I’m still here

Happy New Year, welcome 2017.

I was reminded (again) of this, my blog, when during the final weeks of 2016 a poster of Betty White made the rounds on Facebook stating  “I’m still here!  …”

Yeah; I’m still here.  I dropped the blog-ball when, towards the end of chemo, my fingers hurt too much to type out anything close to a cohesive sentence never mind then a paragraph.   One of the side-effects I experienced was the nails lifting off the nail bed which was painfully torturous.   A couple nails seemed to get infected, but soaking in vinegar then keeping them wrapped in a band-aid helped keep them intact.  Not so lucky with my toenails though, I lost the nails on my big toes, and halfway down on the middle toes.   Wearing shoes hurt for a long time.

But anyway, I am still here.  I finished the chemo and had a short break of about a month or so before I had surgery:  a lumpectomy and lymph nodes removal, and after a quick recovery from that there was 6 weeks of daily radiation.  I pushed to keep moving forward with my treatments as quickly as physically possible.  I wanted to beat this cancer to a pulp and not give it any chance to regroup and fight back (ie: come back)

I was tired.  Victorious but tired.  I took a two week, no agenda, vacation to the coast as water and salt air always seem to rejuvenate me.  And it did help as much as it could.  But I was worn down.  It was July 2015 and I couldn’t walk far without my legs feeling like they would give out.  I couldn’t do more than a flight of stairs up, and down was even more challenging.  My head was still foggy and I would get frustrated at work when I couldn’t quickly accomplish a task which I knew I had the ability to process.    Then I tried to dance.  I was weak, and tired quickly.  I could only take part in the warm ups.  But the worst was that the administration had moved our class out of the studio, and of our class – my troupe – most of my dance friends had moved on.

It has been and continues to be a long uphill climb of recovery.  I have had to push myself daily, and now looking back I am stunned at how physically drained I was.  But you know how it goes in life; when you are in the middle of something, you just have to keep pushing thru it one step at a time.  It’s not until later that you can look over the full situation and think wow – those were some pretty tough times.

As I was on this journey, the picture – the story –  I had in my mind was this:

I was a warrior in battle, hunting tiny monsters that were out to kill me, in a long dark murky canyon.  I had to travel through this canyon from east to west and I had to travel it alone.  I could see many loved ones at the top of the canyon walls shouting encouragement to me and occasionally one would swing down on a rope to give me something needed when I lost my sight or my foot got stuck, then they’d swing out of the canyon again to the precipice.   At first I was zapping many monsters with something like a wand, ala Harry Potter style. “Expelliarmus!” and each zap shot back a painful jab, but I was slaying them left and right, and recovering quickly.  After a few months of this, I was pretty beat up.  By then the canyon had gotten deeper.   My feet were heavy sloughing through the muddy floor where the sun could no longer reach.  The kickback from the wand had bruised my hands, my nails were getting torn from the fingers and my hair had fallen out.  Each purposeful step racked painfully thru my body, and with fierce intent I still hunted the monsters.   I could find no more and wearily climbed a slight plateau to rest.  It was elevated enough that I could hear the muffled sounds from my loved ones cheering at the top.

The next part of the journey terrified me.  I cried as I stood in front of an entrance to a cave of dark jagged rocks.  I would have to pass through this cave sideways, and with careful precise steps, otherwise it would cut me.  I needed to be on the lookout for the monsters as they sometimes hid in the dark caverns and I could not let even one be overlooked.  I was frightened to the core and wished I could just be teleported back to the top of the canyon right then.  I was not sure of my footing.  And, what if I ended up getting all cut up and in much more pain?  I didn’t think I could take any more; and yet – I could not take a chance on the monsters lurking in shadows and then coming back for me as they were known to do.  I finally steeled myself to take this step, to pass through this cave and make sure there was nothing hiding within.  When I started this journey, this battle, it was with intent to win and said “I WILL win this.”  I made it through the cave scarred with only two cuts, and the glorious declaration that no monsters were found.  I had probably got them all in my first leg of the journey.

None the less there was one leg left to go.  Looking at it, it appeared to be an easy path although with a steep incline.  With this part of the journey I had to quickly (and I did not feel like I could do anything quickly at this point) climb the path out of the canyon through a blazing sun.  I am prone to sunburn but this sun would burn and vaporize any remaining monsters if it shined on them.  I was feeling rather chuffed about my previous victory and propelled myself into this solitary race with that famous last wind.  I was doing quite well in fact, and as I got more and more tired in the uphill climb the thought of my old life, the life outside of the canyon, willed me on and gave me the energy I needed to keep up the pace.  I would think of songs to play at my “Kali Killed Cancer” party and think of choreograph for them.   I neared the end and saw my loved ones as excited to see me as I was them.   I approached the final rim and climbed out of the canyon; bloodied, burned, and bald.  Barely walking, yet intently saying “I did it.”    We all rejoiced.

And that was the story as it played in my mind.

I knew it would be a long recovery after all those battles;  the day I could bend forward and touch the floor of the dance studio, I quietly cried with gratitude.  The time I did a quick math calculation in my head I smiled to realize the gray matter hadn’t gone away, it merely had been muffled under a blanket. There have been many small mile markers, with still more to pass.

Yet, what I am now still saddened by and still working on is the realization that while I was gone to battle for two years, life continued on.  And life, as we all know, is about change.  I “came back” and so much had changed.  My dance troupe is gone.  People have moved, moved on, or taken on new hobbies.  Dear ones have moved on.    Life has gone on and done so without me.

I feel like I am sitting on the rim of that canyon, catching my breath thinking “what just happened?” and “Hello? Where did everyone go?”

I guess I just have to start walking and find out.

 

Advertisements

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?”

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

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!

act_iv

“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

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

act3-001

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!