9 Years Ago Today, I Learned Myeloma Owned Me... Forever

Hello 12.30.18

9 Years = 108 Months

9 Years = 469 Weeks 

9 Years = 3,285 Days

9 Years = 78,840 Hours 

9 Years = 4,730,400 Minutes 

9 Years = 283,824,000 Seconds 

Yes, 9 years ago I was diagnosed with Multiple Myeloma.
I still can't wrap my head around it...
I was staring out the window as I writing this, trying to think of something "profound" to say, but I don't feel profound today. I feel a bit empty, blank, incredulous, still consumed in wonderment. How? Why? When? Really? Got to be kidding! Not me! Wrong person. Multiple Myeloma. Terminal Cancer. Incurable Cancer. Treatment for Life Cancer. Multiple Myeloma. Myeloma. Blood cancer. Blood Plasma Cancer. Treatment will save your life. Chemo. Steroids. Stem Cell Transplant. Kaiser. City of Hope. Blood Tests. Chemo. Blood Tests. Chemo. Blood Tests. Stat. Blood Tests. Chemo. Status. My status = Multiple Myeloma. Cancer. Incurable Cancer. Terminal Cancer. Yes, but a "Treatable Cancer". 

"Your Bone Marrow Biopsy", from 12.18.2009, has confirmed your diagnosis of "Multiple Myeloma", a Blood Cancer. Blood Plasma Cancer. High Risk IGA type Myeloma." You're young for this diagnosis." I'm so sorry." So sorry to give you this news and diagnosis." Yes, cancer." Multiple Myeloma"... Incurable, but Treatable."

Lots of details. Lots of questions. Numb. Shocked. Incredulous. Not for real. How did this happen. Wrong person. The lab mixed up my blood with someone else, that's what must have happened. Blood Tests, Chemo. Steroids, Chemo, Steroids, Chemo Steroids. Blood Tests. Stat. Blood Tests. Stat. Chemo. Steroids. Chemo, Steroids, Incurable, but Treatable. Radiation. Yes, Radiation for all the holes, lesions, plasmacytomas. Radiation. Lesions. Holes. Plasmacytomas. Fractures. Bone involvement. Too many areas to treat... so much bone involvement. Radiation. Diarrhea. Imodium. Diarrhea. Imodium. Chemo. Steroids. 

And here I am 9 years after a deadly diagnosis!. A miracle survivor. More chemo rounds than I can count. Been thru almost all the standard treatments. Revlimid. Kyprolis. Pomalyst. Darzalex. Velcade. Are there any left, after my current old skool Velcade and Cytoxan-Cyclophosphamide, Dex combo? Yes. Thank you brilliant researchers. Yes. But are clinical trials next? What's next... which chemo. And if I choose to stop treatment... how long do I have??? "Months", he said, "not years", as I once thought, when I asked my SCT oncologist, a few years ago. Yes, I will continue to treat. Treat for my forever. But so sick of being sick. So sick of fatigue. So sick of diarrhea. So tired. So fatigued. So tired of not being normal. My previous normal. My life was stolen from me. Wanh, waaanh, waaanh,.... 

Yes I am so very grateful to still be here. So amazed. So proud. So grateful!!!

Wishing all of you the happiest of New Years, and may 2019 bring good things to your life, and your loved ones. Wishing you good health, no drama, dreams fulfilled, and a meaningful life. Thank you for reading, following my story and your wonderful comments. I'd love to know how long you've been reading my blog, and following my story. 9 years is a long time to be writing :)) I'm pretty amazed when I look back on all my posts, and think about all my thoughts and stories living here on this blog!

Here's all my 12.30 anniversary posts: 

https://juliesmyelomamoments.blogspot.com/2017/12/happy-new-year-you-have-myeloma.html

https://juliesmyelomamoments.blogspot.com/2016/12/7-year-myeloma-diagnosis-anniversary.html

https://juliesmyelomamoments.blogspot.com/2015/12/6-years-ago-today-and-im-still-here-to.html

https://juliesmyelomamoments.blogspot.com/2014/12/5-years-ago-today-boom-mm-forever.html

https://juliesmyelomamoments.blogspot.com/2013/12/

https://juliesmyelomamoments.blogspot.com/2012/12/

https://juliesmyelomamoments.blogspot.com/2011/12/

https://juliesmyelomamoments.blogspot.com/2010/12/

And later on 12.30.18 

we celebrated my 9th diagnosis survival anniversary! 

So amazing I'm here, 9 years after Myeloma tried to kill me!

And yes, continues to, but you're not gonna win Myeloma!

Me and my 9! 

Son Scott, GF Ashley, and Me :))

Scott and Me, and doggie Abbie :))

Ashley and Me :))

What a wonderful little Celebration of Life,
9 years of addition life, I never thought I'd achieve.
Thank you to all my wonderful Doctors, Nurses, Medical Staff
Medical Science Researchers, my family, and friends near and far!

Because of You Myeloma, This Is Me Now

12.28.18

Wow! Today 12.28.18 marks the last of my on the 8's posts (but NOT my last post for the year :))

For those that have been loyal followers for years, you know that I have symbolically posted on the days representing my number of years of survival, hence this year on the 8's, my 8th year of surviving, and living with Myeloma. Yes, my 8th year is rolling over to 9. Hard to wrap my head around this "accomplishment". 8 going to 9. For me, and all myeloma survivors, each year is such a milestone of so many things "achieved", survived. In just 4 days, we and all of the world, will be rolling over to 2019! Happy almost New Year to all of you!

Yes, I celebrate my good fortune daily. I celebrate that I am still here, 9 years after my deadly Multiple Myeloma diagnosis 12.30.2009. But deep inside, to tell you the sincerest truth... I am not always "celebrating". I have such an intense variety of emotions and feelings regarding my "not so new, unwanted, new normal"... but I hesitate how much I should share. I "know" many of you, but as with any public blog tossed out to the universe, I really don't "know" who all my readers are. Many of you have let me know that you appreciate my thoughts, my honesty, my silly humor, my candor, but how deep, how honest should I be on a public blog... that the entire world can read... is what I question all the time.... Well here goes my end of the 8's raw, unleashed, unfiltered thoughts... My Life of Opposites:

Beneath all my happiness, I really am quite sad.
Within all my gratefulness, I'm also pissed off.
I am constantly questioning if I am living, or merely existing?
Within all my amazement of my incredible survival, I am exhausted from fighting.
Steroid days have me "high on life".
Crash days have me questioning "everything".
Within all my survival "achievements", my life as I knew it, was stolen.
I love all my animals, and they give me joy and laughs, but their care is now overwhelming.
I love my horses, but they are a constant reminder of what I CANNOT do.
Am I living, or just existing?
Am I prolonging life, or extending death?
Am I extending life, or prolonging death?
I love and appreciate beautiful sunny days, but the earth's natural beauty is a constant reminder of all the things I am MISSING out on, and can no longer do.
There's so much I want to do, but I am immobilized by side effects and fatigue.
I love seeing everyone enjoying life, but I'm envious of their health and freedom.
I have a love, hate relationship with food. Without it, I wouldn't survive.
With it, I am "tortured" by the unknown, surprise, often debilitating GI events.
I'm so very grateful for 9 years of survival, but so beat up from 9 years of fighting.
I am in awe that I am still here, and so are many other people who just don't "get" the myeloma struggle.
I am grateful for everyday I wake up, but every day is challenge.
I don't want challenges. I don't want to grow stronger. Challenges don't make me stronger, they beat me up.
I am so tried trying to help others understand the precariousness of my situation.
I am so tried explaining, "defending" "why I look so good", but have a deadly, immune compromising, incurable cancer.
I am perceived as "so strong". I really am not. And don't want to be.
I want to crumble, be taken care of, and have everyone understand how sick I really am.
But yet that's really not me...
I'm strong by nature, my body weak from myeloma.
I live in the moment, what little "living" I do.
I don't want to plan for the future any more.
Who knows what my future is, and how scary that will be.
I am no longer proactive, but reactive.
I want to laugh
I want to be silly
I want to play
I want to run, ride, hike, play, lounge in the sun.
I want to be carefree.
I want to do what I want to do, without the fear of "breaking".
Myeloma has eaten my bones
My bones have holes and lesions and tumors
I am fragile physically
I am fragile mentally
I want to feel good
I don't want to focus on my health and illness, but I can't avoid it.
I am "forced' to focus on my body all the time, and I don't want to. My body is not my friend.
I don't want to think of what medications to take and when, and what it will do to me.
I don't want to have to worry about side effects 24 7, 365 days a year, but I don't have a choice, if I want to continue surviving.
But I am grateful for all the medications keeping me alive.
I am grateful for all the brilliant medical scientists that have discovered all these treatments that are keeping me alive.
I am grateful for all my doctors, nurses, medical staff working with patients like me, to keep us alive.
I am grateful for all those that love and care about me.
I am so fortunate for so much in my life- family, friends, awesome medical care, wonderful insurance
I am grateful to be able to write as I do, and post my thoughts and feelings.
But I am sorry these are the thoughts and feelings I must write about.
I allow myself to ask "Why Me"?
Why Incurable Myeloma?
Why diagnosed so "young", back then?
Why my type of Myeloma, that demands continual treatment, non stop.
Yes, that's right... Continual Chemo, daily, weekly, monthly, forever... if I want to live.
Yet, I know how "good" I have it, in comparison to so so many.
I am sad, angry, frustrated, confused, resentful... what happened to me and husband..
I can't believe how both our lives were stolen from us, and how our bodies betrayed us.
Yes I understand "the big picture" of things... but how can I not "compare" and not be frustrated with what happened to us individually and as a couple...
I am happy, yet so sad...

Forgive me if I sound ungrateful, selfish, self absorbed, and narrow minded.
Betrayal, unwanted challenges, pain, disappointments, a terminal illness does that to one's psyche. Or at least to mine.
I used to be so optimistic.
I still am.
I used to be so strong.
I still am.
I used to be so forward thinking.
I still am.
I used to be a lot of things I no longer am.
That's ok. No it's not ok.
I am so many opposites now.
But I am here, and I will continue to fight to be here for a long time...

So as I was writing this last on the 8's post, the blog views counter went from 208,800 to 208,808, to 208,818, to just now... 208,888! How crazy is that. Crazy 8's! I started posting much earlier today, then things got busy, and now late this evening I am finally posting my thoughts. Unfiltered, unedited. My life never was so self-focused. My life was all about being there for other's journeys. My joy was in "saving the world, one student at a time", one animal at a time, being there for my family. Being all about me, is not me...

Good Bye year 8! 

See you on

12.30.18

Just hours now til

9 is official!

9 Years Ago Today Reality Hit Me... First Bone Marrow Biopsy

12.18.18

Been in and out the bathroom most all of the day, and yesterday, and the day before, etc. The Radiology team wasn't kidding when they told me I would "probably" have lower GI side effects for a week or 2 or beyond, since my lower abdomen, spine, sacrum and pelvis area was the targeted area for treatment. Love the irony of my anniversary days where I have symptoms and side effects that remind me how sick I was back when I was diagnosed. Well I've been sick for 9 years now, so what else is new!

It's difficult for a "healthy and normal" person to understand the never ending treatment and side effects of Myeloma. In my case, I haven't been well for 9 years for sure, and I'll add in the year or 2 before I was diagnosed! And then the incomprehensible factor of daily, weekly, monthly, yearly treatment, non stop, which then causes daily, weekly, monthly, yearly side effects. I try to describe to my "well" friends and family what it is like TO KNOW you will be sick several days out of EVERY week, no matter what, because of the medication crash. Yes, imagine knowing, and planning for BEING SICK, feeling lousy, for 3 or 4 days a week, every week of the year! Hard to comprehend right? Well that's my life. My current "Medication Monday" means the side-effects crash happens Wednesday through Saturday, with Thursday and Friday often the yuckiest. But it's different every week. I never know how I will feel, what side effects will hit me, when, what, how... But imagine, KNOWING, every week you will feel sick. That's just your life now. Feeling sick and yucky every week. Hello Myeloma... The Gift That Keeps On Giving...

So anyway... wasn't planning to rant about that today, but the lovely lower GI side effects have taken over my life for the last week. I'm just like my horses... In one end and Out the other...

But onwards... to "celebrating" my 9 year anniversary milestones! 9 years ago today, 12.18.2009, I was "surprised" with my first Bone Marrow Biopsy. Yes surprised, as I don't recall that it was scheduled (to my knowledge) as part of my appointment for that fateful 12.18.09. See, each time I took labs, my doctors became more and more concerned. When we met, she "gently" indicated the seriousness of my situation, and that I would need to have a Bone Marrow Biopsy done to determine what was exactly going on. I suspect she knew my diagnosis, as I learned quickly, a BMB confirms the diagnosis of Myeloma and other blood, bone cancers. No doubt, having that painful procedure done, was a turning point in my new medical journey. Up to that point, I really believed I was just seriously Anemic, with other related side effects, but I really never entertained the thought of a "deadly diagnosis".

I remember my sweet Dr and her nursing staff talking me through the procedure, as I was trying to be brave, light hearted, and nonchalant about the procedure. But with each jab, stab, grind, pound, drilling into my bone and marrow, the reality of my situation "pounded" me with each pound of the medical tools. I'm not quick to cry, but I did then. I began to sob uncontrollably. The pain was so symbolic of my realization of the seriousness of my circumstances. I cried, my body quaking and shaking, as I apologized to my Dr and Nurses. I remember saying something like, "I'm a really sick puppy aren't I?" .... I don't recall their response, but I know it was kind and supportive and non committal or definitive. I cried more on the way home, as my husband and daughter tried to comfort me, as they too were scared and confused... Yes, 12.18.2009 was the beginning of my new reality, that something serious was happening to me, but I'd have to wait until my appointment, 12.30.09 for the results. Happy Holidays to me, right?! Yes, I had to wait 12 days. Through Christmas, and up until almost New Years to find out what the results of my first Bone Marrow Biopsy was....

Fast forward to now...
Here's my current status and update...

See those words...

"too many areas"...

Yes, Myeloma is eating me up

Another reality check for me

But here's a little good news!

IGA is down from last labs-

Was 2000
But still 4x the high end of normal... 

And so.... this time 9 years ago, Myeloma was RAGING inside of me, and I had NO IDEA. Today, on this 18th day of December, nearing the end of my 8th year living with Myeloma, I am so grateful to still be here, yet always so stunned that I write these posts about me! I truly cannot believe what happened to me this time 9 years ago, and can't believe everything I've survived, and what I continue to do, just to survive. Yesterday in the chemo lab was another reality check for me. So many of the patients there "looked" seriously ill, and one I know from meeting there several times, was having a really really rough time. Although I feel "sick" most of the time, my "sick" is not nearly as bad as so many I see, know. I'm depleted, exhausted, fatigued, nauseated, have lower GI issues, have pain from all my bone involvement, but "in comparison" to so many terminally ill cancer patients, I 'm doing ok, 9 years into this ridiculous battle. When I tell people my Monday Madness Regimen, where I take 10 steroid pills in the morning, then go for my Velcade shot in the belly, then take 8 Cytoxan pills when I get home, most stare at me in disbelief. And I remind everyone, I've been doing some sort of chemo CONTINUALLY for almost 9 years now, to stay alive! Crazy stuff! 

Thanks for reading, caring, commenting, and sharing your journeys with me! Wishing you a super happy holiday season, and may your health allow you to celebrate your "reason for the season" with your family, friends and loved ones. 

9 Years Ago Today- Hema What? Oncol What?

Hello 12.14.18

Wow, crazy... 9 years ago Today I had my First Hematology Oncology appointment. I hadn't heard the word "Myeloma" yet, but judging by the serious looks and conversations on 12.14.09 ... something was up...

And so begins the anniversaries of my 9th year surviving Myeloma. I continue to defy the myeloma odds, surviving 9 years. Yippee!!! I'm alive to "celebrate" this 9 year anniversary of my very first Hematology Oncology appointment! Yes, December 14, 2009 is a date I will never forget.

The medical adventures I have "participated" in between 12.14.2009 and 12.14.2018 are just mind boggling. If I was to, and I really need to, add up alllllllllllllllllllllllllllllllllllllllllll the 9 years of myeloma treatments my lil ol body has endured and survived, I should be shriveled up like a chemically cooked, radiated raisin. How can I still be here with this deadly biological war waging inside of me? Myeloma's been working hard for over 9 years to eat me up alive, and actually quite literally successful at it, as we discovered this year! I am so thankful for all the man made chemicals and radioactive beams available to pummel this monster. Truly amazing what the body can tolerate.

How's this for symbolism?
12.14.2009 I was meeting my original Oncologist Dr Lee (RIP) for the very first time. Today, 12.14.2018 I was at my 5th Radiation appointment. I just love symbolism and the irony.

12.14.2009

12.14.2018

I really don't remember a lot of the conversation on 12.14.2009. I was actually not feeling great, as I was so "drained" from bleeding out so much the past year, but I wasn't worried or concerned about anything Big or Serious. I was one of those that Never thought a serious medical condition could happen to me! I really believed I was in the "wrong department", thinking I was only there because my blood levels were askew, and some Iron pills, better hydration and perhaps a Steak would take care of whatever issues my Doctors were seeing behind the scenes. Omg, was I naive!!!

From 12.14.2009 forward, I was taking blood tests weekly, maybe even more often, receiving worried calls from my GP and this new Doctor in this mysterious, not really for me, Department of Oncology! The next appointment... 12.18.2009 ... 18th, yes, 18th... more symbolism this year!!! And I will tell you what that was for on my 12.18.18 post! Can you guess??? 

Yes, December 14th is a date that changed my world forever. December 14, 2009 began a journey I never agreed to participate in, and I've been bouncing along the wild medical rapids ever since. As I write this, I still have difficulty accepting and wrapping my head around what I've experienced in the last 9 years since my initial "why am I in this Department" appointment. 

Here I am, on my 50th birthday, November 2009 

just a few weeks prior to that first Oncology appointment

12.14.2009 

Here I am today, 12.14.2018

at the end of my 5th Radiation appointment

Had a different "office" today as I was supposed to be there yesterday, but with the GI issues on Wed and Thurs, (and continuing tonight...) NO Way would I get on the freeway yesterday! I called and rescheduled for today. And from what I was told, the GI side effects could last for a week or 2. Hello cleansing and Imodium again... 

Nope, I didn't Ring the Bell, as my treatments for Myeloma are ongoing, never ending on so many levels, and from what the Radiology Oncologist has let me know... "I'll Be Baaaaack"... as I have such extensive bone involvement... bone damage, thank you Myeloma, that there are many more areas to zap. I'll post her email summary on my next post, along with the results of my Labs I symbolically took today :)) 

Yep, I'm so very grateful to still be here 9 years later, but still so mystified how this all happened, "why me", and how the heck Myeloma found me.

12.14.2009 you are a date permanently tattooed in my being. You are the beginning of so many unwanted symbolic dates in my life. Symbolic dates that are so unlike my "other life" happy symbolic dates. 

Rain, Radiation, Reality

Hello 11.8.18

You know that song... "It Never Rains in Southern California"...
Yep, it rarely rains when it "should" in drought stricken, fire ravaged CA , but when it does, it's on days when super important things happen in my life,.. LIKE MY FIRST RADIATION APPOINTMENT!!

And yep, not at my local, close by medical center either... And, my luck,... my appointment was first thing in the morning, which is super challenging (in many ways) for me ANYWAY, but especially on a raining buckets day, that requires battling the crazy LA freeway drivers!!  You'll see below in an email, that my Dr asked me not to cancel (lol she knows me too well!). Very sweet, but also reading between the lines... tells me how "serious" my situation is. Yes, rain or shine, I need to go, I kept telling myself.

I just cannot get over all the "little" challenges and ironies in my life...  (Yes, whine, whine, whine I whine... :)) But I keep it all in perspective, and ALWAYS remind myself how LUCKY I am to have all the good fortune I do on so many levels... compared to so many... But yes, I do still allow myself a few "pity parties" here and there :))

If you've been following my story for a while, or know me personally, you know that myeloma and treatments really changed my lower GI system...., Really really changed it, and made it super unpredictable!... so that's why "early mornings" are particularly challenging for me, as I won't get on the freeway, or drive too far from my house (specifically my bathroom), when my GI system is unsettled or not "cleared". In other words.... I never want to take the chance that I'll be on a freeway when my body decides to "cleanse"!

Unfortunately the scheduling and procedures for the initial Radiation appointment consult, mapping and first treatment is not very flexible, and of course landed on a Thursday, which often is my "worst chemo crash day". For some time now, I take all my meds on Mondays: 40mg Dex, which is 10 steroid pills, then 1 Velcade shot in the belly at the chemo lab, then at home, 8 Cytoxan pills at 50mg each, which is 400mg!!. Lol, that's a lot of meds, right! So by mid to late Wednesdays, and for sure Thursdays, I'm feeling kinda yucky and what my GI has in store for me, I never know!! Unlike Revlimid, which gave me scary, unpredictable, often volcanic diarrhea, this current cocktail often "corks" me up, and I never know if and when the "cleanse" will happen. So if I have early morning appointments, I make sure the day/night before, I don't eat much, or I eat early, and "hope for the best in the morning"... and for sure... I DON'T EAT OR DRINK BEFORE GETTING ON THE FREEWAY!!! Ugh, it's all so complicated, and so funny, as "normal people" really don't give these things a thought. But I sure do, as I've had too many close calls, and near disasters, almost not making it home or to a bathroom in time!!!!  If you want to read some funny "close call" stories, look back in my blog post titles back in 2013, 2014, 2015

But I braved up, and accepted the crazy timing of all of this, and the rain, and had my wonderful son Scott pick me up at 7:15am to hopefully make it to the 9:00am appointment.

So sweet my Dr did not want me to cancel

She knows me too well :))

It was totally pouring rain when we left. I had Scott drive his big work truck, so we'd have more metal around us, protecting us from all the crazy CA drivers, that just don't know how to safely drive on rain slick freeways. But I've learned to just let go, and let things happen, and hope for the best. After 9 years of battling myeloma, with so much out of my control, what's a little rain and freeway insanity. We made it there and back, without getting involved in any of the many accidents we saw, including overturned cars, as well as the car right in front of us, in the carpool lane, dying, coming to a complete stop. Thank goodness we were the vehicle right behind him, as you can imagine a what a traffic nightmare a completely stalled car created behind us!! Scott does so much freeway driving now, it wasn't a big deal to him. So fun to experience the role reversal now in our lives, with our adult kids taking care of us now!

So to make a long day, long story short, we first met with the Radiology Technician. Such a wonderful caring man, who explained the whole process in detail, took more scans of me, marked me up with a red sharpie marker, explained I'd be getting about 5 marker tattoo dots, then the scans would be studied by my Dr, and she would make the final approval for where to Radiate, how much, and when, etc. We then met with my Dr, she discussed my situation in further detail. She brought up my scans, and showed me all my holes, lesions, tumors, etc. It's all surreal to me. How can I, me, who used to be so active, have all these cancerous things in my bones? Lesions all up my spine. Lesions in my ribs, hips, femurs, pelvis, hips, etc etc etc. And a sizable plasmacytoma in my Sacrum, tailbone... this all must just be part of a looooooooong, crazy, never ending movie I'm in.... I just can't relate to my situation, and I don't know if I ever will...

Wow, really myeloma!!

Yes, these written reports do make it "real" to me

Can't deny the damage when I see it like this

So after all the scans, mapping, discussion of where my "worst damage" and pain is, the decision was to Radiate my pelvic, hip area, my lower spine, and the crazy plasmacytoma in my sacrum. My Dr also confirmed that all my insane back, hip, pelvic, left leg pain in July, Aug, Sept, was most likely that nasty big plasmacytoma tumor pinching, putting pressure on my sciatic nerve, and surrounding areas. I'll be glad to kill that thing off!!! And radiate the heck out of all the other areas where myeloma thinks it can remain cozy and comfy in my bones!

So unreal to me
https://www.cancer.org/cancer/multiple-myeloma/treating/radiation.html

https://www.webmd.com/cancer/lymphoma/multiple-myeloma-radiation#1

My new "office" for 5 days

Yep, this big amazing machine 

will Radiate me for 5 treatments.

First was on Thursday, 

then went back on Friday for #2,

the remaining 3, next week

I love Science. 

Not smart enough to understand how all this works,

But I trust my Oncology team, and all the 

Drs and Techs working on me!

Although I knew the answer, (and have asked previously), I asked my Radiology Oncologist if I really was "fragile like glass", and shouldn't do any of my favorite sporty activities, like horseback riding, skiing, tennis, etc,.. She nodded, and said, "yes it's just too risky... you really shouldn't"... I knew she felt bad confirming what I asked, and what I've known for quite some time. Can't even remember when I last did any of those... well I can, but I don't want to...

As I write this, I sipped some tea wrong, and coughed and sneezed, and of course braced myself, and hoped I wouldn't fracture something like I've done so many times! Just awful to have to worry about all the "potentialities" of damage 24 7. But I've experienced the excruciating pain from inadvertently injuring myself all too many times, and take all the precautions I can, to not injure or damage myself again. I reflect back on all my posts, where I was suffering so much from what I thought was pulled muscles, pinched nerves, etc. Now I know that it was most likely fractures due to all the lesions I didn't think were there... 

So that's my Radiation story in short. It's treatment number 10 thousand million trillion. In other words, I've had so many lines of treatment, chemos, etc, in the last almost 9 years, that I laugh at how much I've been through. One of these days I'll add all it up. Myeloma is so different than most cancers, as the treatment is never ending, the damage is ongoing, and we as patients live moment to moment, hoping our current cocktails stave off myeloma for as long as possible. I feel like my life is on hold, yet at the same time, racing forward.

I'll find out how Velcade Dex Cytoxan is doing for me in a few weeks, as my next "assessment" Dr appointment is Monday Dec 17. In the meantime, I down my dozens of pills, submit to weekly belly injections, and now to whatever the effects of Radiation are. Isn't it amazing what the body can tolerate, and how all this stuff can keep us alive, albeit, temporarily. Myeloma is just so different than "curable" cancers. In my case, I must continually treat, or myeloma wins... 

Happy Holidays everyone. Hoping whatever your challenges are, you can still enjoy festivities with those you love and enjoy being with!

Radiology Consult, Pills and more Pills, My Myeloma Life

Hello 11.28.18

And the anniversary countdown begins. Well it's already begun, as this time of year, I can't help but think of what I DIDN'T KNOW THIS TIME 9 YEARS AGO! Yes, Wow, 9 years ago, I was in the process of being diagnosed with Multiple Myeloma. Multiple Who? Multiple What? Myeloma? Not MY-eloma! Yes, MY-eloma. Crazy, random, incurable Myeloma became my new identity 9 years ago 12.30.2009...

But this time, 9 years ago, I just thought I was extremely exhausted and fatigued from working and doing too much. That I was "only" anemic, weak, breathless. I just thought my crazy bleeding out was because of "allergies", and "that time of life for women"...  I thought all my other "weird" symptoms were just "temporary" weird feelings from "getting older", as I had just turned 50. ahahahaaaa..... I was so naive, so ignorant, so in denial. But of course I was. I was always healthy, and there wasn't any cancer in my immediate family. So I never gave my symptoms "serious" thoughts! December brought many appointments in medical departments I never ever would have connected to me!!!

I'm leaving soon for another Radiology consult, planning appointment. So I will continue my story later today... Fortunately, my extreme bone pain has subsided a bit. Still there. But not the intensity of July, August, September! I never want to feel that way again... but who knows what Myeloma has in store for me.... Looking into that "crystal ball" may not be good a idea, if we can't alter the outcome, right?!

CT scan day after my birthday

I've had so many scans and xrays this year

that I am probably radioactive by now :))

Hello 10 Dexamethasone steroids,

8 Cytoxan, Cyclophosphamide pills-

every Monday

Along with daily Acyclovir,

daily Mepron (Atovaquone),

And B12, D3, low dose Aspirin

I need to take a picture of all of my colorful pills!

Ok, I'll be back to update you with what the Radiology doctor recommends for my holey, lesions, tumorous bones!

=============

So I met with a very nice and knowledgeable Radiology Oncologist today, who noted that I have so many lesions, holes, plasmacytomas etc, that "we can't radiate your whole body" lol .... "fortunately most of them are smallish, but the concerning ones (larger) are in your spine, sacrum, hips, pelvis, etc, where you are experiencing all your pain" .... and yes, the horrible, horrendous, shocking, debilitating, pain I experienced in July, Aug, Sept, was related to pinched nerves from the spinal tumors, etc. Radiation for myeloma is often referred to as "spot welding" lol

Unfortunately, the CT scan report was not processed yet for her viewing today, as I had the scan the day after Thanksgiving, at private radiology lab, outside of Kaiser, so they are waiting to connect all the dots. Fortunately, the CT technician had given me a CD copy of the CT scan, so I passed that on to my radiology oncology doctor today. This happened as my appointment today was bumped up a week, from a previously scheduled appointment for next Wednesday. I'm not upset that the report wasn't available, as the holiday weekend complicated things, as well as the earlier appointment, as well as using an outside of Kaiser lab.

After almost 9 years of this crazy adventure, I hardly get bothered by much, as Kaiser is so good at providing services, and getting things where they should be, when they should. I've always received my specialized chemo (pill) deliveries expedited, accommodations for appointments are always made, the staff is always so friendly, caring and quick to fix any issues that come up. In other words, I have been very very fortunate to have amazing care from all perspectives- doctors, nurses, staff, pharmacy, etc! And I won't even mention how unbelievable my insurance coverage is, as my heart breaks for so many patients I read about that have lousy coverage, or super high copays...

So the next step is a multiple appointment, hours long analysis, mapping of where I will receive the radiation.

Yep, myeloma eating up my bones, causing holes, tumors, lesions and pain, is all too real. I just still can't connect all this with me. I always feel like I'm consulting with "colleagues" regarding someone else.

Can you believe I've been writing about all my adventures for 8, going on 9 years now, and that I was told "something very serious was wrong" with me, way back in November 2009. How crazy is that!!! Yep, Myeloma is the "gift that keeps on giving"... forever and ever... continuous treatment, no breaks... unbelievable how my life has changed...

Hope all is good for all of you, and if you're a warrior buddy, your treatments are livable and effective. I always love to hear your status, treatments, side effects, and how you're doing, so never hesitate to comment! Thank you everyone for all your good wishes, support and comments!

Goodbye November, see you in December friends!

Feeling Like Glass

11.18.18

Happy almost Thanksgiving everyone!

Thank you for all your kind comments, emails, texts, calls of support. Yes, body betrayal, no matter the disease, is so very tragic. My heart and head just hurts so much from everything we are going through, and for everyone else with Unwanted challenges.

I used to feel so strong, and had a sense of control over my life, choices, decisions, actions/consequences. I was so very careful and cautious with most all the choices I made in my life. I never had that need for an adrenaline rush, extreme sports, heart racing type activities or challenges. I've always sought peace, happiness, serenity, calm, fun and mental and physical health for me, everyone. My life long career as a Counselor, only solidified my natural ability to help, heal, change, that which was affecting me, mine and those that sought my counsel. Now, life is a wild ride, emotionally and physically, with little prediction of what each day holds, and little ability to affect needed change. I tell myself all the time... "It is what it is"... "You cannot control the things you cannot control" ....  Accept. Understand. It's the disease. It's body betrayal. Move Forward. Let it go. Breathe. Breathe deeply. But then I think of all the suffering of humans and animals in the world, and I admonish myself for my frustrations, grumblings, and sadness.... Onward Julie...

Saw this too late to order! 

Yes, Thanksgiving day is also my Birthday. Such a milestone for me. I was 50 at diagnosis, December 30, 2009. My doctor apologized when delivering the news, saying "I was so young". "Most are diagnosed later in life"... "and you're high risk", "with an "aggressive" type of Myeloma"... I understood intellectually, but psychologically, denial became my middle name. I knew the terminal, incurable facts about Myeloma, but of course I was smug enough to "assume" I would pummel myeloma always, and live forever. After the success of my initial treatments and stem cell transplant, I still felt I had a chance to live to be an "old mare". And the fact that I didn't have the crazy "typical" myeloma bone pain, gave me even more confidence, "that I was different". Ha! What a joke... on me... Myeloma was deep inside of me, playing all kinds of tricks, and the 9 years of cellular, chemical fighting is now really taking a toll on me... physically and mentally.

But I fight on, super proud of my "Legend" status of 9 years of beating myeloma's odds, while still rather functional lol. Yes I have hair, yes I look pretty good considering, but the bone pain has given me a bit of a gimpy walk now.. Sometimes, not all the time. Next up, a cane... 

Tomorrow is Dex Steroids, yep full throttle 40mg, paired with my weekly Velcade shot, paired with the lovely bright blue Cytoxan Cyclophosphamide pills. 8 prescribed weekly, and so far I have done 3 the first week, 5 the second week, 6 last week, and not sure what I will do tomorrow, since it's Thanksgiving and my Birthday on Thursday. See steroids carry me for about 24, 36 hours. Then the yuck and crash comes. So Wed and Thurs will not be great days :(( What's your vote? 6, 7, 8? I will have to confess to my Dr on Monday Nov 26, what I have done, .... But if my labs look ok, or even good... how interesting will that be... can't wait to find out. I did them a week ago, should have waited until today, with an extra week of treatment...

Next up... 

Not my horse, not my picture, but so heartbreaking :((
The CA fires were so incredibly devastating-

I count my blessings and our good fortune every day!

Happy little rescue doggies

And big doggie Abbie pretending to be a little doggie

Have a wonderful Holiday with your family, stay well, healthy, happy and may your challenges be by choice. 

And lest I forget to mention, it was this time, 9 years ago, that my innocent annual physical and blood tests screamed something was waaaaaaaaaay wrong with me....  the wild myeloma ride was just beginning...