Good Blood? Bad Blood? Stable Blood? It's a Crazy Life, but still a Good Life

Hello 6.16.16 
Just love these numbers today!

Speaking of numbers... I won't find out my treatment status numbers until the end of this month. This next week is my chemo break week (yippee!), so I'll take labs mid week, then get back to Kyprolis infusions the last Monday and Tuesday of June. I meet with my Dr on Wednesday June 29 to consult. Will be interesting to see what myeloma has done this month, with my on-again, off-again Kyprolis/Dex schedule... Each month I get through a chemo cycle, I feel like I've completed a marathon. But a marathon that never ends. Cancer that never ends. Chemo that never ends.

I am constantly processing and analyzing how I am going to treat this monster for the rest of my life. Slow and steady, or more aggressive? Stay the course, or switch up meds as my numbers creep up?
My life has dwindled down so much, and I have so few days where I feel like doing much at all. I'm just so sick of feeling sick all the time. Such a strange way to live, considering how healthy, busy and full my life was pre-myeloma. Truly I am still mystified by my situation and abrupt changes physically, psychologically and professionally. Sorry I mention that all the time. But I go around shaking my head in disbelief so many moments, every day. 

I take my Dex steroids on Mon and Tues and head to the chemo lab for my Kyprolis infusions. So ironic, that on cancer treatment days, I actually feel the best, since I am propped up on steroids. Crazy stuff. I sometimes even feel a bit "normal". That's when I really question my circumstances and wonder what in the world happened to me. But then, I am fully reminded of "what happened to me" on my lovely crash days, such as today, when side effects abound. But, it is what it is, and my motto has always been, "you can't control the things you can't control, so analyze it, process it, examine it... and move forward... always forward"... 

Even when I see my diagnosis in writing, which is always...
It's still so hard to process.. 6.5 years later...
Still so hard to process..

 Even when I'm hooked up to chemo along side my fellow patients-

It's still so hard to accept I have cancer. Can you imagine this life?

But, I just do what I have to do, with robotic acceptance..

 Here's my AMAZING chemo lab nurses-

Just love them so much! Beautiful ladies inside and out!

So dedicated and devoted to all us chemo patients.

Thank You for You in my life!

So not much more to report. 

I have cancer, incurable cancer. 

I'll be on chemo for life. If one treatment stops working, on to another one. 

Always processing my status, my treatments, my options.

My life has radically changed, but I have much to be grateful for. There is so much beauty in this world that I am still privileged to experience.

I may not be able to do much away from my home, but I still have "purpose" in life. Purpose in saving other lives. Purpose in nurturing and caring for little lives that come my way. 
Here's my most recent adoption project: 

These darling little chickies were hatched by a teacher friend of mine as a science project for her elementary class. Before they were incubated, I agreed to adopt any hatchlings. Here they are, just hatched, in their little incubator. The yellow striped one was born Sunday June 5, and the charcoal one on Monday June 6. Nature's miracles! 

Here they are one week later when they were brought to me. I set them up in a cozy enclosure. How do you like my idea of the little swifter duster as their surrogate momma! Just look at their feathers and wings coming in already!

Nature's instincts are just so amazing. These little chickies "just know" what to do. Instinct tells them to peck for food, drink water, snuggle together for warmth (yes I have a heat lamp for them!), even though they would "naturally" be snuggled under momma hen's feathers. These little chickies "just know what to do". So amazing to take part nurturing their lives! 

Cancer can't steal these experiences from me!

 Very imprinted on us humans already. 

So adorable!!

And so I move forward. Always questioning, but always grateful for all the wonderful things in my life that cancer can't steal away from me. Nature inspires me always.  

Here's a few interesting myeloma links for you-

An ocean animal may save our lives! Sea Squirt (Aplidin) Clinical Trial Results Are Promising for Treating Relapsed/Refractory Myeloma

So I'm thinking, if I do need to switch off of Kyprolis to something else... maybe to Pom? Pomalidomide plus low-dose dex should be a standard of care for patients with relapsed/refractory myeloma


Check out these wonderful, helpful, informative myeloma links. 
Whether you are "new" to myeloma, or a "warrior" with "battle scars" like me, or a family member, friend of a patient, a colleague, etc, these websites offer infinite articles of current, amazingly helpful myeloma information: 

Myeloma Crowd: Awesome updates and support
Myeloma Beacon: Myeloma news and updates and blogs and articles  
MMRF: https://www.themmrf.org/ 
IMF: https://myeloma.org/Main.action 

The Cancer MoonShot 2020 Program 
Cancer MoonShot 2020


Thank you Revlimid for saving my life for 5.5 years! Jan 2010 - Oct 2015 
Thank you Kyprolis for saving my life since Nov 2015 to now 6.16.16! 
And of course, I have to mention and thank my best friend and worst enemy Dexamethasone!  

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

Dancing Beyond my Bubble!

Oh what a difference a week makes!

I recovered from my yucky feverish state from last week (see my previous cranky rant), skipped last week's chemo appointments as planned (yes, be mad at me!), then went to a beautiful beach wedding this weekend, felt a bit normal and most importantly had some FUN in my limited life! It's so crazy to feel so awful one week, and then so OK the next. I sure hope the cross contamination contact cooties stay away from me.

Back now to Myelomaville Mondays and Tuesdays. I totally forgot to take my weekly pre-chemo blood tests, and have to get myself together quickly to get there more than an hour early (see my results update below). Not easy for this party girl this morning :)))

Even without the power of Roids, I danced the night away (well kinda lol)
Not much stamina, and my neuropathy almost caused me to trip a few times,
but so worth it to have an evening of celebration and pseudo normalcy!
The beautiful Bride (my cousin) just finished her Pharmacy degree.

6.4.16

Such an awesome day to be out and living.
You know I love symbolism

there's even a Horse on this!

Update- 
Surprisingly my CBC's with Differential and Creatinine were pretty good. WBCs, ANC, Platelets, Hemoglobin, etc, all hovering just below the low end of NORMAL! WhooHoo! Maybe that's why I rebounded from the most recent fever yuk in a week. Goooo immune system for rallying! Interesting how these critical stats, while being on Kyprolis, are better then they've been in a long time.Yet, crazy how my IgA and M-Protein can be rising. Hmm, what's up with a stronger system, but cancer still creeping up?

I will do my full MM blood stats later in the month, after these next 2 weeks of Kyprolis/Dex, then have a status appointment last week of June. So maybe it will be a positive roller coaster this month? I know some may not agree with my philosophy to stay on the lower dose of Kyprolis, which I will continue again this month. It's so important to me to protect my organs from higher dose chemo since I've been treating for over 6.5 years now, and I am fully aware of the "foreverness" of my future myeloma treatments and how harsh this is on our bodies.

When I'm at the chemo lab for infusions, it's interesting to see and hear new chemo lab patient's shock when I tell them I've been in treatment for over 6.5 years, and that my cancer Myeloma is incurable. Seems like most can't wrap their thoughts around that concept, as most have been given a treatment stop date, for a "curable" cancer. Other's reactions to my diagnosis and situation helps me to process my crazy status. Hearing their "shock and awe" really brings it home to me, that I AM a SURVIVOR! 6.5 years is significant to be continually battling cancer!

Everyone thinks I'm "so strong". I'm really not... I just keep moving forward as if I didn't have cancer, as it's still so unbelievable I have cancer, let alone incurable cancer. So I just move forward. Always forward. One day at time. One foot in front of the other. Living life, one challenge at a time.

Thanks for checking in!!

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

Sick... again... Sick of being Sick! Caution...

Surprise Surprise, I'm breaking my theme and posting on a different 6 derivation. 6-1-16. Hello June 2016, I'm still here myeloma, and I'm not happy with what you have done to me! Apologies in advance my wonderful invisible blog friends, while I indulge in a mini pitty party venting rant.  

My head has been exploding with thoughts, musings, ponderings, and overall life realizations and recognitions. (Ha! so what else is new, right!) The other day, in my overwhelmed feverish state, (yes I had a fever again!), I was going to post a raw frustrated, depressed, yelling rant about my current circumstances, but you were saved by how awful I felt. I really wanted to unleash and vent, but good thing my lack of health and helium prevented an unfiltered post. This spontaneous post is a "healthier version" lol.

So what the heck happened to me, you ask?
"I Don't Know!" she wanted to scream!
I Really Don't Know What Happened to me! But I felt so awful... again, yes again.
Did I experience an extra long chemo/steroid crash? Did I get public cooties contamination from my break week of marathon, unexpected, out of the ordinary (for me) experiences? Did I have some other freak physiological thing happen? I Don't Know What Happened. But here's what happened:

Following my crazy break-week of activities, the week where I (somewhat) let my antibacterial guard down, where I actually lived life, participated in life and did "normal things", normal things that shouldn't seem so extraordinary at all. Just doing things and going places. Living life normally. "Doing" is often extraordinary to a cancer patient in continuous treatment...
And then... I wound up sick with a weird fever thing! Why Myeloma, Why?

Yes, following my break week, I returned to the chemo lab, had my doctor consultation on Monday, and did my regular Kyprolis + Dex for 2 days. As usual, I began my slow crash decline on Wednesday, feeling more yucky and blah on Thursday. Thought I would rebound a bit Friday, but I didn't. I didn't rebound at all. I felt drained, exhausted and strange. Thought then I would rebound on Saturday, but didn't. I felt so yucky and I couldn't figure it out, but I "forced" myself to think I was ok. I thought, if I do what my "head wants to do", my ill-feeling body, will follow. Go. Go live life I tell myself. Push forward. Go. Try to get out and about, even if for a tiny bit, I tell myself. So I pushed myself forward, Jim and I going for a ride in my lil Bucket List Bug, to visit a friend to deliver my crazy healthy Yam saplings, that had turned into amazing, reaching for the sky, vines. My friend Kathy and her husband Scott were the perfect "adopters", as they had a beautiful thriving garden. These vines grew from yams left too long in our pantry. Amazing! Nature's will to live, on all levels, is so remarkable. These vines, so desperate to live and thrive... just grew and grew! Yes, analogies of life's will to live, surrounds me all the time.

I felt really strange all day. I didn't have much energy or focus. I was dehydrated, parched, headachy, and achy all over. I kept thinking it would pass. I kept thinking I was just exhausted from my past week of "play", piled on top of chemo and steroids, piled on top of the typical evil crash feelings.  Nope Nope Nope. Something weird was going on. But I refused to think I could be "sick".

We left our friend's house after a lovely visit, and I "forced" myself to drive my lil Bug the long way home to "exercise" her just a bit more. Poor lil Bug, never gets out much any more. Never gets to go to car shows anymore. This makes me realize how I have "declined" over the years, becoming more limited each year. As I was driving, I was achy, and headachy, blurry and fuzzy. Just shifting was an effort, where it's usually fun and reminiscent of my Malibu beach days . Everything was an effort. I knew something was up, but I refused to accept it.

We get home, I force myself to do minimal horse and animal chores, all the while knowing, I was not well at all. Something was up. Parched like the desert. Achy, dizzy, yucky. Rumble rumble went the GI. Tried to eat, but something told me not to. Hello bathroom for hours. Hello PeptoBismal. Hello weird GI stuff. Hello dizziness. Hello FEVER! Hello weird heartburn. What the heck? I don't know. I didn't know what was going on. Restless sleep. Not much sleep. Felt really yucky. Yep, I have a FEVER. What The Heck?! A Fever? Nooooo, not again!

So all I could do Sunday and Monday was succumb to my physical awfulness. Everything was an effort. Living was an effort. Everything I needed to do, was an effort. I HATE FEVERS. But I know they have a purpose. I coaxed and cajoled my fragile immune system to rally. I begged my fragile immune system to rally, to fight this invasion of whatever. My fever went from the 99's to the 100's. I thought I was in for a "February Fungus" redo. I pleaded with my body to rally. "Please body, please rally. Please don't get too sick. Please stop making me feel so awful". All I do is suffer. What's up with all this suffering. Why me? What did I do to deserve this. Why am I always sick? Why do I always feel so yucky. Cancer yucky. Chemo yucky. Steroid yucky. Recovery yucky. Why body, why are you doing this to me? Why can't I be ok? Why can't I be normal. Why? Why me? I crashed mentally...

My fever topped, then stopped at 101. Then it began to subside as quickly as it attacked me. Late Monday night into Tuesday I began to see hope again. I began to think I could make it. I began to think life was still worth living. I began to see hope again. I couldn't stand seeing my face in the mirror in the bathroom. What has become of you Julie. You're so sickly, you look awful. Your hair is thinning, your skin looks like "death warmed over" (my dear Mother's term), your life has been taken over by cancer and cancer side effects. The counselor is counseling herself to be ok: This too shall pass. You're better off than so many. You're very fortunate in so many many ways. You've beat myeloma back for 6 and half years now. You can do this Julie. You can be strong. You have so many that look to you for support. You're supposed to be a role model. So many need you. Your story's not over yet. Stop the pitty-party Julie. Buck up. Cowgirl up.

And so slowly I got little better. The achiness subsided. I felt hope again.

Even when I feel awful, I've learned to still try to eat a little something. How can my body rage war against the invaders without fuel. But ugh, not much appealed. And water, ugh. I am so TIRED of drinking drinking drinking water. I am so tired of being so darn thirsty all the time. Sometimes I just rebel, and don't hydrate as I should. Dumb. Well I guess I got paid back for that too, as this stupid fever thing was accompanied by crazy heart burn like non other. Like the type that suddenly wakes you up at night, and you bolt up in bed, startled awake with that weird shocking sizzle in your throat. Oh, yes... I remember you, you stupid awful acid reflux. I remember you from my Stem Cell Transplant side effects Summer 2010. Why oh why is this happening to me.

I'm better today, tonight. But at the depths of my awful feverish yuckiness, I wondered... wondered what is the "purpose" to what I am doing. Six and a half years and counting is a long time to be in continuous treatment, with NO end in sight. No reprieve. No "end date" until my End Date. Incurable cancer is daunting. Overwhelming. Treatments for life, for the rest of my life, if I want to have a longer life. Imagine, on treatments forever and ever. Continuous, continual treatments. Side effects for life. Sickly most of the time, for life. Sudden, random, unexpected GI stuff. Rarely feeling well, for life. Crazy how feeling well takes me by surprise. Imagine yucky side effects for life. Fatigue forever. Imagine all this.. Is that a way to live? Is that living? Is that being alive. I ponder, Quality vs Quantity. It really hits me sometimes. But I know, I must battle forward. I must and I will. But I do now understand why some choose to "not treat". I'm no where near that choice, but I understand it deeply. I know the desperation for "normalcy".

It's Wednesday night 6-1-16. I'm better, and will get better as each day passes. I must! I have weddings to attend, a life to live! But it's back to Mon Tues, Mon Tues, Mon Tues treatments next week, and the cycle of yuk starts anew. My life so limited now, compared to who I used to be. I morn the ol me. My cancer status is still incomprehensible to me. Life limitations have crept in over 7 years. I tried so hard after diagnosis for "normalcy". I tried to accept my "new normal", but my reality impacts me more often now. I don't like it. I don't like it all. The impact of my situation, my condition, my limitations hit me too often, as it seems I feel less well, more frequently. Yet, pulling myself out of my feverish dark cloud, I see the beauty all around me and I am so very grateful to still be here. I regain my hope and optimism. I am one of the lucky ones and I know it! As awful as I often feel, I am better than so many. But I am tired of the battle. Tired of the feeling sick and always fatigued battle. I am tired on so many levels. Tired knowing This Is My Life From Now On...
I will battle forward, not to worry. That's me. That's my nature. I know I am of the very lucky club. I am frustrated, but I am very very fortunate to still be here, as I am, how I am, where I am, and with the options I still have. Truly I am grateful and thankful, no matter how frustrated I get, living with this forever cancer.

Thanks for listening my invisible friends... I'm ok... I'll be ok.

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