Happy Easter everyone. Hope you are having a wonderful time with friends and family. Stay Safe and Be Kind 💖 Me today, hair tied back but front still flopping about lol
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Let me start by saying I’m not looking for pity or attention. I just need to put this somewhere besides my husband’s ear cuz I don’t want him to stress or freak out …
I am so weak today.
I’ve never felt anything like it. I washed a few dishes and had to go sit down and rest. I barely had the strength to open a window.
This is fucked up. I have always been a very strong person. I don’t know what to do with this. All I can say is thank gawd there is only one treatment left.
Luckily for me, feeling tired most days now means I get to sit around at the beach. Sometimes I work on art projects that I’m going to give to people; sometimes I just people-watch from my RV. It’s a bummer to feel so exhausted all the time; but this is still the best place in the world! #ob #oceanbeach #starbrightsadventure #rving #rvliving #rvcamping #rvlife #sandiego #bucketlistadventures #rv #beachview #fuckcancer #cancersucks #cancerslayer #chemosideeffects (at Ocean Beach) https://www.instagram.com/p/Cia1Z3dvyP6/?igshid=NGJjMDIxMWI=
I’d like to put out a warning that this post has to to with my vagina and butthole and a little bit of sex (not butthole sex, I see how that could be misleading) but it’s all completely medical and the point of this blog is to show you what I’m going through and hopefully help other people dealing with the same thing so I’m putting it all out there with zero regrets. But I guess if you’re my dad, maybe skip this one?
The new chemo I’m on, Erbitux, also known as Cetuximab, is super drying. It dries out your whole body leading to acne and rashes and cuts similar to paper cuts. It’s a real fucking blast. So per the warning, over the last month I’ve experienced 20 new white heads a day around my chin and nose, alligator skin bleeding nail beds, bleeding pores after shaving, etc. What I didn’t expect was for all of my private parts to start dying.
Weeks ago I was at a wedding and I saw so much blood in the toilet that I thought I got my period, so I borrowed a tampon from a friend and went about my day, no biggy. When I took the tampon out later there was no blood. Ok that’s strange but my period has been all over the place on chemo so I didn’t think much about it. I soon realized that I was bleeding with bowel movements. Since being diagnosed I started getting hemorrhoids (also a fucking blast) so I figured that one was acting up and again, no biggy, I went about my day. Unfortunately weeks later, the bleeding had not stopped and the pain was increasing.
Now on to my vagina. I had sex recently (go me!) and I noticed a week or so later that my vagina was bothering me. To be honest, it wasn’t just my vagina but isolated completely to my clitoris. It was really sore, hurt to go to the bathroom and wipe, etc. I started to run through all potential reasons, like was I masturbating too much (hey, it happens, I live alone during a pandemic, it gets real boring), had my cancer spread to my vulva (it’s a real thing), did I get an STD? Let me say that I don’t date at all or have sex often and if I was going to get an STD like the one time this year I had fun with everything else I’m dealing with, that would be the ultimate disrespect!!! Luckily that was not the case.
After getting a GYN exam and a finger up my butt by a proctologist (you may think that someone with colon cancer is used to that by now but it was my first appointment when anyone was inspecting that area and I was not under anesthesia) the doctors determined that this chemo is so drying that it’s cutting up all of my special places. I have a fissure on my rectum and a small laceration on my clitoris. Are. You. Fucking. Kidding. Me. The advice was to get a bidet attachment to my toilet so I wipe less often, to apply aquaphor after going to the bathroom every time, and of course, use all of the lube in the world whenever you have fun times.
Chemo sucks, we all know this. It makes you sick and fatigued and generally feel like shit, but it’s these weird and seemingly random side effects that annoy me the most and shock me every time. For anyone who’s seen The Good Place, I imagine a small council sitting around a conference room table looking at all of the different types of chemo and deciding which bizarre side effects they would find amusing to add to each one.
I’ve had first bite syndrome where your jaw painfully locks up every time you take a first bite of something, only to go away immediately upon the second bite. I’ve had sensitivity to cold where slightly above room temperature water feels like shards of ice sliding down your throat. But I gotta say… a paper cut on my clit really takes the cake.
I didn’t realize that its been over a month since I last wrote something on here. So much has happened in the past month but yet it is hard to believe that its been that long already. I spoke to the other specialist doctors and really the only route I really could take was to get chemo again. I wanted to just do nothing and just enjoy the last years doing whatever. The doctor estimated that I would get 1-2 years but unfortunately I would not have good quality of life and be suffering because my tumors would grow and cause another block blockage for my bowels and my left kidney. I don’t want to spend my years suffering so then I just wanted to get the tumors removed but then that would guarantee a bag for my left kidney and a bag for my bowels plus need mesh replacement in my vaginal area. I am not trying to have any bags or anything outside and/or permanent so that wasn’t an option either. So I needed to go the chemo route.. The plan with getting chemo is that it will shrink the tumors a good amount to then be able to remove it surgically. This way, they should be able to keep my ureter for my left kidney connected to my bladder. As for the bowels.. if it shrinks a lot there is a teeny tiny chance that they will be able to reconnect it again.. its a super tiny chance because there isn’t much left to work with but its better than nothing. I am already trying to come to terms that I will end up with a colostomy bag since my luck sucks and I am tired of getting my hopes up for nothing.
Next comes getting a powerport put back in.. They still used the smallest one but this one for some reason actually shows/sticks out on me. Last time you couldnt tell I had one unless you really looked and touched. Now you can see the lump which means that no nurses should have any issues accessing my port this time. Really the only good thing having it show but it is definitely a plus. Before I had to have this one specific nurse access it and a couple of other nurses were able to get it. I had gotten poked multiple times because they missed it and had to do it all over it with the old one which is not fun.
As for the chemo regimen, I can’t get the exact same ones as last time because one of them caused super bad neuropathy (which is permanent but mild now) and will only make it permanently worse if I were to take it again. The one that I am going to take again is the one that I had to have it run for 46hrs before I could disconnect it. This one made me super nauseous while on it where I ended up throwing up multiple times..ugh. Then there are 2 drugs they are adding onto this. The first one has a big side effect of losing your hair.. 1/3 lose ALL of their hair.. the rest have some level of hair thinning. However, I lost 3/4 of my hair last time..on a drug that is only supposed to cause mild hair thinning.. granted i know some of it was because of the chemo they doused in me when I got HIPEC surgery.. but I still lost way more than typical which means that I will most likely lose all of my hair with this one... My hair that grew back long enough to actually do something with it.. I can’t even imagine being bald.. But at least people have no issues growing their hair back after chemo is done. The last drug has a like 80% chance of getting some severity of acneiform rashes which is pretty much acne like bumps that are red and filled with crust that can show up anywhere on the upper body but usually the face. I will be getting chemo for 5ish hours then go home with the long 46hour one every 2 weeks. They checked the size of the tumors right before I started chemo which was almost 2 months since and it didn’t seem to grow which is a good thing since I don’t want my stent to not work anymore. I have to go every 2 weeks and will get a CT scan every 2 months to monitor the tumors until they have shrunk enough to remove. This new combo of chemo drugs sounds absolutely awful. This is what I have to look forward to on top of all the other side effects I am going to have...
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Hey everybody! Hope everyone is surviving Summer so far. Texas is getting her last punches in, as usual, during August and September.
I got to spend the past week in a hospital twiddling my thumbs in boredom. Seems I have a Submassive Saddle Pulmonary Embolism, which is fancy doctor talk for a giant blood clot straddling the main branches of the blood vessel to my lungs. A couple of different Docs told me I am lucky it didn't kill me..
It ain't luck. God's just not done with me yet 😊.
Treating it with anticoagulant and I am already breathing better. Had to push back last Monday's chemotherapy a week but should be back in business this Monday. I am optimistic that the final two infusions of this chemo set will be easier on me since my shortness of breath and fatigue from the Embolism should be less of a contributing factor.
For now, I am just trying to take things slow until the clot(s) break down some more. If you're as old as me you'll get the following reference :)
It’s been an intense couple weeks with hair adventures! I had been growing my short hair out since July, mostly because I have been shockingly unable to find someone to cut my hair like my one-of-a-kind magical hair stylist Allison back in North Carolina. On Day 15 of chemo, my hair started falling out … like all out, all at once. After waking up Saturday morning, March 29th, Day 18, I called Rick screaming, “I have dreads! I have dreads!” He laughed in disbelief, and said, “Let’s take a breath…” In his words after the fact, there was a breakdown. On my end, of course!
Nonetheless he ventured out to four different stores to find a set of hair clippers. With everyone at home cutting their own hair these days of shelter-in-place, he struck out, and settled for a nice pair of scissors. He was stunned to find that I was indeed sporting massive dreads that had appeared overnight from my hair falling out so fast. He worked for nearly three hours to cut my hair Saturday night, and did an absolutely incredible job! He managed to find and maneuver my wild tornado cowlick, and gave me the best haircut I’ve had since moving to the Bay Area, despite having very little hair left… I had no idea he had such a hidden talent! This gorgeous cut lasted five days, and by then a pair of clippers had arrived as a gift from my sweet cousin Pat. Rick came back over the following Wednesday, Day 22 and shaved off what hair was left, lovingly and with a steady hand. Turns out trying to hold it together was harder on him than me, and we spent the next few evenings processing this turning point. He has experienced several close loved ones battle cancer, and this brought things back up for him. We talked about our different vantage points, me in a familiar role as a patient (again), and him as a healthy person watching this condition affect those he loves. Things have happened at such breakneck speed for me this month that I have been in the trenches marching along, with little time to process much of anything. When I pulled out a wig I had gotten from a wonderful local organization called the Wig Exchange, it threw him again because, well, there was no being in Denial about this now.
I headed to his place for the first time since the quarantine that weekend, and we spent some much needed decompression time turning off our minds and vegging out watching movies while it rained. It felt like a blissful vacation from from my daily environment and new all-consuming Cancer Project, and was just what the doctor ordered.
