Okay, okay. Alright. Hello.
So, there were a few different ways I could have done this. I wanted to update those who were interested with the latest details of my upcoming (and long-awaited) bowel surgery, and rather than
a) posting an update on GoFundMe (which I may do in addition to this blog post);
b) writing a group e-mail to the small handful of people I have e-mail addresses for;
c) posting a status update hoping it reaches the right people at the right time; or
d) texting & messaging people individually to let them know what the deal was…
…I decided to write this. For everybody – for anybody who cares to know. Be prepared – this post is going to contain a lot of VERY intimate butt, poop, and sphincter talk!
My surgery with Dr. Buie is scheduled for this Thursday, May 12. The actual title of the procedure is called a “laparoscopic low-anterior resection, with possible stoma”. I am having my rectum removed (which is actually just the name for the lowest part of your colon), and my colon resected. My admission time is 5:15 am ~ it will be a wake-up-and-go typed sort of situation, and will probably look and sound something like this (WILLY NILLY):
Yesterday, I spent a couple of hours at Foothills “running errands”. I picked up my “bowel prep medication”, Pico-Salax, an “oral purgative” – it’s an orange flavored powder that heats up the water you dissolve it in. Wtf? It was an over-the-counter thing, and it wasn’t covered. I didn’t like that.
Afterwards, I wandered over to the medical day care unit, and had my port flushed. This is where they “click me in” and flush the device implanted in my chest with saline and air, to make sure it’s not filled up or clogged with junk. This is what it looks like when they do that:
Then, I found my way to the hospital laboratory, where I got some bloodwork done. They slapped a yellow waterproof bracelet on my right wrist that has to stay on for an entire month. The information on it tells whoever needs to know what type of blood I need in the case of an emergency blood transfusion.
Today, I met with an ET nurse. An ET nurse is an Enterostomal Therapy Nurse, who is a nurse with advanced and specialized knowledge and clinical skills in wound, ostomy and continence care. We sat down in her office, and talked about everything ostomy-related, since there is a slight chance that I might wake up with a shit bag attached to my abdomen. She made me sit, and lay down, and move my body in all of these different ways in order to mark where the most appropriate place would be to create a stoma on my tumtum.
So, here’s what I learned today. An ileostomy is when a stoma is created with your small intestine. It can be considered temporary, and it can be reversed. It’s purpose would be to stop my shit from passing through my recently resected colon, allowing it to heal without any unnecessary trauma or additional risks.
A colostomy, on the other hand, is when a stoma is created with your large intestine. A colostomy is usually permanent, and can be created when a person has undergone a surgery that has resulted in the loss of the proper functioning of their frigging sphincter – i.e., when a person’s tumor is located so low down in the colon, that surgery involves fucking with your asshole muscles. Yep. I really want to laugh, because that’s how I’ve been dealing with everything thus far, but I feel like laughing, internet-styles, would be really disrespectful to anybody who lives with a colostomy bag, or knows and cares for someone who does. So I will do my best to refrain. *stifled snicker*
Okay, so, the information I’ve gathered so far – from dozens, and dozens, and dozens of people carrying dozens, and dozens, and dozens of different professional titles – is that the size and location of the tumor located in my sigmoid colon makes it so that my surgery will be able to be performed without having to cross that particular “surgical boundary”, meaning it is not likely that I will need to live with a colostomy bag for the rest of my life. AND, since my body’s response to the neo-adjuvent treatment I completed over the past several months was so extreme, I’m hoping that the chances I will wake up with an ileostomy bag will be even lower.
Dr. Buie wanted me to meet with this ET nurse to have the proper markings put in place on my stomach, just in case he needs to create a stoma – that is, depending on how he feels about the colon resection itself. In the end, it’s up to him, and the assessment of his own handiwork. My naturopath brought up a good point during a meeting with him a few weeks ago – he said to wake up with an ileostomy bag would be a relief, as it would take away any chance of the resection busting open and any sort of fecal matter drifting into my body – hello, sepsis. Hello, additional emergency surgery. However, waking up without one would also be a huge relief. Having this ileostomy “temporarily”, in cancer-care speak, means I would be living with this contraption attached to my body for about a year before it could be reversed – not because my colon wouldn’t be fully healed before that, but because since “they” are too busy creating stomas for other cancer patients, reversing mine would be considered a relatively low-priority procedure. Cool. Cool cool cool cool cool cool cool cool cool.
If you’re confused about wtf a “stoma” is, and if you don’t have a super weak stomach, Google it. It’s basically creating an external butthole on your stomach. In a sense, I will be slightly disappointed if I don’t wake up with a butthole on my stomach – I’m alright with temporarily adding that to my list of hilarious experiences in this life (once again, I’m so sorry if you have one or know someone who has one of these things and doesn’t find it funny. I kind of do. For me. Personally.)
Alright – so, shit bags aside: today, Tuesday, is my last day to eat anything. I have until midnight to put anything in my mouth that isn’t a “clear fluid”. I’m not entirely concerned about this, since I spent three months practicing something called “insulin potentiated chemotherapy”, where I fasted for 24-48 hours prior to chemo infusion, which is when I would binge on refined white sugar to increase the efficacy of “treatment” (this was suggested to me by my naturopathic oncologist). I think it worked! Starting tomorrow, I will be drinking nothing but clear fluids. Here is a handy list of allowed items printed on the pamphlet included with my laxative:
- Plain water
- Fruit juices without pulp, such as grape juice, filtered apple juice, and cranberry juice
- Soup stock (bouillon or consommé)
- Clear sodas, such as ginger ale and Sprite
- Gelatin (Jell-O)
- Popsicles that do not have bits of fruit or fruit pulp in them
- Tea or coffee with no cream or milk added
- Sports drinks such as Gatorade
- Padialyte or Gastrolyte
Unfortunately, a lot of those things have a disgusting amount of refined white sugar or super ugly synthetic sugar substitutes in them, so here is a modified list of things *I* will be ingesting (obvs the misc. chunk of citrine is SUPES important):
- Fresh spring water I harvested with my own two paws in Canmore this past weekend (I’ll be writing a little blog about this soon)
- Rich, nutrient-dense, organic, home-made, grass-fed/finished bone broth that has been simmered in my kitchen for a long, slow, delicious 18 hours
- Organic apple juice – juiced by moi
- Organic coconut water not from concentrate
- Organic TeaPops popsicles
- Home-made “Jell-O” made with Vital Proteins pasture-raised beef gelatin (thank you, Light Cellar, for existing) ~ this is a new project for me, and I will be reporting back with how the experiment went
- Various “safe”/basic herbal teas, since the peeps at the hospital don’t want me drinking any kind of “mischievous” herbal concoctions… so unfortunately, my beloved chaga mushroom and hand-harvested dirty dandelion root tea are off the menu for now.
Tomorrow is also the day I start purging my bowels. There are two packages of this laxative I am expected to take – one between 8 and 10 am, and the other between 4 and 6 pm. I will not be leaving the house as I will probably have to poop every five seconds (Lacey and Amanda – prepare yourselves). The day of surgery, I have to be sure to drink 2 cups of juice exactly three hours before my admission time: “cranberry cocktail”, or apple. Obviously, because I will always be this way, I will be juicing luscious organic apples myself at home and will enjoy it the same way someone who loves dessert would enjoy creme brule or cheesecake.
Tristan, his mom Peggy, and my Mom will be meeting at our place Thursday morning. From here, we will walk up the hill to the hospital (for those of you that don’t know, Tristan and I live about a 7 minute walk downhill from the Tom Baker Cancer Centre. I’ve always thought about how weird it was that we found this place before I was diagnosed, as I had no idea I would be spending so much time there!). From my experience with my port surgery, I will have to get nude (not a problem, obviously); slip on a super sexy hospital gown and cap and booties; remove all of my jewelry; and take an idiotic selfie or ten in the mirror. Then, I stick my personal belongings in a locker, and walk myself into the operating room to meet my maker. It’s very much like in the movies. It’s slightly terrifying.
I’ve never had anesthesia before. I’m kind of excited. It’s weird to me how this procedure, of which there seem to be many “unknowns”, will be over in what’s going to feel like the blink of an eye. The surgery itself should take Dr. Booboo (yeah, we’ve been calling him Dr. Booboo since the moment I met him last December, because we had been forced to meet SO many people and their minions that it was absolutely impossible to remember everyone’s name and what their role was). Anyway… it should take him anywhere from 1.5 to 3 hours – afterwards, I will be in a recovery ward for another 1-2 hours while I “wake up”. From there, I will be wheeled by a porter to my hospital room, where, hopefully, everyone will be waiting for me. I hope I’m super high and say really funny things. Speaking of porters, here is a video I took of my hospital “ride” after I had my port inserted. It kind of feels like being in a video game.
I should be in the hospital for about five to ten days. I have a slight amount of PTSD from my unexpected (and totally unnecessary) ten-day hospital stay last December, so I’m trying to do my best to prepare in order to make it as stress-free as possible. When I head down there to be admitted on Thursday morning, I have been instructed to bring only the necessities – my identification, my medication, my glasses, my fuzzy leopard-print house coat that I bought in Portland a few summers ago, etc. After I have been moved to my hospital room, I can have more of my personal items brought to me – meaning, a large suitcase full of tea, bone broth, filtered water, home made almond milk, manuka honey, all of my crystals, my salt lamp & LED candles for ambiance, my favorite blanket, all of my my books, all of my movies, my laptop, my portable battery pack, my camera, my coloring books, my journals, my lip balms and body lotions, etc, etc, etc… those of you who know me well will be able to picture exactly how this hospital room is going to look: a fucking new age witchcraft gongshow.
Once I am discharged and get to go home, my involvement in “the system” is far from over. Four weeks post-op, I have a meeting with my oncologist to go over the results of my pathology report – aka, the information they gathered after putting the tissue they removed during surgery under a microscope and learning how “differentiated” these cancer cells really are. This is what is going to determine whether or not Dr. Easaw recommends additional, adjuvent treatment – ie., chemotherapy. I’m not entirely certain what I will decide, as it is up to me in the end, but I’m trying not to think about this conversation too much right now. I’ve learned it’s more emotionally manageable to take things step-by-step, and that step hasn’t arrived yet.
A common question I keep getting from people is if, after surgery, all of this will be “over”. The answer, unfortunately, is that none of this will be “over” for at least five years. After any adjuvent treatment has been completed (hypothetically), and my (hypothetical) ileostomy has been reversed – I will be required to participate in yearly diagnostic imaging (ie, CT scans and bloodwork) to monitor the possible progression, or the possible remission, of cancer cells in my body. After five-years of no additional or suspicious cancer growth, I can officially be considered “cancer-free” and “a survivor” (by life insurance standards, anyway). Side note – I’m sure many people might consider themselves “cancer-free” or “a survivor” by different means of time measurement or imaging. And that’s fine too.
Another common question I keep hearing is in regards to what is expected of everyone while I am going through all of this – or, “what can I do to help?”. I’ve learned that it’s much easier to just SAY what I need, as doing so seems to be far more helpful than it is considered a burden to people who are interested in being supportive. It’s like, knowing someone or being connected to someone who is going through something like this makes a large majority of people really uncomfortable, and they seem to be looking for direction all the time, or instructions, on what to do, and where to be, and how to act or behave. Sometimes I can get super frustrated with this, before I remember that this whole thing is not only challenging for me, but difficult for those around me in the sense that they are learning how to cope with it as well, in a much different way than I am – as a support person. Earlier this month I got myself into a huge motherfucking pickle when I had a little freakout regarding everybody asking me the question, “So how are you feeling?” as the opener for every conversation ever – but I’ve come to realize that these people are only offering what they think and feel is the most supportive and compassionate way to offer support. So for those of you who are wondering what you CAN do to help, or for those of you who were totally scarred by my aggressive failed attempt at trying to communicate my emotional needs as a human living with cancer, there are two things:
1) Food/Bone Broth
I don’t know how to start expanding on this topic without sounding like a stuck-up little twat, but this is the most IMPORTANT thing to me, ever. Ever. EVER. Although I learned that the hospital’s vegetarian menu is five thousand million times better than their standard omnivores menu, I will be depending on friends and loved ones to bring me so much food. For the first few days, the hospital will only be offering me conventional salt-and-MSG-laden chicken or beef stock; as I mentioned earlier, I have a gigantic pot of bone broth simmering on the stove that I intend to let go for the next 18 hours before adding a shit ton of sea veg and portioning it into mason jars. Any other bone broth recipes would be graciously accepted; Kelowna’s Boned Broth Company makes little cardboard containers of beef and chicken broth that can be found in the freezer at Community. Osso Bueno is a local company that makes both beef and chicken broth and sells it in glass mason jars in the freezer at Amaranth on 4th Street SW. There are tons of recipes for soups made with bone broth out there on the interwebs – I will take any and all of it. When it comes to other food, we can chat directly regarding the nit-picky details so you can judge me in private 😉
Ah, yes – I will need as many people as possible to feed, love, walk, kiss, shmooze, and snuggle the pugs, as well as pay some attention to our hilarious and amazing hairless guinea pig, Archie. If you are willing and/or able to give some love to my babies while I am away from them and act as a correspondent from my home base at the bottom of the hill regarding their welfare… let me know and I’ll give you the details. 😉
Alright everyone, this post is a little bit ridiculous – just my style. Please get in touch – I have a gigantic external battery pack so that I can charge my phone nearly endless amounts of times from my hospital bed without moving, so please please text me and I will respond with disgusting post-op selfies. Visits are welcome; beautiful flowers are welcome (how about dem lilacs, eh?!) ~ blaaahhhh blah blah.
For closure, here is a video I took of Kioja at the Calgary Zoo last week holding her little baby girl – Kimani, Tulia, or Maisha (you can vote on which name you like best here).
I LOVE YOU BYEEEEEEEEEE!!!!!!!
P.S. In case you needed a visual of what I look like right this second while chugging back this laxative from a mason jar, I’ve got you covered: