A New Normal and the Butterfly Flies- April 4, 2024

I knew I was a little behind in sharing an update but to realize it's been 61 weeks since my surgery is mind boggling.  It seems like both yesterday and a lifetime ago at the same time.  I've been surprisingly busy since my last post which is why I didn't update at my 1 year surgeryversary and a hint at how things have been going.  

I've continued to heal and am no longer in pain. My new plumbing system, even after all this time, is still making adjustments and can act up on a whim.  I rely on a lot of medicine and also need prescription strength vitamins to compensate for the parts of my intestines that were removed. Who knew certain sections are responsible for specific vitamin and nutrient absorption? While I now have much more freedom with my diet, I still need to be very intentional about what I eat. Thankfully, I have no physical restrictions and am able to exercise, including horseback riding. Considering where I was a year ago, all of this feels nothing short of miraculous.

I’ve been on several travel adventures, which involved a lot of careful planning and some anxiety, but all very worthwhile. In October, I flew to my Appendix Cancer Support group's annual conference in Milwaukee. It was amazing to see and hug my other unicorn besties from the PMP Pals organization. (PMP is the resulting disease from a ruptured cancerous appendix).  After more than a year of  twice a week meetings on Zoom, to be able to see and hug these soulmates in person was just incredible. This inspiring group of warriors gave me the courage to have the surgery for which I am eternally grateful. I am very passionate about supporting this vitally important organization and am now a co-chair of this year’s conference. 

November 8th marked my 1 year diagnosisversary.  I celebrated the occasion in a bikini, in Kauai, toasting with a mai tai (it was too hot for bourbon).  See pics above. That was not sprite in the bottle, and yes, I was illegally defying the sign.  It was a magical trip and a perfect way to commemorate a year since my life altering diagnosis. Except I still wasn't completely free to engage in vacation style sport eating. The trip was interrupted when we received devastating news and returned home early.

Somehow, having gone through this hellish year, I feel like everyone in my orbit should have earned a pass from any more anguish. However, life apparently doesn’t work like that. The close friend I referenced in my last post, (who rescued me when I couldn’t go to Joshua’s college graduation), passed away unexpectedly while we were in Kauai. I have no words for the pain of that loss.

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In December I accomplished a dream 47 years in the making.  I had my Bat Mitzvah! You read that right- better late than never. I participated in an adult B’Nai Mitzvah program at Beth Chaim. It was an absolutely amazing journey and made more special to have shared it with 7 other incredible women. Our year long study began right after my surgery. At the time, I was still bedridden and couldn’t even focus enough to read.  I’ve attached a short video excerpt of the service where I describe how I navigated through the mental and physical challenges of my recovery. As an added bonus, the video shows off my drag queen wig.

Last month, I went to the East Coast for my cousin’s Bar Mitzvah and I loved every minute celebrating with my extended family.  While there, I went to the immersive butterfly exhibit at the Smithsonian in Washington DC. It was a very ethereal experience to have hundreds of my beautiful winged spirit animals flying around me. 

Back in December, I had more scans and am thankfully still NED - no evidence of disease. My next scans are in May.  I mention this because it’s why I will never again be back to my old “normal".  My old normal was blissfully free of the suffocating fear that a stage 4 cancer diagnosis brings.  While I might look more or less like a civilian again,  underneath, my new normal includes the aftermath of my treatment and threat of recurrence. It's like a faint voice that's always reminding me how tenuous my life is.  I’m not sure how long it will take to quiet down and fade into the background. With the amount of management my daily life requires, I still feel fragile.  Despite that, I’m so very thankful to now enjoy relative health and the freedom to do anything I want. I don’t take that for granted - not for a single day.

The last 17 months have been the most challenging of my life but also have come with a wonderful consolation prize- the incredible people I’ve met along the way. People who’ve helped me and those whom I’ve helped. If not for this incredibly rare and miserable disease and treatment, I never, ever would have crossed paths with these new precious friends who reside all around the world.

Time with family and friends is my incentive to ignore that whispering voice and to keep flying. 

Thank you all for being part of my story. 

Love,

Roberta