My First Relay for Life

Hi All-

Today I had the honor of helping to represent the many cancer survivors at the 2015 Relay for Life of East Penn.  This was my first ever relay and I felt a bit out of my element.  I was unsure what to do or where to go.  Everyone was kind and pushed me along in the right direction (happy to tell me where to go!   )

As this year's honorary Survivor, it was my responsibility to introduce myself and tell my story.  Below is the text of my 'speech'.  I thought I would share it with all of you as well.  After some rest tonight, I plan to go back to the park to support my team- Team Atatud.  They are awesome and if you're in the neighborhood of Macungie Memorial Park, stop by.

I remember when the word cancer first entered my vocabulary.  Actually, I don’t think it was the word ‘cancer’ itself, but it was cancer.  I was a small child, probably five years old. 

My mother explained that we had to leave our home and go to help my grandparents.  My grandfather was sick and they needed my mom’s help.  As a result, we kids would go along with her and move in with my grandparents in their tiny little home. 

I don’t remember a lot of specifics about that illness, snatches mostly- he coughed into a tissue and it looked bad.  He was rushed to the hospital in the middle of the night- multiple times.  As kids, we were shielded from the scary details.

While I didn't have a name for it at the time, I later came to understand that my grandfather had contracted melanoma in his lungs. 

Those months were hardest on my mom I think.  She watched her father’s body deteriorate as it was ravaged by the cancer and the treatments, and once it reached his brain- it took his mind as well.  Looking back on the photos from those days back in 1967-1968, I see a woman who is hanging on by a thread, trying to make it through.

She did make it through as all good caregivers do.  She took care of her dad and also of her mom who was left behind when his time was done.  As their only child, it was all on her. 

My grandfather died in October of 1968

Flash forward 45 years. 

I have always been the woman who was diligent about women’s health.  Annual GYN exams, my mammograms were done almost on (or actually on) the same day each year.  I rarely missed my screenings and if I was late, it grated on me with an almost physical feeling- I was compelled to stay on top of those things.  

October 9^th, 2013, I had my annual mammogram.  Normally, these things were followed by a phone call saying “we need an ultrasound” because they see a cyst or something.  Not this time- It went like clockwork.  Normal!  Awesome!

November 8^th 2013, while taking a shower, I noticed I was bleeding from my nipple (TMI, I know, sorry- important info for anyone who should pay attention to these things).  I immediately called my breast surgeon who got me an appointment for the following Monday.  A quick Google search told me pretty much everything the surgeon would later confirm.  This is never a great sign.

While my mammogram only a month earlier had been normal, I actually had breast cancer.  Initial diagnosis was stage zero ductal carcinoma in situ. 

Even though this was a very aggressive treatment decision- I opted for mastectomy.   It would save me radiation therapy and I had much history of issues with cysts and such and I felt it was the best option for me.  A personal decision each woman needs to make, this one was mine.  I wanted to be done with this for good.

A couple of weeks after surgery, I had arranged a consultation with an oncologist to go over my pathology, just to have him review everything to be sure we had thought of everything.  My mom drove me to the consult since I wasn’t yet allowed to drive.  The oncologist, a warm, wonderful man who I have actually seen as a hematologist in the past, reviewed the chart with us.  He went through the pathology in detail and walked the decision trees that the oncologists use themselves to determine the most appropriate treatments.  He explained tumor grades and hormone receptor status.  I understood immediately what he was saying and before he even got there my mind said   I didn’t want him to be telling me that my cancer was worse than thought, and that I needed chemo, with my mom in the room. 

You see, my mom worries about everything where I am concerned.  She got lightheaded if I bumped my head.  How could she possibly hear that I needed chemo? 

I glanced over at her (she looked very scared) and said “it will be ok” She said “I know”

In that moment we became each other’s caregiver.  While the cancer patient has it rough- cancer sucks, chemo is awful and while I haven’t had to do it myself, I know radiation is as well.  Going through it yourself is one thing - watching the person you love suffer and being completely and utterly powerless to take that suffering away- that is truly terrible.  Caregivers are true heroes and their role can’t be overstated.

I had a lot of caregivers- I mentioned my mom, but I had my whole family- My husband who cooked dinners regularly, my kids who worried and drove me and took time to sit with me at chemo.  My step-dad who just wanted to do anything. My co-workers who picked up the slack at work when I couldn’t.  All my friends and loved ones who sent cards, gifts, called, visited or just posted supportive comments on Facebook. 

All of that supported me and got me through.  My role was just to get better.  I didn’t have a choice but to keep going.  Each of those people who took time to do something to be a caregiver had a choice.  They chose to support me, I can’t possibly thank them enough for making the choice to give me their time and support.  It made all the difference in the world.  They were like my own personal army in the fight I was making against this invisible foe.

My mom was the first cancer caregiver I ever knew.  I never knew that she would need do that for me.  I wish she never had to see another loved one with cancer, but I am very glad I had her by my side.  Her and the rest of my caregiver ‘army’

Please remember to thank all the caregivers.  They are my heroes. 

A Year, An Honor and a Privilege

I have officially reached one year.  The magical one year mark since I completed my chemotherapy.  One year ago today, I was sitting in that big, pink recliner for the last time.  Mugging it up for my daughter's camera.

I expected to look forward to this date.  Honestly, it almost slipped by unnoticed.  I realized it only because I  have been asked to serve as the Honorary Survivor Chair to the East Penn Relay for Life. 

The Relay for Life position is an honor and I feel incredibly privileged to be asked to represent the survivors at this year's event.  

While I have known people who participated in relays, I have to admit that this is the first time I will actually be involved in a relay myself.  I will be learning as I go, but I will do my best to keep up and be where I need to be and not make a fool out of myself or the wonderful person who recommended me.

If you are not familiar with these events, Relay for Life describes themselves in this way (from http://relay.acsevents.org/site/PageServer?pagename=Relay_learn):

At Relay For Life events, communities across the globe come together to honor cancer survivors, remember loved ones lost, and fight back against a disease that has already taken too much. The funds you raise truly make a difference in the fight against cancer just ask one of the nearly 14 million cancer survivors who will celebrate another birthday this year!
Relay For Life teams camp out overnight and take turns walking or running around a track or path at a local high school, park, or fairground. Events are up to 24 hours long, and because cancer never sleeps, each team is asked to have at least one participant on the track at all times.

The first event I attended was last evening.  It was a Survivor Soup Dinner.  I had no idea what to expect, but I had a blast.  While learning about the plans the organization was making for various fundraisers, the great work already taking place to raise money and all the planning for the big event in May was wonderful, the focus of the evening was on the survivors.  

I was one of a number of survivors who were honored during this dinner as we each rose and shared our stories.  Listening to the journey each of these wonderful souls has traveled was nothing short of inspiring.  Some journeys have been longer, some are closer to the beginning of the trip, but we all share a common bond- that big "C" word- Cancer.  

The other overwhelming feeling I had sharing dinner with my new journey mates was Hope.  I know this sounds like a cliche, but it was very much present in that room last night.  There was no 'woe is me' 'I have/had cancer'.  It was much more a feeling of 'This is what happened and I overcame it'

We are strong and nothing is going to keep us down!  

There was also a strong feeling of community around those who need uplifting.  This is a tough community to be a part of, prayers are needed for those who are struggling or have reached the end of their journey as well as those who are left behind.  It is always hardest on the loved ones- they need it most.  The group is right there for them as well.

It was an inspirational evening.  I am grateful to have been part of it.  Thank you to Michele for including me.  

After I got home, I was inspired to do a little art project on the theme.  I had a Munny doll to decorate, so I thought I would do a Relay for Life theme.  The front is the national theme, the back is the one I found on the East Penn page.  She is all decked out in her chemo cap to represent anyone who is or has been going through chemo (crocheted, of course LOL).

I am no artist, but I thought it was kinda cute, so I would share.  

If you would like more information about the Relay for Life, check out my page, the details of our event are available from the page.
http://main.acsevents.org/site/TR?fr_id=66375&pg=personal&px=39090181

Hi- Remember me?

I am still here.  Living.  As it should be.

Those are such wonderful words.

The journey of cancer makes saying those words very special, even if you don't want to admit that to yourself, and never to others.  I am one of those people.  I would never admit that anything else would come of this journey than "I am here. Living. As it should be"

My outlook was one of indignant .... I wouldn't call it denial, I never denied the disease or it's process.  Perhaps a place of considering myself the supreme overlord over this situation and nothing else will win.  Delusional? Perhaps.  Whatever works, I guess.  Laugh if you must, it gets me through the tough times.  ;-) 

So, am I winning?  It would certainly seem so.  Checkups are going well so far.  Next oncologist appointment is in April, so we'll see what he has to say.  Not expecting anything to worry about.

The biggest struggle has been rebuilding the house, so to speak.  These girls have not been overly cooperative.  I will spare you the ugly details, but suffice it to say that I think we may have something workable now.  The first step in tattooing was done in December.

 For anyone reading who doesn't understand, that is the coloring of the nipples to make them appear as natural as possible.  My natural nipples were removed during the mastectomy procedure.  Some people are able to do a nipple saving procedure, but as I may have mentioned before- since my cancer was in the ducts that was not an option for me.

Part of my reconstructive journey has been to rebuild not only the breasts, but also to create the illusion of nipples.  You can't replace real nipples.  The tissue that is taken is unique in its function.  It is possible to make pretty good looking replications however.

This is truly art.  In my case, it started with the plastic surgeon.  Once he had the canvas of the breasts of a size and shape we wanted to work with, he asked about what type of nipple reconstruction I wanted.  The choices are:

None-
This is where your breast is a blank slate.  No nipple.  Makes going braless super easy.  But, not such a natural look.

Tattoos only-
This is where the look of nipples are tattooed on the reconstructed breast.  While the tattoos are amazingly detailed and shaded- there is no real dimension.  With the talented hand of a skilled tattoo artist, the illusion of dimension is added through shading.  Again- the no bra thing is a snap since there is no raised tissue.

Nipple tuck alone-
This is where the plastic surgeon uses skin and sutures to create a very realistic looking nipple.  This procedure alone does not create any coloring of the areola or nipple, but it does create a nipple-looking skin structure.

Nipple tuck/tattooing-
This is the combination of the last two techniques and creates the most visually realistic nipple.  It will not only have the coloring of a natural nipple, but also be dimensional.  This is the option I chose.  My fear- the proverbial 'headlights are always on'.  I was afraid of how noticeable this would be. AND- I have never had a tattoo.  Oddly enough, I was afraid of how much it would hurt.  Everything I have been through and this one made me nervous....crazy.

The actual nipple tuck (by the way, that's my word...not sure what they really call it) was done as part of another reconstruction procedure to tweak the breasts.  They look kind of strange in the beginning and then the look of them kind of 'melts' down as they heal until they look very natural.  It's pretty fascinating stuff really.

My last reconstructive surgery was in October.  I had to let the scars heal a bit before we could think about the tattoos.  At my last follow up, it was decided that December would be the perfect time frame to get on the tattoo calendar.

December 19th.  One year and one day after my double mastectomies was the day.  I went to the plastic surgeon's office and met with the awesome tattoo artist.  She asked me some questions, sketched the placement of the nipples, applied numbing cream and, after it took effect, got to work.  It was amazingly fast.  The whole process took less than an hour, including all the prep work.

It was a bit painful, but in the greater scheme of things, it was far from the greatest pain I have felt.

Healing was quick.  I was careful to keep the ointment that was recommended up until the peeling was done.

They looked like natural nipples almost immediately.

I will go back in March for some additional shading and maybe some work on my scars.  I have scars that run horizontally about 8 or so inches across each breast.  They are red and angry looking and she feels she can camouflage them a bit.

I am so impressed by the process.  It almost makes you forget.  Almost.

November 8, 2013

November 8, 2013.

A day I will never forget. I was taking a shower like any other day. A drop of blood changed my life forever.

So many things have happened since then, it seems like a different life altogether. What has happened?

Well, a year has passed. What does that mean? As a wonderful song from the Broadway show "Rent" puts it - Five hundred twenty five thousand six hundred minutes. How do you measure a year in the life?

I had two mastectomies, three reconstructive surgeries, chemotherapy, lost my hair and some nails along with a bunch of other inconveniences. None of that was easy, no sugar coating that, but hey- it could have been much harder. I feel blessed that it wasn't.

All of these things are minor in the greater scheme of things. I went from having cancer to being cancer free. There are no better words in the English language than "Cancer Free" when you have cancer.

So, how do I feel about it?  Let's look at this from the perspective of the year as a learning experience.  I love to learn things.

What have I learned in the past year:

• Thoughts like "Woe is me" and "Why me" have no point, waste time and energy.
• Family and friends really do lift you up and give you the ability to get through anything.
• I missed my work when I didn't have it in my daily life.  No matter how much I say I wouldn't do it if I were independently wealthy, I now appreciate how much I enjoy what I do for a living more than ever.
• Sometimes it takes a horrible course of events to get you to something you really wanted all along.  I wanted a breast reduction after all.  It just took me a major diagnosis make it happen.  That was definitely a bonus.  
• I hated making my family worry more than any other experience I had this past year.  I pray I never have to do that to them again.
• I am stronger than I ever imagined.
• I love the new me.  Scars, imperfect, whatever- it is all me and I earned it.

Fast forward to November 8, 2014

I spent this day in a much different way than I did the day a year ago.  

Last year I spent the day worrying about what I very quickly realized would turn out to be a new cancer diagnosis.

This year was a blast.  I spent the day with two of my children in New York City- one of our very favorite past times.  Just hanging out in the city for the day.  

What a difference a year makes.  

HIPAA privacy at what cost

HIPAA privacy has given us peace of mind where our personal information is concerned,  or at least - that is the theory.  

From a patient's perspective,  the first effect we saw from this complex law was a change in patient intake at the doctors office.   This was followed by more paperwork - both out of fear of non - compliance with this rule.  

That is something we have all dealt with for years now.  I would wager that few of us read any of the many privacy forms we sign every year... We sign them and move on.

This has morphed into something that I don't think the law makers ever intended - privacy at the cost of the patient comfort and peace of mind.

I am sitting in the outpatient surgical area of a hospital waiting to be taken back for my next surgical step in my reconstructive journey.   The first thing I was told when I arrived was  "no visitors".

I have been here before,  why no visitors?  Family gives me peace and comfort,  not to mention helps with the inevitable boredom that comes with two hours of waiting. 

HIPAA privacy.  

Because of HIPAA privacy,  patients are no longer allows to have visitors at their side.

This unit has beds that are only separated by curtains,  so personal information has been overheard by families for years and this had to stop.

With that need for assumed privacy - by the way,  I can hear everything but I guess that my ears don't count- here I sit,  all alone,  waiting. 

I don't think this is what they meant.

Nine Months

A lot can happen in nine months.

A lot DOES happen in nine months.

Babies are conceived and born in that time. A beautiful thing I have been lucky enough to experience 3 times- the loves of my life.

A school year begins and ends in about that amount of time.

Three seasons of the year pass by- all beautiful in their own right.

It has been nine months since my left nipple started to bleed and my life was changed forever. So much has happened in that time.

Wow, "My life has changed forever" is a very big statement. I would like that not to be true, but it is. As much as I try to push the word "CANCER" down it creeps back into my life. I am cancer-free. Why does it keep creeping back into my daily life?

Once you go on this journey, you can't hide from it- it will always be there. You will think about it every day. From looking at your appointment book, whether it is planning the next appointment or simply seeing all the ones that passed, to looking down at your scarred body- it will always be there to remind you.

I was recently on vacation in beautiful Myrtle Beach, SC. The "before me" would have wandered out to the beach and plopped down on the chair, reading my book all day in the sun. Sunburn would have been inevitable, as would the pain that followed. It was part of visiting the beach. The "after me" made sure I had an umbrella to block the sun, SPF 50 sunblock that I slathered on every exposed area of skin (and those scars, which were not exposed but just in case) religiously and there was NO sunburn. I hid in the shady area beneath the umbrella unless I was in the water. I already had one kind of cancer- I don't want another! Silly? Maybe, but why take chances?

Don't get me wrong, I had a great, relaxing time on the beach- but I was much more careful than I would have been "before".

So, where am I today in my journey you may ask? Or not- I will tell you anyway ;-)

My hair has grown back in nicely and SO curly. I am keeping it short. The general consensus is that I look best with short hair, so I will keep it. Much more gray than before, but that was easily remedied (thanks to my awesome stylist, Courtney!) Kinda makes me wonder how terrible I looked with the long hair, but whatever. grin.

My nails are almost completely back to normal. The exception is my toenails- a bit slower to grow out, but nothing horrible.


OVERSHARING ALERT- STOP READING IF YOU DON'T WANNA KNOW!



My breasts.... hmmm.... well, they are still a work in progress.

The right side isn't bad, but needs a bit of tweaking to remove some redundant skin. This kind of gives it a boxy look on the lower half.

The left side is a bigger issue. It has the same boxy problem as the right, but also is flat- like I am leaning against something but I am not. This is the result of scar tissue in the capsule that holds the implant. The fix for this is to cut out the old capsule, which is essentially all scar tissue and allow it to create a new pocket for the implant. Basically, redo it.

The hope is that the two of them will wind up looking essentially the same once we are done. My scars will become even longer than the 6+" that they are each now, which obviously isn't ideal, but it needs to be done for a better result.

My goal is to be able to look down, or in the mirror and feel like I am looking at natural breasts. That is not what I see right now. My doctor agrees.

I should point out that this is in no way a statement on my doctor's abilities. I was a very tough case having gone from such a large size before to a much smaller size now. The first surgeon had to do very large horizontal incisions which has made this a rough road for all of us. The plastic surgeon is wonderful and is letting me drive this, when I am happy, we are done.

The next step in my journey is scheduled for October 7th.

Still here!

It has been a long time,  hasn't it? 

I suppose that's a good sign- less to talk about must mean life is getting more normal.   Never a bad thing. 

So- quick health updates-

First,  I had an MRI to follow up on the enlarged spleen  and liver cysts that were seen on earlier studies.   Good news!  Spleen is back to normal.  Liver is still cyst-y (yes, I make up my own words)  but no malignancy.  Also good news!  We will do a CT scan in December to look at the liver again. 

Next,  reconstruction is ongoing.  I have had the next step in the process,  which was another surgery to remove more excess skin and to construct nipples.   Some people decide just to tattoo nipple coloring without the reconstruction,  but I opted to go with a more natural look by doing both.

This was a pretty easy surgery over all,  but I did wind up with an infection in the incision on the left side.  That pesky left side-always causing problems!  It is getting better now and should not create any lasting effects.

Assuming the healing goes well,  the next step should be tattoos to create the coloring.  There is an awesome video online showing a tattoo artist doing this for a cancer patient.  It is really quite amazing.

In the category of getting back to normal,  I made my first business trip is since all this began.  I traveled to a conference in New Orleans and I have to say,  it was great to see everyone and feel normal again.  I missed the normalcy.

Lastly... My hair,  oh my hair.   I know many women  are horrified at the thought of losing their hair for any reason,  including as a result of chemo treatments.   I never felt that way.  It's just hair,  it grows back.   I have to say though that this part of my journey has been about the most enlightening of all.

My husband thinks my super-short hair is sexy. In 32 years of marriage he never told me I was sexy in the same way before.  He always said he likes longer hair.   Who knew?  Not him!

Also- total strangers come up to me to tell me they like my hair.   It is a strange experience to walk into the pizza place or a doctor's office and have someone you don't know tell you they love your hair.   Both have happened and it is always disconcerting.   I am grateful for the compliments,  but wow!

More to come as my journey continues.