A TGB READER STORY: The Sunbonnet Crown
Christmas Eve Eve Eve

Anecdotes From the World of Chemotherapy

It's a rough day here on Tuesday as I write this – heavy fatigue from the new chemotherapy regimen I began last week has slowed me way down; I'm napping a lot.

In the past, I was lucky to need only about an hour's infusion; now it's five or six hours.

Actually, most of that time is taken up with infusions of medications to keep nausea and other side effects at bay. The chemo is only an hour or so at the end of the session.

But they thought up a new “treat” for me this time - wearing a chemo body pump at home for two days afterwards, like an across-the-chest pocketbook. It's about the size of a large cell phone plugged into the permanent port in my chest for an addition infusion.

Of course, I can't shower for two days – the pump must remain dry - so I try to keep my distance from people I run into because I'm probably kind of stinky for those days.

And it's just a joke getting in and out of clothes trying to keep that line from the pump to the port from getting twisted or yanked out while taking a sweater or nightgown off and on.

At one point I somehow got the line strung all the way through a sleeve and it took ten minutes to get that sorted out.

This is high-tech, modern medicine but sometimes you end up feeling like a three-year-old who doesn't know which shoe goes on which foot.

The thing is programmed to stop pumping after 46 hours after which I was scheduled to go to the clinic to have it removed.

Here's the fun part when that happened: So I'm working at the computer when the most ungodly loud alarm goes off. Truly screeching at me. The sound seemed to be coming from under the desk – you know, where that mess of cables that connects the computer and peripherals is plugged into the surge protector.

Clang, clang, clang, clang went the alarm like the loudest fire engine siren rattling my brain. Clang, clang, clang, clang. Fearing smoke or fire might erupt, I crawled under the desk with a flashlight and unplugged all the devices – all eight or ten plugs – while being careful not to bang into or lean on the pump, not an easy trick when you're mildly panicked.

Nothing. The screeching continued. Then I thought maybe it was coming from somewhere in the kitchen but nothing there was amiss. I stood around for a bit until dummy here (that's me) finally realized it must be the damned body pump.

Sure enough – I'd forgotten they told me it would “beep” when it was done. BEEP, you say? I'm still half deaf from it.

I finally managed to turn it off but if any of you know the difference between a Stop/Start button and an On/Off button, please do tell me. I punched both of them several times before the alarm finally stopped.

Or maybe it's just chemo brain that made my mind go too fuzzy to think straight.

I'm sure TGB readers who have themselves been through this and other unexpected complications of cancer treatment have your stories. As exhausted as we can be when these mishaps occur, the only useful way to deal with it is to just laugh at yourself, do the best you can and then go back to bed.



Comments

Good thing you weren't in an airport when your body alarm went off. Homeland Security probably would have had you on the ground or have called the bomb squad.

Feel better soon.

That's a mean trick to pull on someone who is suffering, anyway, Ronni. Big bummer!

"They" don't make it obvious how to handle buttons that are labeled "On/Off" - or - "Start/Stop". I never know whether I am turning something "On" or "Off" when I punch a button. The same is true of software when inputting settings. If I click on "On" does that turn an option "on" or does it turn the option "off". Pictograms are no easier for literal people to interpret. Most of them mean nothing to me.

Let's hope they don't pull further tricks on you with your treatments. (There is no "treat" in treatment!)

Oh my, oh my! I could just see myself in your predicament - and hope that I would be laughing heartily at the end. I live about 15 minutes from hospital so have been able to choose going in rather than having an attachment. However, I did once have an IV hanging from my port for a week or two, and somehow I had to inject medicine into it and flush the port. The visiting nurse showed me how and other than the "hanging" gadget from my clothes all went pretty well. But, it was summer so much easier clothing shuffle! And, there was no alarm!
My best wishes to you as you go through this, and thanks for keeping us in the loop.
Vicki

How awful. Chemo brain or pump head (what I had after surgery); neither is to be desired and loud noises just compound the issue. Hope you don'T have to go through that again.

Ronni: you are a marvel! I can't believe you are doing all this yourself!!~!! With no one to lend a hand. If I were in your place, I'd be bonkers. Blessings from the universe & any other power to be who can help you keep laughing. I'd probably be crying or yelling to high heaven...…..Bless you :):):)Dee

You may have Chemo Brain but you still can write up a good story and make me laugh.
Thanks & know that I pray for you

At times, all of that "Modern Medicine" is more like modern torture. The tubes, the needles, the pumps, the endless "procedures" and the after effects are more than some people can take.
I admire your strength, Ronnie. You're a better man than I am.

Your sense of humor is Priceless! xoxo

I have put this in my "good information to remember in case..." box Ronni.
I also have "Laugh and the World Laughs with you" ( Ella Wheeler Wilcox) and "The Optimist" in that box - he "fell 10 stories far and at each widow bar he shouted "OK so far!" [author unknown] possibly dead?
You are great and the only other thing I can think of to say is the English expression "Keep your pecker up!"

I'd not heard of the on-body pumps, probably because I didn't have to have one. But good grief, if I'd had a screeching alarm attached to me that I couldn't turn off, I'd freak out. That's assuming that I didn't stroke out or have a heart attack the moment it went off. I had enough to deal with without something like that. It sounds like a great invention, given the alternative of 48 hours in the infusion center, but I'd want a nurse with it instead of an alarm!

Take care, Ronni. You're in my thoughts every day.

Oh my! As much as I would have been discombobulated by that, my cats would have really freaked out! At least you know how to handle this in the future now, but that's about the only positive thing that comes to mind about it.

Wishing you all the best, Ronni, as you continue to fight the good fight.

This is both god awful and funny..leave it to you to tell this story in a way that I was experiencing it with you. Jeez, how I hate you're going through this, but am inspired and touched by you, living your life as best you can while being hooked up to a large cell phone on your chest. I'm sorry for the struggle and I am grateful for you and your enduring strength and humor. xxxx

I can just imagine the hassle of getting all those cables plugged back in. And your computer giving you the guilt trip: you didn’t shut me down properly. Thank you for sharing your journey here.

As if having cancer wasn’t enough, now you must deal with advanced medical devices. Here is my take: First the device is turned on, then it is programed for the amount and rate of the infusion, then you press start. The alarm is so loud because the manufacturer wants to alert the nurse who may be down the hall that the infusion is finished. What they expect of sick people is shocking to me. Don’t hesitate to push back if it gets to be too much. Thinking of you Ronni.

I can identify with the confusion as to where the loud noise is coming from. There are so many gadgets and gizmos in our houses now that beep when finished it's hard for me to tell which one is nagging me unless I have recently started it and am expecting the noise.

Recently a very loud screeching was coming from somewhere in my house for no reason and I frantically raced (my humor) from room to room trying to find the offender. It was my captioned telephone and I had missed a call and the captioning service kept the line open when the recording started telling you "If you want to make a call, yadda, yadda" and ending with the screech. Panic, you bet.

I can visualize how you must have felt. But to then have to replug all those cables must would have been the last straw for me. Going back to bed was probably the best solution at that point.

I'm so sorry you have to put up with techno-crap while you are feeling so bad. It never rains but it pours! More and more I think that being a hermit in the woods is the way to live - no robocalls, no notifications from the power company that you are experiencing an outage after the power has come back on, and so on. Going back to bed is always the ultimate solution!

Oh dear, Ronni! What a nightmare. When I came home from the hospital in Nov., I was threatened with having to bring home the feeding tube, through which I was to measure various meds as well. Fortunately for me, I was delayed in getting out--because of calcium problems--and did not have to bring that stuff home. Good thing too, because I don't think I could possibly have managed it without someone living with me. All I had, in the end, was a drain and a tray full of meds. What I'm getting at here is what someone else said--what they expect sick people to do! I don't know how you manage even to write about it. I am in awe. I am so sorry this is such a travail! Being sick is such hard work!

May you be safe from further encroachments of medical technology! Your sense of humor is admirable!

A wonderful book I read a while ago, How to be a Tudor: a Dawn to Dusk Guide by Ruth Goodman, reported that despite not bathing, people living in Tudor England did not smell bad as long as they changed clothes regularly. (On a bet, the author tried it herself.) So next time you're hooked up, feel free to get close to the ones you love even if you can't hit the showers.

I've only been reading your blog for a few months but it (and you!) are terrific. Wishing you all the best.

To be able to laugh at the awfulness of it is such a gift. I think of you often and I hate that you are having to endure all of this.

Oh, Ronni, my heart aches for you. Wish I could be there to laugh with you. It does help, but am amazed at your ability to deal with all this.

My Dad is long gone, but I will share a story I don't think he ever realized was funny. I'm sure it would be ok though as in his good years he did love to tease and to laugh. One year we traveled to visit him when he was in his late eighties. Only a few years before I had finally convinced him to have his ears checked for hearing aids. He did, but he wouldn't wear them.

When we arrived for the visit, we were there only briefly when the smoke detector blared in it's most piercing squeal. We told Dad guess it was timely that we arrived just as the fire alarm battery died. He said, "Oh, no, that's in my head." We dropped jaws and tried to convince him it was the detector. He assured us it was really in his head and had been happening for a few days. As we couldn't convince him otherwise, we just went to the fridge where he kept his batteries and loaded a new one into the alarm. Voila, the beeping stopped. He just continued to ask about our trip over and never said a word about the beeping having stopped.

A few days later I asked him about his head and the beeping. He was pleased to report that it seemed to have stopped for now. (Love you Dad!)

That’s the pits — dealing with all that. My Mom and I once talked about the B.O. issue in relation to her having grown up in early 1900s. Living on a farm in snow country before deodorants — no in door plumbing, limited bathing — certainly not a daily shower — often spit baths, as she called them, using a basin kept on a stand in each bedroom. (I have one of my grandmother’s water basin night stands — lovely solid maple, with a birdseye maple drawer). These basins always had fresh clean water for use through the night, too, or to wash the face in the morning as also had pots by the bed for toilet needs to be emptied daily. Who would want to go out in the snow to the outhouse in the middle of the night!

There was no dry cleaning of the heavy wool clothes they had either as she described how they wore them through the winter. Might be moth ball aroma if clothes hadn’t been aired out well after summer storage, then drug out at beginning of cold weather. She said she didn’t recall odor issues, but then wondered if maybe they all smelled really bad, but alike, so didn’t think about it.

Hang in there!

Hi Ronnie!
Although I've followed you for a number of years I never responded (I'm ashamed). I commend you and your strength as you traverse through cancer. My husband is also facing bladder cancel and is on chemo.

Our second oldest son has Parkinson's and through the years was befriended by a phenomenal fella who also faces a multitude of cancers. Jim was told 17 months ago that he had but a few months left - yet he's still with us. Jim also writes a blog and if you're interested in his story please consider reading his story at www.gatherwithjim,com. He's a remarkable person and like you gives many the opportunity to tag along with him on his journey.

I wish you comfort and peace as you face each day with your courage and perseverance and continued strength. I am sure that with your new found family your heart is now full of love and comfort.

Wishing you comfort
Carly A.
Calgary, AB Canada

Ronnie - time for wine and chocolate, girl !!

A dry run with that hellish beeper would have helped you recognise the sound. Hats off to you for writing about it so very well and giving me a chuckle.

XO
WWW

Boy, do I admire your guts! Hope I can do half as well when my time comes. Sendsing love though we've never met and never will. And buckets of admiration!

Ronni, my husband just completed 8 rounds of chemo in which he wore a pump for two days after each treatment. After the 3rd time, his nurse offered him a “Poppy Pocket” to try instead of the shoulder bag, which he detested for the same reasons you describe.

This latex-free elastic wide band goes around your upper abdomen under your shirt and the extra cord winds up into the second pocket. Works so much better, he even
slept with it. Ask for one next time. I have an extra new one if you email me your address!

You've got it. Back to bed now. Hugs.

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