It’s been a long time since my last post – so long in fact that in the time I’ve been away, the world has flipped upside down and backwards and many of us are left shellshocked and struggling to find the ground beneath us. I’ve wanted to start writing again, but honestly I’ve felt like I’ve lost my compass and can’t find North. Some days my mind runs a mile a second , others it’s all too much to handle and I just have to read a book or stare out the window. I think most are feeling that way lately.
I decided the best way to start up again was to start where I intended to two months ago and that’s with what I’ve done with and to my body the last couple of months. Most in my inner circle know that on February 27 I had surgery. The original plan was to reverse the colostomy that was done last year when I was first diagnosed. The colostomy probably saved my life but I hated it, absolutely hated it. Walking around with a bag attached your body, collecting your waste is demoralizing, humiliating and quite frankly very inconvenient. After 20 rounds of chemo, I was ready to take a break from my bi-weekly visits to KU Med. I had one, amazingly blissful month off from any medical procedures and then on Valentines Day I received a surprising phone call from my oncologist that changed a lot. We had planned to not only reverse the colostomy but also remove the primary tumor in my colon, this was to be done laparoscopically. Dr. Al-Rajabi was calling to let me know that he had presented my case to the surgeons and they had agreed: my liver and lung tumors were now operable (something I was told was impossible a year ago). This changed everything about my surgery – how it would be done and how I would recover. I was told that rather than a laparoscopic procedure, I would now be “opened up” to gain access to all pertinent “parts”. I was prepared for a six or seven inch incision in my abdomen. That is not what I woke up with.
Coming out of surgery, my hand immediately went to the place my bag used to be – it was gone and a two and a half inch incision left in it’s place. Thank God! I had a fear for months and months that they would get in there and discover that they couldn’t reverse it. When I was tucked safely into my hospital room with David and my mom, I finally had the courage to take a peek under the gown at the other incision. I was introduced to my new mark and it was not six or seven inches, but easily twice that size running from just under my bra to the top of my pelvic bone. After seeing that new notch on my “cancer journey” belt, literally a battle scar, I was so glad I did what I did on February 19.
When I was 18 I spent a weekend in Lawrence with my friend Josh. He was living there and attending KU and I used the parent-free weekend to do the most rebellious thing I’d done to that date: I (gasp!!) got a tattoo. It was tiny and conspicuous and somewhat well planned out for a teenager placing a permanent marking on her body. I’ve never regretted that tattoo even though I wouldn’t get it again today. It’s a reminder of who I was and where I was in my life at that time. For years I wanted another but David is not a fan and I had promised myself that if I ever did it again, it would have to be incredibly symbolic and purposeful – not just “decorative”. I’ve come to believe the best tattoos are the ones that MEAN something to you – you should have to tell a story to explain why you chose that.
Two days after I was diagnosed I decided I was going to get another tattoo and I knew what I wanted. When I found out I was pregnant with Emily, I panicked. I don’t do well with unexpected news. The economy had just crashed a few months before in the fall of 2008 and I was constantly worried about keeping our business thriving. I didn’t know if we could afford another child, our home was small and I didn’t know how we’d fit anther human into it. To put it simply, I was afraid. In the past when I was overwhelmed, my dad would encourage me to take a drive. Whether it was with him or by myself, a drive with music and sunshine and a little change of scenery can do wonders. I left David and the kids back at home, climbed into the mini-van and took myself on a drive. As if by divine intervention, Bob Marley’s “Three Little Birds” came up on my playlist.
Don’t worry about a thing
‘Cause every little thing gonna be alright
Singing’ don’t worry about a thing
‘Cause every little thing gonna be alright
Rise up this mornin’
Smiled with the risin’ sun
Three little birds Pitch by my doorstep
Singin’ sweet songs
Of melodies pure and true Saying’, (this is my message to you)
The song immediately put me at ease and ever since, I’ve sung or hummed that song to myself whenever I feel overwhelmed or in pain. I’ve taken to calling my babies my three little birds because David and the kids are my guiding light, my calming voice and my anchor.
The tattoo artist (a wonderful man named Matthew who was referred to me by another friend, coincidentally named Josh) came up with this beautiful design. My three little birds and their amazing dad.
Why stop at one tattoo when you can get two? After discussing with Erin that I wanted to get the bird tattoo, she asked if she could get one too. She and I talked a lot about what she would want to get and why. She wanted a sun because when she was little I would sing “You Are My Sunshine” to her and her siblings. She’s not old enough yet to get hers, but I decided that I wanted the same design that she was going to eventually get and being off chemo at that time, this was my chance to do it. She came with me and we worked with Matthew to create a design we both liked and was unique.
My body has been out of my control for a whole year now. I’ve been poked and cut and medicated and scanned. My torso bears small and gigantic scars. My hair has fallen out, my skin has been destroyed with rashes and flaking and acne curtesy of strong chemo drugs. Placing these marks on my body that I chose is empowering. These symbols that remind me of my reasons for fighting, that remind me of my humanity and my identity are the marks I’m proud to show. The scars are the marks I’m proud to have survived.