditions.

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