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

Embracing the change

Well hello there…I didn’t realize how long it had been since my last blog post until I looked at the history. Yikes 4 months sure seemed to fly by. This has been a season where I have been doing more internal processing and didn’t have much I wanted to post to the blog. In the past several months I have been in a season of transition…of letting go…of accepting my new reality and (attempting to) embrace the changes that have forced their way into my life for the last 2 years. It is not easy. Today is the 2 year anniversary of my cancer diagnosis. I have a difficult time even remembering what life was like before that. Everything feels different.

The other day someone I just met said to me “Don’t you just love your pixie cut?”. Outwardly I smile and say “Yes, it’s fun and SUPER easy to style”. Inwardly I cringe “If you only knew I didn’t choose this…this is a recovery hairstyle…when I could choose I picked something completely different…How can I love this? It was forced upon me…it is the consequence of the hazmat chemicals which were pumped through my body in the name of treatment.” Self pity. I’m not necessarily proud of that reaction but it’s honest. Why is it so easy for me to go there? To have a little pity party because I am reminded of something I lost due to cancer? I didn’t choose it. It just happened. Why am I reluctant to let go and admit that honestly…

Photo3I DO LOVE MY PIXIE CUT.

It’s fun and flattering and truthfully very easy to style. But somehow admitting that I like it is difficult. It is hard to acknowledge the things I have gained through this traumatic experience because it feels like I am saying cancer was a good thing. It wasn’t. Not even a little bit. BUT the experience has brought some good things into my life and I am realizing how much courage it takes to embrace the changes and make them a part of me. It means taking responsibility and moving forward. To not be stuck wallowing in everything I have lost but attempt to focus on the the things I have gained…and having peace in the present moment. To not judge my scars (physical and emotional) but see them as part of my story.

I am not the same person I was at the beginning of 2012. I like to think I am a better version of myself. I like my life…I am curious what it will look like in the next 2 years. But for now I’m going to rock my pixie cut.

Blessings,

Lynnea

 

1 year post chemo

Last year on August 15th, 2012 I took the last pill of my final chemo regimen. I. Was. Done. I was bald. I was exhausted. I was relieved. My heart was raw. I was ready for my

1 year post chemo mop...at least my hair keeps growing. :-)

1 year post chemo mop…at least my hair keeps growing. 🙂

body to heal. I wanted to move on to and through radiation as fast as possible and get on with finding my “new normal”. It is interesting to reflect back on what life was life last year and how much has changed. I am still searching for my “new normal”…I don’t know why I thought it would be so easy to find. It turns out to be very elusive. Shy. Skittish. I get glimpses and I keep trying to coax it out into my life so I can fully embrace it. The moment I feel like I am starting to establish a routine and rhythm something shifts..AGAIN.

Chemo shut down my hormone production and pushed me abruptly into menopause (read: NOT fun)…a state that continued for the last year with Tamoxifen. And honestly, I thought this would continue for the next 4 years I am taking this medication. I had resigned myself to the hotflashes and night sweats but was actually thankful to not have to deal with all the “other” normal lady stuff for a while. Apparently my body was getting tired of being chemically repressed and staged a coup. It has been a 1.5 month process of guerrilla warfare that has left me confused by symptoms and often in a lot of pain. You don’t over throw big pharma so easily. 🙂 But now that the dictator has been overthrown I feel like I have an unpredictable rebel government in it’s place. Only time will tell which one is better…but I don’t have a lot of choice in the matter. I’m just caught in the crossfire.

So, my normal has shifted…again. I’m getting better about just rolling with it.

Blessings,

Lynnea

Dealing with cancer as a fiercely independent introvert (Part 2)

I wrote this post about being an introvert with cancer over a year ago and realized that I never gave you a part 2. Maybe because I knew that I couldn’t fully write about my independent spirit until this week.

My parents will tell you that I was born independent. Even as a baby I didn’t want people to help me with things. I wanted to figure them out on my own. My mom tells a story about me playing with a toy that required finding the correct hole for different shaped blocks. Circle to circle. Square to square. She apparently tried to help me figure it out and I would turn my head and pretend that I wasn’t interested. But the moment I was left alone I was trying it on my own. (I hope my mom and dad knew they were in trouble at that point. 🙂 )

I operate this way in most areas of my life and cancer is no different. It is hard for me to let ask for helppeople help me. Often times it is even hard for me to know what I need. I am stubborn. I wont let cancer win. I wont let it take my life from me. But whether I want it to or not it has changed me. Some ways for the better: My faith has been fortified in the fire. I am more able to live in the moment and enjoy life. I don’t feel the need to control as much as I used to. I now have absolute confidence I can overcome everything. Some ways for the worse: I am afraid every bruise/pain in my body is the cancer coming back. My mind is still foggy from the chemo/Tamoxifen. It can be harder to relate to people.

I heard from many cancer patients that, often, the hardest season is after you have finished treatment. I am finding that to be true for me. During treatment my job is defined. I need to show up, tolerate the chemo/radiation and then let the side effects roll. It’s not pleasant but you don’t have to think too hard. After the heavy treatment is over I no longer have the security of doctors and nurses looking after me or daily/weekly check ups. I am left to figure out my “new normal” in life with no guide book. People I encounter ask me “Aren’t you glad the treatment is done?” or “Doesn’t it feel good to have cancer behind you?” without realizing that it will never be fully behind me and I am now in a more difficult phase than I was a year ago. You see…everyone thinks I’m moving on and moving forward but I’m still catching my breath and figuring out what “moving forward” even means. I am still taking medicine (maybe for the next 5 years) that affects my sleeping, attention, cognitive function and gives me wicked hot flashes. I am operating in my margins while trying to figure out what normal is.

I have been profoundly changed this year and it is difficult to just reintegrate back into life. I was a square block in a square hole…now I am a round block trying to fit back into a square hole. It doesn’t work. And after several months of trying to force myself back into the same role…becoming more exhausted and stressed out. I admitted that I need help figuring out where I fit and it was freeing to finally say that I can’t do it on my own. I need help and that’s OK.

Blessings,

Lynnea

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

Happy Cancer-versary

One year ago on Feb 16, 2012 a Dr. walked into his office and gave me (and Jonathan) the cancerversary devastating news of…you have breast cancer. This appointment started the roller coaster of surgery…IVF…chemotherapy and radiation that then consumed the next 8 months and transformed the rest of my life. I will never forget that moment. When the world stops and it feels like the bottom has fallen out of your hopes and dreams. I can’t believe it has been a  year and I can’t believe it has been only a year at the same time.

How do you mark an anniversary like this? With tears? Yes. With good friends gathered around you celebrating what you have overcome? Also yes. I knew this week and weekend would be difficult with Valentines Day and my cancer-versary so I decided to throw a dinner party and mark this milestone with good friends around me. I filled my home with people who love me and have absolutely surrounded and supported me this year. I truly don’t know where I would be without them and am humbled by the blessing this community has been in my life.

Full dinner table = Happy heart...Sorry Alejandro next time I'll get one with your eyes open. ;-)

Full dinner table = Happy heart…Sorry Alejandro next time I’ll get one with your eyes open. 😉

I chose to focus on things I had gained this year rather than everything I lost. Don’t get me wrong…I had my times of grieving and I still wish the C-word had never struck but THAT is something I can’t change. I CAN change how I choose to allow this to shape my life and recognize the depth of faith, strength, compassion and determination I have because of the trials this year. In the midst of everything I have a lot to be thankful for.

There were a lot of great moments but my favorite was when I brought out the dessert. I know that some BC patients can have a hard time with how our disease is trivialized by a pink ribbon and gimmicky/sexualized advertising campaigns. Most of the time I share those feelings but I decided to poke a little fun at Breast Cancer (I’ve earned it) and made “Boob cookies” for dessert. They were hilarious and delicious. And a great end to my cancer-versary.

It took a lot of energy (Maybe too much because I am now down with the flu 😦 ) But it was worth it. The perfect way to mark the anniversary that nobody wants but can provide a great opportunity for a party if you take it.

Blessings,

Lynnea