Some Pretty Amazing News!

10.27.17

Hello and almost good-bye to October!
As the months fly by, I marvel they do. Who would have thought I'd still be alive. Sorry, I know I keep mentioning this, but in the Myeloma world, each day is a gift and a surprise.

Yes, I process my treatment success everyday I wake up. For those of you that follow myeloma blogs, chats, research, support groups, etc, you know exactly why I feel this way. My heart hurts for those that suffer more than I do, and for those that have not had the treatment success I have. Believe me, I am grateful for every waking moment I have, no matter what side effects I am enduring. As it's said, for most anything in life... It Can Always Be Worse.

I had my Darzalex infusion this past Tuesday. This is my 2nd with the monthly protocol schedule. Took my weekly 20mg Dex steroids prior to going, and as always, I show up to the chemo lab in fine spirits. Too fine for the chemo lab. So ironic! But I temper my exuberance, and try to "act appropriately". As always, I make new friends, and see buddies. The time flies for me, as I read online, chat with the staff and other patients, and consider taking a nap when the "Bag O Benadryl" hits me. But this week, it didn't put my lights out, just made me feel slightly goofy and groggy.

Here's my myeloma buddy Gary, who also happens to be my neighbor (yes, both of us with myeloma, within 2 blocks of each other!). Tuesday was Gary's first Kyprolis infusion. He was diagnosed about 6 months after me, and we've had very similar treatments. He's IgG Kappa Light Chains. I'm IgA Lambda. Yes, neighbors... and same medical insurance, same medical team. Both of us having our Stem Cell Transplants in 2010 at City of Hope. Both of us very similar treatment responses too. Process that!

After my Tuesday infusion, I have about 36-48 hours of feeling ok. Then late Wednesday, and for sure when I wake up Thursday, the yucky begins. Blah, lots of blah. Headache, bone aches, skin aches, dizzy, nausea, bloated, cranky, some neuropathy in my feet and hands, etc. But overall, not horrible. Just slightly miserable. For the "normal person", it would be like getting, or getting over the flu. But I know it will pass, and I just deal with it. As I've mentioned before, it's crazy KNOWING I'll be "sick" once a week, for a few days. Predictable, though I never know to what extent. I mention all of this, as prior to Tuesday's Darzalex, I managed to fit in several fun events, and even survived my Dental cleaning without getting "cross contamination cooties"! I was supposed to "pre-med" for the teeth cleaning, but when I read up on Clindamycin side effects, I opted out. I took my chances that my immune system could battle whatever cooties were stirred up, and sure enough, so far, indeed I am ok. Shocking!

Little did I know HOW STRONG MY IMMUNE SYSTEM WAS! Take a look at these labs I did on Monday, for my Tuesday Darza infusion. Haven't been this healthy in a decade! Unbelievable! Maybe my viles were switched with a "healthy" person ;)

Whoa! What's going on here?! Seriously unbelievable stats! 

I'm winning!!! WhooHoo :)) 

And just in case you missed my previous post, with my wonderful IgA stats, here they are again. Out of the "normal range", but hey, I'll take this, over what was going on earlier in the year, before Darzalez, Pomalyst, Dex steroids. Sorry if I am repetitive in my posts, but I'm fascinated that, #1, I have cancer, #2, I have incurable Myeloma, #3, that I have been in treatment for almost 8 years, #4, that I am still here, and in the "relative good health" I am in, #5, that the amazing world of myeloma research keeps coming up with new treatment options for me, that, #6, is tolerable and livable, with some semblance of quality of life, and #7, I have a fantastic medical team that takes such wonderful care of me, extending my life beyond expectations! 

Speaking of that, in the previous week, I managed to get out and about have some fun adventures! 

 Alissa, Nala, Me, Hanna, dear friend Kathy and Portia

all enjoying the doggie version of Relay for Life:

Bark for Life! 

 Alissa and Nala as "super girls" 

Me and Hanna, just being us 

 ========================

  Next day, was an Oktoberfest, VW show

Remember my cute lil "bucket list Bug"

Well I made it! 2 events in one weekend. 

I was exhausted, but made me feel almost "normal"...

 Aren't these Bugs just so cute! 

They were part of a car club called the "Smurfs"!

And surprise, surprise, my incredible chemo pharmacist

Dr Henry Chen and his family suddenly appeared!

We were both so shocked to see each other there.

He's just the most amazing supporter (and Dr Pal, Dr Jen too!)

So genuinely caring for all us patients!

Perhaps I've mentioned it before, but Dr Henry and I discussed the fact that I'm the Darzalex "pioneer" at our Kaiser facility. So far, I'm the only patient that has "tolerated" this protocol. I'm pretty darn proud of that!  

So much more to say and share, but my headache and aches, metal mouth and nausea, and other crash symptoms are getting the best of me right now... so I'll end here. But again, I can't say it enough, how grateful, thankful, mystified and thrilled I am to share my amazing status and positive updates with you and the world. Thank you for checking in, caring and commenting as you do. I may not "know you", but I sure do appreciate all my readers.

Happy Halloween to those that celebrate

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

Meds vs Fun... To Take or Not... That is the Dilemma!

Hello 10.17.17

8 years ago I had some routine blood tests that turned out to be nothing near routine.
8 years ago, unbeknown to me, I was beginning this crazy myeloma journey.
8 years ago I wasn't well, but I didn't know how "unwell" I really was.
8 years ago I was in a very serious "critical" situation, but I had no idea.

Recently, I've been pretty obsessed with my upcoming 8 year myeloma diagnosis anniversary. Quite frankly, I'm "surprised" and super proud that I am "still here". Each day, week, month, year that I survive, I'm incredulous. And when others are too, I smile and say, "you're right, It Is pretty Amazing"!

I then agree with their shock and awe, "Wow" comments:
"Wow Julie, I can't believe you're still on chemo"- (I laugh and say that I've never Not been on chemo lol, and because Myeloma is incurable, I will always be in treatment... forever and ever).
"Wow Julie, it's amazing you're still alive... considering the odds and statistics!" (I laugh and say, I know, it is amazing, right!)
"Wow Julie", can't believe how long you've been fighting cancer!" (I sigh, and acknowledge how myeloma has owned me for almost 8 years now.)
"Wow Julie, your hair!" (I laugh and point to my waves, and say how fun it is to see how each treatment affects my hair!)
"Wow Julie, you look so good". (I smile, say thank you, as luckily I can put make up on, fluff my hair, and Not look like I do when I wake up, or when I don't feel well. And, I mention I don't go out and do things when I don't feel good, so people only see me on "presentable days" lol.)
"Wow Julie, I can't believe everything you've been through!" "Wow Julie, I can't believe all the chemo you've been on." (I sigh and acknowledge how exhausted I am from this daily battle for my life...). Exhausted, but very grateful!

Yep, I too marvel at my status. I agree with everyone's surprise and curiosity at my situation. I feel the same amazement. Myeloma is just so mysterious. What is it really? How did I get it? How can I still be a semblance of "me" and have this deadly cellular monster coursing throughout my entire body? Most can't comprehend that I have been in continuous treatment since my Dec 2009 diagnosis, and that I have to be, to stay alive. Myeloma is a forever battle. Myeloma is incurable. All of us fighting Myeloma, have to fight 24/7, everyday, week, month year. It's relentless, so we have to be unrelenting.

Take a look at this good news, proof of how these powerful meds- (Darzalex, Pomalyst, Dex steroids), are saving my life. Of course, I'm still "Abnormal" and will always be Abnormal (lol), but my labs are not sky high outta control, like they were earlier in the year.

Whoohoo! 

IgA even went down a few points!

Shows my roller coaster drama ^

Not Normal of course, but I'll take it!

No M Protein spike!

It's "Abnormal", but not measurable

Truly, I live my life, One Day At A Time. I really have no idea what each day will bring. Yes I know, same for everyone else. But imagine, going from "predictable normalcies" in your life, to a life not in your control any more. As much as so many say, "don't let cancer rule your life", sorry it does for me. Myeloma and medication side effects completely control my life. Imagine, KNOWING that each week, yes, each and every week, you know you will be sick, or unwell with side effects. Imagine knowing, that no matter what, to survive, you will feel "sick" for a few days of each and every week. That's the "new predictable normalcy" in my life. No vacation from feeling lousy every stinkn week. This reality hits me when I try to plan any events. Everything revolves around when I take which meds, or when my Darzalex infusion is. Or when I take steroids. Or when the 21 days of Pomalyst really drags me down, and I become Neutropenic. Simply stated, my life is controlled by myeloma, myeloma treatments, and when side effects hit me.

Every week, the same drill... knowing you have to plan around being sick, every single week. Imagine that. 

Well, I just couldn't fit in being sick end of last week, or this coming week, as we had so many appointments and potential events. So I decided to skip my weekly steroid regimen. Before you get mad at me, this is what happened: I took my weekly 20mg Dex steroid dose over 2 days the first weekend of October, as that "worked out" in my life. I get a great boost from taking them, but I have to anticipate and plan for the CRASH. Several days of crash, where I feel real lousy, beat up, achy, extreme fatigue, exhausted, headachy, GI stuff, and overall "sickish". Then by the time I recover, I have a day or two to get things done, or have a social event before it's steroid pounding time again. Then it's steroid crash again. So by the time I would have taken them last week, or this week, and then allowed for the crash, it would have intersected several important events last week and this week. Confusing, right?. Frustrating, yes! Just imagine, having to anticipate being sick every week. Every week of your life, for the rest of your life.

Such a vicious circle this myeloma lifestyle is. I have to take life saving meds to stay alive. But those life saving meds make me feel lousy and steal my ability to "live life". When I feel lousy, I don't feel like engaging in life and going places. So I don't have "much of a life"... but I have to continue to take these powerful cancer killing treatments to stay alive, to enjoy the limited life I do have. If I don't do the treatments, then the cancer becomes more vicious, and I won't have a life.

 But there are times, like this month, and probably November and December, that I will "cheat", and skip the steroids, so I can at least anticipate more than a few good days, and get out and enjoy some fun events with family and friends. This Saturday, if I feel good, I'll be at the doggie version of Relay for Life, Bark for Life. Then Sunday, if I feel good, I was invited to bring my lil "Bucket List Bug" to an Oktober Fest event. So you get it. When would I have taken steroids, knowing I had appointments during the week, and fun on the weekends?

Thanks for reading, caring, commenting and checking in on my crazy myeloma life! Hoping you and yours are doing well, and you too can figure out a way to get out there live your life :))

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

This Unexplainable Life... So Many Why's

Hello October
Hello October 7, 2017

I must say this week, for so many many people has been the extremity of extreme sadness, shock, anger, dismay and infinite "why's". My heart is heavy for so many reasons, and for so many people near, dear, and close to me and my family, and those I only know from what I have seen, read and heard. The hate and evil that lives and dies in the monsters that slaughter others, is completely incomprehensible to me. My heart aches for all the innocent lives lost in Las Vegas, and for their families, and for those in attendance, and all those impacted by this heinous act by a sick sick madman...  But yet, we all must move forward, in an attempt to heal..

No matter the situation, event or diagnosis, many experience "survivor's guilt". Sadly many touched by the Las Vegas event will be haunted for years, perhaps their entire life...
As I come closer to my 8 year Myeloma diagnosis anniversary, I can't help but think, why have I been able to survive Myeloma this long, while others are diagnosed and soon don't make it.
Or others do treatments similar to me, then don't make it. Then others don't survive the Stem Cell Transplant process. Or others that do, then either never achieve remission, or treat for a while afterward the SCT, then don't make it. Or others that suffer grueling side effects, multiple combinations of treatments, then don't make it. Or others that survive quite a few grueling years, then their life is stolen from them. More and more I am incredulous I am nearing my 8 year anniversary.

I know I have been through a lot. I know I have experienced life changing side effects from myeloma and the variety of myeloma treatments I have been on in 7 years, 10 months. I know I am a "mini-miracle" on many levels. I am in awe of myself and my medical caregivers. I cannot thank them enough. I cannot express my gratitude to all those in my medical, pharmaceutical, research, care providing circles. I am just a bit awestruck when I really comprehend my journey!

And sometimes, I have a bit of "survivor's guilt" myself.
Why I have made this far? Why have I "almost not made it" several times, then I did? I am "high risk IgA Lambda Myeloma. My numbers have been over 10 times the high end of normal. I have experienced several treatments becoming "refractory". I have experienced a severe life threatening infection during my SCT. I have experienced each treatment I've been on work like magic, then in less then a year, stop working. I have been ecstatic and terrified. I have been shocked at my status in so many ways, so many times.

And here I am, at 7 years, 10 months, happy to report, that I am again, and still doing well. Darzalex, Pomalyst and Dex steroids are continuing to pummel those life stealing myeloma cells. According to my recent labs this week, my body is remaining strong and battle-worthy. My critical organs are remaining strong. My CBCs almost "normal". My immune system is rallying, close to Neutropenic, but not! I just completed my 21 days of Pomalyst, and my ANC and WBC is quite low, but not Neutropenic low as in past months. This cycle I will not need Neupogen Zarxio shots!

Today I begin my 7 day Pomalyst break, while continuing on my Darzalex break, as I am now on the monthly infusions. And I'm doing ok. Actually more than ok! How am I so "lucky"? So many times I really thought I wasn't going to "make it", then we find another medication, chemo combo, immunotherapy elixir, and here I am! Yes, sometimes I do have a bit of survivors guilt. Most of the time, I am just in awe...

I had my monthly oncology appointment on Friday, and as always the office and chemo lab was so busy, so my sweet RN forgot to release all my myeloma marker labs. I will contact her on Monday, and will post my IgA, as it's holding steady in the 500's (normal range = 70-400). I think it even went down a few points from 520 last month to 502 now! Still high, abnormal, but hey, not in the 4100's like it was before beginning my magical triplet of Darz, Pom, Dex late February of this year. I was so worried doing a "triplet", but I swallowed my fear and accepted that my type of myeloma has to be hit hard, and with multiple "agents". Yes, I'm a slow learner, and fearful of new unknown side effects.

Yes, everyday presents small and large challenges for everyone
Everyday presents a new mountain to process and attempt to climb
Everyday I seek "no drama", serenity, peace, beauty, laughter, love and fun
But everyday seems to greet me challenges, albeit little ones, but challenges none the less...
This week, we had to make a very difficult and sad decision...

 Binkx

July 1997 - October 2017

Each day is a gift... 
Live, love, each day. Be kind, forgive, understand...
For 3 and a half years we diapered our disabled, now 20 year old cat Binkx.

Yes it was challenging, yes it was stinky, yes there were days I didn't think I could do it another day in my "immune compromised condition", but we persevered. We took care of Binkx because his body failed him, yet his mind and spirit was so strong.
He purred when we cleaned him. He pawed at us if we cleaned him too "roughly". He meowed when he needed "to go". For over 3 years he slid himself around to eat, drink and do what he could. But this past month he lost weight. His old man bones, became sharper. We felt so bad for him.

We continually asked, "are we extending life, or prolonging death"... "What does "quality of life really mean"... Questions I ask myself all the time... for my future...

Binkx showed us signs this week that he was tired, sore, his body was tired, his butt sore. I was layering 3 diapers on him for cushioning. But he still always purred. Always...

He lived 20+ years and was a daily reminder to me of strength, love, stamina, taking one day at a time, and how life is so fragile, yet so amazing, no matter our "suffering"... reminding us how each day can be beautiful, no matter the challenges. He reminded me of my struggles and his struggle gave me strength to always move forward and be grateful for those that care for me, and to those that have helped me survive 7 years, 10 months.  He gave me strength by example. He never seemed to give up. He adapted to his uncooperative body. If he could talk, I always wondered what he would tell me, what decision he would have made 3 years ago forward... 

 Good bye strong warrior, I learned so much from
Forever in our hearts

 

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