When Illness Becomes a Lifestyle and Other Ridiculous News

This Life!
Seriously, this life is so full of extremities. On so many levels. For everyone, of course, in their own way. I used to be that person that assisted others with sorting out their dramas, tramas and life’s challenging circumstances. Now, I am the one with the drama, and I don’t like it. I’ve never felt so “bi-polar” in all of my life. I can go from feeling Great to Horrible in the same day, within minutes. Sometimes I feel I can
accurately predict my physical circumstances, then poof, something
happens and in no time, my life is upside down. I’ve always looked for the good in the bad, and been aware of that fine line between humor and tragedy, but c’mon life, enough is enough already. Yes, Illness has become my Lifestyle…

Before cancer, my life hummed along. “Normal” extremities and challenges daily, but there was a sense of natural flow, of predictability as the days flowed into weeks, weeks into months, months into years. Now, I have learned to live life moment to moment, day to day, week to week, month to month, as so little is predictable, as it was before cancer. I truly hate to accept this concept, but cancer really does own me and my life. Living with Myeloma, treating Myeloma, dealing with Myeloma and side effects really does own my life. It has for over 6 years. I must accept this.

With my current Kyprolis+Dex steroid treatment regimen on Monday Tuesday, Monday Tuesday, Monday Tuesday (that’s 2days per week, 3weeks per month) my “functional” days are limited. I surprisingly feel “ok” on treatment days with the delightful steroid prop up, but I don’t do much else on chemo lab days. Predictably, thank you Dex steroids, I don’t get much sleep Mon and Tues nights, and often into Wed night, so by the time Thursday comes around, I’m a tired zombie. And predictably, I begin to feel GI-yucky later on Wed, into Thurs and often Fri. (Posting last minute now because a terrible night of GI “stuff”… ugh!) I can often look forward to being “somewhat ok” by Sat and Sun. Which brings me to my point of reference above, how myeloma and side effects own me and Illness becomes a Lifestyle.

Just when I think I might be ok, and I think I can venture out of the house for something social, boom! my plan backfires, lol literally. Late March was my son’s 30th birthday. A really big deal on so many levels. Big because my baby boy is 30, and we don’t know where the years went, but especially since he’s a cancer survivor too (see my January 2012 posts) and we are all here to celebrate 2016! By Friday I thought I would be ok for a family dinner date, as by Friday I usually look forward to having an appetite and being able to eat. Long story short, out of  NO where, thank you unpredictable side effects, I barely made it home to my bathroom. You have no idea! Seriously myeloma, give me a flippin break! We had a great time, ate up a storm, laughed and reminisced and I really thought I was ok. We weren’t close to home. 40-50 minutes away. I was over confident eating as I did. Boom! OMG, Get Me Home FAST! I just can’t believe how my GI system sabotages and challenges me whenever I try to have a moment of fun. Myeloma and side effects, you do own me.

That was late March, and between then and now, I can’t even explain the ups and downs in my physiological life. It’s a terrible way to live, not knowing how you will feel each day, moment to moment, event to event. I look back over the years, and how I tricked myself into false normalcy after my July 2010 stem cell transplant and recovery. Yes I had remission for a few years, but most of that time I was on maintenance chemo (Revlimid). I think back how I tried to engage in “normal” life activities, go back to work, socialize, etc, but I was only fooling myself, dragging myself to things, not eating before (or during) events, so I wouldn’t have GI disasters, etc. Well 6 years of living with and treating myeloma has certainly taken it’s toll on me in so many ways. And the FATIGUE is just so disabling. I used to be a ball of fire, go go go, do do do. Now, one event a day, if I’m lucky, is all I can handle.

Next case in point of how myeloma and side effects own me, my life, and how Illness Becomes a Lifestyle:
Out of  NO where this past Sunday night, while doing nothing out of the ordinary, (just reading articles online), all of a sudden my heart begins to “malfunction”. You know that sound and feeling when you turn on a water hose that hasn’t been used for a while, and the water sputters and goes “blub blub” through the hose? Well for what was (fortunately) only seconds, or under a minute, my heart was jumping and sputtering, and I could feel that “blub blub” feeling, as it was doing some sort of somersaults in my chest to correct the flow. I’ve had “fluttering” before, but this was really jumpy with that crazy “blub, blub”. It felt like my little heart was flip flopping around, doing crazy gymnastics, and then… all of a sudden, I started to feel faint and light headed. For a moment there, I thought, ok Julie, This Is “IT”. This is how you’re going out. I thought I was going to faint, and I had this weird eerie feeling of “that bright light” taking me away. But as suddenly as all this happened, my little heart and valves flipped around properly, and I was ok.

I sat there stunned, and tried to take calm deep breaths, ensuring my physiology was working properly. See, I’m not one to panic. As a matter of fact, I under-panic. My medical experiences are such “out of body” experiences, where I’m fully in the moment experiencing it, but watching from the outside, as I just can’t believe whatever is happening to me, is happening to me, so I never panic.

I quickly started to research this event online and also reread Kyprolis side effect warnings and knew I should call my medical facility, or go to ER to be checked out, but heck it was 10:30/11:00 at night and I couldn’t stand the idea of the ER (germy) chaos. So I continued to deep breathe, monitor my heart rhythms, and hope for the best, thinking ok, I have a chemo appointment tomorrow, I’ll just have them check me out there, and go on with treatment, etc. I woke Jim to let him know of this, and he of course was stunned and worried, but I was firm that I did not want to go to the hospital. So I went to bed, and hoped to wake up in the morning…

I did indeed wake up! Whew! So I gathered my senses about me, and called my oncology office. They of course were not happy I waited so long to consult, and immediately cancelled my Kyprolis treatment and insisted I go to ER to be checked. Ugh! No ER! So I called “Urgent Care” and was able to get an appointment for 1:30. Long story short, I was thoroughly checked, had an EKG and fit with a 24 hour heart monitor. The EKG fortunately did not show anything dramatic, and we’ll see what the 24 monitoring shows. I’m rescheduled for Kyprolis for next Monday, so back to my “regular” schedule. Thank you body for all your unwanted surprises and making me constantly feel so ABNORMAL.

I took a cool “selfie” with all my wires, changed it up with an artsy app, and would love to post it here, but that would be TMI, so above is what the 24 home monitor rigging looks like.

Seriously life, can you please give me a break! I used to love spontaneity, and interesting fun challenges in my life, but this is getting ridiculous! Welcome to when Illness Becomes a Lifestyle.

And one more story: I had a crazy out of body falling experience several days before my heart issue (completely unrelated). I was admiring our beautiful roses and taking pictures of their vibrant colors, when suddenly I lost my balance and footing! I’m not terribly athletic, but I’ve always been very sure-footed and not prone to falling, so when I began to fall, I was shocked I was actually falling. I never fall! As I’m going down, I’m laughing inside, saying this really cannot be, this can’t be happening, noooo… I’m tripping and falling… into a beautiful yellow rose bush, that has EXTRA HUGE THORNS. I said, NOPE, NO WAY, I’m not going down like that! I managed to become like a pole vaulter and magically propel myself forward a bit, enough to miss the giant thorns, only to see the edge of the brick planter awaiting my forehead, arms and other body parts. I again magically propelled myself forward, like an expert pole vaulter, and managed to evade the thorns and bricks, and landed splat! on the lawn, phone securely in hand, undamaged, with awesome pictures of our roses! It was the weirdest slow motion event ever, with multi events within the event! I could have been really hurt, but I managed to somehow evade disaster. I’m too aware that my bones are probably not the strongest due to myeloma’s damage, and a fall could be life changing, and not in a good way. Why life? Really! Why all these little constant tests and challenges in my life? I just shake my head and laugh…

Bricks! Thorns! Disaster averted!

 See those huge thorns hiding there!

The colors this year are stunning!
My pole vaulting assistants

So Velvety!

Stunning colors and beautifully scented too!

And so…
From a treatment perspective, being back on Dex steroids is proving it’s advantages. I am happy to report that my labs have improved from Feb and it looks like Kyprolis+Dex is my magic elixir. No doubt I am still immune compromised and that limits me in so many ways, but I am so fortunate this combination is munching up and suppressing those evil myeloma cells.

Here’s my recent stats for perspective:
(I’m IgA myeloma)
Normal IgA = 70 – 400, Normal IgG = 700 – 1600, Normal IgM = 40 – 230

Date                      IgA        IgG         IgM

10/18/15              1890
      240         < 18
11/18/15              1440
      233         < 18
12/2/15                862
        230         < 18
12/30/15              482
        262         < 18
1/18/16                426
        228         < 18
1/27/16                432
        221         < 18
2/10/16                551
        227         < 18
2/28/16                635
        226         < 18
3/22/16                533         242         < 17

M Protein (Normal = 0)

July = 1.26
Aug = 1.01
Sep = 1.37
Oct =  1.58
Nov = 1.12
Dec and Jan = Not Detectable! thank you Kyprolis + Dex
Feb =  0.62 Ugh! Quite a jump in a short period of time
Mar = “Abnormal”, but no M-Protein number mentioned

So how’s that for a “quick fix”. Although Dexamethasone makes me crazy on so many levels (I feel so yucky right now), and Kyprolis may be affecting my heart, and other organs, I’ll “suffer the consequences” as it’s said, if this combination keeps my myeloma numbers down. To be clear, as so many wish for “remission” for me, I don’t live for that anymore. I learned my lesson from 2010,  2011, 2012, 2013 that I WILL ALWAYS BE IN TREATMENT. My “type” of myeloma is unrelenting, “aggressive” and “high risk” (as I was told at diagnosis), and it will never ever disappear. Myeloma is chronic, incurable and forever. Treatment is forever. Case closed. I accept that. Bring on the meds to extend my life.

Final story: As you’ve figured out by now, I love animals. My “retirement dream” was to continue to help people and rescue animals. It’s a beautiful reciprocity. Animals heal hurting humans, as the humans are healing the hurt animals.
Myeloma ruined my plan, and I have accepted that, so I help others, help others. Recently, I sent a personal comment to one of my favorite horse rescues, HiCaliber . I told the story of how when I’m in the chemo lab 2x per week, 3 weeks per month, I read their heart wrenching rescue stories, “live” on Tuesdays, when they’re at auction. I told them how I laugh, cry, giggle, get mad, etc, at all their stories. I told them about my incurable cancer diagnosis. I told them about being in the chemo lab. I told them about all the other patients in the chemo lab. I told them about my nurses telling me to stop jiggling my hand IV, as I scroll non-stop through their posts. I told them they are doing my “retirement dream”. I told them how they uplift me, inspire me and entertain me during my chemo infusions. I told them how much I love and appreciate what they all do to save lives, daily, weekly. I told them how they help me get through my chemo infusions. I told them I donate when I can.

I received a sweet return message letting me know they read my comment and they wanted to name one of their rescues in tribute to me. I was so touched and loved their idea. I asked them to choose a “broken”, hurt, injured, sick horse that needed help, like me, and name that horse after me. They wrote back, telling me they had “that” horse, still unnamed. They selected this beautiful mare, who had been tossed away at the recent auction. No one knows these horse’s backstory. Most don’t come with registration papers or history. Most are anonymously thrown away. There’s little chance of finding out who they are, what happened to them and why their humans betrayed them, threw them away at auction, hurt, injured, sick, and without hope. Now, this lucky mare has hope, thanks to HiCaliber.

Meet “Jewel(s)”

Isn’t she a Jewel! Tossed out sick and injured. Almost loaded onto the “wrong trailer”, if it wasn’t for all the amazing people at HiCaliber, saving these precious lives! We named her Jewel(s), as “Jules”, “Jewels” is my nickname.

But wait… there’s more. You’ve read how I am fascinated with my cancer numbers, and always seem to have uncanny connections with numbers. Well get this: it turns out Jewel is a registered Thoroughbred, and her registration number contains my birth day, 22. She’s also 22 this year, as she was born in 1994. She was rescued by HiCalibur on March 22! And they contacted me about naming her on my son’s recent birthday. And finally, completely unplanned, I took my March myeloma marker blood tests on… yes you guessed… March 22! How’s that for symbolic numbers!

But wait… there’s more: Take a look below. She’s s an almost exact twin of my beloved 2nd horse, Skye. He was with me from 1980 until he passed, get this, around the time Jewel was born! They both are Bay in coloring, have a little white star on their foreheads, and one little white hock-sock. Seriously, how’s that for uncanny “coincidences”? And not to forget, she was selected at random for me to name. None of us knew any of these remarkable “coincidences” beforehand!

Here I am, 1981 with Skye. He and Jewel, so similar! wow, just wow!
~ ~ ~ ~ ~

So that’s my story.
Well not really. I could write for days with so many things going on in my life! Cancer, Myeloma, Treatments, Side Effects, Physiological stuff, Psychological stuff, Family, Career, Decisions, Disability, Retirement, What to Do, Where to Go, How to Adjust, Why is all this is what it is..

Oh well, keeping it positive, I’m naming my house:  
“Myeloma Mountain Animal Rescue”

Hopefully my Cardiology report will be insignificant and I can carry on, as is. I am weary of decisions and focusing on cancer, chemo, treatments, etc. Most of all, I am weary how Myeloma has changed my life, my focus, my dreams, my activities, my sense of self, and my daily functioning. “Illness Does Become a Lifestyle”, accept it or not, it will always be there, in my face or lurking in the background. That, is my reality, and I choose to live in reality.

My life is still amazing, and I am grateful  for every breath I can still take, every view I still see, and for everyone in my life that impacts me, and how I still impact them.

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