Back to Fargo. Are Hot Dogs Sandwiches? The Anxiety is Real.
Return Home to the Flatlands
OK, I know it’s been awhile since I’ve written a blog, but I’m back and ready to share numerous updates. My last blog provided an update on my surgery, our time spent in NY and the anticipation of returning to my kids and normal life. We sure were anxious to get back to North Dakota!
Jarod and I flew home and arrived in Fargo in the early evening, we even arrived ahead of schedule, and were greeted by my whole family, including my children. Seeing their smiling faces and the handmade, over-sized paper heart was such a warm and welcome sight. As they all came in to hug me, one by one, I was reminded just how lucky I am to have such a loving and supportive family.
The car ride home from the airport each of the kids tried their best to talk over the other in a mad rush to get to tell us about all of their adventures and how much they missed us. This was very evident by their enthusiasm! Jarod and I were quite overwhelmed by the intensity of this as we just had had two weeks of relatively quiet and slower-going time to ourselves (a first since becoming parents over ten years ago!). Seriously, I could count the number of days/nights that Camden had previously been away from us on one hand.
Over the next few days, the kids filled us in on all that had happened at school and with grandpa and both grandmas while we were away for two weeks. They were excited to get back to regularity with us, but understandably, they already missed out on the elaborate meals, play time with their cousin and aunt, as well as the routine breakfast with Grandma Natalie, school pick-ups from Grandma Ronda, and reading time with Grandpa Bob.
As the kids easily transitioned back to school and daycare, and Jarod to working from home once again, I was left with trying to figure out how to fill my time. As many of the coworkers (and husband) can attest, I truly loathe being bored and like to consume myself in daily activities and completion of tasks. I suppose it’s why I thrive being an admin. At first, it was nice to have time to myself (which never happens). I finished reading Crazy Rich Asians, watched a few episodes of my favorite TV shows, and had the chance to organize a few rooms in the house as well as clean all the clothes from NY. As the days went on, I started to get stir crazy and tried brainstorming for Love Your Buns but soon felt a bit overwhelmed by all my ideas and hopes for my non-profit.
Hot Dogs are Sandwiches Benefit
A couple weeks ago, my coworker and friend at work coordinated a benefit for me and my family at Drekker’s new building downtown. Her enthusiasm to help and her ability to put this together in a matter of just a few weeks was nothing short of amazing! The ‘Dog Father’, a local taco truck graciously offered a portion of their proceeds towards my benefit as well as Drekker. Thanks guys!
We debated if I should attend my own benefit… Do you attend your own benefit? We decided that we would go, since it seemed to be a great opportunity to see many friends, family and past coworkers that I hadn’t seen in a very long time.
That afternoon it was raining – like a lot. Seriously cats and dogs raining. But that didn’t seem to stop everyone from coming out!
The new Drekker Brewhalla building was gorgeous (or should I say, not new, but old building, beautifully renovated and refurbished?). As everyone enjoyed hotdogs and a beer or a coke, it was great to catch up with people from so many previous corners of my life and bring them up to date on my journey. In the end I was very glad to be there and to get the chance to thank everyone for their support. Thanks again, Natalie!
In a perfect world, celebrations like this should occur more frequently and not for these reasons. Community, family and togetherness are powerful! We should all come together more often to celebrate even the simplest of things.
Love Your Buns is going to hit the ground running!
Our new non-profit, Love Your Buns, had its first boards of directors meeting which occurred on Sunday, the 23rd. We’ll have much more news to share on that front very soon but know that we’re all very excited about the potential journeys we can go on as an organization. Right now we actually need to reign it in a little bit and really find our true niche.
If you are interested in joining our leadership team or to help out in the future as a volunteer, please let me know!
The mindbogglingly challenging decision of…Treatment or No Treatment…
When my cancer was first found, I received multiple opinions on treatment options, including radiation, chemo and surgery, and also where I would receive treatment and who my surgeon would be. One cancer center was local, the other was a more prominent provider, but was hours away. Both cancer centers suggested the same treatment regimen and could successfully complete a Low Anterior Resection and reversal.
I felt I had a plan for success and would beat this disease. And it all seemed to go to plan throughout. Tests came back in great ranges, CT scans looked clear. I was continually reassured by the results that indeed I was cancer free. This past year my CEA started to inch up by small intervals but were always within the normal range, and the CTs remained the same, no known lesions.
As you most likely know by now, that all changed on August 15th. My previously assumed fully resected cancer had metastasized in the liver. Obviously, this is not an ideal situation, but as stated in my first blog, we had a plan in place to remove the tumor. It was a whirlwind of an experience, but I am thankful to have had a world class surgeon complete the procedure, and that it was all handled so quickly. While at MSK, in speaking with the colorectal oncology team, I was presented with no additional treatment options since I had already had the adjuvant FOLFOX treatment as a follow up to my Low Anterior Resection. This suggestion of going forward with no chemotherapy was very unexpected.
As I did before, I wanted to get a second opinion on the treatment plan to ensure I was able to make an educated decision for my health. The second opinion suggested chemotherapy was the best decision as that’s all that is available at this time for stable colorectal tumors and that if not taken, the cancer would surely return. He also quoted a series of statistics that were less than optimistic – although Jarod made sure to follow up later with research that contradicted the negativity in the room.
As we left the appointment, both Jarod and I were thrown into a state of confusion left to try and determine which was the best path forward. Do I put my body through six months of chemotherapy, that will most certainly damage me and my body further? And do so when research shows it may not even be effective? Or do I chance it and go with a more holistic, healthy living approach? While this may seem just like another tough decision to make in life, this is most certainly a decision that determines if you continue to have a life.
Through several long and detailed discussions with Jarod and my parents and consulting numerous compelling and significant studies on ways to improve colorectal cancer outcomes, I’ve decided not to complete the additional chemotherapy. I will instead make drastic changes to my current lifestyle to curb any recurrence as best I can.
Please note - if you are reading this and are currently evaluating treatment options for rectal or other cancers - this blog does not replace the medical advice of your doctor. While it is always wise to consult multiple opinions to enable an educated decision, your doctor should have the best understanding of your situation. In my case, we entrusted the advice of one of the most preeminent colorectal oncologists in the US (which we were very lucky to be able to do) and while his advice was unexpected – it turns out there is quite a bit of science behind his recommendation.
In terms of the recommended holistic approach - you can see more about the methods we’re employing in my holistic treatment in our Studies Show… series. I have already begun to walk three miles every day, cut back on 95% of carbs and sugar, take several supplements, and drink a substantial amount of coffee. Jarod has eyes on a half marathon next year and marathons and beyond in the years to come!
Anxiety and Depression - Results showed that the suicide rate in patients with any kind of cancer was 60% higher than in the general population.
This is a difficult subject for me to touch on, but I want to continue to share my experience in every aspect in the hopes of shedding light on what’s all involved with this disease, physical, mental or emotional.
Why would a cancer patient that has gone through hell and back decide their life is no longer worth living? Well, first, the associated side effects of LAR syndrome greatly reduce the patient’s quality of life. After my rectum resection, I had to face months of inflammation, pain, incontinence, not knowing what foods to eat, and anxiety in social situations. While I continued to put on a happy face, I was secretly dealing with all these symptoms.
Second, the after effects of radiation in women can cause infertility, menopause (hot flashes!) and scar tissue on all organs in the path of the radiation. I think I may now be past menopause and have now entered the body of a sixty-year-old. I also have a greater chance of osteoporosis and other menopausal related health conditions. Now enter the fear of further disease. Will I continue to have new lesions? Can I go through another surgery? What are the risks of continued CT scans? I will never get to a point where I can stop worrying about cancer.
The thoughts that keep entering my mind are all about my family and the life they will have when I’ve passed. I hope and pray that this isn’t their reality, but I can’t help but feel this way when I’m inundated with statistics of a smaller than acceptable percentage of survival rates in colorectal patients. There still isn’t a cure available, the only available therapies are only successful in some patients. What if I do everything in my ability to fight this disease, but it still consumes me?
Part of the mission of Love Your Buns, will be to truly improve quality of life for survivors, which means taking care of your body, your mental health, and your emotional health. We’ll be posting more in the future in that aim. If you experience anxiety, depression or thoughts of suicide, please use the below resources to find help!
Local
FirstLink
http://myfirstlink.org/contact-us/
800-273-8255 (TALK)
The Village
https://www.thevillagefamily.org/contact-us
701-451-4900
National
National Suicide Prevention Lifeline
https://suicidepreventionlifeline.org/
1-800-273-8255
Love Your Buns is a non-profit initiative aiming to remove stigma and improve awareness around rectal cancer, its prevalence and its symptoms. A growing epidemic in young adults, rectal cancer is easy to remove if caught early, however due to a variety of reasons, young adults are not likely to seek screening options like colonoscopies. This gap in screening is leading to more advanced disease at diagnosis and more challenging and strenuous treatment. We're working to Educate young adults to increase awareness of the signs and increasing prevalence of Rectal Cancer and to Empower informed decision making and Improve quality of life in Survivorship.
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