Gosh, I still so vividly remember sitting in my surgeon’s office at MD Anderson Cancer Center. I had already been diagnosed at my local hospital and had traveled to a larger center to get a second opinion. My initial staging showed that the tumor had grown through the rectal wall and jutted into my posterior vaginal wall. It was also detected in my lymph nodes. My first meeting with my surgeon entailed a very invasive physical examination and extensive conversations that included a lot of drawings. I wish I still had them!
After we had been in that meeting for quite some time, I asked, “So, is this colon cancer or rectal cancer?” I honestly did not know. The drawings got confusing. She replied, “The tumor is not located in your colon, it’s located in your rectum.” Hmmm. Not the answer I was hoping for. I guess none of this was the answer I was hoping for.
Colorectal Rectal Cancer Awareness
Since my diagnosis exactly 809 days ago, I’ve made a commitment that I’m not going to let the shame and embarrassment stop me from advocating for other young people. My name is Catherine and I am a colorectal rectal cancer survivor!
What’s the big deal you may ask? Well, actually, the cancers are in fact different.
In a nutshell, rectal cancers can sometimes be more difficult to treat because of the small nature of the area. Also, fun fact, your rectum does not have this protective layer your colon does (the serosa) so it’s easier for the tumor to break through and spread…just like it did in my body.
No matter how you slice it, colorectal cancer is on the rise as a whole. The treatments and procedures for them do differ slightly though.
Additionally, just the stigma of rectal cancer altogether. Who wants to talk about their bathroom issues? I get it, I do. It could just save your life though. I cannot stress enough that while I did realize something was going on, I also was floored to be diagnosed at stage 3C because I was still functioning well. I was living my life, working out, taking care of my kids. All with this monster growing inside of me.
Treatment options for colon and rectal cancer differ also. It’s common that rectal cancer surgery will be last. This is called neoadjuvant therapy! The chemotherapy and radiation aim to shrink the tumor to make surgery in such a delicate area easier. There are even watch and wait options that patients do now and avoid surgery altogether! This isn’t an option for more advanced rectal cancers typically but how great for some patients to avoid surgery altogether!
They are even continuing to research differences between cancers in the left side of the colon versus the right. It’s pretty amazing to think of the headway they’ve made in even the last decade with colorectal cancers.
Remember that colorectal cancer is preventable with regular screenings (if you are 45 or older) and paying attention to your body! I will not die of embarrassment! I don’t want you to either!
On more than one occasion I’ve been asked for a recommendation on what to get a cancer patient. Someone’s mom, dad, brother, friend, teacher, aunt, cousin has been diagnosed with something that has just flipped their world upside down. I’ve also been on the receiving end of many thoughtful gifts during my own cancer journey. Without further ado here is my list of things I just generally love, was gifted during treatment or wished I was gifted during treatment!
Cute loungewear set – No way around it. A cancer diagnosis likely comes with having a lot of time to sit around while in the infusion chair or getting extra fuilds after IV chemo. A cute set in their favorite color is sure to make them smile. I received several pajama sets and sweats that are so comfy!
Manta Sleepwear Mask – oy vey! If you are going to get them anything I will highly suggest this mask! It is oh-so-comfy with little love pockets for your eyes and it filters out every last ounce of light. A must for the hospital stays. I wish I would’ve had one during my stay!! (I did have lots of earplugs on hand, hey, add that in with the mask!)
The Cancer-Fighting Kitchen – My sister introduced me to this book and honestly, my sister and her chef husband are the main reason I ever ate anything out of it! It’s full of so much great information! Recipes are stuff you can make ahead and freeze for when you are on chemo weeks and just can’t stomach eating. I remember specifically eating leek soup and carrot soup. The mineral bone broth recipe is quite extensive but so very healing. Delivering a batch of mineral bone broth + a copy of the cookbook will be sure to lift their spirits. So very thoughtful!
No Cure for Being Human – While we are on the book front, this is another great one. Written by a stage IV cancer patient, Kate attempts to answer the question how do we move forward with a life we did not choose? Hard stuff. Important stuff. She is brilliant in everything she writes!
Worry Dolls – I was gifted some of these from a good friend and I thought it was so sweet. Honestly, I had never heard of the tradition before. According to legend, Guatemalan children tell their worries to the Worry Dolls, placing them under their pillow when they go to bed at night. By morning the dolls have gifted them with the wisdom and knowledge to eliminate their worries. The story of the worry doll is a local Mayan legend. It’s a unique gift, an unexpected treat sure to make them smile.
Ohyouresotough – This shop has the cutest funny cards and gifts for cancer patients. Seriously. Go check her out. She is funny and brilliant and support small bussinesses!
Additional ideas to consider: gift card for acupuncture (often helps with side effects of chemotherapy), starting a meal train (be sure to ask about any dietary restrictions, preferences etc.), a pretty journal with a pen, or what about a random snail mail letter letting them know you are thinking of them? I cannot make this up that a friends father clipped out comic strips for me and mailed them to me every week. Religiously. I never forgot it. I still have them.
If you click on any of the links above, I am going to receive a tiny commission. YOU, most of the time, will receive an offer, so it’s a win-win! The products I talk about on this platform are the ones I truly love!
When I was a little kid and would complain about something, my grandmother would always respond with, “offer it up, Catherine”. At the time, this was just a very grandma-ish saying and I gave it no further thought other than I always knew that’s what she was going to say.
Anyways, fast forward 25 years or so and that phrase has taken on a whole new world of meaning to me personally. I’ve hopped on the bandwagon of doing a word of the year rather than some resolutions that I never keep and this year I’m choosing the word/word (there are no rules, I can do what I want…)
offer
[ aw-fer, of-er ]
to present something as an act of worship or devotion; sacrifice
an act or instance of offering:an offer of help.
offering
[ aw-fer-ing, of-er- ]
something offered in worship or devotion, as to a deity; an oblation or sacrifice
a contribution given to or through the church for a particular purpose, as at a religious service
anything offered as a gift
Ok, hear me out as I ramble what this means…
My word or phrase this year is to remember that no matter what, I can offer it up. More importantly, it’s not about me. How can I get out of myself and be of service to others? I think that tends to make our own problems smaller. I think this can happen in a number of ways we likely don’t even think about. Maybe it is doing some extra for a coworker at work…or maybe it’s just tipping more, tithing more, finally doing that volunteer work, being socially active on issues you care about, praying more for others, or reaching out to those you know you avoid for a reason. Personally, I’ve started doing some service work in different organizations and trying to be more invested in my own future.
I try to remember that when I am rageful about my ostomy irrigation taking up time and being messy, I can offer it up and meditate on the fact that a lot of people don’t have this option to manage their ostomy. Irrigation gives me my freedom back.
That when I feel frazzled during the week from the work and kid grind, I can stop and remember to not take everything so seriously. It’s ok to ask for help or call in pizza. Or mostly what I do is just announce very loudly I am not cooking and everyone fends for themselves (ok, I help the three-year-old). But you get the idea.
I am going to make more of an effort to be a better friend and reconnect. So, if you’re my friend. Sorry. You know life moves fast and it’s easy to let months become a year. I will strive to take the trip with you and be the friend who remembers birthdays and anniversaries! Not just to wish you a ‘happy birthday’ via text but to actually wish you a happy birthday by sending a thoughtful, meaningful gift that would make someone on the other end smile when they open it (btw, I actually have this friend, they do exist!). Personally, I know how great this feels because when I had my own medical crisis, I had no shortage of cards and amazing gifts sent my way. It helps. To actually show I care. So, there’s that.
Honestly, I just reflect on ‘offering it up’ in a way that on the other side of my suffering is growth and bound to be happiness. That there will always be peaks and valleys. I know, because I was in one of those deep, deep valleys. I honestly didn’t know if I could get out, but I did. In more ways than one it changed my life. It made me realize I needed to quit a lot of my bullshit behavior. I just didn’t have room for it anymore. Which was basically not being able to control my alcohol intake and food issues. I mean, I’m sure I have a lot more bullshit behavior than just that, but these seemed to be the ones making me crumble as I tried to find balance post-cancer.
Also, this all does not come easily or naturally to me. It has taken a lot of work over the last year to decide I’m going to be happy and turn the last few years of a literal shit show into something positive that I can spin my way.
I do not always know which path I will take, but I am confident that it comes with speaking up and just taking one step forward at a time. Offering it up knowing that what feels like it’s crumbling today will often be built back better tomorrow.
I’ve been thinking lately about how all of our cancer experiences are so different. I mean that based on our access to care and information, to surgeons who will agree to operate etc. I read just the other day a fellow CRC friend comment she found a surgeon who was willing to operate on her stage IV colon cancer through a support group.
That’s so important! There are so many clinical trials and advances in treatment that it can be overwhelming to know where to look and how to search etc. I’m going to pool just a few resources that I know of that are great for finding clinical trials and colorectal cancer support groups. This is a short list, but these are a few that are useful if you are starting out or don’t know where to look:
Mybluem.org is an organization I am an ambassador for! It’s a community created for patients by patients and here, once you register, you’ll find a wealth of information including some really neat things like a whole section on podcasts, ostomy support, sexual health. So many great things that impact us as early onset survivors. Check them out!
Fight CRC is such a great group that has a wealth of information on clinical trials, support groups, and even a whole resource library based on your stage of cancer. If you or a loved one has colorectal cancer this organization is a great resource!
If you are specifically receiving treamtnet at MD Anderson Cancer Center, they have a lot of support groups I did not even know existed, and I received treatment there!
clinicaltrials.gov – I have no experience with this platform myself, other than hearing some advanced CRC friends mention it as a resource. Definitely something to check out if you are looking for clinical trials.
There is also a whole community of early onset CRC patients and survivors I’ve gotten to know well through Instagram! It’s been wonderful, therapuetic, healing (sometimes heartbreaking) to form so many wonderful friendships through such an awful experience. Come find us! We are surviving this disease and leading fulfilling lives!
March is colorectal cancer awareness month and today I wanted to dedicate to symptoms. Specifically, rectal cancer symptoms. Because I did have colorectal cancer but my cancer was in the rectum, not my colon. I know this because when I was first diagnosed I remember asking, “So, this is colon cancer?” because that sounded way better than declaring to everyone I had rectal cancer. It was not in my colon, which my surgeon ever so eloquently and dryly explained to me.
If you look up ‘rectal cancer symptoms’ you will find a list to include:
A change in bowel habits, such as diarrhea, constipation or more-frequent bowel movements
Dark maroon or bright red blood in stool
Narrow stool
A feeling that your bowel doesn’t empty completely
Abdominal pain
Unexplained weight loss
Weakness or fatigue
In fact, colon cancer and rectal cancer treatment can be quite different because the rectum is such a small organ that sits barely removed from other important organs, so this often makes surgery quite difficult. It has been my experience that colon cancer patients seem to have surgery first to remove the tumor, while rectal cancer patients usually undergo treatment first in hopes of shrinking the tumor before going in to remove it. I actually wrote a post about a year about that detailed all my symptoms.
Being diagnosed young had me overlooking all kinds of symptoms just because I never knew. I didn’t know anyone with colorectal cancer (close to me). It was a distant thought in my head. I had heard of colorectal cancer before, isn’t the main symptom blood in stool?? Sure, I knew something was happening but I was also moving across the country, pregnant and postpartum so figuring it out took me a little longer.
The symptoms I experienced in varying degrees were:
Urgency/Constipation – This is one of the symptoms that sticks out the most for me because I definitely remember it to the year prior to diagnosis. I know it seems odd to have these two sensations together. Know how when you’re pregnant you have to get up and pee multiple times a night? Well, I had that except it was to poop. I would frequently get up at night and feel urgency to go and then wouldn’t be able to empty my bowels all the way.
Change in Stool – Somewhere along the way (I can’t exactly recall) I did notice my stools begin to change shape. They were longer and thinner. But HELLO, I was constipated, doesn’t that make sense? It’s not like my stools morphed into some seriously weird stuff, they were just a little…different. The change wasn’t alarming to me, I just chalked it up to constipation.
Weight Loss – I did steadily lose weight but I was also postpartum and breast feeding so the weight was not an alarming symptom at that time in my life. It was also very slow. Slow but steady.
Anemia – In December 2017 I went to a new OB in Florida when I found out I was pregnant with my daughter. Took them about 1-2 months to call me back and tell me my routine bloodwork showed I was very anemic. If I recall correctly, my hemoglobin level was at an eight or six, which is extremely low. Oh, I don’t eat meat I told them! I was put on an iron supplement and my iron levels came up to normal and stayed that way throughout pregnancy.
General Change in Bathroom Habits – I don’t really know how to categorize this one so we’ll leave it at this. If I really think back I can trace to beginning to notice something being different summer 2017. I felt like I was beginning to deal with more gas, urgency , something was just different. During this time I was also smack in the middle of serious postpartum depression and drinking heavily so I also chalked these changes up to lifestyle at the time. (Honestly, I could write a book about this period in my life, its very much a hard thing for me to talk about because I am ashamed of it).
In a nutshell, those are the symptoms I can recall experiencing prior to diagnosis. I didn’t realize how serious they were until I was smack dab in the middle of a cancer diagnosis. I had never read anything about colorectal cancer symptoms or known anyone in my life close to me who talked about it. So here I am, talking about it. It happened to me. You are never too young!
Long before cancer creeped it’s way into my life (well, long before I knew it was growing inside me) I had already begun to make lifestyle changes to help to reduce my toxic load. At the time, I didn’t realize this is exactly what I was doing, I just knew I had been becoming more aware of how toxic so many things in my environment were. The processed foods, meat industry, personal care products, even baby food has been found to have high levels of arsenic! “Toxic load” refers to the accumulation of chemicals and toxins in our body that are ingested or absorbed.
I think it’s also important to point out that we are far from perfect as a family on this. No one can practice perfection in this area, it’s too hard! We make safer swaps where we can all while remembering we are human trying our best to navigate this. My kids nutrition is not perfect and I’m sure there will always be areas to clean up. Progress over perfection my friends!
Here are five ways I help to reduce our chemical exposures in our family
Eat vegetarian whenever possible & buy organic fruits and vegetables
This one is kind of a no-brainer as we’ve all heard it a hundred times. I get it, buying all organic everything isn’t financially possible and that’s when you stick to buying organic items that are on the dirty dozen list. Buy organic when you can and be sure to always thoroughly wash produce (we use a 3:1 water/vinegar solution). In addition, I always lean towards recipes that are vegetarian. Eating vegetarian is cheaper, better for the planet, your health etc. My favorite cookbooks that got me into plant based eating are The Happy Herbivore and Everyday Detox
2. Transition personal care and makeup products to safer alternatives
Our skin is our largest organ and believe it or not, we are absorbing all the products we slather onto our skin and face. I have been using Beautycounter for over a year now for my skincare and makeup products. Beautycounter delivers high performing personal care products while banning a plethora of ingredients. In addition, they are also a B Corp, meeting the highest standards of social and environmental performance. I will also link a great article by one of my favorite beauty bloggers, This Organic Girl, that goes over cleaner beauty options available at Target. Cleaner, safer options are out there and I hope to continue to share all those things I come across on this platform!
3. Never wash plastsic in the dishwasher – switch over to glass storage containers instead of plastic tupperware
Did you know that back in 2018 the American Pediatric Association stated to, “avoid microwaving food or beverages (including infant formula and pumped human milk) in plastic, if possible, don’t put plastics in the dishwasher, and use containers made from alternative materials like glass or stainless steel whenever possible.”
That means that all those cute plastic kid plates, cups, snack containers you have should never be going in the dishwasher. Ever. Even if plastic is labeled ‘dishwasher safe’, it is not. On a personal note, we do still have and use plastic kid plates and cups. I wash them by hand and yes, it is a pain in the butt. We have some stainless steel kids cups we use as well. Will slowly transition over to stainless steel but it’s a process.
4. Take care of your gut
This perhaps seems like a random one but I have never been more aware of how my own gut functions since getting my permanent colostomy. Your bowels are how your body expels waste and toxins from your own body. It’s imperative to keep them working regularly and treat them well. This means drinking a lot of water (I personally aim for a gallon a day) and basically not killing yourself with crap food. I don’t think I need to go into this further. Another huge component of this is getting adequate exercise so your gut can actually process and absorb what’s needed and expel what’s not.
5. Switch to a natural laundry detergent
After trying quite a few more natural laundry detergents I have finally found one that is unscented, comes in small recyclable packaging and actually works on kid stains and sweaty clothes, Earth Breeze laundry sheets! You can get $10 OFF your first order here. This company is great, focusing on zero waste products that actually work. Ditch the scents and opt for unscented as well. I practice this in most products, when there is an unscented version, I will grab that. The less synthetic fragrances, the better.
Small and steady action cleaning up our toxic load can go a long way in improving the health of our families! What are some of the ways your practice this in your home?
March 1st marks the beginning of Colorectal Cancer Awareness month and in the next few weeks I’ll use this platform to highlight my own experiences as a rectal cancer survivor in hopes that it can somehow help another person out there. Never in my wildest dreams did I think cancer would affect my own life, let alone leave me with a permanent ostomy. Here are the facts about colorectal cancer you need to know:
Colorectal cancer is the second leading cause of cancer death
The American Cancer Society has recently lowered its recommended screening age to forty-five years old
African Americans, people with family history of colorectal cancer, history of polyps, history of undiagnosed stomach issues should seek colonoscopies much sooner
Early screening is key, as this is a slow-growing cancer and regular colonoscopies remove any polyps before they can turn into cancer
Probably the most startling and important fact about colorectal cancer is that it is on the rise. If you find yourself in the millenial category, your risk of rectal cancer is four times greater than people your parent’s age. Read that again: the people getting this cancer are not your parents friends, they are your best friend, your sister, your co-worker. This post isn’t about why that increase is occurring but moreover making sure this disease is no longer defined as something that affects those “fifty and older”.
Millenial’s also need to be aware that colorectal cancer in younger people is often diagnosed at much later stages due to being misdiagnosed or individuals putting off seeking treatment. We will highlight symptoms of colorectal cancer in another post but any changes at all in bathroom habits that aren’t cleared up within a week or so should be brought to your doctor’s attention. Our bodies are good at giving us indicators when something is off, but we have to be mindful and aware of our bodies natural habits. Our lives are busy and hectic but taking a moment to stay in tune with your body could greatly benefit your health.
While we’re on the topic of doctor’s and bodily functions, let’s all take a moment to remember that we’re all adults here (well, most of us…) and that everyone poops. Literally everyone. If you don’t, it will result in serious medical complications. Take this moment to realize that it’s serious to be honest with your medical providers about symptoms, even if you think they are embarrassing. I can assure you, ending up in the emergency room with a rectal exam while in writhing pain is no cakewalk either.
Ways to Lower Your Risk for Colorectal Cancer
While regular colonoscopies and screening will help prevent colorectal cancer, there are actually actions you can take yourself to lower your risk for colorectal cancer:
Get screened at the appropriate time based on your personal risk factors
Eat real food, mostly plants, not too much
Get regular exercise to maintain a healthy weight + immune system
Avoid smoking and drinking alcohol
Take control of your mental health and find a routine that works for you
While we can all say we’ve probably heard the above statements can benefit our health, how many of us have actually put forth the effort to incorporate them into our lives? I think you’d be surprised that doing so will not only lower your risk for colorectal cancer, but greatly improve all factors of your life including but not limited to: better sleep, skin, improved mood etc.
Again, this is not a post to fear monger, but rather to put a buzz into young people’s ears that this is happening. It happened to me. It can happen to you.
Please note that I am not a doctor and any and all medical conditions should always be discussed with your own doctor and that is not google. Power and community is in sharing our experiences and knowledge.
In the spirit of trying to begin things I actually want to do (enneagram 9), I am going to challenge myself to write one blog post a day in March. Just really trying to get this platform going, creativity flowing and improve my writing. I’m sure some posts will be long, thoughtful and deep and others will be just pushing out content but such is life. I’ve given some thought to the kind of content I want to create and I’m sure it will morph but it will include:
Colorectal cancer awareness – as much as I always think I don’t want to be defined by my rectal cancer, it is a part of my life. It has affected so much of my life from my physical appearance, fertility, mental state etc. It’s important and I do feel like I have some value to add and share.
Clean personal care products – I will continue to share my personal care favorites I find that are safer for our home and skin
Gardening tips and hacks – gardening has become such a great respite and hobby for me. Something about getting your hands in the earth + grounding really feeds my soul – I hope to learn more throughout the year and share with you
Ostomy life – this is a huge part of my life that I’m still figuring out but I’m also realizing how many people have ostomies. Every time I mention it, someone comes up to me to tell me a story about their ostomy or someone they know. I think there’s a lot of knowledge to share here too and I’m hopeful I can be of service along the way
So thank you so much for choosing to take this journey with me. This challenge is more about keeping myself accountable and getting into the habit of pushing out content everyday. I have had this blog for years and believe it or not, I built it all on my own! There was a lot of hours of troubleshooting to get this thing going. I do think I have value to share but sometimes the action needed can feel overwhelming. So while every piece of writing on here may not blow your mind, thank you for being here and encouraging me along the way.
“I should be able to reconnect you,” the surgeon said to me as she sat across from me at MD Anderson in Houston. After being diagnosed with stage 3C rectal cancer, I had traveled to MD Anderson to get a second opinion regarding my surgery and treatment since the tumor had invaded other major organs.
“Ok, great! What does that mean?” I had no idea what I was in for. To say I had no idea about this cancer world would be a drastic understatement. The ports, infusions, never ending appointments and ostomies, I had no idea about any of it. I was as shocked as any to learn that I needed a port inserted into my chest so I could receive treatment. Wait, I need what?
I became an ostomate on August 20, 2019.
When my surgeon, Dr. You at MD Anderson, explained to me what an ostomy was I was…bewildered? I can’t even recall exactly except to say that I thought to myself, “Oh yeah, I think I’ve heard of that before, I’ve seen that before I think.” I was told I would have a bag, most likely temporary, and that I would be reconnected once I had healed from surgery. As I focused on finishing my chemotherapy and radiation treatment, the surgery was always looming in the back of my mind. I knew it would be the last and final (hopefully) thing I would endure. It was also the scariest. The most anxiety inducing.
August 20, 2019 – in recovery room right after surgery at MD Anderson
As August 20, 2019 approached, I set off to Houston, Texas to begin the flurry of pre op appointments. In the meeting with my surgeon we went over my recent scans and the plan for surgery. She urged that I needed to be mentally prepared for either outcome: a temporary ileostomy or a permanent colostomy. Wait, what? What happened to the reconnection? She ever so eloquently explained to me that my tumor was not super low (7cm up); however, she would not know until she got in there and started looking at margins how it would all go. She possibly might have to cut out more tissue to get clear margins. Radiation had also caused significant scarring that could be seen on the scans and would have to be worked around. We discussed a lot in that meeting: margins I comfortable with, margins SHE was comfortable with, quality of life with and without the bag. I left that meeting more flustered and nervous than ever. On top of anxiety over surgery I was also dealing with the uncertainty of how it would all unfold. I did not expect so many decisions having to be made intraoperatively.
One thing did stick out in my head. In the discussion with the surgeon, I latched onto her telling me a permanent colostomy involves the large intestine and would be located on the left side of my abdomen and a temporary ileostomy involved the small intestine and would be located on the right side of my abdomen.
Left side = colostomy
Right side = ileostomy
Left side = permanent
Right side = temporary
I managed to make it through the twelve hour surgery (alleluia) and woke up as I was being wheeled back to the recovery room. As you can imagine, I was super drowsy and out of it from anesthesia but felt no pain. In the recovery room there was a flurry of activity around me, nurses talking to each other and to me and hooking up machines. In an instant, I heard one nurse say to another something about watching out for my colostomy.
Colostomy.
She said the word colostomy.
Permanent.
In what felt like a second later, the surgical fellow came by to see me. A young curly haired blonde woman, I swear she lived at the hospital. She would often do her rounds at 6am and then would stop by my room later that evening. I looked at her groggily as she stood at the foot of my bed. She explained that the surgery went very well and they were happy with the outcome. They expected pathology to come back in a few days.
I just stared at her, “Is my colostomy permanent?”
She looked at me for what felt like an eternity (I think she was surprised I was already asking) and said, “Yes”. I can’t even recall what my reaction was. I was still trying to understand what was going on. She continued, “Catherine, you are going to live a long life. The surgery went very well. You are going to live a long life and you can do that with a colostomy. You will do everything you did before this. It will be ok”. I am paraphrasing obviously as I do not remember word for word what she told me but I remember her repeating over and over “you are going to live a long life”. I’m pretty sure I did not cry, I just sat there trying to comprehend it all. We finished our conversation and she left.
The first person to come back and see me was my husband. He later told me he wanted to be first so he could break the colostomy news to me. I think the first thing I said to him was, “The colostomy is permanent”.
I already knew.
I spent the next week in the hospital recovering and fully ignoring and pretending the ostomy was not there. At first the nurses thought this cute and funny. However, as the week progressed I had one nurse tell me I was going to have to do a bag change on my own and get some training before I was sent home. Ugh. They would let me ignore it no more.
I guess I am writing this because I have been struggling lately. Honestly, I haven’t had a lot of issues with my colostomy. It kind of just…works. Mentally; however, I have been having a hard time. Sometimes the weight of having it be so permanent is overwhelming. I will live my life with this ostomy (God willing) for more years than I lived without it. The thought of having to spend the rest of my life with this bag attached to me gets overwhelming. I will never leave the house again without worrying if I have enough supplies or extra clothes.
Artwork by @emjayuc
For the most part, if you saw me, it is not obvious I have an ostomy. Yet, it’s a mental (and physical) weight I carry with me everywhere.
Can other people tell?
Can they hear the bag rustling?
Do I smell?
Is it obvious in a swimsuit?
How do I talk to my kids about this?
Do people think I am gross?
For a long time I felt I was just trying to get accustomed to this post cancer life. I did my best to lean back into life and the day to day responsibilities of being a wife and mother. But sometimes things just feel heavy. They have felt heavy for me lately. Maybe it’s the quarantine, being cooped up and the uncertainty of what life looks like in the months moving forward but I have been struggling.
I yearn for the carefree days of wearing whatever I wanted whenever I wanted. I mean, let’s be honest, I was not rocking bikinis or midriff baring shirts in the first place. However, now I am trying to dress a body that not only has morphed in size and shape over the last year but now I am dealing with dressing a body with an ostomy. Pants and shorts sit differently on my body. Clothes in my closet no longer work on this post cancer body.
Artwork by @amjayuc
When I was a kid and would complain about things my grandmother would often tell me to “offer it up”. I have thought about her a lot lately. I try to keep in perspective that I survived stage three, almost stage four cancer. That these scars at least mean I’m still alive. That someone certainly has it worse than me. That I should be thankful my cancer responded to the treatment. That I haven’t had a ton of issues with the ostomy.
Just because I carry it well doesn’t mean it’s not heavy.
As I begin to get back into journaling, I’ve been reflecting on what word I’m going to focus on this year. [Yes, I realize it’s already May and I’ve got a late start.] I keep coming back to the word grace. Not only the name of one of my best friends but also what I’ve been trying to extend to myself lately. I try to remind myself that my body is still physically healing and my soul might take a little longer to heal. I’m trying to give myself grace that I can sit in sadness about my ostomy but try to move through it. I remind myself that I am able to do everything I did before. Possibly with more supplies and baggage, but hey, I can do it!
I’d also like to be better about extending grace to others in my life. To live in a way where I give the benefit of the doubt that everyone is doing their best. That everyone deserves grace. That we all carry around our scars and baggage differently but surely it is there for everyone.
For whatever reason this season of life has just been tough for me. Post cancer life has been different and an emotional rollercoaster [amplified by menopause]. I am now navigating it in isolation and it’s just felt extra heavy. For now I’ll remember to give myself grace as I try to navigate the new normal going forward.
Wonderfully Wright 