A moment of darkness

I haven't blogged about cancer in quite a long time.  Honestly I am finally to a point where I don't even think about it everyday unless something triggers it.

Like today.

5 years ago today I was on the table having a radical hysterectomy.  That means EVERYTHING. Uterus, fallopian tubes, ovaries and even my cervix were removed via a robot.  It was #17 of the 21 surgeries I had in 18 months.  It was a premptive strike so cancer could not metastasize to those organs.

I remember that morning.  I wasn't scared of surgery.  It had become kind of a comfort knowing this one was helping me NOT have more cancer.  And I kind of had the surgery down after so many. And I haven't thought much about it since.

Until today.

I have been upset and angry a lot lately.  Life has been stressful with two teens, the heavy burden of medical bills, my struggling health and just life.  People don't understand that being a survivor is hard.  Really hard. The support wanes because you don't look sick and aren't in treatment anymore so it is assumed you are "back to normal. But "back to normal" doesn't exist. I still have doctor appointments, scans and blood tests to screen if the cancer is active again.  I am tired and in pain everyday. And I live with a metric crap ton of guilt. Guilt I survived while other considerably more amazing women did not.  Guilt for the burden it has put on my kids. Guilt for not living a more healthy life prior. Guilt I can't even explain.

Today. This year for some reason I am in deep mourning for the loss of my uterus.  The loss of my womanhood.  I feel hollow where my womb used to be. Maybe it's the realization I'll be an empty nester in just a few years.  Really empty since I'm single too. Maybe it's the insomnia I now have due to whacko hormones which leaves me running on empty. Maybe I'm having my midlife crisis. Maybe it's the Russians or North Koreans or the eclipse. Maybe...maybe...maybe...

I don't know.  All I do know is I feel sad, super pissed off, ugly and and so small and insignificant as a woman these days. I can't remember the last time I felt beautiful. They say there are five stages of grief, denial, anger, bargaining, depression and acceptance. If I am angry does that mean that 5 years later I am only at the second stage? Or do we cycle through the stages randomly?  I don't know. 

So today it feels fitting there will be a total eclipse.  Several minutes of  darkness where the moon completely  blocks the sun. Because that is how I feel.  Engulfed in darkness. I feel such a deep sense of loss and mourning. 

But even in a total eclipse you cannot block out all of the light of the sun.  If you look at photos of an eclipse it actually looks like the light is surrounding the darkness of the moon rather than the moon blocking out the light. The more darkness there is, the brighter a light shines. In that I also feel a sense of hope.  It's small today but it is there. I believe it is there and belief outweighs so much when it comes to success. I believe this moment of darkness will pass much like the light from the sun will return as the moon moves through it's phase.  I believe it is teaching me and I will be better, stronger, more compassionate and wiser for it. 

But for right now I am going to sit in the darkness.  I am going to allow the mourning.  I am going to dive into the grief and sit with it. Maybe I will finally cry about my missing womb. I don't know what I will need to push through this grief but I will.  I just will. 

I am going to have my own eclipse....of the heart. 

(I know you're all singing that song now...)

The girls: Tattoos and Tata's! The final phase.

I took my break.  Enjoyed Christmas.  Attended Deana's funeral.  And fought by way through a very dark depression.  When my 42nd birthday arrived in March the haze was lifting and I was ready to move forward.

My surgeon had an aesthetician that had certified in cosmetic tattooing so I gave her a shot.

I was mostly healed from the attempt at nipples. Now we needed to add the areola by inking me baby!

I was pretty skeptical when she took a washer and put it on each breast with the faux nipple through the hole and traced it.  I mean really?  No one has perfect round areolas.  But whatever. 

Then she got out several colors of skin tone ink.  She asked me to pick.  Here we go again with the picking of things I shouldn't of ever had to pick.  I just let her pick.  Kind of a mistake. After the first round I looked like I had pepperoni for areolas. 

Holy cow these are waaaaay too dark and waaaaaay to round. 

But it didn't hurt.  I have no feeling on my breasts which is great for tattooing. 

I suddenly felt......like......I had breasts!  Boobs!  Tatas!  Titties!  Winning!

But I hated the color.  I had no clue if you could lighten them.  So on the next round she added a new color to make them less brown and more taupe/pink.  And she feathered the edges a bit. 

I still wasn't in love but they were improving. 

But it really as an amazing transformation in the making. (This is the cancer side)

You know when I look at these pics I don't see scars.  But I do see stretch marks.  I worked hard for those through childbearing.  Two kids, all natural. 

We decided on another pass.  She added another color.  Then they looked peach and I hated them. 

They didn't match in size or color.  I was sad.  I'd rather have the pepperoni. 

I gave her one more chance.  And it got better.  But the color was still weird to me. 

For the war I've been through they don't look all that bad.  Today they tattoos have faded to an ugly orange ish color which I hate.  But with millions in medical bills, I can't afford to have someone fix them with fresh ink and a better eye.  But a girl can dream.....

Trust me.  A girl can dream.  And dreaming of surviving and having this outcome was one I didn't think was possible.  I'm so glad dreams come true.

Pink: The hot new accessory

Pink 
It's everywhere the month of October. You can't enter a store, gas station or even watch TV without getting inundated with it.   Like we are getting hosed down with Pepto.  Except it GIVES me an upset stomach instead of relieving one.

Please don't buy all the crap out for sale everywhere. It doesn't go where you think. Trust me. I applied to every organization on the planet for assistance. Single Mom. Tiny income. No insurance. Guess what? Nada. Such a waste of time.  There are large organizations you are all familiar with and whom I cannot name or they will hunt me down that put on huge events in the name of breast cancer awareness and research.  They claim to be Non profit.  It's a farce. 

"Financial reports reveal Nancy Brinker, founder and CEO of the Susan G. Komen foundation, received a 64 percent raise for a total pay package of $684,000, and despite Brinker announcing she would be stepping aside 10 months ago, she is still CEO of the charity."
http://investigations.nbcnews.com/_news/2013/06/10/18869742-susan-komen-ceos-salary-draws-fire-as-donations-drop-races-are-canceled

And more recently:

 "Dr. Salerno’s annual salary as President and CEO has been set at $475,000. Dr. 
Salerno comes to Komen with more than 30 years in public health programming and 
research oversight at some of the nation’s most prestigious medical and research 
institutions. She is a Harvard-trained physician who has implemented and overseen 
community health programs for the Veterans Health Administration and National 
Institutes on Aging. She also oversaw the National Cancer Policy Forum – a 
consortium of government, industry, academic, consumer and other representatives 
that identifies and examines emerging high-priority policy issues in cancer. 
o Dr. Salerno’s compensation is conservative versus those of CEOs at other 
major charities and well below those on the 2013 Charity Watch Top 25 
compensation packages. http://www.charitywatch.org/hottopics/Top25.html
 Nancy Brinker’s annual salary is set at $390,000 to reflect her new role as Founder 
and Chair, Global Strategy. This is a decrease from the $548,000 salary that Brinker 
earned in her role as Founder and CEO in 2012. As Founder and Chair, Global 
Strategy, Brinker’s role focuses on building Komen’s global outreach, with an 
emphasis on the growing cancer crisis in developing nations. She continues to 
represent Komen with global health organizations, for example, the World Health 

Organization and others, and has a significant role in fundraising. She continues as a 
lifetime member of the Board of Directors".
http://ww5.komen.org/uploadedFiles/Content/AboutUs/Financial/SGK%20FY13%20990%20Exec%20Comp%20Statement%2012.29.pdf

You can read their most recent financials here:
http://ww5.komen.org/uploadedFiles/Content/AboutUs/Financial/Susan%20G%20Komen%20Financial%20Statements%20FY13.pdf

But is everything you buy with a pink ribbon going to the Komen Foundation and reputable breast cancer organizations?  Is it even going towards breast cancer?
HELL NO!

Welcome to :

Pinkwashing

Breast Cancer Action coined the term pinkwashing as part of our Think Before You Pink® campaign. Pinkwasher: (pink’-wah-sher) noun. A company or organization that claims to care about breast cancer by promoting a pink ribbon product, but at the same time produces, manufactures and/or sells products that are linked to the disease.

Check out their website to learn to "think before you pink!"

http://thinkbeforeyoupink.org/

I've learned so much about breast cancer awareness and all of it's good and bad.  I've developed a love/hate relationship with the ribbon.  It's personal to me.  It's symbolic of my fight.  It gives me comfort and makes me feel a sisterhood when I see another survivor wear it.  But it also makes me angry.  That ribbon and all of it's fundraising efforts did not help me.  I hope they find a cure and it helps those in the future.  But people need to know how to REALLY help.  

In my experience and the other pink warriors I know it came down to friends, family and a couple of local donors that helped me. If you really want to donate, do good in your local area. Help someone who is battling or find a local support group that desperately needs funds. (I have listed a few that I endorse at the end of this post)
Your local hospital can give you names of local support groups. Mine had it's own little "Pink" store with donated wigs, hats, scarves, mastectomy aids and such that patients could shop for free. But they depend on donations.
Work with your neighbors and kids to make gift baskets for cancer patients and donate them to a local oncology department to give to patients in treatment. Not sure what to put in them? Soft blankets, socks, aquaphor, hard candy, gift cards, chapstick, gas money, coconut water, rice packs, cold packs, funny card, playing cards. But don't make it pink. Make it happy so it can be given to ALL cancer patients.
Donate money to a local photographer so a family can have pictures taken. My trainer gave me this gift the week I was diagnosed. We thought they were my last family pics. They are one of my most precious possessions.
Just stay away from buying into the pink ribbon. Take care of cancer patients of ALL types that are in your own backyard. We need a cure for ALL cancers.  Not just breast cancer. That is where you can make a difference.

AND SHARE SHARE SHARE THIS MESSAGE. LET'S GET THE HELP WHERE IT IS MOST BENEFICIAL!


Breast Cancer Organizations I endorse:
Lifting Hearts Breast Cancer Support Group (Utah only)
http://lifting-hearts.com/
This group was organized to provide mentoring, monthly support meetings, breast cancer retreats, service opportunities, and family activities, all aimed at sharing support, wisdom, laughter and hope.
The Jill Lamb Foundation
http://www.jilllambfoundation.org/home
We assist families currently in treatment for breast cancer who need a hand dealing with everyday things.
Services around the house
Transportation
Grocery shopping
And more

The Rex and Tiffany Redden Foundation

http://www.thereddenfoundation.org/

Assists women in getting mammograms that otherwise cannot afford them and other services.  Funds are earmarked for local areas. 

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Love and Cancer: Omaha! And other bad calls

Starting a relationship during cancer.  Don't do it.  The end.

I wish I had taken my own advice.

I had sort of started to date when I separated from my husband.  Hey don't judge! The divorce was dragging on and on and I wanted to get on with life.  I was newly blond and feeling cute again. Nothing crazy.  I was just meeting people and dating a bit on my no kids weekends.

Then the diagnosis came in November.  And something bizare shifted in the dating universe.  I was beating them off with a stick.  It was like breast cancer was some kind of magnet for men.  I think it appealed to the rescuer in their male ego.  No clue.  But I was overwhelmed.  I had men from Facebook, old high school classmates, friends of friends, and even just going shopping I would get asked out by strangers.

I started to think "Does this mean I'm going to die?  Is he universe sending me someone to see me through all of this?"  It was unsettling.

Some pursued stronger than others.  And somewhere in the mix of it a relationship started.  A long distance relationship.  And at first it was great.  I was getting flowers and calls and texts.  I felt supported.  I felt like a woman instead of just a cancer patient.  But then the visits started and SEEING what I was going through vs just hearing about it became an issue. I should have known it wasn't going to end well when he wouldn't take a couple of days off to come care for me when I had my mastectomy. I was made to feel ashamed for the way my body looked and especially my scars.  I remember a conversation and the statement :

"Your body is gross.  No man wants a woman with all of the scars you have.  And why is chemo making you fat?  I thought cancer made you skinny.  Even your head is swollen. How much longer until you don't look sick and disgusting anymore?  When are you going to look like you used to look?"

I was horrified.  I was ashamed.  I also felt panic.  What if I never looked normal again? He was right.  He is the only would ever love me but I better get normal as fast as I could before he leaves. And so I hung on too tight.  I begged him to stay.  In the course of that he got very jealous and possessive.  If I didn't talk to him every night at the same time I was in trouble.  Even if I was too sick or taking care of kids.  He was convinced I was having an affair with my trainer, my plastic surgeon and a couple of my close guy friends.  He demanded I cut off my relationship with them.  He monitored what I posted in FB and if he didn't like it he would text me and tell me to take it down. And I did.  I did everything he wanted.  After all, no one else would want me. Even he was ashamed of me.  We rarely went out in public when we visited each other.  And I have one picture of us together.  One. On top of that I was paying for everything.  I was an uninsured single Mom with breast cancer and I was flitting the bill for EVERYTHING including airline tickets.  Yeah, I blame it on chemo brain.

The best thing that ever happened to me was when a family member saw him in his state with another woman and we ended things.  I was devastated.  And completely and totally relieved.   But I was damaged.  Sick and damaged.

I swore off dating.  I knew I would be single forever because of cancer. I focused on my treatments and surgeries and especially my kids.  They were struggling.  At first they were sad we broke up but then Keegan was laying on the bathroom floor with me one night and he said "Mom, I'm glad he's gone.  He made you cry more than cancer."  And he was right.

It was a great summer.  We did a lot of fun stuff.  But I was feeling ashamed of my body and cancer.  I would take my kids to the pool, but sit in the shade fully clothed.  I didn't want anyone to see me.  I wore a hat.  I didn't want to embarrass my kids.

I had my first couple of reconstructions and the haze of depression started to lift.  I started feeling better about how I looked.  I was putting out really good energy and it was making all the difference.

I was caught off guard when I met a local guy.  He didn't seem phased by my short hair and my diagnosis.  He was very kind and loving.  He treated me with respect.  He even had kids near the same age as my kids.  And another relationship was born.  We started dating the end of October and I was very very cautious.  I was so worried he would leave if he ever saw my chest.

Just a couple of weeks after we started dating I had another surgery.  The nipple one that didn't take and I had to do the hyperbaric chamber for a month.  He wasn't phased.  He did grow tired of our time together always being laying around watching movies but he understood I was very ill and told me he was just happy to be with me.  It was such a nice change.

Then December came and Deana died.  Even after spending Christmas together with our kids, I could not cope with Deana's death.  I spiraled into depression again.  And I fought it for months.  I shut him out.  I shut everyone except my kids out.  He didn't have a chance.  He tried though.  And he never quit on me.  But by summer I was rarely giving him any time.  I look back now and I know I was completely terrified of anyone else leaving my life, so I just ended it first.  My terms.  I know I hurt him deeply.  I learned a tremendous amount from that relationship and we are still friends.

Through it all I had one guy friend that kept me sane.  Kept my believing not all men sucked.  Not all men are scared of cancer and scars.  He was my rock.  And has been for 20 years.  But in the end cancer took him away from me too.  I hear updates about him and I know he is happy. His life is better since he chose to move on.  I miss him everyday.

Cancer takes and takes and takes.  It gives too.  It gives you fear and doubt.  It makes you question everything about life and yourself.  And it also gives blessings.

I remember standing completely naked in front of a full length mirror one night.  I had not a hair on my body from head to toe.  No breasts.  Drains hanging out.  Dressings from my recent hysterectomy I looked awful from months of chemo and now seizures.  My lips were cracked.  My eyes sunken in. My nails were chewed and unpolished. I could see my port. I didn't even look human let alone like woman.

I just stared.

What am I? Everything that made me a woman was gone.  WAS I still a woman?

I stared.  I touched my scars.  And then I had moment.  An awakening.

I realized what made me a woman was NOT my long hair.  My breasts.  My uterus. None of these things. What makes me a woman is what is inside.  My heart.  My soul.  My spirit.  How I love. What I contribute.

And then I just let it all go.  I said goodbye.  Goodbye to what I used to be.  Goodbye to all that I lost. Goodbye to cancer. It was a moment of rebirth.  I came into this world naked and crying.  I was reborn again that night, naked and crying.  Both moments were pure joy.

Since that day I know who I am.  I know what matters.  My body, with scars, stretch marks, squish, aches and pains is pretty damn fucking amazing because of what dwells within that body.  And the only person that I really need to truly honor that.....is me.

It was HAIRiffic!

My hair has been through a lot the last few year.  And some days it is still what makes me the most sad. Maybe because it such an outward visual scar everyone can see.  Especially for a woman.

When I first left my marriage at the beginning of 2010 I had long brown hair that is naturally curly.  Sometimes I made it straight. But it was very thick and long. 

 I decided to go blond for my 40th birthday in 2011.  I felt feminine and sexy for the first time in over a decade.  

This is how I looked for family pictures the week I was diagnosed in November 2011.

After I told my kids I had breast cancer my son approached me later.  Here is our conversation:

Him: Mom you gotta be tough to beat cancer don't you?

Me: REALLY tough.  Why?

Him: You don't look very tough.  

Me: Thanks.  I'm not feeling so tough either. 

Him:  You know at karate class how you teach students to spar and score points?

Me: Yeah....

Him:  And you tell them to get the first point so they feel strong?

Me: Yeah....

Him:  You need to score the first point!

Me:  What did you have in mind?

Him:  MOHAWKS!

And so we did it.  And Chemohawks were born. 

Soon after the chemohawks my hair fell out.  It looked like a troll doll had been murdered in my house.  And just in time for Christmas, I was bald.

This  picture was rough.  By now my eyelashes, eyebrows and every hair on my body was gone.  Damn it is painful when  your lashes fall out.  I mean it REALLY hurt!

About 9 months later I started getting hair again. It was baby fine. And I bleached it so I could get my Annie Lennox on!  Hey, gotta make cancer fun.  At least a little.

I rocked this blonde chemohawk for a couple of years.  I actually  became kind of known for it.  I felt fierce and sexy.

And hello?  When else can you vamp it up at the age of 40+?  I miss my blonde hawk.

So I still rock a hawk but now it's Red.  Dark red. I don't feel as fierce but it is definitely a new norm.  Hard to say what is next in my HAIRiffic journey.  

To nip or not to nip? That IS the question.

What if you got to pick out whatever nipples you wanted?  Sounds awesome right?  Well in some ways it is.  But it is also totally overwhelming.  I mean, you're born the way you're born.  There's a balance to your  body.  I never really thought about what my nipples looked like until I didn't have any.  Now I'm supposed to pick?  Weird.
So I started looking at nipples.  In magazines.  Online. I even asked a few of my friends to show me theirs and let me take a picture.  Talk about awkward.  I live in UTAH!

I had pictures of my old nipples.

Okay, read that again.  Who says that?  bwahahahaha

Anyway, I was totally perplexed and so I decided to leave it in the hands of a professional.  My plastic surgeon is amazeballs, hot and male.  I told him "Make me rock star nips!"  And turned him loose!

Into surgery I go.  Again.  Have you kept count?

 First he measured many angles of my chest and then drew on where the nipple should be placed.

He had me stand, lay down and move all over to decide where to put them.  Here I am on the table again.  Oh yeah, and the 2nd fat grafting this surgery too.  Ugh. 

I know you are asking what the heck is he going to make a nipple out of?  ME of course!  He starts by cutting a strip of tissue out by using the scar line of the mastectomy on the non radiated side.  Might as well right?

Yup,that's going to be my nipples.  

Then he fold and wraps.  Hard to explain.  He had to draw it out for me.  But I was pretty dang impressed. 

 and some more fat grafting to fill them out.  My abdomen really hates this procedure.  I have to bind up  my abdomen for weeks to prevent clots.  

And then they sent me home.  Same day surgery.  Nipples!  Bazinga!  I felt pretty cool. They don't have feeling.  It's purely for aesthetics.  Next stop.....areolas.

Or so I thought.  My body got pissy again. It would not accept the tissue.  And in a matter of days the nipples started to die and turn black.  We tried a procedure where I stuck a huge needle in several times a day to drain any blood to see if that would release the pressure.  

But it didn't help.  This is what was happening....

 The purple is a kind of veinous congestion.  This is bad since it means the new tissue was not receiving blood flow. 

 Fortunately it didn't hurt

 But it was very frustrating to think I would need another surgery so quickly. 

 The yellowing is from the fat grafting that was also done during the nipple surgery. 

But even with the dying nipples and no areola they were starting to look like a nice pair of breasts and fairly balanced. 

Nothing was working and we didn't feel like I should head back into surgery so soon.  So my surgeon is also a wound care surgeon.  He sent me directly to the hospital to have hyperbaric treatment. 

In the treatment you enter the hyperbaric chamber.  You cannot wear any metal and no phones or iPods.  It does have a video feed so we watched LOTS of movies. 

In the chamber it becomes pressurized.  This is called a "dive" because it is the same pressure as scuba diving.  

 In the chamber you sit in one of these chairs.  One of the patients I did dives with was laying on a gurney. But I sat.  Once you are seated they get everyone ready for the dive.  As the pressure increases you have to drink and swallow and pop your jaw to keep your ear drums from rupturing.  I had one time my ear drum almost ruptured and they had to stop the dive and get me out.  Once you are at the appropriate pressue they place this oxygen hood on you.

The hood pumps 100% oxygen into you while you are in the pressurized cabin.  

1. Hyperbaric oxygen therapy saturates the patient's circulatory system with oxygen resulting in increased oxygen delivery to tissues. Specifically, hyperbaric oxygen therapy: Dissolves increased amounts of oxygen in to the blood plasma.
2. We had hoped this would reverse the dying tissue and save the nipples.  My treatment was every day for two  hours in the morning and two hours in the afternoon.  I felt like a zombie.  The worst part is I had to start all of the this the week of Thanksgiving.  The previous year I was newly diagnosed and dying for the holidays.  My kids were really excited to have a Mom that wasn't sick this year.  I could see how disappointed they were to see me so sick again.  But we made the best of it.  I finished just at Christmas. 
3. It mostly worked.  They definitely got quite a bit smaller but at least something was left.
   

   

   
   

   

   
   

   

   
   

   

   
   

   

   
   

   

   
   

   

   
   

   

   
   

   
4. I need a break.  I took a couple months off from surgeries and procedures. I needed to breathe.  Deana had died and I needed to healthy enough to fly to her funeral.  And honestly I hit a space of serious depression.  I was tired of being sick.  I was devastated at Deanna's passing. I just needed to find a new normal and it wasn't coming easily.  As a matter of fact for the first 7 months of 2013 it wasn't coming at all.  But I pushed through. It's what I do. 

Upcoming Blogs: Chemo and also the final finished girls.