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.

plumeria

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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!

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.)

Hair

When performing, if your scarf, earring, whatever, falls off – you don’t stop to pick it up and put it back on; you kick it to the curb and dance on!

There is a theatrical side of me that really blossomed when I started belly dancing.  My spirited dance teacher used to say, “There’s no such thing as ‘too much’ in belly dance!”  ie: Big earrings, tons of jewelry, layers of costume, lots of make-up and for us, always, glitter.   This one year I bought a big circle skirt for a particular performance, and it was a gorgeous bright fuchsia. My hair was a dark burgundy at the time and I remember giggling as I told my hairdresser that I wanted to try something a little crazy with my hair: fuchsia highlights, as bright as this fabulous skirt I was dancing in.  That’s where it all began; a few bright highlights that became bigger and bolder with each follow up appointment til one day I suggested we just do the whole thing in fuchsia.  Oh it was beautiful and FUN!!  From there I have tried all kinds of color combinations as the products became available.  It has been a conversation starter and topic of interest for years! And my answer to the inevitable question of ‘why’, or ‘what’s next?’ was to explain that my hair was simply a whimsical accessory and I would change it as easily as I changed my earrings.  It wasn’t important, it wasn’t a statement, it was merely fun.  I don’t think many people really understood that point of view. So, of course as friends and coworkers heard of my diagnosis of cancer, they thought of me and thought of my colorful hair.

Cancer = chemo = hair loss.

I now know many women who have been through chemo, they’ve shared with me how they handled the loss of hair. For many it was a ceremony or party kind of approach, with the sense of taking control of what was happening to them. Surrounded by friends and family they cut off their hair when they chose for it to happen, instead of watching it fall out. They had great names for their parties too: “Buzz Party”, “Coming Out Party” and “Close Shave Party”. These are perfect ideas for those that did them, but it doesn’t mean it is right for everyone. It wasn’t what I wanted. I don’t feel festive about this process.

What I want is to feel what is happening; I want to be in tuned. I am taking in a slew of drugs to kill this cancer, and that is what makes me feel empowered and in control. In the midst of this battle, I’m not going to stop to clean up and look pretty; I’m going to keep blasting at the enemy. It is the use of chemo that is empowering me.

And as my hair falls out that shows me that the drugs are working. Looking at a handful of hair I can say “Ha! Dying off like all the cancer cells inside.” And I triumphantly toss that handful of hair in the trash; Kicking it to the curb.

Hair Show

Act One

????????????????????????????????????????The first day of chemo was the only relaxing day I’d had in a month.  I got to sit in a big recliner with my big soft blanket, and free Wi-Fi for 7 hours in a quiet peaceful atmosphere.  If I had been tired, that would have been an ideal spot for a nap.  As it was, I was just tired of the harried rush that life had become.

All went well with the infusion; I had no immediate reactions, and went home intensely focused on “how was I feeling.” And again with the injection of neulasta the next day; there was no real reaction to it. When I got back to work the following morning I remember feeling like “Wow, I can handle this.”

It was 2 weeks before Christmas and I finally had time to start the upcoming holiday season.

I made plans. And my body laughed.

That night, day 2 after chemo, the aches and pains started. Calling it similar to an achy flu is rather inadequate for my experience. Although I have to admit that my experience with the flu is thankfully minimal anyway.   This was like a pin-ball machine going off on the inner core of my body. My hip would get a zing of pain that made me catch my breath, and then suddenly my thigh or a rib would get the zinger. I couldn’t rub this away like you do when you walk into the dishwasher door that’s left open (c’mon, we’ve all done that right?!).   Lying under my electric blanket didn’t ease the aches either, but it did soothe the rest of me. Day 3 to 7 was miserable, but I can’t be sure it was chemo related. Several other people I know had come down with a stomach bug and I am not sure if that is what I had or if it was chemo reaction.

As the stomach issues subsided, my sense of taste and smell whacked out. For many days my mouth felt full of acid. Eating anything acidic like spaghetti sauce was amplified and awful. Something spicy such as salsa was like having a pin cushion in my mouth. Even gingerbread was too sharp. The hardest part of this was not being able to taste my cup of tea in the morning. If you are a tea or coffee drinker, you know the headache you’ll get if you don’t get your morning cuppa, it’s not nice. So I made my tea, and yuk – it wasn’t acidic but it wasn’t the enjoyable sweetness I was expecting. I drank it anyway of course, and hoped that the taste issue would pass as quickly as the other discomforts.

The sense of smell though, that was a weird and unexpected issue for me. As I drove home from work on day 9 after chemo I thought I smelled burning plastic inside my car. I got out and it sure seemed to be coming from the engine. I was quite concerned so I had my son check it out, and he found there was no odd smell and certainly nothing on fire. Other things smelled wrong too: my hair smelled funny to me, one pair of boots in particular did too. I didn’t ask my son to smell my boots; at this point I just accepted that my olfactory settings were off!

What is interesting to me is as I got over this stomach and senses issue; I swear I could feel the path the chemo drugs were taking in my body. Specifically The lymph node where the cancer was found started to twinge a good bit, and for the first time, on the inside, I could feel the tumor in the breast. In my mind, I saw this as my weapons reaching their targets and doing their job. This is when I really began to feel like I was taking the lead.

And this leads me to the next indignity on this adventure – acne. Well, it isn’t really acne, but my neck and face started breaking out as all these drugs were being processed and removed from my system. My neck muscles began to hurt, and then there were a few pimples just along my chin. Within a day more and more pimples, beginning along the chin then cheeks, then forehead. These were sore and forceful, and itchy. A couple of them just started to bleed on their own. It was (and still is) really quite disgusting. If only it was time for Halloween and the Zombie Crawl, I would fit right in! Thank goodness for my age and solid self-esteem; and okay – heavy doses of makeup! – that got me through this latest affront.

This is all unfamiliar and strange territory for me; and in an odd way it is also interesting. Interesting, and quite frankly, fascinating. The body is an amazing system in how it handles the chemo drugs, processes them, and subsequently recovers.   It’s an amazing system that is going to kill a pretty dangerous cancer.

Turbulence

My appointment was bright and early on a Wednesday morning for my first chemo treatment. I watched the warm before the storm blow through tempestuous skies, tumbleweeds flying every which way.

As I sat in the waiting room, as the minutes passed by, thoughts I had been pushing away started swirling in my head (as unwanted thoughts are wont to do.) “After a lifetime of trying to live healthy and being careful of what I put in to my body I am now going to willingly allow poison to be pumped into me?”  “How can this be right?”  “I work so consistently to take care of my health, and now I am going to negate all that with poison?”

I wallowed in this sad confusion, getting myself more and more worked up for several minutes.  I was nearly in tears when my more ‘logical and in control’ part of my brain took control and said   STOP THIS.

STOP THIS NOW.

I remembered how my son would hit the button on his Nintendo system and say “Do Over” when he didn’t like how a game was going. I seriously did not like the way I had started this day, and sure wanted a “do over” myself. Without thinking, I found myself standing up, then walking out the door. Leaving everything: purse, blanket, notebook, phone; I just walked to the parking lot right outside. I looked to the heavens and in the midst of the wind I shouted “DO OVER!”   I stomped my feet and glared at the pavement and with each stomp I shouted,

THIS is NOT the way it goes.

THIS is NOT how it’s going to begin.

THIS is NOT the way I do things.

I paused, I stood looking at the door, I swear the wind stopped for a moment.

Out loud I said, “I need help. I need this medicine. I need this ammunition. I’m going to battle and this is what I need to attack with. I have to give my body the tools it needs. I need this. Give me the power to attack. I need this.”

I pulled my shoulders back, snapped my head up, and took a deep breath. A raindrop fell on my cheek as I marched back inside.

I gathered all my belongs, and within a few minutes was called for my appointment. I made a point to look at each person working with me, taking my vitals, showing me to the infusion area, and the RN hooking me all up to everything. This was my team, I was heading into a battle and I was depending on them to give me everything I needed for this battle. They did their part and now I was ready to do mine.

Angels amongst us

Angels around us

In a dark world we shine our light and gravitate towards those that shine a light back to us. The everyday life is filled with small interactions of kindness and consideration, spreading a little warmth between smiles.

Someone at work happened upon an ad for wigs, she thought of me and emailed the link. I knew that I *should* get a wig, but had made no effort to do so. So, I replied to the ad, contacted the person, and we made arrangements to meet the next afternoon.

I was surprised to meet a very young woman; and she had survived 3 years of chemotherapy. She had survived and was now 3 years into recovery. And – she wanted to give away her wigs to a chemo patient who needed them! These are expensive items, and she just wanted to pass them along to help out another person. She told me how to care for them, tips for wearing them, and I came home with 2 wigs – a long and a short one. This beautiful young mom was certainly inspiring to me.

Then today, several friends had a laying on of hands & a prayer circle for me. This truly touched my heart and left me feeling uplifted and strong. I know I am heading into a battle, but I know more and more every day that I am not walking alone.

Let’s not forget the angels at work around us, even on the simplest of days.

When life brings its difficulties as it always will, then those moments of light and thoughtfulness become ever more meaningful.   They shine a light reminding us what to focus on – the goodness and positive parts of our life.

I’m feeling grateful, and feeling blessed.IMG_0595-001