Life in Myelomaville- One Day at a Time, One Treatment at a Time

Hello 1.29.19

No new news to report from my status on 1.19.19
Hoping my stats are even better in February!

I am so thankful this triplet of Velcade, Cytoxan, 40mg Dex steroids is making a dent in overpowering Myeloma... well making a dent to an extent, somewhat, that is. My IGA didn't plummet to normal or anywhere near lol, but it certainly moved in the right direction! Last labs you can see on my previous post show I am still 3x the High End of Normal, but that's sure an improvement on the previous months!

I marvel everyday, every treatment, what my body has been through and able to handle for 9 years. Still this myeloma diagnosis and experience is surreal and an out of body non reality for me. Yet I do what I have to do, daily, weekly, monthly, and so on. "It Is What It Is"... I tell myself all the time. Carry on Julie, you're not in control any longer... On treatment days I get up and take 10, 4mg Dexamethasone Steroids, which = 40mgs! Then a few hours later, I show up for my Velcade shot. A few hours later I take 8 Cytoxan pills at 50mg each for a total of 800mg. Seriously, how can I be doing this? How does my body tolerate it? I would love if there was a little camera I could ingest, that would show the adventures going on inside of me. How incredible would that be! I'd love to see what is happening to me cellularly, chemically, biologically. I'd love to see how the cancer cells grow, and take over. I'd love to see how the chemos ambush and trick the cancer cells, killing them off, or disabling them. I love science, but I'm not smart enough to fully understand all this amazing stuff!

Yes, I keep believing, hoping new myeloma killing meds

continue to be developed... 

saving my life and all my myeloma warriors

10 Dex Steroids + one delish Banana protein shake in the morning.

8 Cytoxan pills + one delish Vanilla protein shake in the late afternoon
I do have nausea later in the night, but not too bad

So far Velcade has Not gifted me with awful Neuropathy!

I avoided Velcade early on, as so many myeloma peers

warned of the awful Neuropathy side effects. 

Cross fingers, it continues to work,

with minor side effects!

And here comes the needle!

Not so bad after all. 

Amazing what we all can get used to!

My life continues to be consumed in health issues for me and my hubby. Seriously unbelievable. I have been working on Acceptance, letting go of what I thought this time in my life was going to be. Neither of our situations are Curable, and sadly the reality is... we will both continue to decline. I honestly don't think about "Cures", as that just sets one up for disappointments. I think in terms of daily Quality of Life, just getting thru each day with minimal "drama", feeling good- as best we can, finding small joys daily, and always hoping my current treatment lasts a long time, and I don't become "Refractory" to my chemos too quickly. 

Fortunately there is a lot of research going on with Myeloma. There are new medications being developed all the time. During the recent American government shut down, I heard it was affecting cancer research, grants, etc. I began to really think of the potential personal impact. Wow, what if my current medications couldn't be produced. What if I suddenly didn't have access to medical care. What if I didn't have access to treatment, in the amazing way I do. What if research and clinical trials were halted. I thought about all the zillions of patients dealing with these issues now and beyond the "shut down". Well, I think about this all the time when I read about patients struggling to be treated, not having access to medical care and life saving medications. I am happy and proud to pay for my insurance, Dr visits, clinical expenses, medication copays, etc. And I know the answer to my above questions, as my stem cell transplant Dr answered those questions few years ago. Remember?

I directly asked him... "What if I decided to stop all treatments? What if I was just tired of all the side effects, my limited Quality of Life from all the chemo meds, and decided to STOP treating"... "HOW MANY YEARS WOULD I HAVE LEFT?" He leaned closer to me and Jim and said... "I'm not God, and I don't have a crystal ball, but Julie... you DON'T have YEARS, you'll have MONTHS"... 

Yes, I think about all this all the time. Myeloma medications are literally saving and prolonging my life. Continual treatment is my life, one day at time, one pill, one injection, one infusion, etc, at a time. I  never wanted anything to "control" me, yet now... so many things do, on so many levels. I'm not in control of my destiny in so many ways... So much for a "carefully planned life"...

But as I always say, I am ever so grateful for all the wonderful things and people in my life. I am one of the lucky ones for sure! It's really incredible what everyone endures on their journey called life. 

Here are some helpful and informative Myeloma links for you:

https://www.myeloma.org/what-is-multiple-myeloma

https://themmrf.org/multiple-myeloma/treatment-options/standard-treatments/

https://www.myelomacrowd.org/myeloma-clinical-trials/ 

https://myelomabeacon.org/pr/

https://www.cancer.org/cancer/multiple-myeloma/detection-diagnosis-staging/survival-rates.html

If you are a myeloma patient, I highly recommend the Myeloma Crowd Facebook support groups. They are an invaluable source of information, support, understanding, sharing and myeloma comradery.  https://www.myelomacrowd.org/connect/

Cheers to February and a new month of new hopes. To all of you enduring the Artic frigid wintry blast, snuggle up, and stay warm.

Remaining Happy, When You Just Want to Scream

1.19.19

Hello 1.19.19.
So fun to type out 9's! Yes, 9's. 9's representing 9 years of battling and living with Myeloma.

My topic of this post was going to be philosophizing about Happiness. Being Happy. Remaining Happy. Finding Happiness. Maintaining Happiness while dealing with a terminal illness, treatments, and being sick. I was going to write all about Seeking Happiness and Remaining Happy while processing life's Disappointments, Lost Dreams and Goals. I was going to write about Persevering even when life throws you big curves you never envisioned, yet committing to always move forward with Positivity and Gratefulness, trying to never lose that sunshiny optimism, and the "glass half full, vs half empty" perspective.

I was going to write about Happiness since people always say..."Be Happy! Always be happy." I just want to Scream!!! How much "happier" can anyone be, under my circumstances! I am so very happy and grateful for my 9 years of survival. Happy for so much, for (almost) everyone and everything in my life... OMG, I am one of the most "happy", positive, lift everyone else up, people in the world. That was my "business", my "mission" in life as a Counselor. Always helping others see potentials and strive for them. Always helping others remain positive against the worst challenges. Always helping others analyze themselves, their circumstances, and how to move forward, improve oneself... Onwards and upwards towards your personal rainbow. Always moving forward, always looking for the sunshine. Always looking for the glitter in the muddy waters.

But my life was stolen from me 9 years ago. And each year has been more challenging than the previous. Ah, Suck It Up Buttercup, right?! Life isn't all about it all working out all the time. Everyone is challenged. Everyone has dark clouds. Everyone has so much on their plate, often buried very deep within... Early on in my career, make that in college and grad school, I fully deeply realized that EVERYONE HAS "SOMETHING". Everyone has Challenges. Everyone has Battles and deep battle Scars. Everyone has a Story. Everyone has ghosts in their closets. Everyone has damage. Everyone has had to deal with, overcome, SOMETHING... but it's all about degrees and subjectivity, how those challenges are dealt with individually, and how the person moves forward,... or Not, in life.

We all have something, we all have mountains to climb,... and things can always always always be so much worse then our story..... What happens to us is personal, and we process it personally, subjectively. How I react to something is entirely different than how the next person does. Our battles and challenges really shouldn't be compared to others. But we do. All our plates are full. It's a matter of degree, and again, how one processes obstacles, disappointments, physical and psychological challenges. Some of us can regularly find the positive in the negative, the humor in the tragedy, the sun in the dark clouds. Some can't. Some of us can find the best in the worst. Some become the worst as a result of challenges and disappointments. Just look at society, the world. There's so much anger, hate, directed at self and others. Some can overcome and heal, others can't. Some move forward, others won't allow themselves to move forward. Yes, this life is a continual challenge, and the older I get, the more I realize how complicated it all is, and how it seems to become more complicated all the time. I naively thought the older I got, the simpler life would become... wellllll.... that's what I had "planned" on...

Yes, I was going to write all about Happiness and being Happy. I was going to write about how being positive, grateful, optimistic, happy, looking on the bright side is healing and life sustaining... it really is...  But my challenges have become very challenging for me. I am processing disappointment, a lost life, lost dreams, lost goals and plans, lost abilities and capabilities. Of course I'm always thinking about how amazing 9 years of survival is, yet, how scary it is too, as it means the longer I live, the more treatment options I've used up, and the more I wonder about what will keep me alive, when Myeloma overpowers the current treatment I'm on, and it fails...  I am still Happy, but honestly, if you really want to know.... I have a lot of anger, frustration, disappointment, and ask WHY ME often. Why me, after how hard I've worked all my life. Why me, when I've overcome so much in life prior to Myeloma. Why me, why more challenges. Why at 50, terminal, incurable cancer. Why wasn't I given a break? Or rather a reward for all I did all my life. Why wasn't my 2nd half of life, full of realized dreams, goals and some light-hearted fun. Yes beneath all my positivity, happiness, gratefulness, amazement... I am sad, mad, angry, shocked. I feel sabotaged, undermined, tricked by the Universe. Yet, the minute I write this, say this, I feel I shouldn't... as I have so much that is Good in my life. So much to be Grateful for. So much Not to be angry about. So much to be Appreciative for. Ah, this life of opposites for me...

Happiness. Gratefulness. Appreciative. For what it once was. For what it is. For what it might be. Yet angry, sad, overwhelmed for what it is. Really really sad and disappointed for what could have been. Yes, my life as I knew it, was stolen from me. Myeloma and treatments have so limited me and what I can do... And I will end here, as I just don't want to wallow in negativity... but so you know... all my thoughts and feelings are exacerbated and exaggerated exponentially by my husband's decline with Alzheimers. I think, no... I know... my extremes of emotions is due to the sadness I feel regarding our stolen lives and the daily complexity of our lives, with me becoming his caregiver, caretaker, his cognition. Yes I know... it could be so much worse.... But it is so sad, so intense, so disappointing...

Ok... enough of all that...
My Beta2Microglobulin results slipped through late yesterday, and... and... yessssss... Good News!
And even more good news has come in! See below. I should probably delete this post, and go back to writing about HAPPINESS!!! As I sure feel it now, thank you chemicals for working and pummeling those mean and devious myeloma cells!

Just a few months ago, it was as high as 2.9!!! So within all the negative craziness of our lives, I'm guessing my current triplet of Velcade, Cyclophosphamide-Cytoxan, Dex steroids is doing some serious pummeling!!! Thank goodness for some positive news... hopefully... but who knows what my IGA is doing...
Wish Kaiser hadn't "upgraded" their online view of labs, as it's difficult to capture a retrospective screenshot of where my past results were. Boooo on them. Anyway, I will see my Dr on Monday Jan 21, and have my full Myeloma status labs back then. Check back friends, as I will add those labs to this post, so we don't have to wait for my 1.29.19 post :)) 

LABS JUST CAME IN! LOOK BELOW! 

Thank you for reading, caring and commenting. I hope my honesty and candor is interesting, helpful, insightful, and thought provoking for you... Hoping your life, your challenges, your mountains are manageable, or even inspirational and rewarding for you.

BE SURE TO WATCH THIS

IT WILL FOR SURE PUT A SMILE ON YOUR FACE

AND IN YOUR HEART

YOU MAY EVEN DANCE A BIT :))

"Happy" doggies, and cat video :))

LOOK WHAT JUST CAME IN! THE LABS ARE NORMALLY NOT AUTO-RELEASED! GUESS "THE UNIVERSE KNEW" I NEED A LIFT!!! WHOOHOO! TALK ABOUT HAPPY! YES I AM!

THANK YOU VELCADE, CYTOXAN, high dose DEX STEROIDS!

THANK YOU CHEMICALS! 

THANK YOU MEDICAL SCIENCE!

THANK YOU BODY FOR BEING ABLE TO HANDLE 

ALL THIS CRAZINESS

THANK YOU EVERYONE!

.

Hello 2019 ~ Cheers to Posts on the 9s! Wow 9 Years of Myeloma Madness

1.9.19

Hello 2019 and Happy New Year Everyone!

How fun to write 1.9.19
99999999999999999999999999999

9 Years with Myeloma
9 Years surviving Myeloma
9 Years of Myeloma Treatments
9 Years I Never Thought I'd Have

In Myelomaville, 9 years is a BIG DEAL!!!

I have 999999999 zillion thoughts to share... on so many levels, about so many things... but I will edit my thoughts and be back in 9 seconds, or 9 minutes or 9 hours to finish posting :))

***************
So here we are, January 2019. We've rolled the calendar over to a fresh new year. But just think,... how many have already received, or experienced life changing news or events in just 9 days of the New Year. 9 years ago, I was reeling from my new Myeloma diagnosis. Our lives are just so "fragile", and can change in seconds. Good change. Bad change. When life is flowing along, I don't think many of us give potential "tragedy" significant thought. We just don't think "bad things" can happen to us. We're aware of terrible things, events and challenges that happen to "everyone else", but we often think we're immune. We don't personalize the "What If". We carry on, presumptuously, safely, robotically, with our daily lives. Doing, planning, going, expecting, assuming. Assuming what was, what is, will continue to be. Then boom! Suddenly our lives are forever changed. Something, somewhere, to someone close to us, or to us, happens. Then life is never the same. Never ever the same, ever again.

No matter how carefully we plan, how well we take care of ourselves and our loved ones, "something" is bound to happen. That's just life. I've learned tragedy, challenges and heartbreak are the "norm". Life is not Unicorns, Rainbows and Rivers of Glitter. Life is Hard. Life is Challenges. Life is Pain. Life is Being Tested all the Time. No matter how much we think we can control outcomes, ultimately, we cannot. Perhaps because I was a Counselor/Advisor all my adult life, I felt a greater ability to affect outcomes and destinations. I was a healer, helper, facilitator, eye opener, dream creator. I inspired, lead, questioned, proposed, and helped others see themselves and life's potentials clearly. I opened doors and windows of opportunity for anyone that was willing to work for their dreams and goals. I always felt hope for everyone and everything. I always believed "if there's a will, there's a way". I was the eternal optimist. I believed awareness, change, options, choices, education, gave one unlimited, limitless possibilities. Possibilities to rise above. Rise above pain, disappointment, tragedy.

But tragedy always happens. In our little worlds, and the big world. Do you know anyone that's immune? Do you know anyone that hasn't experienced some sort of tragedy? Perhaps the older the we get, the more aware we are of how every life is touched by "Something"... It's just a matter of degree, right? How much, how deep, how tragic the tragedies are. My life went from hard work and commitment equaling positivity, happiness and a semblance of control. To a life quite out of control, regarding the health challenges that continue to escalate for me and my husband. No I didn't think I was immune, but I just never thought what I am currently living, would be my life.

9 years ago, I went from thinking I was overall healthy, to a terminal cancer diagnosis. I went from thinking I had control over my life, my body, my future, to learning I basically had little control over much of anything any more. Why I am still here today is a combination of medical science and medical miracles, with a dash a good luck, and internal organs that have been able to withstand 9 years of myeloma treatment. Why I am still here, is absolutely amazing to me! I am grateful and appreciative beyond words. But being here still, has been an incredible challenge.

9 years of myeloma treatment. 9 years of being sick. 9 years of wondering if and when, I'll run out of options. 9 years of never feeling "normal". 9 years, always aware my body is full of cancer. 9 years of an internal fight. My body trying to kill me, as medical science tries to outwit ever morphing cancer cells. Seriously, if you are not on this type of journey yourself, wrap your head around that. I still can't. 9 years of various combinations of treatments: chemo, immunotherapies, pills, injections, shots, medications, etc. And a Stem Cell Transplant. And alllllllllll the crazy side effects, completely ambushing my life. I can't fully wrap my little head around everything I've been through and continue to go through, to stay alive.

But I am Alive. Alive and still up for the fight. It's a daily fight, but I'll fight as long as there are options to treat me with, that allow me some level of Quality of Life.

Currently, since late September, I have been on a weekly cocktail of:
40mg Dexamethasone steroids, paired with Velcade shots in the belly, paired with 400mg of Cyclophosmamide-Cytoxan chemo pills. This happens every Monday. 10 steroid pills, 1 shot, 8 chemo pills, all in one day! How can the body handle that? Just amazing what medical science has figured out to kill cancer cells, but not kill us in the process. Well, me at least. The treatments haven't killed me, they've successfully killed myeloma off and on for 9 years!

My status labs are next week, and I'll find out the effectiveness of this treatment at my next Dr appointment on January 21.

Meanwhile, tragically, my husband Jim continues to decline with Alzheimer's. I'm not sure which is worse. Terminal, incurable cancer, with treatment 24 7 for life, or having one's brain slowly betray you, stealing your ability to analyze, do critical thinking, creating complete confusion about life's vital tasks that should Not be confusing. Complete confusion, disorientation, about things we all take for granted. I knew Jim would age ahead of me, and become "old" before me, but I never thought such a talented, incredibly capable man would have his functionality stolen away from him, as is happening to him daily, weekly. My brain thinks for 2 now. My broken body, has taken over so much, as his breaks down more. The biological trickery is crazy to witness. The brain confusing that which should not be, never was, confusing. We are living a very fragile fine line, that if either of us loses mobility, life as we know it, will never ever be the same. But I remain ever grateful for the wonderful life we had, and to a degree, still have. I am ever grateful and thankful for the wonderful insurance we have, that allows for treatment of our ridiculous situations. I am forever grateful for all the wonderful, supportive loving people in our lives. As awful as things are, they could be so much worse. I am appreciative, grateful, blessed in so many ways.

Hope your 2019 is going well so far. Thank you for checking in, and caring about my life, blog and posts as you do!

Live happy, live well, and make a difference somewhere, somehow, 

with someone or something as often as you can