the specifics of my health stuff.

Hello dear ones, 

 

I want to share a more detailed overview of my health situation for those who have been asking. Here goes…

 

On May 28th I went to my regularly scheduled pilates class where my beloved teacher (hey hey Campbell) had us do this circusy- acro- back bendy thing.  It was fine and great and kind of silly. Later that day I had a small cramp in my lower right abdomen.  I thought I had strained something during class.  No big deal.

 

This little cramp stuck around for another day or two and I decided to waltz myself into the ER because I also had one tiny wave of nausea that morning, and I knew the signs of appendicitis. After many hours in the ER waiting room, I came to learn that I indeed had appendicitis. The doctor also mentioned in an incredibly casual way, that he found a tumor on my appendix. He said it’s incredibly rare to find these tumors, that they’re almost never cancerous, and not to worry about it. Ok. All seems fine enough. 

 

I had an appendectomy, came home from the hospital the next day, and started to feel a little off. Two days later, I called in my dear hearts because I felt like absolute hell. I couldn’t get out of bed, I was nauseous, I couldn’t eat, and I knew something was deeply wrong. A gaggle of beloveds came over and it became clear that there was something larger happening.  A week later I dragged my achy breaky self to my post-op, feeling like a wet paper bag that’s holding on for dear life. I found out that the tumor had cancer.  The doc took one look at me in my deeply depleted state and sent me straight back to the ER for all kinds of tests. No one at the ER had ever heard of this type of cancer before, and one doctor said he thought I had liver cancer. 

 

This began my summer long journey of doctor’s appointments, bloodwork, MRI’s, colonoscopy’s, endoscopy’s, CT scans, etc. I had 7 doctor’s appointments in one week last month. Just fucking insane. 

 

I finally was diagnosed with what is called LAMN (pronounced Lamin) which stands for low-grade appendiceal mucinous neoplasm. In short, appendix cancer. This cancer is extremely rare, to the tune of one in a million. No doctors in Santa Fe know much about LAMN, and honestly, there’s only a handful of specialists in the country who know about it at all. 

 

I found one such of these specialists in San Diego, where my family also lives. His name is Dr. Jula Veerapong, and he is as delightful and amazing as his name suggests. He is brilliant, kind, and so deeply revered and respected by this little LAMN community that I am now a part of. I’ve been back and forth to San Diego a couple times, and two weeks ago I had a diagnostic laparoscopy surgery where Dr. V removed a little bit of my large intestine and looked around in my abdomen to see if the cancer had spread. Turns out it has spread to a few spots in my abdomen. It hasn’t spread too far, so that is the great news. 

 

Here’s the big one. On September 10th in San Diego, I am scheduled to have a major surgery that is called CRS/HIPEC. The cancer world absolutely loves their acronyms! The CRS part of the surgery, which stands for cytoreductive surgery, is where they burn, scrape, and remove all the cancer cells and mucin they can find. They also remove any organs that may have cancer on them. I know my ovaries and omentum (this is a layer of tissue that covers your abdominal organs) are on the short list to be removed, and Dr. V will decide if more needs to go once he’s in there.  

 

The HIPEC part of the surgery, which stands for Hyperthermic Intraperitoneal Chemotherapy, is a 90 minute heated chemotherapy wash. I most likely will not need chemo or radiation on an ongoing basis after this. 

 

Apparently, this is one of the most major and complicated surgeries out there. They call this surgery MOAS, which stands for Mother of all Surgeries.  Calling out the PR firm that named this one to rethink their decision.  Good lord.  They call it this because it is an intensely aggressive, meticulous, and long operation.  With a larger spread of this disease, the surgery can sometimes last up to 12 hours, and 2-3 weeks in the ICU. Since my case appears to be small, they are saying 5-6 hours in surgery and one week in the ICU.  So relatively speaking, I am very lucky. 

 

I’ve recovered really well from the diagnostic laparoscopy I had a couple weeks ago, and am feeling strong right now, although I do get fatigued easily.  My main focus these next three weeks until the MOAS, is to love on my son and to get myself as strong, healthy, and in a positive frame of mind as I can. 

 

I’ll be in San Diego for 2-3 weeks (I think) after my surgery before I can make it back home. Joaquin is staying in Santa Fe, and my amazing friend Paul is staying with him for the first week, my dearest brother-in-law Bill is staying with Joaquin for the second week, and the incredible Anna Jacobs is coming for week 3. This child will be so well loved and cared for, it absolutely puts my mind and heart at ease on so many levels. 

 

I am feeling really positive and good about my pathology, my medical team, my treatment plan, my decisions, my divorce, my community, and my path forward. I am confident I’m going to make it through this one with guts and glory, although some of my guts may have to make the ultimate sacrifice. 

 

Reoccurrence of this disease is common, so it will be a lifetime of monitoring. Again, I am hopeful that I will be ok, and in fact, come out a stronger and better person because of it all. 

 

The doctors in Santa Fe tried to convince me for months that I was fine, and that there was nothing at all wrong with me.  Had I not advocated for myself, this cancer would have continued to spread and grow.  Just a loving reminder to ya’ll that we know our bodies best, and to keep finding the support and answers that we need.  Holy hell, it pisses me off.

 

It’s a lot, and I’m sorry to have to share such news with you all.  During this time, I have been in deep reflection, prayer, and uncovering a new part of myself that is quite profound.  There have been huge lessons coming at me from all angles, and I’m immensely grateful to be open to them.

 

That’s all for now.  Let’s take a walk together if you’ve got the time and are around.

 

With love,

Sarah-Jane