The Colon Club

Thanks Mia - more good info. The tape I removed was a couple inches toward the shoulder, proximal, and past two other tape stations. Nurse claims to be a tape artist!

Thanks Susan, I will check into the water filter! Bob and I were workaholics for so many years and personal/home things like this just got overlooked or put on the "forget" list.

I see Aminder Mehdi in Stockton. Can't say enough good things about him - he took care of the hubby's colon cancer 13 yrs ago and his SMALL cell lung cancer 6 years ago. Onco nurses are great. He walked through my Stanford referral and got me back onboard after I gave up.

Don't need the sous vide, I figured out. Just drop into a pot w/115 degree tap water, no big deal. The chemo does affect ... um .... cognitive abilities ...

Pins and needs in toes. Cannot use silverware - too cold; going to need plastic cutlery.

Thanks for the advice and comments, everybody VERY HELPFUL!

Also just watched a happy cry video on Facebook - crying also hurts! Definitely an effect on salivary and tear glands.

I went for a walk with my friend up the hill today, my usual exercise. When I got the cold air in my throat I started breathing like I had croup, freaked out both myself and my friend. I put my hand over my mouth and nose and warmed up the air and was able to breathe normally again and continued on . Cold is definitely brutal.

retiredteacher wrote:... we are on untreated well water. Good quality, but too many unknowns in the piping system etc...

I have a special interest in groundwater contamination because most of the persons I know who had gastrointestinal cancers lived outside metropolitan water districts and had their own private, domestic wells.

Have you had your well water tested for contamination?

https://water.usgs.gov/nawqa/studies/domestic_wells/nitrate.html

retiredteacher wrote:Also just watched a happy cry video on Facebook - crying also hurts! Definitely an effect on salivary and tear glands.

Yeah, I learned early on to not watch tear jerkers.... Those are literately tear HURTERS! Man did that hurt!

Those side effects should subside in a few days. It helps to keep a log of when they start and when they end. It gives a nice point of reference to when you can start doing things again.

Just remember, they are only temporary. Once you get past the chemo, they will all go away. The only one that I worried about was the neuropathy.

Hey girls—was reading through your chemo experiences and wanted to share something I found helpful. Between the pins and needles and that occasional cramping/muscle locking of your hands, I found a microwaveable gel heating pack to be a go-to resource during my four months on FOLFOX. They cost around $5 at Walgreen’s but can be bought at any drugstore and need 30 seconds in a microwave to get pretty warm. The moment my hands would wrap around that beaded gel pack— instant relief. So much so I bought a second so that when one was losing it’s heat I had a back up to fire up.

I can remember just the “coolness”of touching my clothes in the morning as I would get dressed for work hurting with the pins and needles pain—it is amazing how little something has to be on the “cool”side to set off that pain. I found quick running them under warm water made the pins and needles go away, but since you can’t stand there with your hands constantly under warm water, that was when I tried the gel heating pack and wow, what a difference. Just a thought ladies as I have been reading your threads as you are all just starting the chemo process.

As sucky as the process is, it is so wonderful to have this forum and each other to share the experience with since they can truly empathize on a level loved ones and friends cannot. I am almost two years out of treatment but read through the forum daily as I cannot say enough how much it meant to me to have this place as a sanctuary to come to when going through chemo and the mental anguish of it all. I hate that all of us on here have had to go through such a nightmare of an experience, but yet it warms my heart when I read through the various threads the genuine level of care and concern and friendship and willingness to share and help “complete strangers” all because of this beast, Colorectal Cancer. Sorry, got a little emotional there, but just reading through your posts to each other touched my heart because I can so clearly remember being right where you are now, in the beginning of it all, trying to figure out how I was going to make it—which I did thankfully and so will each of you.

O Stoma Mia wrote:Have you had your well water tested for contamination?
https://water.usgs.gov/nawqa/studies/domestic_wells/nitrate.html

I hear you - we are in a heavy ag area, past mining area, etc. Have a good water test here - but not sure the chemistry profile - different companies test for different things. More concerned about industrial chemicals, ag chemicals from long ago still persisting in soil, heavies from past mining. Was looking for a water testing lab last week but got distracted. Hubby also had a career in ag chem and is a fairly heavy handler. After 20 years, I finally put my foot down hard and had him move all the labelled stuff out to the shop - he was coddling it in the house garage for beneficial temperatures. Anyway, it is on my list of things to do.

Soccer Mom thanks so much for your comments - this is a very special place!

Called today and got scheduled for port installation next Monday. The IV pain was pretty intense and lasted about three days. I think a port will be worth it. Had an emotional meltdown yesterday I am thinking may have been something to do with steroids?!?? Sleep has been averaging about 4 hours - got an Ativan prescription , hopefully will help.

I had a really hard time during my first cycle and felt really low. I now look back and wonder if I was crashing from steroids. If I had to do it over I would ask about the steroids and whether they could be reduced. I think I assumed it was the chemo and not the steroids, but I could have been wrong.

Glad you are getting the port. It is weird having it in your chest but the chemo part didn't hurt there or afterwards.
Steroids are quite literally a trip for me.
Susan

Got the port installed today, yay! Anticipate an easier time next round. Using the Ativan for sleep - is making a huge difference. Friend sent me a link for the Vog mask for the next round - sensitivity to cold - she was considering due to the Sonoma fires last year - imagine it might be nice for walking on those cool mornings .... https://www.vogmask.com

What kind of difficulties are you having with sleep? I am grateful for the warmer weather, just find exercise in the cool air to be too much. Missed being able to drink a cool beverage this weekend but room temperature water/juice mix was okay.
I am going to email doctor about the dex, is it really necessary?
S

Good luck today! Round two

Okay, Round Two: Port made a huge positive difference not dealing with arm pain. Woot!

Side effects came on stronger, faster - all during the last 30 minutes of infusion. The nurse slowed down the infusion from the start to moderate, based on the last round, but to no avail. I was there from ten in the morning until after 4 PM.

Temperature sensitivity is kicking in at room temperature; the big problems seem to be related to the last hourly visit to the ladies room and that cold toilet seat. I can cover my mouth and breathe through my hands - to no avail. It's the butt cold. Last toittie break, I refrained from putting my butt on the seat and did not get the throat shut-down. Go figure.

Other side effects: eye twitch, left eye went into half closed position, claw hand, forearm weakness, floppy ankles, developed a lateral 'S' lisp, and had a hard time forming words. Otherworldly feel. First bite, painful tears. Nurse and hubby said they observed nothing weird about my talking or walking and nurse says she has never seen these types of side effects. Eyes were obvious to them both. I spoke to her about the emotional crash from last time - she proposed cutting back on the steroids next round, but ended up giving me an extra shot of steroids to get me home. Oncologist is proposing staring oral steroids day prior to counteract the side effects - if I can stay on the Ativan and get some sleep the emotional crash may not be as big a deal.

I ate quite a bit Thursday - snacked in the clinic, had a Subway sandwich for lunch, and a Stoffers meat loaf and mashed potatoes; yesterday Cornish game hen for bkfst, mac and cheese for lunch and salmon and pesto pasta for dinner, topped by a bag of Ghiradellli semi sweet kisses in bed at ten PM. About 80 oz liquid consumed Friday. Am downing big soup mugs of warm water cut with Gatorade - side effects Friday were completely manageable - they seemed minimized or maybe I am just prepared, or possibly less hyper-vigilant. Oncologist says side effects will be minimized by getting the chemo out of the system ASAP with liquids. I was able to hold a regular fork and didn't have to use plastic. Hubby is getting bolder in the kitchen and trying to cook for me. A couple funny mistakes, but he's survived. When this is all over, I think he'll enjoy taking cooking classes with me.

The nurse has never seen those types of side effects, seriously? I had very similar side effects right after infusion. I didn’t know ahead of time about the eye twitching and shutting.