2019 Has Been One for The Books
Updated: May 2
I want to start off by thanking you all for following along on this crazy journey I call life. Also, for your continued love and support, especially over the past year. I wish you, and yours, love and peace. As the new year approaches, I am hopeful that 2020 will not be so focused on medical crap and that I can get back to doing the things I love.
Since the beginning of 2018, it has been one thing after another in regards to my health, and I have definitely learned to appreciate health and feeling well. It is everything! In my early 30's, it wasn't something I thought about much, but now that I have lived it every day, I will never again take it for granted! Each day that I feel good, each day that I am able to spend it with those I love, each day that I can get up and accomplish my goals, is a good day in my books. In 2020, I am looking forward to spending time with loved ones outside of hospitals, traveling, getting back to reading books for fun, enjoying and putting my master's degree to good use, continuing to enjoy and try new foods, and planning for the future - something I haven't done much of these past couple of years because I have been too focused on getting through the present moment.
2019 in review: I started the year with very little hair and I was still in the midst of taking the oral chemotherapy Xeloda. We had just been out to the NIH for the first time in December 2018, and traveled to Redlands, CA where Andy interviewed for a job just before the new year. While in Redlands, I got the phone call informing me there was cancer found in my stomach during my first endoscopy and stomach mapping procedure. I felt relief that the decision was made for me regarding having a total gastrectomy. Little did I know, the waiting to have surgery would be intensely hard. I needed to finish chemo and radiation, and take some time to let my body heal before the major operation. It took nearly an entire year and it was really scary to have to wait it out.
Andy and I decided to look for a bigger house, and after looking at over a hundred and losing out after multiple offers, we gave up. We are happier than ever that we did, because we still love our little house and after all the improvements we have made now, we never want to leave! Plus, the price is right :) We enjoyed our first full year with our new garage. We put in new sidewalks and a patio in the back yard. I did a lot of gardening. I painted indoors and out. We had the bathroom remodeled, painted some more. And, finished many other projects around the house. It is looking nice if I do say so myself.
I participated in the LiveStrong program through the YMCA. It is an exercise program intended for cancer survivors. It was 12 weeks long, and I felt great after completing the program!
We took an impromptu trip to Hawaii. I was so ready for a break from chemo, and everything else, and Andy was about to start a new job. So, we booked the trip after I found an amazing hotel deal, and took off for a week in March. It was just what we needed for a little rest and relaxation.
I finished chemo! I started and finished radiation therapy! I graduated with my master's degree in public health! I was diagnosed with and treated for lymphedema in my left arm. I started and quickly stopped Anastrozole, an aromotase inhibitor meant to prevent the recurrence of breast cancer. The side effects were awful, and the doctors couldn't guarantee it was helping me so I said to heck with it!
We went back to the NIH in June for a follow up and for my dad's initial visit. Oh yeah, in 2019 we found out my dad and brother are also CDH1 positive. Oh joy. We spent a lot of the year informing relatives of our genetic testing results as well. We want to ensure everyone has the information they need to make informed decisions about their own health.
I traveled to Chicago to meet up with some new CDH1 friends. There is this great facebook group and Instagram following, where we all talk and support one another. Anyway, I have met so many wonderful people. We have since gone through surgery together, and feel like family now that we are seahorses.
I lost my stomach, well, I didn't exactly loose it. It was surgically removed and is likely on about a million pathology slides in a research room somewhere on the NIH campus. I have been meaning to go visit it one of these days. Maybe during my next visit out east.
I became an Ebay seller. Found out people will buy things I was about to give away for free!
I spent a lot of time with friends and ended up going to the MN State Fair 6 times! It was so much fun, and I ate EVERYTHING!
Did I mention...I ate soooooo much food! #mystomachbucketlist was a success!
I spent a lot of time in hospitals. I was hospitalized to rule out sepsis for a few days in February due to a fever while immunocompromised on chemo. I was in and out of the ER in August following my first Zometa infusion because of an uncontrolled fever as a result of the medication. I was in the hospital for 7 days at the NIH after having my stomach removed. I spent 6 more days at the NIH lodge while recuperating before flying home.
I lost almost 30 pounds between my total gastrectomy on 9/12/19 and the end of the year. I had 12 lupron injections in my butt, 1 zometa infusion, countless doctors visits, procedures, therapy appointments, and medication refills.
I am relearning how to eat now that my stomach is gone. I am still eating sooooo much food!
I am beyond grateful, and I look forward to what's in store in 2020. I did all of this (surgery, chemo, treatments, ongoing care, etc.) to make sure that I live a long and healthy life, so it's time to start living it!
For pictures of my year in review, please visit my Instagram page (I am feeling too lazy to upload here). It is a public account, so even if you don't have an Instagram account, you can still view all my pics.
P.S. I'm not sure what is up with my blog writing, but I have started five blog posts in the past couple of weeks but haven't gotten around to finishing or publishing any of them for you all to read. I think it has to do with finally being done with all the planned medical treatments, and surgeries. I am in a permanent holding pattern now, which is great, but also very odd. I have probably already said this many times, but it is scary reaching the end of this crazy ride, and now looking off into the unknown which is life after cancer. Long story short, I plan to continue writing for as long as I have something to say, and as long as people keep reading.