We are aware.

Here is a great article written by Ann Silberman that I want to share.  As she states in here, ok, we’re all aware about breast cancer… now what?

We need the medical world to be able to DO something about it.   We need more researchers studying how does this happen? How do we stop it?  That’s where I feel most of the money and attention should be going.  Everyone is aware of the prevalence of cancer, all cancers.  We need the smart people to find out what to do about it.  Keep the awareness going, and keep the research going just as much.   I myself am on a drug just approved last year, so yes I know there is still research being done; I feel we need that to be the stronger focus.

Please read this intelligent and well written article, and share.

http://www.healthline.com/health/breast-cancer/turn-from-awareness-to-research

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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.

Act IV : Why, Yes! You can take a vacation while in your chemo plan!

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“Well, make sure you stay well rested.” This was the advice when I asked my doctor if it would be okay for me to go on a vacation which had been planned for 6 months. And so that is what Act IV was all about: Staying relaxed and well rested.

Let me begin with emphasizing that I have been blessed with so much good luck in how my body is handling the chemotherapy. I know many people who have really had it rough. I’ve been able to work full time throughout, and have adapted to this ordeal. I think part of it is luck, part of it is tough genes handed down to me by my tough-as-nails parentage, and part of it is my “oh no you don’t” attitude. This is me talking to myself: “whine whine” and I’d then respond with “oh no you don’t! You’re going to Maui for your birthday, what are you complaining about?!”

Yes, I talk to myself. But I do a good job of keeping myself in line.

Last summer I had mentioned that I wanted to spend my birthday (February – always cold, often snowy) somewhere warm and on a beach. I was thinking Florida at the time, until my sweetie said “I’m going to Hawaii – let’s go together!” We talked it over and in a few days had picked a place and booked air/car, it was a done deal! We just had to wait for February! Every so often we’d say to each other, “We’re going to Maui, baby!!”

Then November came and my diagnosis, and the chemo schedule. I had only heard about debilitating chemo stories and fully expected that Maui might be out of the question for this birthday.   I even told my sweetie to see if he could take a cousin or friend and still go. He wouldn’t hear of it. At the time it was the least of my worries and besides what could be done about it except wait and see?

And that is what we did; waiting until chemo 2 was over and had gone well; then talked with my oncologist. My sweetie promised to provide me all the rest and relaxation, and to take very good care of me (which he sure did). After chemo 4, my oncologist printed out my medical record with the diagnosis and treatment spelled out, for me to take with me. He made sure I understood what to be concerned about and what to pay attention to. This was mostly about infections, or catching a bad cold, etc. in which case he wanted me to seek medical attention right away.

So, chemo #4 infusion went as beautifully uneventful as the previous ones. The next day I got the Neulasta shot. Then the next day I drove to his place to leave my car and start my vacation. The shot was starting to kick in and I fell asleep on his couch while he packed up his car and locked up his house. I was already in very good hands as he was attentive to me like this the entire trip. He would watch me and ask “Give me a number?” Like, how was I feeling on a scale of 1 to 10. By the time we were on the plane, I was down to feeling like a 6.5, but hey – we were on our way to Maui !

Maui was gorgeous; full of active whales, amazing scenery, fully scented flowers and greenery everywhere. The lava beds, where the earth is created – right there, and then goes to meet the ocean and the tide pools of little fish swimming in them; felt of centered and healing essence.  Sunsets warmed my heart, as did warm tropical rain and warm friendly people. It was magical.

I had fresh pineapple, fresh salt air and sunshine, fresh flowers! I didn’t wear a wig the whole time I was there, just a beanie for sun protection. I packed way too much, I will know better next time. And I was prepared for everything health wise, which gave me the comfort and ease to go about the day knowing if I needed something I already had it. Oh, and I had brought the Bio-tene mouth spray which was so helpful during the second week when my taste buds went away on their own vacation.

There was much I could not do (the road to Hana on a chemo tummy was not advised) and I will not dwell on that, but will plan for a return trip when I have triumphed this little setback, this speed-bump.

But you know, maybe having a speed-bump was a good reminder to stop and smell the plumeria and live Aloha.

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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.)