Happy New Year... You Have Myeloma

12.30.17

8 Years Ago Today, on 12.30.09, I Was Diagnosed with "high risk" Myeloma.

Today I celebrate my life, my health (what "little" I have), and all those in my life that have helped me stay alive for these past 8 years! On this 8 year anniversary of my Myeloma diagnosis, I can't completely nor adequately express the gratitude and "surprise" that I am still here to write this post.

8 years ago today, I was given a death sentence. 

I had never heard of Multiple Myeloma, as most of you never had either. I was told a dizzying amount of technical medical information that day, that changed my life forever. I was unable to comprehend what I was being told. I sat in utter disbelief. Jim cried. But one of the main statements I absorbed, was that Myeloma, Multiple Myeloma, is incurable, and I would be in treatment for life, whatever length my life forward would be.

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

Was I scared? No. I was shocked. Too shocked to be scared. Totally stunned. This was news that didn't fit with my life plans, and I just couldn't fully process what I was told or how terminally ill I was ... then, now and for my forever. 

See, on Dec 18, 2009, I had my first painful, reality awakening Bone Marrow Biopsy. It hurt physically and mentally. That was the first slam of my new reality, of how serious my situation was, as up to that point , I just thought I had very low blood counts due to extreme anemia, and a severely compromised immune system.

What I didn't know on Dec 18, I found out on Dec 30. I was told I had 70% cancerous plasma myeloma cells coursing through my body.  Cancer was raging throughout every part of me, in my plasma cells, in my bone marrow, in my blood, and I was a very sick puppy. 

Dec 30, 2009 I was given a death sentence. 

Today, Dec 30, 2017, incredibly, I have defied the odds. To stay alive, I have ingested and injected more chemo treatments in 8 years than I can count. I have survived a Stem Cell Transplant (July 2010), that many do not. I have responded to new chemo cocktails when my Myeloma numbers were almost 15 times above the high end of normal. In other words, I am a "medical miracle " and am here to tell you my story. Myeloma is trying to kill me, but so far Team Julie is winning.

Why I have survived against all odds, I'm not quite sure, but I do know my respect for medical science, traditional medical treatments and my own disbelief, perhaps a bit of denial of my situation, is the reason I am still here. I have gratefulness and gratitude beyond words, and feel so incredibly fortunate and blessed to still walk this beautiful earth.

Sunset in my backyard the other day!

I am thankful and grateful for all of you caring about me, and supporting me throughout this unbelievable journey. I am thankful and grateful for my amazing medical team of Doctors, Nurses, Chemo Lab Pharmacists, and all the Myeloma Researchers, that have medically saved my life. I am thankful and grateful for my family, friends (near and far, known and unknown) and my colleagues for being there for me, and caring about me as you have and continue to.

In honor of this amazing life anniversary, I told my kids I was going to shave my head, and proudly parade around as a visible cancer patient, so those that just don't get the seriousness of my situation might just do so, if I "looked like a cancer patient". See, Myeloma is an "invisible cancer". I don't have visible, external scars, that alert outsiders I am a terminal, incurable cancer patient. You will only see me out and about, or in social settings on the 1 or 2 days per week I feel ok, when I'm not depleted by extreme, immobilizing fatigue, and chemo side effects, or when I have taken powerful steroids so I am functional and fun. 

Most patients in the Myeloma club echo this problem. We are told "but you look so good, you can't be "that" sick". We have hair, we fix ourselves up, and try to be stronger than we really are. Our fear and worries about illness, sickness, germs and cross contamination are not taken seriously. Sadly most just don't understand that Myeloma is an Immune System Cancer, that depletes our ability to fight off cooties. Did you know most myeloma patients die from illnesses "normal healthy" people quickly recover from. Our severely compromised immune just can't fight off germs as a normal immune system can. We can't bounce back from illness that normal healthy people can. And as I write this, sadly, I am sick again. Again, with a lousy head cold, cough, fever..

https://www.myelomacentral.com/understanding-multiple-myeloma/understanding-infections/

https://www.themmrf.org/multiple-myeloma/multiple-myeloma-complications/impaired-immune-system/

https://www.cancer.org/cancer/multiple-myeloma/about/what-is-multiple-myeloma.html

https://www.cancer.org/treatment/survivorship-during-and-after-treatment/staying-active/nutrition/nutrition-during-

treatment/weak-immune-system.html

https://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/other-side-effects/avoiding-infection.html

http://myelomasurvival.com/myeloma-blog/multiple-myeloma-2017-update-why-do-people-beat-the-average-myeloma-life-expectancy-prognosis-or-how-to-improve-your-multiple-myeloma-survival-rate 

Because this is such a huge, monumental anniversary for me, here are my previous blog post thoughts and reflections, on this day, over the last 7 years! Yes, 7 years of Myeloma survival has rolled over to 8! Pretty amazing. So glad I've recorded my life and feelings here on this blog...

2010

2011

2012

2013

2014

2015

2016

I will end with words you don't want to hear, but I need to write them. Multiple Myeloma is a terminal, incurable cancer. We are on lifetime chemo, immunotherapies, any treatment protocol available, or clinical trial we can tolerate, to stay alive. To Just Stay Alive. And just because we look ok on the outside, please do not assume we are actually ok on the inside.

 Here I am Dec 25, 2009 (with my Uncle Murray(RIP)

Me, unknowingly full of 70% cancerous Myeloma cells

How sick, cancerous and "near death" do I look? 

 Dec 25, 2017- How Cancerous do I look here?

8 years later... 
After almost 8 years of chemo, immunotherapies, 

with more treatments than I can count!

Thank you loyal followers and readers. Thank you for sharing almost 8 years of my life with me. Thank you to everyone that takes the time to read my posts, and care about my life. This blog evolved in a way I never planned. I am so grateful to be here to share my thoughts with you, and hope my thoughts and reflections have impacted your life, as they have mine. 

Wishing you all the best for the remaining hours of 2017, and best wishes for a happy, healthy, rewarding 2018!

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

7 Becomes 8... I've Almost Made It 8 Years!

12.27.17

Hello Last "On The 7's Post", for the 7th year of my myeloma survival!
Wow, where has this year gone? Hard to believe that this is my last symbolic on the "7's" post of 2017. If you are just finding my blog, let me explain.

For several years now, I have posted my thoughts and status on the days representing my years of survival. Hence this year, 2017, my 7th year surviving myeloma, I posted on the 7th, 17th, and 27th. So today, 12.27.17 will be my last "On The 7's Post", representing my 7 seven years of battling and surviving myeloma. 7 years... wow!

12.27.09, I had no idea yet that I had myeloma, but we knew something serious was up. Today, 12.27.17, I marvel that I am still here, getting ready to roll everything over to the "8's", representing my 8 years of life with myeloma. My life changing symbolic date of 12.30.09, the day I was diagnosed with myeloma, is just a few days away... I'll post my diagnosis reflections on 12.30.17 in another post. But for today, I just want to fully embrace year 7.

7 years being a cancer patient, with a cancer called Myeloma
7 years living as a cancer patient
7 years of blood tests and Bone Marrow Biopsies
7 years of oncology, hematology appointments
7 years of chemos, immunotherapies, steroids, and side effects
7 years of thinking about how my life abruptly changed... forever
7 years consumed in whether I would live or die

Congrats to me, and gigantic thanks to my doctors, my chemo pharmacists, medical scientists and researchers, and those loving and supporting me for these past 7 years! We did it! I'm alive 7 years, soon to be 8 years, after my myeloma diagnosis. I think that's pretty impressive, considering how vicious, tenacious and incurable myeloma is.

So what did I do to celebrate the end of my 7th year, on a "7", the 27th? I took blood tests lol.
At my last oncology appointment 3 weeks ago, my Dr scheduled future labs for me to check my status, to make sure my treatments weren't affecting my CBCs and WBCs too dramatically. Often, in my 2nd week and towards the end of my 21 days of Pomalyst, my WBCs plummet, and I wind up Neutropenic, so she prescribes several injections of Neupogen/Zarxio to bring my WBCs up.

But I was so worried about going near any medical clinic right now, as it seems everyone is sick with some sort of awful bug, and I just didn't want to take the risk of exposing myself to cooties! See, I'm finally well from my horrible November illness, and I haven't ventured out in public much at all, all of December, so bad me, I wasn't going to go do these labs. But around 5pm, I received a call from my Dr's nurse, telling me to please go, and do my labs. Ugh... ok ok, I'll go. Yes I wore a mask, didn't touch a thing, and went as late as 8pm, hoping for less people there. My plan worked, and I got in and out rather quickly, and picked up my Neupogen Zarxio shots, without too much exposure to others. While waiting for my Rx, I stood by the open door, mask on, and walked the long way back to my car, outside, not through the office.

OCD, yes! Scared of more germs, yes! Super cautious and protective, yes! So far, my plan has worked, as I've never been hospitalized since my SCT, and haven't ever had pneumonia... what us myeloma patients fear the most.

Anyway, I feel ok, just fatigued as always. Coming off of my crash from my weekly Dex steroids I took on Christmas Eve morning, to make it through the 24th and 25th with some semblance of energy. With the New Year's holiday coming up, I probably won't have my myeloma stats until my next Darzalex infusion on January 2, 2018. Whoa! there's the 8! 2018... my 8th year with myeloma...

Soooo.... MY FINAL POST FOR 2017 WILL BE DECEMBER 30, 2017 AS THAT DAY WILL MARK MY 8th ANNIVERSARY OF MY MYELOMA DIAGNOSIS... and that's a really BIG DEAL to me. So check back for my final thoughts for 2017 and my official goodbye to the 7's and my ushering in the 8's :))

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

Better... and Let's Keep It This Way

12.17.17

Just noting 12.17.17, the 2nd to last "7" post of 2017.

Yes, December is full of significant and symbolic anniversaries for me on so many levels. I will forever reflect back on December 2009, and how my life was turned upside down, and changed forever and ever. I took labs yesterday for my upcoming 12.20.17 doctor appointment, which now that I'm thinking about it, will be my last oncology appointment for 2017.

Happily, and surprisingly, all my CBC and body organ stats are pretty close to the previous lab results I posted. Some are even a tiny bit better, since I have finally pummeled that horrible November virus that attacked me. My WBC is now a whopping 2.5 lol, RBC a bit low at 4.14, and ANC low at 1.22. So it makes sense how draggy and fatigued I am, but overall, not too bad. All others, (excluding the myeloma markers, which I will receive on 12.20), are remarkably in the "normal" range. I am very proud of my organs for being so strong, and able to handle all the years- 7, almost 8 years - of chemo, immunotherapies, medications, steroids, etc.

Tomorrow, 12.18.17, marks 8 years since my first Bone Marrow Biopsy, which was a very defining moment in my diagnosis journey, physiologically and psychologically. Up to that point, 12.18.09, I was not overly concerned about my situation, even though my doctors and blood tests hinted otherwise. The term "Cancer" and "Myeloma" had not been spoken yet, so I just thought I was "sickly" due to the bleeding out from Anemia. I just looked at my 12.18.09 appointment notes online, and saw that my "diagnosis" at that point was: "LEUKOPENIA (DECREASED WHITE BLOOD CELLS IN BLOOD) and ANEMIA, IRON DEFICIENCY". See, I had "reason to believe nothing "dramatic" was up ;)

But when my doctor and nurses were prepping me for the BMB, I began to sense my situation was a bit more "serious". And then during the procedure... oh boy... as strong as I tried to be, I eventually "lost it" and sobbed pitifully, in recognition of the seriousness of my situation. That... was a defining moment for me. There and then I knew, I had to accept, "something was up", and my life as I had known it, was changing. It wouldn't be until 12.30.09, 12 days later, that I would know the results of the BMB and the words Cancer and Myeloma would be uttered for the very first time in my life. 

And the December journey continues...

Thanks for reading, commenting and caring! Wishing you and your family very happy holidays!

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

Today, 8 Years Ago, December 14... When "It' All began...

Hello 12.14.17

Hello Myeloma... I'm still here!
Today marks 8 Years from my very first Hematology Oncology appointment :)) What a Medical Miracle I am!

Yes, my "Official" Myeloma journey began 12.14.2009. Oh my, was I clueless and in DENIAL. I truly had no idea the seriousness of my medical status, and just thought it was a blip in my life.

Very Revealing Blood Tests Began in October, November 2009, and I was quickly referred to Hematology Oncology for further testing.

I was so very fortunate to be assigned to the amazing, kind, insightful, patient, intelligent, ever so caring Dr Lee. I'm sure she "knew" what was going on with me physiologically, but went to great lengths to test, retest and test more, before my official myeloma diagnosis at the end of December 2009. She would quickly call after all my blood tests and update me about my very concerning status. She wanted to hospitalize me, and give me blood, platelets, etc, but I just couldn't wrap my head around the fact that I could need that sort of treatment. Me, when she would call- "Oh wow, really, no, must be a mistake... can I just eat things with more Iron, and Hydrate more? Can we wait a few days, and see if things improve on their own?" ahahha, I was so silly and in full denial about the seriousness of my situation...

 Dr Soon-Ki Lee

Thank you for saving my life

I was so Anemic, extremely Fatigued, bleeding out "everywhere", dizzy, blurry, mentally foggy, headaches, body aches, losing weight, sickly for the last year or so, and just trying to go forward with December holidays... thinking I would "just be ok"...

 Here I was sometime in October 2009

Yes, when I arrived for my initial Hematology Oncology appointment December 14, 2009, I really believed I was in the wrong department, and everything would be sorted out quickly, and I'd go back to being Mom Julie, Family Girl Julie, Counselor Julie, Cowgirl Julie, Let's Just Have Fun Julie... But that's not at all what happened. 

Here's a look back on my previous 12.14.09 blog post reflections: 

2010

2011

2012

2013

2014

2015

2016

I'm really really glad I started this Blog in 2010, and have honestly and candidly written my thoughts and recorded my feelings for over 7 years now. To me, my Blog is my Living Journal, Living Diary of my life... my life forever changed by my 2009 Myeloma diagnosis. I thank each and every one of you that have visited my Blog, made comments, let me know you read my musings, and that you enjoy my posts. I know some of you well, and for many years, others I don't "actually "know", but we feel we do, and others who I have no idea who you are, and where you are from, but I hope that what I have written, and continue to write, is meaningful and helpful for you. 

I'm still incredulous, and still feel I am writing someone else's story. But my lab results tell differently. My IV chemo infusions are my reality checks, and the 21 days per month of chemo pills I swallow, are daily reminders of how sick I really am, and how "tentative" my visit here on earth really is.

But today, 12.14.17, I'm ok. My vicious November illness is almost a distant memory, and I took 20mg of Dexamethasone steroids today, and I had an unusually "fun and energizing" day, with multiple laughs and several random tiny adventures. I made Breakfast for Dinner- Lox, Eggs, mini sausages, fresh berries, and we watched some funny movies. I treated myself to a bowl of Mint ice cream, paired with Peanut Butter Cup ice cream, and ended the evening with Chamomile tea and commenced the beginning of my 12th, or 13th cycle of Pomalyst. Yes, myeloma, you often win, but you Haven't won. I have.

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

Just The Facts and Stats

12.7.17

Hello December, month of monumental anniversaries...
But for now, I'll keep it short and sweet and share my recent lab results

After a lousy, crazy November, with being sick more than well, I am happy to greet December 2017. Strangely, after battling the vicious viral URI that attacked me, my recent December 3 labs gifted me with relatively good results. So strange, after being so sick, missing my monthly November Darzalex infusion, taking a few days off of Pomalyst, and not taking Dex every week, my labs came back with good news. I will note though, that prior to doing the Dec 3 labs, I had been back on Pomalyst and Dex for a week. I'm super proud of my minimal compromised immune system for rallying, and pummeling the viral bug and myeloma at the same time!

IgA down from last month!

Yep, IgA down a bit!

Not bad, right :))

Whoohoo, no Monoclonal Protein detected!

Yep, "Abnormal", but no M Protein spike

So what have I learned from all of this...

1- I have to absorb the full impact of being a cancer patient, 24/7, every day of the year

2- I should not minimize any of my symptoms, and "accept" the seriousness of my situation

3- I need to take my treatment regimen seriously, and not "cheat" on taking Dex steroids weekly

4- I need to fully accept I am not "normal" anymore, and I never will be again

5- As good as I am with saying "no" to events and people, I need to adhere to my "rules" to stay healthy

6- I need to stop being so "strong" and accept I am battling incurable cancer, forever

7- I need to fully accept that my life prior to myeloma is gone, and accept I have an "aggressive" form of myeloma, that needs to be constantly treated aggressively

Even as I write all that, it's still impossible for me to fully connect with my status. I tell people my story, hear their amazement and concern, but feel as if I am describing someone else's life story. Even as I near my 8 year myeloma diagnosis anniversary, I still feel so detached from all of this. I write my story, tell my story, describe my treatments and side effects, yet it all still feels so "out of body". Intellectually, I know my situation. Psychologically, I just don't "feel" it. As lousy as I feel so much of the time, it's the few "good days" that affirm my disbelief of my cancer status. So weird. 

Yep, I'm pretty worn out battling, fighting, ingesting, injecting, trying to heal, trying to feel well, trying to "get back to normal", an elusive, non existent normal. I'm so tried of challenges. I just want simplicity in my life. Less is More. But myeloma insists on more and more and more...

So just as I'm beginning to feel better the other day, my lower GI surprised me again with after dinner diarrhea. Ok body, fine, clean out the plumbing, but lets not make it an all night event. Maybe it was my after steroids crash? Who knows, I can't keep up with all my symptoms and side effects. But after a while, it gets ridiculous, so I take a swig of Imodium, which works like a charm for me. When I know the coast is clear, I shower and look forward to bed and sleep. But no, no peaceful end of the night for me, as when I went to blow dry my hair, my hairdryer sparked, sputtered, sparked more, and flamed, almost catching my hair on fire. Really?! C'mon life, can I have a break please!

And then the next day, gale force winds hit CA, and our poor state is burning up. I am just overwhelmed with all the devastation affecting people, animals, and the landscape. In comparison, my issues are small. I have a home, insurance, and all my loved ones (human and animal) are safe. So I shut my trap, count my blessings and good fortune, and focus on how lucky I am, as my heart breaks for those who's lives are suddenly, inexplicably destroyed. 

8 years ago December, I was very sick, and had no clue. No clue how close I was to not being here... December 14, 2009 was my first "Hematology/Oncology" appointment... 8 years later, I am still here myeloma! 

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