I know I have been kind of quiet for a while. Often when I am struggling I withdraw and isolate myself, even though I know that is the opposite of what I should be doing. 

After my ileostomy reversal surgery on February 7th I had a number of complications. I was discharged from the hospital after five days but was promptly readmitted with an abscess and infection. I stayed for another nine days during which I developed a gastrointestinal fistula. So I had my reversal surgery to no longer have a bag yet still have to wear one for the drainage from my incision. It’s not just the mental part of still having a bag, but I’m also dealing with malnutrition from what I’m losing in the drainage coupled with my new digestive system designed by the Whipple.  I cannot put into words how frustrating this whole situation has been. I am still so grateful to be alive but I just want to be well and have the energy needed to do things with my family. 

I have an appointment with my surgeon on April 29. If it has not healed on its own by then we will have to discuss another surgery to go back in to repair the fistula. I’m asking for prayers that it will heal on its own because I’m not sure I can stand another surgery at this point. 

When I first received my cancer diagnosis and treatment plan I remember naïvely thinking “when chemo and the surgery are done I will be able to return to normal.” I now realize that the “normal” that I knew in early 2021 will not be something I will ever have again. I have worked with a therapist on grieving the life I had before and embracing whatever my “new normal” will be.  I will always have trouble with digestion and absorbing nutrients due to the changes in my body from the Whipple. I will have to take digestive enzymes for life. My stamina will probably never be the same. I still have neuropathy in my hands & feet. 

I would like to say that one day I can put all of this “behind me” but that will likely not be the case. There’s always the thought of a recurrence in the back of my mind. Especially when my screening scans come around every 3  months. Maybe as I heal and all of this becomes further in my past it will be less on my mind, but it will always be in there rattling around. So while my most recent scan in March showed NED (no evidence of disease) and I am so very grateful, I am learning to hold grief and gratefulness in my heart at the same time. I’ve learned I can have conflicting emotions without one canceling out the other. 

Many of you have reached out these last couple of months when I went radio silent. Thank you. I didn’t intend to disappear or even realize I was doing it. I guess I just didn’t feel like writing a post with my usual humor sprinkled throughout so I didn’t write anything at all. 

Love you guys. Thank you for your continued thoughts and prayers.