Scars

Hi Friends,

It’s been awhile! The last time I wrote to you, I was just coming off my ileostomy reversal surgery. I was so grateful to be alive and cancer-free. Marching out of the hospital in my Uggs and Christmas pajamas that December day, I was expecting to “ride off into the metaphorical sunset” to my old, typical life.

But I wasn’t as fully prepared for what was about hit me emotionally or physically in the weeks that followed. Having had an ileostomy for a couple of months many of my pelvic muscles were weak and out of practice. This is not to mention that the piece of colon pulled down to make a “rectum” after mine was removed, didn’t really “know how to be a rectum”. I was a 39-year-old woman wearing adult diapers and having to visit the restroom OFTEN (in the beginning it was not uncommon to make 30-40 trips to the bathroom in one day). This condition is called LARS (Lower Anterior Resection Syndrome). I was told by my surgeon that for some people this is something that resolves itself in a matter of months or a couple of years, and for others it never gets better and they resort to a permanent colostomy. I thought I may never eat a raw fruit or vegetable again. Luckily for me, I was able to find a regimen of Metamucil, Bentyl, and pelvic floor PT that has made a dramatic improvement. Things aren’t perfect, but I have much better bowel control and can live/eat pretty normally.

Worse than the physical ailments, however, are the emotional ones cancer has left behind. After being out of chemo treatment for some time, I was no longer actively fighting cancer with powerful drugs like chemo. I felt extremely anxious about cancer returning. I found myself obsessing over the food I was putting in my mouth, the supplements I was taking, etc. Going into my first post-surgery scan, I practically came unglued. The gravity of what I had been through was coming down heavily on me. And I was also feeling tremendous survivor’s guilt knowing that other patients I had met during my treatment were still fighting very hard battles with more grim prognoses.

I have been able to breathe a little easier now that I have had two CT scans and two blood tests looking for residual cancer in my blood which have all come back 100% clear. Emotionally, I have good days and bad days. Some days there are triggers… The smell of the IV tubing when I have to visit the Cancer Center for a blood draw or oncology appointment, the death of Chadwick Boseman, catching a glance at the fanny pack that I used to hold my chemo unit, seeing a picture of myself taken right before I was diagnosed (and wanting to scream through the photo, “YOU HAVE CANCER!!!”)… It’s a journey, and it probably won’t be one that always has an upward trajectory.

But there are victories to be sure. The clear scans. Advocating for myself to utilize a new ctDNA blood test as part of my ongoing surveillance (and hearing that my oncologist is now using it in his treatment of other cancer patients). Adding most fruits and vegetables back into my diet. Getting back to an active lifestyle. Connecting with other cancer patients and survivors on Colontown (an online support group). Being there for Luke to start Kindergarten. And most recently, to get my port removed.

I am not without scars… some of which are visible and some of which are not. Since December I have been on an impossible quest to find the “old me”. Until recently, it didn’t dawn on me that I would never find her. She’s gone. Some things at the core will never change, but I must find a way to live with the heaviness I was dealt. To make sense of it. To make meaning of it. To make the suffering count. To not take things for granted. I am surer today of who I am and what I am capable of, while at the same time more vulnerable. I am healthier. I am stronger. I am learning how to best use my voice. My faith is deeper, albeit more complex. I am grateful to be alive. I am exploring the new me.

XO – Mary