Life Shi(f)ts
How routines change at the drop of a dime...
Not only is March Colorectal Cancer Awareness month but also my cancer-versary of my Stage IV diagnosis. Two years ago I joined a club unknowingly but there I was waking up in a hospital room with surgery the night before and my membership started after reading MyChart post op notes. The first thing that popped up in my head was we got to the ER only three days ago and that my last meal was just the day before - Boludo pizzas, caesar salads, and bodinos, go figure. I realized that I also had one of my friends that were to be attached to me for the next couple of months. If you recall, that initial surgery couldn’t remove the 7cm cancerous tumor but introduced my new friend, Tomás - the ileostomy, my new way of pooping. On a drop of a dime, my life changed and that first weeks and months was trying to understand the chaos of cancer and my life with Tomás. A few weeks later, Portia the port-a-cath came into the picture.
Two years later after a year in remission, my cancer story took a different turn. Here I was with lymphangetic carcinomatisis, small nodes in my peritoneal cavity, and a partial bowel obstruction that both have some cancerous concerns. The first three months of 2024, brought on many ER visits and hospital stays than I’ve had in the last two years. I should have gotten a punchcard of some sorts because I got to know the ER team at MHealth Fairview at the University campus really really well.
This partial bowel obstruction diagnosis was the life changer. I was throwing up non-stop for days and didn’t know what was the cause. I eat and drink and throw up. Eat and drink and throw up. I got to know my stomach bile which was the same color, smell, and consistency, regardless what I was eating whether it was my go to at Big Bowl - calamari, white rice and cold noodle salad, or my beloved cheeseburger and fries from McDoo’s and any Five Guys hacks. Let me tell ya, I got to know every nook and cranny of our newish Toto bidet that we installed the year before in our bathroom reno.
In my third hospital stay of the year - this one in February, I ended up getting another NGtube - my worst enemy - before they decided to place a gastric tube, also known as a GTube, at my stomach to drain the pressure of nausea and vomiting after two hours every time I ate and drank. The GTube, was installed by Interventional Radiology - a very precise surgical team that uses technology to do complicated procedures - new to me as a medical team. The purpose of the GTube was to vent my stomach. It was not a feeding tube for me by any means but for pediatric patients. Say hello to GiGi my new friend who joins Portia the port-a-cath on my body. If you are wondering where Tomás is, he was removed in August 2022 as part of my CRS/HIPEC procedure. It is like a revolving door around here! I had to get used to working with GiGi and understand when I can release and flush my tubes. I didn’t get the hang of it at first and started to get dehydrated the first couple of days. I was still vomiting intermittently which concerned Jeffry and I. Why wasn’t this working?
The GTube procedure and partial bowel obstruction continued to dehydrated me so bad that I was losing weight fast and started to feel more and more dizzy. I recall that week being on a work zoom call with prospective clients and I got so excited being part of a design presentation I blacked out for seemed longer than a second while I was talking. I immediately texted my colleague on the call to tell her what happened and that I may have to pop out as I was getting more nauseous and lightheaded. Ugh. This was the first time I felt my cancer was getting in the way of what I love doing. What the fuck. I worked so hard mentally and physically to avoid anything getting in the way of my life and here we were.
We went to the ER right after an chemo infusion the next day - this was a week after getting my GTube - and got admitted to an oncology room twenty four hours later. We were the lucky ones that day. Some people in the ER were waiting a full three days to get rooms. I hadn’t eaten anything orally in weeks and have been on a liquid diet for some time to alleviate the vomiting and nausea. I was getting weaker and weaker. Once I got checked out I was immediately put on fluids with nutrients to get my body balanced out. It took a couple of days but the million dollar views of the Mississippi River from my hospital room made up for it! In that hospital stay, I had some major complications between my dehydration/malnutrition to cardiac concerns. Working through all of that my whole care team was all hands on deck and felt well cared for.
There were many solutions my care team discussed. The goal was to use my digestive system to continue to intake food and liquids as much as we could. We consulted with everybody imaginable - gastro-intestinal, interventional radiology, colorectal surgery, oncology, nutritionists, cardiology, the hospitalists, you name it, we consulted. I was very grateful that I was being monitored by so many many people who wanted the best for me considering my health and condition and most importantly my outlook on the situation.
We ruled out surgery to clear the partial bowel obstruction because that would take me off of chemo for 2 months which as we found out in December, when I was off chemo for 3 weeks my lymphangetic lungs were blooming causing me to have severe shortness of breath and having to rely on an oxygen tank for two months. Something that my care team didn’t think I would get off of - but I did it. No more oxygen tank to hold me back.
They wanted to add a JTube to the GTube - there is a rap in there somewhere. The JTube is a jejunum tube that would by pass my stomach and bowel obstruction and go straight into my guts to continue digesting and processing food and liquids. The team decided not to do this as the JTube placement was to far of a surgery risk.
TPN. TPN. TPN. I didn’t know what this meant for a long time in the discussions till I looked it up on Dr Google. All I knew was that this stood for Target Plaza North, the smaller of the two Target HQ buildings in downtown Minneapolis. The building that I spent most of my Target career. TPN in this case stood for Total Parenteral Nutrition, a whole new comfort introduced in my life. This was a three liter IV bag full of nutrients that would be administered through a pre-programmed pump for a determined amount of time usually 16/14/12 hours overnight. This would be permanent and usually paired with IV fluids. A last resort of sorts. This would take away using my system to digest food and liquids as well as ingest nutrients into my system naturally. Could lead to atrophy in my digestive system as well as other complications that compounded on top of each other.
We ended up going with TPN as I was getting worse with malnutrition and the two other options weren’t in the cards due to the surgery and cancer flare up risks. We started my fluids and TPN ASAP. After four more days of a ten day stay on both, my body was feeling better but I could tell how the last week was taking a toll on my body. My skin was dry and wrinkly. I was looking a little grey. The bags on my eyes were more pronounced. I was moving slower. I was 139lbs - typical weight is 150-155lbs. I wasn’t myself. I hated it. I hated it. What didn’t sink in is that I wasn’t allowed to digest orally - maybe permanently. What do you mean I can’t eat? What the fuck is right. I couldn’t take this in yet. I felt for a couple of days that this could be the road to the end. I really felt this and haven’t felt this in the last two years ever. I got really depressed thinking through this and what it could mean to my life as i know it. The silver lining in all of this is that Jeffry got what he’s been wanting for years - a basement fridge of all things. With this new feeding routine, we are delivered boxes and boxes of TPN and fluids every week and there was no way we could fit all of this in our main fridge. I know the little things right?
On a dime, life changes, but I like to think that nothing is forever.
Today, I am about a month out from my GTube placement and the start of my TPN/fluid treatment. Jeffry and I have learned the specific timing needed for TPN 14 hours a day and fluids 6 hours a day as well as GTube venting almost every two to four hours. I’ve ventured back into the office with my satchel strapped crossbody holding my eight to ten pound sack of fluids. I’ve driven a couple of days which I haven’t done since end of December 2023. I realized that why I want to eat is to be with people and to taste food. I can do that. So I decided to chew and spit my food when I am having the craves. I know it sounds disgusting but if this is the only way I can still lead a life and socialize, I am doing it the way I know how. Jeffry’s family was in town the last couple of weekends and I took it as an opportunity to test it out in public. I asked for a coffee cup and that was my spitoon for the meal. Looked like I was sipping on a beverage but I was spitting up my macerated food without people knowing or staring. I still enjoyed my meals that weekend - fish and chips, ribs and rice, baked pancakes - but didn’t swallow. This chew and spit method, I also realized produced more stomach juices when I would GTube output, something I had to be conscious of as I balance my daily liquid outputs versus what I was putting in with TPN/fluids.
There were days in the last three months that really got me down. Here I was coming off almost two years of some challenging times that I managed to get through with flying colors. Now, I was in hospital beds alone for long periods of time, thinking more about my mortality and the inevitable end. I didn’t want to dwell in this space for very long, but I knew I had to accept it at that moment but took the time to get out of it realizing how lucky in all aspects of my life despite this boulder on my shoulders. In one of my weekly leadership meetings at KNOCK at the end of the year, my mantra for 2024 was to take the setbacks that were given to me and make them comebacks. This popped in my head many times to get me back to square one. I mentioned it in one of my infusions during a zoom call and one of my nurses came back and said that she really appreciated my outlook on my situation and what I was going through and quoted my “setbacks are my comebacks” quote. Bawling right now just thinking of that moment with her.
During this time, I also had to say goodbye to Portia, the port-a-cath and say hello to FricNFrac the new port with two lumen access, also known as a Hickman line. This access will help prevent any more needles in my arms to get blood or do chemo. This way there is a line for everything that I need. By the way, I didn’t realize how emotional I would get when Portia was removed. She really got me through the hardest two years of chemo and was a lifesaver. I’ll always have her memory on my right chest. Maybe it is time for new tattoos…
I have to be reminded by Jeffry and my care team how much my body has endured the last three months but the last two years. I feel like I am getting my bearings back but it took a lot of physical effort and mental balance to get where I am today. We are hoping for uneventful days and weeks. Feeling the freedom of driving again has gotten me to familiar places and being part of life again - it is the small things. Now I just want to get outside and walk more. What the last two years and the after affects of pandemic has taught me was to prioritize what I want to be part of and what I am OK letting go. My eating situation is still a challenge but I know that I can still be with the people I love and be around food, but it is a different relationship - and yes I am still watching food videos - what can I say, I am a sucker but it does give me joy when i see people cook and eat. Maybe there is something there that I can harness? What I do know is that I’ll take all the good things that come my way whether I manifest or not, because as we know, things can change at the drop of a dime.
I leave you with this Dhiman quote that spoke to me as I wrote this update.
“Each day is another opportunity for you to live your life a little less afraid, to choose yourself, to listen to your own heart and not what the world says. Don’t let your struggles and difficult days plant fear in your hear, my friend. Don’t let your misfortunes tell you that you do not deserve anything else. Remember: if you dare to believe in yourself, new doors will open; if ou choose to carry on, the chances will come again. One day at a time you just have to hang in there through it all and trust that when the right time comes, life will unfold the best way.”
Sending you and Jeffry so my love and light. Thank you for sharing your story, strength and hope. ❤️
💚💚💚💚💚
(M.W.)