It has now been over six (6) years since my initial breast cancer diagnosis. And five (5) years living without a stomach. I've had five (5) life altering surgeries during this time. Could be the PTSD talking, but I can't help but wonder what's next?
I haven't forgotten about this blog, in fact, I have started writing this post numerous times but haven't had the inspiration to finish it. With 2024 nearing its end, I can't help but reflect on what has been my life these past six (6) years. I am realizing life is officially moving on from cancer. I have been BUSY with a new job, two actually, settling into a new(ish) house - moved in spring 2022, managing a young velcro dog, recently saying goodbye to a couple of geriatric cats who were with us for seventeen (17) and eighteen (18) years, and so much more. It is true what they say, given time, things return to "normal."
For my last health update post, Another Year, Another Surgery, I was talking about heading to the National Institutes of Health (NIH) for Roux Limb revision surgery in June 2022. I am happy to say, it was a complete success! No more constant bile reflux. I am still taking Cholestyramine medication before bed because if I don't, I wake up like clockwork at 1am with the starting of the dreaded burning feeling, but I will take it as I feel absolutely great all day and night as long as I do. I don't think I realized how terrible the reflux was until it went away. I can once again bend over while gardening, cleaning, playing with the dog or just living life. I no longer immediately suffer if I role the wrong way in bed, or am not propped up at a steep enough incline. I am just now starting to get over the fear of experiencing symptoms when leaving the house. I have been able to tolerate much more food and liquids. In fact, I have been able to gain back weight to the point where I have started to have to cut back a bit. My pants are getting tight ;)
Only issue with the Roux limb revision, was that I ended up with an incisional hernia along the incision line which was opened up for the original and revision surgeries. Because the hernia was a bit painful, seemed to be getting larger, and was impeding my everyday activities, I ended up getting it repaired (yet another surgery) in September 2023. I ended up going back to the NIH to have the hernia repaired. Even though hernias are a more common procedure and could have been done locally, I know how surgeons respond to me and my medical history. They usually take one look at my chart, how many surgeries I have had, my cancer history, etc. and they never quite know what to do with me. I also feel comfortable with the NIH staff, how they handle my anesthesia, and of course, I completely trust Dr. Davis. It is weird to say, but the NIH feels like home, and I would rather have surgery there than anywhere else if it is an option. Dr. Davis offered to fix my hernia stating, "I broke it, I'll fix it." I had surgery September 11, 2023, exactly four (4) years to the day from my total gastrectomy. This time, we decided to spend a little time having fun and drove to Baltimore, MD from Bethesda, MD to hang out for a couple days.
Recovery from hernia repair was the most difficult in terms of pain of all of my surgeries. I was surprised. Having a large piece of mesh permanently suttured to my abdominal wall is a bigger deal than I thought. Thankfully, it has gotten better, and seems to be holding. My goal for 2024, as always, is to not have surgery! So far, so good, knock on wood.
I moved into a supervisory position at work almost two (2) years ago now, and then in March 2024, I moved into an interim management position while continuing the supervisory role. Let's just say, it has been a bit crazy and more than one person can handle. I won't go into details here, but I am enjoying the experience, and look forward to the day of returning to one position soon.
Our beloved cats Lulu and Oggy passed away this year at seventeen (17) and eighteen (18) years respectively. It has been really tough. They were with us through everything, dating, our engagement, marriage, moving a ton of times, college, grad school, cancer, building our careers, multiple dogs, and everything in between. We miss them like crazy. Oggy was with me nearly half my life, and was my soul cat. Definitely a hole in my heart, but he lived a great life and was the absolute best right up to the end.
What has five (5) years stomachless taught me? Gratitude. I am grateful to still be here. I am grateful we discovered the gene and my dad is still here. I am grateful I can still eat and enjoy most of the foods I used to. I am grateful to be an embassador for newly stomachless folks, those making decisions about the surgery, and those struggling. I am grateful I no longer have to suffer with bile reflux on a daily basis. I am grateful for the NIH and the research being done to improve the lives of those with CDH1 and hereditary diffuse gastric cancer syndrome. I am grateful for full coverage medical insurance and a local oncologist passionate about continuous learning and keeping me healthy. I am grateful for my family, friends, and furry companions over the years. I am grateful to my fellow seahorses, and the seahorse buddy program I co-created to help others in similar situations. I am grateful to be able to share my story and hopefully help others in the process.
That is all for now. I will try my best to not wait another two (2) years for an update.
Take great care,
Kate
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