ACT V : I’ve had more use for Lamaze in chemo than I ever did in childbirth.

Act V

I’ve had more use for Lamaze in chemo than I ever did in childbirth.

The way I would choose to describe Act V of chemo would be to say that it has become familiar. It is easier in the sense that when the Neulasta pains come I know it will ease in 2 days; or when I am feeling nauseated I know what to do to settle those muscles. When my mouth tastes full of rancid chemicals, I grab the bio-tene spray. I am tired as all get-out, but I am in control.

“Just breathe…”

I have two kids, and both times labor was so fast that I could hardly catch my breath never mind breathe. But, those Lamaze classes were not wasted!!  I first of all lived through the teen years (BREATHE), and now – chemo.

When that tell-tale sign, you know that watery tingle at the back of your tongue?, when that starts up I focus, breathe in through the nose, slowly out through the mouth… and often times I am able to calm the tummy down. Or at least buy me enough time to hustle to the appropriate facility.

The “hee hee hoooo” breaths work with the Neulasta pains. They come on suddenly and are pretty sharp, the short breaths help to ride them out.

And that grande finale of Lamaze? That “push push” ?   Save that for the next person that asks “Didn’t you go for mammograms?”

The fog comes rolling in ~

One thing I have always liked about myself is that I am smart. Being “nice” was a given, I had British parents and manners and politeness are culturally very important. Being pretty didn’t matter and it’s such a personal opinion anyway so it’s never held any weight for me.  But being smart was something that was all me, something I did and I controlled. That has always given me quiet satisfaction.

So, now here I am in the culmination of chemo, and the brain-fog has rolled in; and it is very unsettling.

I have worked in IT since I was 19, so I am rather well versed in a wide variety of aspects of the industry. The other day I sat at my machine pulling specific information from the database, and I needed to fine tune this information for precision. Suddenly I hit a mental brick wall.

I entered in the necessary language but the results would not populate. My first reaction was I was puzzled – I could not understand why. Why wasn’t the coding I entered bringing out the expected results? I have done this hundreds of times before, why wasn’t this working this time? I ran a formula checker that pointed out an error, and I still could not figure out how to resolve it. And worse, I didn’t know what to do about it. I stared at the screen in a daze.

Then my next reaction; I got very sad. Mind you, I was already fatigued and weary from the chemo (which at the time I did not recognize.) I started to get very sad and wondered if people with Alzheimer’s feel this way? Do they feel that frightening loss and perplexity?  Or are they blissfully unaware of what they used to know?   God, what an awful feeling this was!

I did have the sense to put the problem away for the time being, and when I went back to it in a couple days I fixed it in a snap. But those chilling feelings of confusion were something so uncomfortable, so unsettling, I know I won’t forget.

What I miss, (today).

I miss nose hair.

Have you ever even thought about yours?  I never gave a thought to them before, but I have an appreciation for their role now, that’s for sure!

I live in Reno, Nevada, in what is called “The high desert.” It is dry, can be dusty, and is often breezy.  So, while we don’t have much pollution, the air does carry the desert dust some days.   Add to that, the fact that I am not a good housekeeper (dust bunnies are my pets) and there you have the basis for my less than pristine environment.

I noticed I’ve been sneezing, and my nose will start running.  At first I was concerned I was coming down with a cold (when you are getting chemo your immunity is compromised, so any type of illness – even so minor as a cold – is something the doctors want to know about and monitor).   Then I noted that this sneezing or runny nose would start and stop so quickly.  It is such a brief condition and I was glad for that; but still curious.

Finally it hit me, the light bulb went off, and I had that “ah-HA!” moment: my filters are gone!   Every little bit of dust can easily get breathed in, and does, and sets off a tickle or a sneeze.
Our nose hair must protect us from quite a lot of airborne contaminates from microscopic, to noticeable lints and dust, daily.  That’s a lot of bombardment for the old schnoz when the hair disappears.  So I’ve taken to using the disposable face masks when I do get around to housecleaning and have a saline solution nasal spray too.  Otherwise, I keep a tissue in my pocket for those ahh-choo moments.

Nose hair.  Who would have thought you could miss ’em?

Act III

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We’re all so different; even when sharing the same experience. I am halfway through chemo and finding it to be quite manageable; but the thought of the surgery that lies down the road scares me and makes me very nervous.   I talked with a friend about this tonight and she said that months of chemo sounds more unbearable to her than getting surgery after which you are immediately recovering.

I’d like to share my moments of success in dealing with the chemo side effects. And I would really like to know what has worked for others in this area too. Here’s what has worked for me:

The nausea; I have fortunately inherited a cast-iron stomach but nonetheless have experienced the queasy yukkiness. The medications given to prevent it do a great job at keeping it at bay, but there still have been moments. I’ve triggered the problem at times. I drink a lot of water, and while true it is good for you to drink plenty, I would down a full glass which was too much for my stomach to take in on those sensitive days. Pepto-Bismal has helped me on those days, and drinking room temperature ginger ale or orange Gatorade. Another friend has had good results with peppermint tea. Ginger candy ( gin-gin ) is great. This worked wonders for me after my first chemo session, but my taste buds have been super sensitive since then and I have not been able to eat them again – yet!

And speaking of taste buds; my sense of taste gets really bad for the first 2 weeks of chemo. I have to eat small amounts that are not hot, and swallow it quickly. I feel like my mouth is full of something acidic and rancid. Things will smell delightful, but once in my mouth this awful taste is triggered.   Any taste is amplified, so spicy becomes super spicy, and so sharp that it hurts. I used to say I loved “food on fire” because of my love of hot and spicy; i.e.: my favorite pizza is Black Rock Pizza’s “The Brush Fire”. Oh man, I miss enjoying food! But, I know this is temporary and I will enjoy it all the more when I get my taste buds back. In the meantime, a friend told me she used Biotene spray. I will be testing that out after my next infusion. I also take the store brand of prilosec and tums, because this acidic feeling gives me bad heartburn too. What I can eat at this time that really helps is real Italian Ice. It doesn’t fill you up, it’s soothing, and made with real fruit so it is good for you too.

I have always been prone to canker sores my whole life, till finally a doctor told me to try L-Lysine. I take it that moment I feel a tingle of a sore starting, and it has worked. I rarely get them anymore. Now during this ordeal, I take it beginning day 7 after chemo until I get to feeling almost normal again.

For my skin breaking out, I soak in a tub with Epson salts – often times including essential oils of some sort. This is very soothing in and of itself, but it is good for my skin too. I use coconut oil for moisturizer (moisturizer is essential in the high desert where I live in Reno Nevada). When I first break out it feels very itchy, like an allergic reaction. So for those times I use hydrocortisone, and twice I took Benadryl for the itchiness.

I get cold easily, so I keep some kind of heating wrap with me always; an electric blanket or a microwaveable heating pad. And now that my scalp is not sore, I can wear hats, scarves, and wigs. I’d suggest browsing etsy. I have a couple hats from here that I really like:  https://www.etsy.com/shop/CJHats

and here: http://www.curediva.com/shop-by-product/hats-head-covers.html

I hope these are helpful tidbits for someone; feel free to share your own helpful hints too!

This is what hurts.

I had tears last night; a tidal wave of sadness as one of those moments of reality hit.

I had gone to help Ben teach a dance; he is a wonderful warm soul and a dear friend. I always feel uplifted when we get to dance or hang out together. I was really happy to see him, and really ready to move! And we know this particular routine inside out; it is fun and peppy, and actually pretty easy. The music and the moves are powerful and empowering too.

I used to try to dance at home at least every other day to stay active and mobile. It’s my own therapy. Music pulls us to places. It tugs our emotions and can make us cry or laugh. And when you are down, blue, or tired, music is a great pick-me-up. I’ll play Hawaiian or steel drum music in mid-winter to bring me to a warm tropical place in my heart that warms my hands and feet too. I’ll blast some old time Patsy Cline when I want to belt out a tune while I do housework. And there’s nothing better than early rock and roll to invigorate and motivate one to move!

So, I was fine for the first run through and then breaking down some steps; but 20 minutes into it I felt my feet turn to lead. I wasn’t getting out of breath, hardly working up a sweat, but my legs struggled to lift my feet more than 12 inches off the ground. Not one to give up, I pushed through four more rounds til thankfully the class was over.

After goodbye hugs and all, I got to my car, and cried.

I don’t care about the other temporary losses, the temporary discomforts and sickness, but to not be able to escape into dance?  This hurts.

Act II ~ A lesson in following the lead.

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There’s something to be said for familiarity, and expectations.  Heading into my second appointment for infusion I knew exactly what to expect and what it all would feel like.  Infusion and the neulasta injection the next day have not created any immediate reactions for me.  Once it is in my system I start to feel it working, but no problems with the day of. (I am sure the first experience I had last month was a stomach bug, not a side effect.)

So the second round has gone well for me. That is not to say “easy” (I’ll tell you my comedic parking lot incident in a moment) but all things considered, this round has gone well. The side effects have been expected and I knew what was coming and figured out how to handle it.

Or, maybe what is really happening is that I have accepted that I should not push for control but I can follow the lead.

I can recognize now when I am feeling tired from chemo as opposed to tired from physical work. With the chemo fatigue, there is no putting it off; I need to stop. On those days, I find when I get myself home I need to actually lay down and sleep. I am sure I will sleep standing up if I don’t. My body is not going to let me put it off, and when I did wait too long, it ended up with me falling asleep fully clothed, shoes and all, sleeping for 10 hours.

I know that my sense of taste will come and go. When it is working pretty close to normal I am making sure to go for it and enjoy it! I can only eat small amounts for now, but oh boy the pleasure from a small bowl of blueberries is something I will never ever take for granted. I miss that when it is gone, but I know it is a temporary absence.

So I am learning to pace myself accordingly, whether it be eating, sleeping, working; I’m listening to my body’s response.

Here was my “ah ha” moment when I learned this lesson. During this second week I was at work, feeling queasy, tired, and pretty much having one of those “brain fog” days.   I hadn’t eaten much for a couple of days and thought I needed to eat to boost my energy and clear my head with a good healthy meal. I had brought broiled chicken, potatoes, and green beans from home and over the course of the afternoon I pushed myself to finish it off. It smelled like it was burnt, and tasted like chemicals but I pushed myself to eat it in order to fuel my body.   My body was not thankful and the fog was not lifting and now my stomach was churning.

My biggest fear of working through chemo is that I might throw-up in public. I think we all have odd and unreasonable fears of something or other (some people are afraid of cats… I don’t get it! Fluffy?!) For me it is the embarrassment of puking in public. It has never happened and I wanted to keep it that way. I plotted out my path to the restroom should I need to make a run for it, and carefully focused on every turn my stomach took, taking a deep cleansing breath with each one. Needless to say I didn’t get much work done that afternoon.

Finally the day was over and I began my commute home. It is winter time so I as usual cranked up the heat but it still wasn’t warming me up that night. It did make me sleepy though which was not a smart move on my 45 minute drive home, I was thankful when I made it to my neighborhood. “Ah, minutes to home, and then who cares what happens!” Knowing that ginger ale is good for upset stomachs I stopped in my local grocery store.

Why did I think I could run in for one item? Is there any mom who can actually do that? I got the ginger ale but also needed kitty litter and I was walking right by it. Then of course I noticed frozen veggies on sale and we always need those. It was then I started to get that tingling feeling at the back of my mouth. Quickly I assessed – can I make it to check out and home, or do I need to find the restrooms? I went to check out.   The sweet friendly clerk was chatty and all I could return was monosyllabic responses as I breathed slow and deep. Finally I was out the door, into the cold night air, clicking my key fob to open the trunk, and reciting my mantra “I can do this. Almost done. Almost home.”

I picked up the kitty litter, and the weight of it was the last straw – it sent my stomach into a tailspin which no deep breathing could control, made me double over and throw up right there in the neighborhood grocery store parking lot. “Oh please god I hope nobody saw me, please please please…” as I glanced around. It was wicked cold out, and fortunately I saw no one who could have witnessed my condition as my stomach gave one more wave to purge itself of healthy food. I was disgusted at having violated this lovely little shopping center. Still praying for invisibility, and feeling the need to somehow lessen my offense, I grabbed a spare gallon of water I keep in my trunk, and splashed the puddle I’d created to wash it away (no thought to the black ice I would be creating in its place!)

Comforted by the cloak of darkness, I tossed the empty jug and last grocery bag in the trunk, and wearily turned to push the the shopping cart to its corral. In doing so, my key fob hit the cart handle setting off the panic button resulting in my car alarm beeping and the lights flashing on and off. Frozen in place, in the strobe light of my car, I stared at the slapstick comedy I was in the midst of. If anyone had not seen me before this moment, they were sure to look now.

I looked to the skies and gave an exhausted “really?”   With an “oh F* it” under my breath I laughed, put away the cart, then fell into my car and finally headed home.

I recognized I was trying to control instead of following the lead.

(The next day when I recounted this story to my son, he said “You should have taken that show down to Wal-Mart, Mom; no one would have paid any attention to you there”

We’re a family of smart-asses, and he makes me proud.)