I had been meaning to share an update now that I am 4 years out from diagnosis and 3 years remission. I fell off from updates on Caringbridge somewhere during radiation treatment after a lengthy share accidentally deleted. Frankly, I was exhausted and started doing my brief photo shares. There have been some topics I’ve been meaning to preach about so strap in for a long walk that brings us to what’s happening now.

The update I had in my head this cancerversary was about the many positive things I have experienced and my gratitude. I’ve also felt the need to speak my truth that the struggle remains so very real.

I have had endless gratitude over these years for the support and encouragement, for the people who are strangers who have approached me in admiration, for those who labeled me a warrior and thanked me for my vulnerability. This is the energy I hold on to and choose to carry with me as I continue to fight to not only survive but thrive.

Something I’ve come to know too well is the cancer battle is not over with mastectomy or hearing the word “remission.” It ebbs and flows with new challenges and progress each day. While each day and year of being cancer free is a victory (too many do not know), there is also fear.

When we look at the science, my genetic background, cancer type, and age of diagnosis … each year of living means a 1% increase of recurrence risk. Statistics like these create a constant paradox of celebration and fear. I do not share this to create panic or a sense of doom for anyone, but to acknowledge and validate the struggle of my sister warriors and one that is often my own. On top of this layer are the many layers of cancer recovery.

Cancer treatment recovery is something that we survivors do not hear enough about and is significantly lacking in the treatment world. The harsh reality … Chemo is poison. Radiation is poison. Chemo is a treatment that is designed to kill rapidly growing cells. This characteristic is what causes the hair and nail loss. Chemo impacts every cell in the body. Rebuilding from these harsh treatments is often complicated with harsh “long-term” treatments. My treatment plan at this time is tamoxifen for 10 years (3 years down).  Some of the known side effects of this medication include: pseudo-menopause (all symptoms of menopause are free game), weight gain, nausea, digestive issues, fatigue, brain fog, headaches, insomnia, bone pain, irritability, depression, and anxiety and well the possibilities seem endless. 

While I chose to hold on to the energy of the compassionate supporter, I share this has not always been the energy I have received. And well the reason my advocate spirit feels the need to take this long walk.. One of the many blessings of my diagnosis has been the gift of a sisterhood like no other.  I have a squad of some of the most badass women you will ever meet and I’m so grateful for their love. I have witnessed their struggles much like my own and my hope is that my sharing helps you to feel seen. I see you girrrrl!

There are some that believe all should be well at mastectomy.. at remission.. at completion of treatment; as if treatment ended and I magically woke up the next day happy healed and well. There are some who believe acknowledging my pain and struggle today means I’m “not grateful enough”, “I’m too negative,” “I’m stuck in the past”… because well “you are okay though?”

Cancer does not go away. Like all traumas the trauma of cancer does not go away you don’t forget it…IT is always with you. The hope is to be able to grow around and from it. There’s not a day that it’s not in our thoughts, that we don’t feel it in our body, or that we are not impacted (the optimist in me must acknowledge that the impact is not always negative ♥️).

These last few months I have felt this to my core. I have been struggling with hypokalemia (low potassium) and have just not felt good despite many efforts to improve my health. This summer I experienced 2 seizure events due to my potassium being critically low. My providers have been somewhat puzzled and we have honestly been going through the guessing game…Was my tamoxifen impacting my potassium absorption?  Did treatment impact my kidneys?  Next step was my gut…

Almost 4 weeks ago I was working from home when I had a sudden onset of severe abdominal pain.  I have been monitored for ovarian cysts (another side effect) and assumed I was experiencing another rupture. The pain was unrelenting.  My Mum took me in for imaging and we ended up at the women’s hospital hearing there was nothing to indicate why I was having this pain and my next stop was the ER. Sadly, I hesitated.

During my first seizure event I was brought in by EMS only to be told .. well you just have a random virus ..bye. With the pain I was experiencing, I couldn’t bare sitting in the ER for hours only to be sent home. After about 5-6 hours in the waiting room, I skipped triage and was admitted to the ER. My bloodwork showed that I was dealing with a severe infection and the CT scan followed with the cause. I had a ruptured colon and infection leaking into my body. I was admitted and told I would be treated with antibiotics with the plan to treat the infection and then I would need surgery.

I made it through the night on the antibiotics, and then things quickly changed. My doctors determined I needed to go to surgery as the infection was only going to get worse and I was at risk for sepsis. Within an hour I went to emergency surgery and was fortunate to have Matthew and my Mum by my side. Despite some complications coming out of surgery .. surgery went as well as could be expected. I woke up hours later with a 12-inch incision, about 5 inches less of colon, and a colostomy.

My pathology came back with no signs of cancer (Hallelujah!!!) and an infected, ruptured colon with abscess. Just this summer I learned that I had developed diverticulitis (while they can not determine that treatment caused this… I did not have it prior to treatment). My providers tell me that my treatment likely weakened my tissues and this with the diverticulitis caused the rupture.  Silver lining… it is possible that I have had a small rupture the last several months and that this is what has been causing the low potassium and just making me feel unwell.  The hope is that once I heal and recover that the low potassium and all the other accompanying symptoms will no longer be an issue!!!

Monday, I had my surgical follow up and was relieved to finally have my staples removed. I also was able to have many of my questions answered re next steps. I am very limited for now i.e. can’t lift more than 10 lbs., limited physical activity etc. In about 6 weeks I will be able to start physical therapy to safely build some of my core strength. My surgery left me with a 12 inch incision through my abdominals. Theres high risk of hernia and other complications… so while I’m desperate to move my body again I am doing my best to be smart and intentional about not doing anything that will complicate my recovery.

My ostomy is intended to be temporary for 6-12 months. Baring no complications, I will return to the surgeon in about 6 months to determine if my body has healed enough for reversal. While I’m so grateful to be recovering well and to have the option for reversal I have to speak my truth and say it’s hard and discouraging to know that I will go through a similar recovery in 6-12 months. I was scheduled for a reconstruction revision surgery in January; this has been put on hold and I’m still trying to fathom the idea of 3 surgery recoveries in one year.  I’ve had my wavering moments where one moment I am feeling strong and proud to be eating real foods, walking and even dancing 😊 and then the next I’m going how the %#$&* did I end up here ???

Life with a colostomy has been far from ideal. I am experiencing issues on the daily and while my time with a colostomy has been brief this advocate already has much to preach about. I’ve joined some online support groups to help with navigating the world of ostomy. With this new membership and some of my initial experiences, I have quickly come to recognize that there is a lot of embarrassment and tremendous shame around having a colostomy.

While I have already had my share of embarrassing moments .. like having my bag blow off in public.. you can be sure that I will not live in shame. I had a choice .. death or having a life-saving surgery. While I DESPISE everything about having a colostomy, this uncomfortable, awkward process of bowel movements coming out my stomach saved my life. While my first after surgery purchase was colostomy cover bags, this is the extent to which I will “hide” and I do not apologize for this.

Yesterday, I had a much needed win…I was able to take Addie on a date to The Nutcracker. I had been so anxious knowing everything that could go wrong. I have experienced complications every morning this last week and Saturday I broke. I ugly cried on the bathroom floor with my own poop in my hands. You know you have a good man when … he picks you up from this scene (I love you Matthew and I’m so proud to call you my partner in this wild ride). I let myself finish my ugly cry and remembered that this is only a moment and my success rate of surviving awful moments is 100%. This is a friendly reminder that this too shall pass.  Sometimes we need to let our shit out  (literally and figuratively) and then get up one more time.

I’ve been told “it was a good thing you came in.. you might not have made it.” and “some don’t survive what you experienced.” Those are words that help me stay grounded in the reality of what happened and help me to have self-compassion and patience with myself.  I have also come to recognize that through this health emergency I have received much of what I have been asking of the universe … not so sure why my gut had to explode  first but that’s for future Christi to navigate.

I do fear my sharing of this “life after cancer” health emergency takes away from my earlier message regarding the daily struggles of cancer recovery; My recent experience is an extreme, outlier of the impact treatment can have on a survivor. Many of us are regularly struggling with the day-to-day of symptoms/pain; or the “Oh you have new hip pain? While you may just be experiencing bursitis or aging, we will order a bone scan to make sure it’s not cancer” moments. I feel these can be heavier than what I am going through now.

The family..

Things are starting to shift back to normal.  Addie and Jaxson have been so resilient. While Addie is determined to become a teacher… my Satya baby has strong potential for the medical/healing field.  She took me on some of my very first walks in the hospital and was the first to examine my new warrior wounds. Oh my heart when I think of her looking up at me saying “You are moving faster today!” I was able to be discharged a day early and made it home for Jaxson’s 4th birthday.  With the support of our family, we were able to have Jaxson’s Superhero birthday as planned and it was something we all needed.  Per usual, Matthew has been doing everything he can to hold it down and manage a household, 2 kiddos, and work.  I’m always in awe at everything he is able to manage (with his only flaw being the struggle to accept help😚).

If you have made it this far, know that I am grateful for you. Since my diagnosis I have been overwhelmed by the genuine caring and interest in my story.  Here we are 4 years later… and so many of you continue to show up for me and my family.  The many kindnesses .. visits, check-ins, meals, cards, healing thoughts .. all of it! Whoa! I have somehow managed to build a tribe of people that I am grateful every day.  I appreciate all of you and am sending you all the good stuff this holiday season and always. 🙏🏼 

All the Love & Light💫

Christi & the Seth Superheros

P.S. I have found that Caringbridge encourages donations from people visiting the site.  I was told that this is done in a misleading way and that the company “profits from people going through difficult times.” I have not done my research and I do not know how these funds are used. I just want to caution everyone. If you are looking to donate this holiday season, please look to your local nonprofits who provide support to people in your community. ♥️