And… The Drama Continues…

Hello 12.14.16

Dear Friends and Followers:

If you haven’t read my 12.6.16 post, please do, as that drama has continued in my life. Fortunately, the several day course of Dex Steroids gives me a break, then back (lol funny unintended pun) to the excruciating pain, that has migrated from my lower back to my mid and upper left side, back, ribs and chest. It’s the take-your-breath-away type of pain. Pain like I have never experienced before. The RELIEF from Dex is undeniable and truly unbelievable!
I will be doing a “Skeletal scan” asap to check for Lytic lesions .

So why my post on December 14? Another off the “6’s theme” post? :))
It’s symbolic December anniversary time! 7 years, yes SEVEN years ago today I had my FIRST shocking appointment in Hematology Oncology, and I must note this pivotal moment in my life, annually. I will never forget the shock and awe of THAT DAY as if it was today…

December is my month of my life changing, mind altering, never to be the same Julie ever again, diagnosis anniversaries. Still so incredible and unbelievable to me. Each year of survival is incredible to me. All the December 2009 pre-diagnosis blood tests, conversations, my first Bone Marrow Biopsy, all the medical appointments, all the realizations, still so incredible to me. Everything still so shocking. Yes, I am very “lucky”, blessed and very fortunate in so many ways, but each year has been so different, so challenging, depending on my cancer status and treatment protocol. If you’d like to read my thoughts on each previous anniversary, look to the right and click on my December posts since 2010. I think this December will be my most conflicted, melancholy, reality-check oriented of all my anniversaries…

My first Hematology Oncology appointment was with Dr Soon Ki Lee. Random assignment? I don’t know. I’ll never know. But how “lucky” was I to have her as my initial myeloma doctor. Tragically she passed away last year. Still unbelievable. She diagnosed me with incurable, terminal cancer and I am still here. I am about 9 years older. I am here, she is not. Beautiful human being, inside and out.

 Dr Lee, you will always be in my heart and thoughts
and always and forever a part of my life
Miss you so much. Thank you for sending me to Dr Pakanati!

Yes, there’s so much  more!
So much more to report.

I had my first month on Pomalyst status check, yesterday Tues Dec 13, and thought you’d like to know how Pom and I are doing together. I did lab work Thurs Dec 8. Unfortunately it was on Pom day #18, so my blood does not reflect a full 21 day cycle of Pom. Not to mention all the Jr Tylenol, and Jr Advil meltaways I “ate like candy” to try to get some relief from the excruciating back pain… And due to the initial Pom rash reaction, I took Jr meltaway Benadryl most every dose too. And I was battling the lovely head cold that caused my horrendous back issue.
Hmmmm, wonder how these meds (and my crazy “complications”) may have affected my results? I reported everything to my Dr, but we didn’t discuss possible interactions, and I wasn’t on top my game (because of my pain), and forgot to ask if there might be Pom interactions.

I’ll let these picture stats do the talking here:

Yep, wow! Pomalyst didn’t make a dent:
 As matter of fact, 
it looks like Myeloma laughed at Pomalyst
and grew stronger

 Fatigue, Fatigue, Fatigue
No helium, no immune system
Side effects, side effects, side effects galore…
Ugh, where’s my “bubble”

Ok Pomalyst, get to work
Pummel those cancerous proteins messing up my life

Whoa, what’s up with this one?
Never really saw this one!
Yikes! Looks like Myeloma likes Pomalyst
and isn’t the least bit scared :((
Yes, my Dr and I had quite the chit chat about all these numbers, and what’s going on, and what to do. Have any guesses what she suggested, and “we” decided on? Yes, you guessed it, my Dr wants me to move to the 4mg Pomalyst, and me, ugh, again fears, fears, fears, fears… Fear of harming my kidneys, liver, other organs, etc, from high doses of meds. Fears of additional side effects. Fears if I move up, but it won’t work, then what? Never felt that before, but from this first month on Pom results, I have new fears I haven’t had to face head on before.

But I know, I know, I have to do it to stomp myeloma. So what do you think I suggested? Yep, my head is spinning, my mind is analyzing, my whole self is scared, I’m processing this reality, and putting on my big girl boots for the “next step”. 

Thank goodness for Dex Steroids propping me up, as the physical pain was doing me in, and now this reality is the not so sweet icing on my not so tasty cake. So the next plan of action Hello 7 years battling myeloma. I’m not sure I’m going to be a fan of 2017… but then again… there is a lot happening in the myeloma research and new medication options circles.

I’ll end on some GOOD NEWS for you, as I’m guessing my myeloma followers are wondering if the pain might be from pneumonia? NOPE! Per my Dr, my chest and lungs are clear! It truly was “just” a lousy headcold and one WRONG position cough, that messed me up big time :(( 

Thanks for checking in and caring about my story as you do. 

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