These are the days I want to forget. 

The days are so long. I’m in the stage of my postoperative period where I’m no longer an inpatient but I’m not able to function normally. It’s maddening. 

I’m still on TPN (IV nutrition) as I cannot tolerate eating by mouth. I have one abdominal drain remaining. I’ve had appointments every week since returning home and sometimes I’ve felt like I’m spinning my wheels and getting nowhere but then I realize that I can now walk about 3 blocks a day. I can cook my husband wildly elaborate meals. I can independently do all of my medical cares. I only have one drain and not five! I need to focus on these wins. 

I need to be patient. I need to remain hopeful that healing WILL come. 

As far as an update, there have been a lot of opinions from a lot of doctors. While an inpatient the clear and consistent message was that the plan was surgery, HIPEC (intra-operative chemo), 8-10 rounds of outpatient chemo, and then immunotherapy. Unfortunately at this time the consensus between my doctors is that I’m just not strong enough for chemo. I would have to be hospitalized and even then it would be risky. What does this mean?  Well one doctor put it this way “You can now have a break from thinking about all of this” (#%*<&/!!!) The fact that my type of cancer is resistant to chemo and came back even though I had 12 months of immunotherapy means that they just don’t know what to do with me. Not very reassuring but I trust my oncologist. So now I go back for what we’re calling aggressive surveillance (i.e. really frequent scans) and waiting for the cancer to rear its ugly annoying unwanted head again. Then we treat it. When I’m stronger and when my spirit is ready to fight. 

It’s been especially hard to hear that this battle is not over. I’ve been struggling with remaining positive and hopeful. I told Andrew during Cancer 1.0 that “I’m not resilient!” and I stand by that statement. The good thing is that I have people surrounding me that have hope and strength in spades. While I wallow, they make plans for me to have an amazing summer. While I feel exhausted they give me a reason to just keep swimming, just keep swimming.  

Thank you again to everyone supporting Andrew and myself. It means so much to have your support. And thank you all for the birthday good tidings.  Andrew, his daughter, and her partner took me to taste my favorite meal of all time and some Keys Cafe HoHo cake!  Heavenly!