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!
A few years past my diagnosis and surgery I have finally begun to process a lot about my cancer and ensuing treatment. Make no mistake about it, rectal cancer treatment is awkward and weird (for me at least it was, but I don’t let that shame own me anymore).
There are quite a few instances of things that stick out in my head: the rectal examinations from different doctors (so many), rectal contrast, having doctors constantly coming in the room to ask if you can roll over so they can look at my butt and ‘flap’ (this is what they called the reconstructed part of my vagina). Oy vey, I do not miss the hospital!
Rectal cancer is not funny. At all. But I would be remiss if I did not think back to some moments during my journey and laugh.
…coming out of the bathroom on one of those first visits to MD Anderson and exclaiming to my husband and mom “I pooped!” They both cheered! At first we thought a stent might have to be put in so I could continue to pass stool…that never happened…
…My surgeon, Dr. You at MD Anderson, reminding us this was going to be a marathon not a sprint, to which my husband replied we really don’t even like walking out to check the mail…
…the time after surgery when I commented I literally never had a reason to get up with my ostomy AND catheter both in. My husband immediately remarked how wonderful this sounded and confided he was jealous!
The truth is, medical providers giving you this treatment have done this so many times. It’s my hope in sharing this that we realize the worst things that happen to us, we can get through. We can endure. Often times in the moment with tears and anxiety and afterwards with tears of relief and laughter. Not always. But sometimes.
It was a few days after surgery and my team had finally removed my catheter. I was expected to pee a certain amount to signal my bladder was working. Initially, I thought nothing of this. However, as the day ticked on, the nurse came back in and casually mentioned catheterization if I couldn’t pass a certain amount of urine.
That’s definitely going to hurt. I started drinking water and began to slowly realize that…my bladder was not working…I couldn’t really feel any sensation of having to pee. A lot was going on post surgery, so it took a while for this to dawn on me. As the hours wore on, I became increasingly anxious of having to have the catheter put back in. I know it might seem silly, but all these little things I viewed as set backs and it was hard not to spiral. I dedicated a lot of time sitting in that bathroom with various audios of rivers and streams playing. I willed it. I meditated it. I remember at one point David followed me into the bathroom and told me to calm down. I remember turning back around and exclaiming, “Don’t tell me to calm down, its not YOUR body!”.
At some point I realized my body was not doing this naturally and paged the nurse. An ultrasound was done on my bladder, which confirmed lots of pee. My bladder wasn’t working. The nurse indicated sometimes the bladder took longer to wake up from surgery and they would just catheterize me to give me some relief and give my bladder more time to wake up. Don’t worry, in the small time frame here I did lots of google searching. No message board was left untouched. The nurse asked if she could bring another female nurse in to help. Sure I thought, invite the whole floor please.
The nurses came back to the room and I entered full blown panic mode. It was going to hurt and I knew it. I knew it. I had my legs spread, my mother holding my hand on one side of me and my husband holding my hand on the other side of me.
“Do you mind if we tilt your legs up some? It will let us see what we’re doing better…”…..Sure I thought…perfect….my legs are now spread, tilted upwards somewhat with my mother holding my hand on one side and my husband on the other. As I prepare for mutilation, I suddenly hear they are commenting it’s working. The bladder is draining.
“Oh, I didn’t even feel anything,” I said relaxing my death grip.
“Well, then that means we did it right,” the nurse laughed back.
Of course I was embarrassed for making such a scene about it but the nurses were very kind and understood. Edit to add I always had good nurses. A lot of them were young and my age it seemed. I remember one writing me a special note on my board before she got off her shift when we didn’t see each other.
None of it was done gracefully or bravely. It was done messy through anxious tears and anger. Honestly, I sometimes still can’t even believe it happened to me. It’s been a lot to grapple with, the road taking that twist you never expect. I guess it’s the one thing we can come to expect. It will toughen you up for sure, but hopefully you can find some laughs 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.
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.
She said the word colostomy.
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.
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.
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.
The below post I wrote in January 2020 while awaiting scans at MD Anderson in Houston.
This week I am back at MD Anderson in Houston for follow up appointments and my first round of surveillance scans post surgery. Being back here in Houston and at my aunts house brings up so many emotions. The last time I was here was the end of August for surgery. I think about the physical and mental state I was in right around surgery. That was tough. Not only was I physically uncomfortable and in pain but I think about how riddled with anxiety and fear I was right before surgery. I recall sitting in this exact room a little less than four months ago guzzling down bowel prep in between my tears. My husband, sister and sister-in-law huddled around me assuring me it would be ok. Unimportant things I was worried about regarding surgery: anesthesia (very worried about this, turns out it will likely not kill you), the catheter (very sure this was going to cause immense pain both going in and coming out – spoiler alert- it doesn’t), stitches from surgery (again, very concerned about pain -spoiler alert-they dissolve on their own). Can you tell I had never had surgery before? Things I should have been worried about: clear margins (got those), colostomy bag (got that too), more organs coming out than expected (happened). But alas, everything turned out ok!
All of this has got me in serious retrospective about the years leading up to diagnosis and what my symptoms actually were. Of course I had symptoms where the cancer reared its ugly head; however, I was pregnant and postpartum so it was easy for me to brush them off. First off, let me remind you I had stage 3C RECTAL cancer. I had to do so many physical exams and scans and getting undressed and being uncomfortable about talking about my most intimate parts that I think I could walk down the street naked now and not care. So if anything surrounding rectal cancer and bodily functions makes you squeamish, exit now! Don’t worry, I’m going to spare you my most intimate stories (I save all those mortifying stories for my husband) but there is your warning.
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. Again, I was pregnant so I chalked this up to pregnancy constipation. It was mostly an annoyance because the last few months of pregnancy it really began to disturb my sleep.
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. I recall a few times there being blood when I went to the bathroom but never enough to be alarming. I had always thought that bright red blood was a sign of hemorrhoids. After the birth of my son in December 2015 I did complain about hemorrhoids to my OB but no one ever did a physical examination to check.
Weight Loss – With both of my pregnancies I gained about 30lbs. After I gave birth to my daughter in July 2018, I noticed I was steadily losing weight. Not in an alarming way but every time I got on the scale I had dropped a few pounds. However, breastfeeding was going so well (unlike my first), so I figured this was the weight that just “fell off” from breastfeeding.
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 had been feeling extremely run down and tired, but I was pregnant and running after a toddler, of course I was tired! 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).
Of course typing all this out I feel like the biggest idiot for not going to a doctor with these symptoms. What the hell Catherine?! Everything came on gradually and by the time I was diagnosed (thank you access around my tumor for saving my life, you can read more about diagnosis here) I was suddenly dealing with an onslaught of these symptoms all at once. I think it was a case of knowing I had this tumor so all the sudden these symptoms I had been dismissing were magnified. When I look back at this timeline of my life I can clearly see the storm brewing but at the time, I couldn’t.
I don’t write this to scare anyone at all. I just write this in hopes in helps someone else in the future. Never in a million years did I think I would get cancer.
I was healthy!
I worked out regularly!
I was a vegetarian!
I didn’t have a family history of cancer!
I had no risk factors for this type of cancer!
My genetic testing showed I had no irregular gene mutations!
I didn’t have a complicated medical history at all!
I had never even had a surgery before for God’s sake! Nonetheless, I had cancer. It happened to me. Somewhere along the line my body started making these cells at an excessive rate. Was it because I drank heavily during my depression? Was it because I drink tap water? Was it because my diet wasn’t healthy enough? Was it from chemicals in my food? I have beaten myself up over this for over a year. What could I have done differently to prevent this? Why did my body betray me? I guess I’ll never know. Maybe I will. Who knows. I’m trying my best to not live in the past.
The only advice I can even offer is that in the end YOU know your body. I didn’t have to deal with doctors dismissing me; however, if a doctor ever does dismiss you or your symptoms, find a new doctor! Since being diagnosed with rectal cancer, every colorectal doctor I have seen has told me they are seeing more cases of colorectal cancer in patients younger than fifty years old. (I mean, maybe it has to do with all the glyphosate they allowed into our food system in the 80’s but I digress…). People younger than fifty years old are generally not getting colonoscopies so by the time the cancer is found it is often already at advanced stages. Like mine. Be your own advocate. My brother (who is a doctor) told me once that’s why they call it practicing medicine, no one knows it all. All doctors are not created equal, search out the best team. Pay attention to your body. It might just save your life if you listen close. I was lucky enough to find a team of doctors that helped save mine.