Journey with a tattoo

Well guys…I did it!! And I will admit to feeling extremely excited and damn proud of myself. 🙂 I’ve decided to make the finished product public to maybe inspire other women to take this particular healing route. I needed stories of brave women before me to help my decision and am proud to do what I can in return. But I have been on quite a roller coaster.

Finished scar cover tattoo

Finished scar cover tattoo

I shared this post last Wed about my decision to cover my mastectomy scar with a tattoo rather than pursue reconstruction. I just re read it and laughed at how confident and determined my words were. They sounded a lot more put together than I felt. In reality I was fighting an active battle against fears that were slowly chipping away at my resolve. I was leaving for Antwerp Thursday morning with my tattoo appointment at 1 pm on Friday afternoon. And…

I did not have a design I was happy with. Not even close. I had gone through a few iterations with my artist…her making a design…me providing feedback and suggestions for how to improve…her making another design…me providing feedback…repeat. The latest design I received on Wednesday REALLY wasn’t it. I just didn’t love it the way I needed to in order to go through with the tattoo. And I had no clue how to fix it.

My heart caught in my throat and I had a moment of panic. What was I doing? Was I pushing too hard? Maybe it isn’t the right moment to move forward with this tattoo. I like the idea but it is a big/PERMANENT decision. Maybe I need more time? Aack…I’m not ready. There is NO WAY I can do this in 36 hours.

Time was evaporating quickly. My plan was to be on the 10 am train. Was this all a big mistake? I had been thinking about this tattoo and planning it for so long…backing out would be extremely disappointing but maybe in a small way it would be relieving…then I wouldn’t have to risk anything. Not having a design would be a good excuse and I could stay safe. I could stay in the known without venturing out into this uncharted (potentially VERY painful) territory. I would never know how tough I could be but I also wouldn’t face the possibility of stopping part way because I couldn’t take it. Maybe I really wasn’t as tough as I thought I was? My mind was spinning.

OK. Stop. Deep breath. Deep breath again. And again.

What do I know?

I know that by the grace of God I have survived an immensely painful season in my life. Doors have opened for this tattoo, with this specific artist, on this specific day in a way that felt divinely orchestrated. So, if God is in this…I need to trust that it will all come together. And just like the emotional pain, by His grace, I could handle the physical pain.

So I packed for Antwerp…and prepared to meet my friend and catch the train in the morning. I TRUSTED. Even though I couldn’t see how all the pieces would come together…I had faith they would. And I guess, for me, that’s what practical faith is. It’s getting on the train and starting the journey. Believing things will work out even when I had no idea how.

Well…you can see by the finished photo that I eventually reached a design I was happy with. I had a little craft time on the train. 🙂 I brought printouts of the last design I liked (from Tuesday), scissors, glue, my sketch book and pencils. I was prepared to make VERY good use of the 4 hours between Groningen and Antwerp. By the time I got to Amersfoort (2 hours) I had a design I LOVED and would ultimately get. Thank you Jesus!

OK…first hurdle overcome. Next hurdle…convincing myself and my tattoo artist I can actually handle the pain of the process. Gulp.

I know how I looked when I first strolled into Original Sin’s shop for my consultation. I don’t have any tattoos and I had never even been in a tattoo shop before. I don’t know

Tattoo space

Tattoo space

what I was expecting. Yoga studio? Massage parlor? Zen atmosphere. Don’t know. But I’m sure my eyes were wide as I took it all in and tried to play it cool and pretend that my mind wasn’t screaming “What am I doing here?”. It was a bit of a beautiful creative chaos. The space is a big open room with a waiting area immediately when you walk in. Two work desks split the room in the middle and separate the tattooing space from the reception. Designs and drawings were everywhere. Piles on the desk. Pinned to the walls. Taped to mirrors. True to the Original Sin name most of the decor revolved around religious icons. Multiple Jesus statues and pictures on the wall. My artist, Vicky, greets me. She has awesome dread locks with gauged ears, piercings and (obviously) A LOT of tattoos. Her partner was this tough looking guy with a shaved head, spiked collar and a dark black face tattoo that runs down the bridge of his nose and onto his cheek. Again “What am I doing here?” This is so far outside my comfort zone.

But I summon my courage and start to talk to Vicky about my design. She was open to working with me but was managing my expectations from the very beginning. “You’ve never had a tattoo before. You are asking for a big one in a very painful area. I anticipate it taking around 5 hours and we will probably need to take this in stages.” I had absolutely no idea what it would be like. I just said “we’ll see” and booked my appointment.

When I arrived last Friday she was again trying to split up the design. I’m sure she gets naive first timers all the time who come in and ask for something they think they can handle and then fall apart. I was scared but I was also determined. Her suggestion “Maybe we just do the top now and save the trunk for later”. My response “I would like to get it all done today, if possible. I have no idea what I can handle. I’ve been through pain and like to think I’m pretty tough and I’m definitely very determined…I think I can do it.” She’s still not completely convinced but I think she could see my focus…so she gave in.

She printed out the transfer and placed it on my body. Alright…moment of truth. I laid down on the table and she started with the lower part of the trunk on my ribs. It was like an intense, burning, vibration. It hurt A LOT…but not unbearable. I took a deep breath, said a prayer – Jesus you need to do this – and settled in for the next 4 hours. After 5 minutes Vicky looked at me and said “You didn’t flinch or jump when the machine touched your skin. OK I believe you…you’re tough…you can handle pain…you’ll be fine…we will finish this today” And, by God’s grace, we did 🙂

I walked out of there a little sore…but EXTREMELY proud of myself. I’m so glad I didn’t let the fears keep me from this awesome experience. I love this piece and it means so much more knowing everything I overcame to get it. I’m not going to lie…I feel pretty BAD ASS now.

Well good for you if you made it this far. Sorry it’s so long…there was just a lot to the story. 🙂

Blessings,

Lynnea

Redeeming Scars

Tattoo double mastectomy

News Article: Pink Ink – Tattoos transform mastectomy scars into beauty. Photo credit: Tina Bafaro

Cancer changes you. Physically. Emotionally. It leaves permanent scars. Every woman who faces breast cancer follows a unique path on how to heal from it. I am going to write about MY path. I am not judging anyone else’s choices…but explaining why this was the best route for ME. I also know it’s a bit unconventional and want to share my process. Maybe my words can help someone else make their own personal decision. I couldn’t find much information online for women like me. (P.Ink was the most helpful) Women who don’t want to do reconstruction but also don’t want to leave their scars the way they are. Women who are looking for something a bit different and to create something NEW.

Well…information or not…I am scheduled on Friday for my first tattoo…to use my scar as a canvas for a piece of art.

I am excited. I am nervous. I’ve cleared it with all my doctors. I am ready. Here’s how I got here:

First let me start with…why reconstruction wasn’t for me.

When cancer is discovered and a mastectomy is the recommended treatment most often that breast (or breasts) are fully removed. In Dutch it is called a “Borstamputatie”…literally translated a Breast Amputation. Harsh but true. Typically, a woman is left with a blank space and scar where the breast used to be…so when she begins to think about moving forward a new breast truly is RECONSTRUCTION. There is nothing there. It is not “enhancement”. They need to build a completely new breast and it often involves multiple surgeries with many months of pain.

There are various ways to go about reconstruction and I will just briefly describe the one recommended to me so you get an idea. They suggested a silicone form for the breast…but you can’t just go straight from nothing to silicone…first they need to create a space for it. And that involves Tissue Expanders. Imagine a tire jack slowly lifting a car to create space underneath to change the tire. Tissue expanders work in a similar way. They are periodically filled with a saline solution to increase the volume and create more space for the implant. Women I know have described this feeling as having a rock in their chest they can’t remove and it can be very painful. Since I had radiation, there is a good chance my skin/tissue is so damaged that I couldn’t keep the tissue expander in place and there would be complications. They solve this by taking a thin muscle from my back (Latissimus Dorsi) and wrap it around the front to increase the strength of the area. Then they fill the expander over the course of 6-8 months (or longer) until I’m ready for my exchange surgery where they remove the expander and place the implant. There is always a chance for complications…and the recovery can take some time.

Many women choose the reconstruction route. The trauma of losing something so tied to what it means to be a “woman” is overwhelming.  It can affect self-esteem and confidence. Reconstruction can be healing and a way to reclaim something cancer took. There are many many reasons to choose reconstruction. Again, there is no judgment from me…more power to ya. Go for it!

However for ME…reconstruction is completely unappealing. My journey with cancer was literal as well as metaphorical. I had cancer in my body. I had cancer in my spirit. I had cancer in my marriage. I had no idea. But once it was revealed I have spent the last 2 years carving it out…blasting it with chemo…burning it with radiation…removing it from my life. God has gone to work on my heart and soul and I am a completely different person than I was before I started. I never had the level of grief some women face after a mastectomy. I adjusted quite quickly…probably because with my body type I can hide it well. If you didn’t already know you can’t tell. My entire wardrobe is still available and in general I feel normal. This definitely makes it easier. I also considered the physical recovery and how much I enjoy running and being active. It would be difficult to scale back on those activities and to have a high risk of decreased movement/increased pain in my left arm. I thought through all these things but the biggest reason:

I don’t want to replace what has been removed with something fake…I want to replace it with something NEW…something beautiful.

I believe in a God who will create beauty from ashes…that is moving mountains…that continues to give me HOPE even when I can’t see the path or the end. A God that is writing a redemption story in my life much bigger than this tattoo. I don’t want to go backwards. I am moving into a new future. Pushing into uncharted territory. And for me that journey involves covering my scar with a tattoo.

I can’t see very far down the road but I can see Friday. And this Friday is a VERY big day. I started the design back in March and had a good idea of the direction I wanted to take it. It is a tree (of course) and I’ve attached a couple of my inspiration pieces. I knew I needed to find a very good artist to execute my vision and saw a piece in a magazine from Vicky at Original Sin in Antwerp.  Somehow I knew immediately that she was the right person. (Side Note: I love that this redemption tattoo is being done by a shop called “Original Sin” – I think God has a sense of humor :-)) So I booked the appointment for May 9th. I just looked back in my blogs to try and remember what I was doing on May 9th 2012…and I didn’t realize it when I scheduled it but on May 8th 2012 my life took a nose dive…and this day 2 years ago was very VERY dark. How AWESOME to have this appointment to not only redeem the scar but redeem the day.

So, wish me luck for Friday. Now that I’ve told you I can’t chicken out. It is quite a big piece (~5 hours) in a very sensitive area. I know it will hurt A LOT but I’m ready. I have approached this like everything else on this journey…with a deep breath (or 10) and straight in. This pain will be temporary and I will have a piece of art to last a lifetime. I might need to take it in a couple sessions but we will see how it goes. I’m not sure how brave I’ll be to post an after photo…I will decide when it’s done.

Eek…so excited.

Lynnea

If you are interested in more information on mastectomy tattoos check out the Personal Ink – P.Ink Pinterest page here.

Tree of life pen and ink – by Marcia Carole can be found here

Scanxiety

What, you don’t know what that is? I didn’t either…but I have it. “Scanxiety” is a word used (primarily in cancer circles) to describe the “uneasiness” or anxiety patients have around waiting for the results of diagnostic testing. Especially cancer patients. We already know how bad the results can be.

I have my first set of tests tomorrow since my world was flipped upside down a year ago. I fully expect them to come back normal but the fear is there…lurking…in the back of my mind. What if the chemo didn’t get it all? What if the Tamoxifen is not working and it comes back? What if it spreads? At this point there is nothing I can do except be vigilant in checking and attempt to let go of the things I can’t control. But with these tests you never really know until the results are in and even then it is a momentary reprieve from the unknown.

I am at least thankful I live in an age where testing like this is possible…and I look forward to an age when cancer has been cured. I’ll send out an update tomorrow after my appointment.

Blessings,

Lynnea

Pink Ribbons Inc.

I got some very sweet responses to my post yesterday about why I wont claim “Breast Cancer Survivor” for myself…thank you for that. 🙂 I wanted to follow up with a bit more awareness on the Pink Ribbon Culture that surrounds Breast Cancer and swallows the month of October. I am a member of the Zeta Tau Alpha Fraternity and have been around the Susan G Komen foundation and the “Pink Ribbon” for over a decade but I had NO idea what was actually happening. Here is the trailer for the documentary “Pink Ribbons Inc” that does an excellent job of outlining how corporations use my disease as a cause to promote their bottom line. I am not begrudging capitalism but breast cancer is epidemic…we need REAL research into causes and prevention. I know that if women really become aware of how the “research” money is being spent and if we get vocal enough things will change. (Note: If you’re reading this in an e-mail you’ll need to click over to the blog to watch the video)

We do not need more awareness. I don’t need the white house to become a pink house. I don’t need Estee Lauder to sell me some pink lipstick that actually contain carcinogens and then donate a penny to Komen. I would love a nuanced approach to Breast Cancer treatment rather than the current slash, poison and burn. We need to understand this thing!! SOOO much money has been raised with really not much to show for it.

  • 60% of funds raised and donated in North America are being put back into awareness campaigns. Currently only 5% of funds raised and donated in North America are being used towards prevention research. If you’re not AWARE of BC at this point, honestly, you’ve been on the moon…even there you may see the pink lights. 🙂
  • Only 20-30% of cancer occurs in women with “known” risk factors and only 5-10% of that is inherited. That’s at least 70% where we have NO CLUE where it comes from and only 5% of the research money going towards it. Tough to cure a disease when we know nothing about it.
  • In the 1940’s 1 in 22 women were diagnosed with BC, now it’s 1 in 8. That may be because of better screening but quite possibly we are polluting our bodies in a way that needs to be understood and stopped.
  • Susan G Komen died 30 years ago…and honestly her prognosis would not be much better now. How have we not made ANY progress in stage IV treatment in 3 decades with all the money raised?

There are a lot more statistics and the problem is one that is endemic of the big pharma system. This is not meant to be a disheartening message. 🙂 I know people love me and want to help me…honestly buying pink products doesn’t do that…it helps the companies. Signing up for prevention based research organizations like the Army of Women does.

I had debated whether to include the “real” face of breast cancer in this blog because it may be difficult for some people to look at…hell it’s difficult for me to live. But if you really want to see the reality…post surgery…post chemo…post radiation…pre healing/reconstruction click here. But be warned it’s not a pink ribbon. Things NEED to change.

Sorry for the heavy (but important) message on a Friday…have a good weekend. 🙂

Blessings,

Lynnea

Why I’m NOT a Breast Cancer Survivor

…and I’m OK with it so everyone else should be too. 🙂 Even now that I have completed all the treatments and have been released into the maintenance (Tamoxifen) stage I still don’t consider myself a Breast Cancer survivor. I do, however, consider myself a survivor of life.

What is a survivor? According to dictionary.com a survivor is someone who:

  1. A person or thing that survives (Ummm, really?! thanks for that)
  2. A person or thing that continues to function or prosper in spite of opposition, hardship, or setbacks. (OK…that one is better)

The world is immersed in “Pinktober” right now and we are being blasted with pink ribbons and breast cancer from all sides. I don’t like pink…I’ve written about that. I don’t have a problem with the ribbon per se, but I do have a problem with the “Pink Ribbon Culture”. In order for all those companies to sell their products the face of breast cancer needs to be hopeful and one of overcoming…so companies like to use words like warrior and survivor. Still, I don’t have a huge problem with it. My problem comes when we pick and choose the breast cancer patients we label “survivor”. 59,000 women in North America die from breast cancer every year…and they are all stage IV metastic patients. These patients get 1 day out of the entire “Breast Cancer” awareness month…1 DAY!! And yet they are the ones that desperately need the research and a break through cure. There is no maintenance phase for them. They are some of the strongest women I have met but often they will never be labeled a “survivor”.

I won a lottery no body wants to win…I got cancer. However, once you’ve won the big bad lottery I got a bit “lucky” on my pathology. I was stage IIb, hormone positive which is considered one of the most treatable. I am absolutely a survivor through this. Would I be less of a survivor if it had spread to my liver or bones? Surviving has everything to do with my attitude and nothing to do with my pathology or even whether I will actually “survive”. Why label me a survivor and not my breast cancer sisters with metastic stage IV? It makes it seem like they are somehow doing less than me…when in fact they are facing so much more.

Nope…I’m not a Breast Cancer survivor…I am a life survivor who happened to get breast cancer…and I am absolutely 100% OK with that.

Blessings

Lynnea

Dear c

I can’t take credit for this post…I borrowed stole it from a blogging friend over at Mainely Hopeful. It perfectly captures my feelings in this moment.

Dear c,

After a 7 month whirlwind of mammogram, ultrasounds, biopsies, surgeries, heart scan, bone scan, IVF, chemotherapy, radiation, uncertainty, fear and exhaustion I am cutting you loose.

Obviously this relationship was doomed to fail from the beginning.  I never even respected you enough to call you by your favorite title.. “the Big C”. You’re nothing but a little c to me.

I’m over you.  I’m not taking your calls. Oh sure, our mutual friends at the Cancer Center will want to get together periodically and reminisce about our relationship.  I’ll humor them. It’s the least I can do after how hard they fought to get me away from you. Eventually they will grow bored and our visits will be fewer and further between until you will be nothing but a footnote in my book of life.

So long, c. It’s not me, it’s you.

And with that the “heavy” cancer treatment chapter in my life is closed. Hallelujah. Please pass me a martini. 🙂

Blessings,

Lynnea