#chemosideeffects

[some1s-sista]

Venting, Whining, what have you

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.

[jenniez-tv]

Have to get chemo again...

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...

[contentment-of-cats]

When it's 2:00 am and the chemo nausea hits. Zofran is my hero, then if it's still bad in four hours I have Compazine. So, I might still be nauseous after that, but I won't be conscious.

[hillarystarbright]

At this point, all of my symptoms (except for bone and liver pain where the tumors are) are from the chemo, not the cancer. Some of the weirder side effects - that don’t involve discussion of gastrointestinal issues - are wicked hand cramps that are super painful and I have to physically bend my poor fingers back into place. I don’t think I’ll be on chemo for very much longer. I have some scans on Wednesday that should help me make some decisions. #starbrightsadventure #fuckcancer #handcramps #bucketlistadventures #cancersucks #chemosideeffects (at San Diego, California) https://www.instagram.com/p/Cpdtt1lPyFy/?igshid=NGJjMDIxMWI=

[chemobeanies]

We thoughtfully designed #chemobeanies with this intention in mind. Nothing to tie, yet you still have this feeling of hair on your neck. It also provides full coverage so you don’t feel sensitive about the bald areas. #cancerhairloss #chemohairgrowth #cancershave #cancerdiagnosis #cancersideeffects #chemosideeffects #chemowrap #chemocare #chemohairgrowth #chemotherapysideeffects #chemowarrior #cancersucks💔 #cancersucks🎗 #metasticbreastcancer #cancerscarves #cancerturban #headwraps #alopecia https://www.instagram.com/p/CejtpI4pOW_/?igshid=NGJjMDIxMWI=

[lulastitch]

April showers bring may flowers!

[houseclouds]

Spotted at a Goodwill.

[thepeglegdad]

My insurance started covering hearing aides last year. To say I was happy would be an understatement! Cisplatin is notorious for causing hearing loss due to the damage caused by the depositing of actual platinum in the cochlea. Just another side effect of being alive after a cancer diagnosis. Studies have shown that upwards of 80% of people who have Cisplatin are left with “significant, permanent hearing loss”. What’s sad is that it’s not standard for health insurance to cover hearing aids. Many will pay for prosthetics, implants after a mastectomy, and many other things that improve your life and are a result of a medical condition. Those needs to change. Hearing aids need to be a standard part of health insurance. @bakeraudiologysd set me up with a demo set on Thursday and it’s crazy what kind of difference there is. It’s like hearing in high-def. I had no idea just how different my hearing was and what kind of sounds are different. Crinkling paper. Tapping my phone screen. Water running. My own voice. Typing on a keyboard. All kinds of things are totally different. Too many people fight getting them even if insurance covers it. I know there’s a stigma with hearing aids. It means you’re OLD if you need them right?! Wrong. In reality, it’s no different than wearing glasses. If you are able and need them, get them! If your insurance doesn’t cover them, talk to your benefits manager at work. Talk to your Congress men/women. Hearing aids are no different than any other assistive device/durable medical equipment. #hearingloss #chemotherapy #cancersurvivorship #youngadultcancer #chemosideeffects #cisplatin #pseudomyogenichemangioendothelioma #hearinhaids #hearinginhd — view on Instagram https://ift.tt/H3ecJPj

[katiescancerjourney]

New Chemo Side Effects - TMI

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. 

[offthebeatenpathtexas]

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 :)

[anzu2snow]

I managed to get a lot of my ‘to-do’ list done today. Almost everything. Feels like I accomplished something. Even though it might not seem like much, I also got back into watching a show on Netflix. I want to get back to watching things and go through my growing list of to watch things on there. I just didn’t have the focus before. Certainly have the time to now. Hopefully I can keep it up, and watch interesting things. The current show I’m watching is Korean. It’s a bit...eccentric and has a lot of supernatural elements. It keeps my interest for now.

I clipped my nails yesterday. It doesn’t seem like a big deal, but they were getting dangerously long. The chemo does weird things to them. There are weird ripples, they’re thin, there’s a weird thick cuticle on one of them, etc. I’m worried that I’ll eventually get what my mom had. They all eventually fell off. I’m scared of that. They don’t seem to be loose or anything like that now. Still scares me a bit.

I noticed on Saturday that I started getting mouth sores again. Saturday was only a day after starting my current cycle of Ibrance or chemo. One day is pretty quick to get that side effect again. The mouth wash helped a bit. It’s not as prominent right now. I should try to do the mouthwash 4 times a day like it says in the directions at some point. (They say after breakfast, lunch, dinner, and before bed.) Maybe that will combat it even better. When they’re annoying, I tend to only do it before bed. Thinking it’ll give me the most relief as I sleep. I probably should think about the rest of the day.

I shaved the facial hair on my chin and mustache area. It was coming in thick. I feel a little better with it as smooth as I could get it. I hope to eventually get electrolysis on it. At least, that shouldn’t affect my cancer stuff. I’ll feel more like I should.

Yesterday I organized my pills. Found out I needed more anastrozole and omeprazole. Apparently last time there was no copay for the anastrozole. That was surprising to see. Normally all meds, except for Ibrance, are $10 a month for me. Ibrance is $50. I wonder what’s up with anastrozole that way? It’s nice, but makes me curious. I finally got 2 of the 3 meds I ordered last week today. The 3rd might have been too soon. However, taking a week to be approved and be delivered to me is longer than usual. I hope it won’t be like that every time.

Rosie, one of our cats, went to the vet today to be observed. She was there from 8am to 5:45pm. They gave her insulin and monitored her glucose every hour. So, she had to be pricked in her ear each hour. I feel bad for her. They want her dose a little higher. They’ll observe her again in a couple of weeks. She was so happy to be back home. It was a little unusual, but Tasha, our other cat, spent a good chunk of the day with me on the couch while I was mostly on the hospital bed. The bed’s near the couch in the family room. She slept near me like that a lot. Probably because the other one wasn’t there, and couldn’t chase her away. It was cute. She’s been really affectionate around her food bowl on the banister, too. It’s nice, but a little weird.

I had another shower on my own tonight. The only problem I’ve noticed with it is I get a lot of water on the linoleum floor. Some of it on the rug. I know I shouldn’t worry too much about how messy I get it in there with the water, but it still kind of irks me, I guess. I can’t help it. The chair was a lot better after I fixed it last time. Much more stable.

[hillarystarbright]

Gross cancer problem No. 956,325: this chemo is so hard on my fingers and toes! You know how it feels when you slam your finger in a door, and it hurts the end of your finger every time you touch something? That’s what it feels like, on every finger and every toe. The tips are super painful so I clipped the nails short to mitigate it, and some of my nails thickened, and some of them feel like they’re going to come off. Sorry if this unpretty view of chemo/cancer is hard for anyone to look at. As always, #fuckcancer. #cancerproblems #starbrightsadventure #stupidcancer #chemosideeffects #chemonails #cancerslayer #bucketlistadventures (at San Diego, California) https://www.instagram.com/p/Civbyo3Prsp/?igshid=NGJjMDIxMWI=

[whyilikerainbows]

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. 

[chemobeanies]

#scarves are beautiful, but they slip off easily and constantly have to be readjusted throughout the day. Plus learning to #tieascarf is burdensome and the tied knot hurts your head when sitting in the #chemo chair for hours. #chemobeanies #chemoheadwear #chemoheadwrap #chemoheadscarf #cancerheadwear #cancerheadwraps #cancerheadscarf #cancerwarrior #cancerwarriors #scarves #notiescarf #turbans #bandanas #headwraps #headwrapstyle #shavedhead #headshave #beanies #cancerhairloss #chemohair #chemosideeffects #chemosucks #chemocaregivers #chemohairlosssolution #metastaticbreastcancer #mastectomy #oncologynurse #baldheadcovering https://www.instagram.com/p/Ce9pIplA50f/?igshid=NGJjMDIxMWI=

[tonydianajday]

I could definitely do without these... Lack of energy and weight gain are the worst side effects of chemo #chemosideeffects #cancersucks🎗 #noenergy #weightgain #ihatecancer https://www.instagram.com/p/CKsgycyhUumYVDCkpXxB_jXNL5iN2-A-NaT1Qw0/?igshid=axtgs9ww2mik