Reality Check

HOW DO YOU SPELL CANCER

C = CHALLENGING every day
A = ANNOYING AWFUL SIDE EFFECTS
N = NO!! Not me!!
C = CHANGES LIFE FOREVER
E = EVERYTHING IS DIFFERENT, EVERYTHING
R = RAMPANT, RUINS LIVES

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**I wrote this “essay” a few weeks ago, and then never posted it on one of the “5’s” as July/August has been so bipolar for me with some really awful days, alternating with some ok days, which gives me false hope… then boom!, the angry volcano sabotages me again, at the most inopportune times! It’s really getting ridiculous! So anyway… here’s my recent ramblings:
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Myeloma is a cancer that never ends, until the end. I know that’s a difficult concept for most people to wrap their head’s around, as most think about cancer treatments as finite, as a temporary interruption in life, then you move on, and you get back to “normal”, cancer free. Those of us battling myeloma, will battle forever. There is no “ok take some chemo, get that stem cell transplant, reach remission, and cancer’s gone”, as in gone forever. Nope, Myeloma is never gone. We treat, retreat and continue to treat, battling the battle of the unending war. We live each day wondering if the next day will be worse, or if the current treatments will stop being effective, or if we move the wrong way our bones may break, or we’ll catch a dreaded bug, virus, bacterial infection that will compromise our already compromised immune system, and well… that there could be the end of the story…

Seriously friends, I am really trying to continue to be my optimistic self. And I am really trying to maintain some semblance of “normalcy” in my life… but it’s really really challenging. After my volcanic freeway near disaster (previous post), I had a terrible week with awful debilitating back pain, pure exhaustion fatigue, a really yucky steroid crash, and yes you guessed it, lots of time spent with "Porcelain John". I really thought this could be the “beginning of the end”, and myeloma had moved into my bones. See in time, myeloma eats away at our bones and we wind up with “honeycomb” style bones, hence Multiple in the name Multiple Myeloma. Thankfully, the horrible back pain is better now, and have a skeletal scan scheduled to survey my bone status…

Times like this, I begin to question what is left of my daily quality of life. What really do I have to look forward to? Each chemo/steroid cycle is different. Side effects vary day to day, week to week, month to month. The lack of physical/biological “predictability” in my life causes me to not be able to do much at all anymore. I make plans and hope to attend. I schedule events and hope for the best. I make plans, hoping to attend, then cancel. But most of the time, reality is... plans are cancelled. And honestly, I rarely feel good enough to do much of anything anymore anyway. The optimistic helium has left my once colorful balloons. Such a sad confession for me :( 

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This 5 year anniversary truly is a milestone for me, and I am eternally grateful and thrilled I’ve survived Myeloma for 5.5 years! Make no mistake about my gratefulness and appreciation of my survival success! I am fascinated with my survival actually, as I read so much about myeloma and other comrades’ circumstances. But my quality of life kinda stinks most of the time. Honestly, I must be honest with my reality. That’s just who I am. “Hope” is always associated with cancer and is an over-used cancer icon. And yes I always “hope” for the best with each new day, but my daily reality slams me in the face as my daily life is so unpredictable. Not one's “normal” unpredictableness of life, but the fact that I am so controlled by my body’s physiology. Prior to my cancer diagnosis, I never really paid a ton of attention to my body. It did what it was supposed to do, and I was always focused more intellectually, then physically. As long as I could be me, and do my "me things", all was good. 

Plans, planning, and forward destinations are what most people’s lives are about. Everyone is always planning for something. It's our human nature to make plans, commit to plans, do those plans. Me, I plan and hope for the best. I plan and unplan. Plan and cancel. Fatigue and GI unrest is so unnerving. My system is so very different now. What was once taken for granted, is feared. I marvel now at the “normal” person’s life, and my own pre-myeloma life. One just does… and I just did whatever. I Planned and Did whatever, whenever, not consumed in the “What If” I now must take into consideration always.

And the Fatigue! Ugh! FATIGUE is so disabling. I have less and less energy all the time. Never quite understood "unenergized" people before, as I always pushed and pushed myself with everything I did. When I was “tired” or did too much, I still pushed forward. Action, Achievement oriented was me! I never really understood those that didn’t push forward, didn’t get up and go, didn’t get motivated and do life, do their goals, or work on their challenges. I was always activity oriented in so many ways. Laziness, "couch potato" status was never associated with me.

But cancer/chemo related fatigue is so different than lack of motivation, tiredness, laziness.  One’s body feels laden with bricks. Your mind may be alive and excited to do things, but your body is dragging a ball and chain, everywhere, all the time. I’ve always been an active, playful optimistic do-er. Mentally and physically I’ve always felt so alive! I love the outdoors and all my nature-related activities. I love interacting with interesting people and stimulating, energizing events. I love creating and making a difference.  But now, thank you to cancer and treatments, I find I have so little energy to do anything, and even pushing myself doesn’t feel good any more.

All this makes me sad for what my life has become. I had so many ideas, goals, plans, dreams for the 2^nd half of my life. I’ve had such a wonderful rewarding fulfilling career as a college counselor, helping others realize their academic dreams and life goals. I know I’ve made a difference in many many lives, and I’ve accomplished a lot in my own life. I am proud of who I am, and what I have achieved. I’ve overcome other challenges in my life (perhaps I will tell that story in another post), and was looking forward to my 2^nd half of life goals.  My plan was to continue to “rescue” others, but outside and beyond the college environment. I always dreamed of creating some sort of abused animal, abused kids rescue organization. Or just volunteering at someone else’s rescue. Helping animals, helping kids with their 2^nd chance. Continuing to enlighten, empower, encourage, promote psychological healing, facilitate health and happiness for others, as I had always felt so blessed and fortunate in my life. I wanted to share my eternal optimism, hope, passions, enthusiasms, encouraging others that dreams really can come true if you commit and work hard. Push forward. Assess one’s self and always be aware. Move forward, Don’t Be a Victim. Always learn from the past. Ask why. Move forward positively. Grow. Look in the mirror and question. Move forward always. Create, laugh, smile, listen, heal, share, give. 

But I am realizing this will not be possible. Myeloma has stolen and rearranged my plans and dreams. Don’t be upset with me stating this reality. It’s a fact. Cancer changes everything. Mentally and Physically. Try as might, push as I used to, I am not who I was 6, 7 years ago… and I will never be that person again. I will never have the super energizer bunny endless battery I used to. No I am not depressed. No I am not despondent. No I am not whining. I’m just stating My physical facts, and facts associated with an Incurable cancer diagnosis. Fatigue and cancer/chemo side effects change a life. And I am saddled with chemo/steroid treatments for life. Myeloma is so invisible, that most who are around me physically, or see me out and about, or hear of me, think that I’m in remission, or things are ok, or will get better, or fixed, or cured. NOOOOOOOOOOOOO… that is NOT the nature of Myeloma cancer.

So where does this bring me? To the reality of my circumstances. To the reality that my life has changed and will never ever ever be close to what it was before cancer. There’s no going back to the ol Julie. This is my new normal that feels so Abnormal. But I’m a realist and a pragmatist. I like living real, so I’m telling you what’s REAL to me. I’m pooped out friends. I have so little energy. Even on steroid prop up days I don’t have crazy roid-rage energy like I’ve had previously. I’m realizing as my myeloma numbers increase, and my immune system decreases, even steroids don’t give me the accelerated prop up they used to do.

I’ve even experimented with splitting my weekly 20mg dose into 10mg, 2 days, as the crash was just so awful with the full 20mg shocking my system. Plus, splitting the dose also allows me to plan and attempt at least 2 days of possible activities outside my house. This is another example of how my body has changed and weakened. During initial treatments, I did 40mg of steroids, 4 days on, 4 days off. I must have been such a sickie, as I don’t recall feeling quite as yucky as I do now. Or I just pushed forward too much then, all the time, trying to ignore (deny?) my cancer diagnosis, and just continued (pretended) to be me. Which reminds me of a funny story back then… Well, next time… this post is getting way too long!!! 

So I'll end this post on a positive note, as I did finally make it out of the house Saturday night, after days and days of feeling yucky and spending too much time you know where... But can you believe this... just 45 minutes before we were going to leave, those stupid telltale GI rumblings began. And I had thought I was safe and in the clear. Well as my life has become, I quickly contacted  those we were going with, and let them know what happened and where I was going to be for who knows how long... and yes, when I thought the evil volcano's lava was done spewing, I downed swigs of Imodium to get me thru the event. Shheesshh this is just crazy. And could I eat at the event... NO! But I went!!!

Thanks Kristin for creating this cute collage of us :) Loove you!!!
Yes, that's an "air kiss"! No human contact for me

 And the irony of my life now, is that I am surrounded in GI maintenance! My daughter's 18yr old cat (shelter rescue kitten 1997), is now incontinent and in diapers! Poor guy, mentally he's all there, but his body is sabotaging him. (Ah, the parallels in life!) He's always been disabled, with a cat form of hindquarter-palsy, but old age has now caught up with him and navigating the litter box is too challenging for him. He tried for years, but his back legs just slip out from under him. But the last several months his slipping and sliding escalated, and it was just pee all over the "cat castle room". So I made the executive decision to try doggie diapers for him! So far it's working out well, and he seems calmer, cleaner, and he purrs up a storm when I change him. I actually had scheduled, rescheduled, and ultimately cancelled several euthanasia appointments as now he's too "ok" to make "that decision". Am I looking at my future LOL?

But this is where I draw the line for me and my future... No Diapers For Me... Nope!...No Way!!

I have blood tests this week, and my monthly check on Aug 24... so we'll see what's up. Enjoy the rest of your summer, and play and laugh, travel to beautiful places, go out and about, savor special moments, enjoy everything, eat, laugh, relax, dream, do things, and bask in the sunshine and moonlight!

Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!