7 Months, Infusion #17, Living Life Grateful and Suprised

Hello 8.27.17

I just counted on my fingers to confirm my math. I've been doing the Darzalex, Pomalyst, Dex steroid triplet cocktail for 7 months now. Wow! Infusion #17 will be this Tuesday, Aug 29. How can that be? Seems like I just began this protocol. We all say how fast life speeds by, but really it does. And when I write this to you, it sure confirms how, regardless of what is happening to us personally, the Universe speeds onward, propelling all creatures great and small, forward. Moving, going, being, doing, living... forward.

Looking back, I laugh at myself for all my treatment fears over the last 7.8 years. I often feel silly for how overboard I am regarding worrying so much about potential new side effects, with potential new treatments. It's not the CHANGE of treatment that so much bothers me, it's the UNKNOWN of how my body might react to the new meds. Yes, looking back, I should have braved up sooner over the years and switched treatments prior to "letting" my IgA escalate as it did. But then again... I would say 7.8 years of myeloma survival is pretty impressive, so we've done something right :))

Prior to my current triplet of Darza, Pom, Dex, I managed to do quite well on just a doublet. First Rev Dex prior to SCT. Then 1 day of IV Cytoxan. Then 2 days of Melphalan prior to SCT. Then Rev alone for maintenance. Then Rev Dex again when I came out of remission. Then Kyprolis Dex. During those times, my Doctors did frequently discuss combining multiple "agents", but I always balked at the idea, "fearing" triple side effects. Yes, I've had my share of crazy side effects, but my "method" did work, allowing me to isolate which side effect was from which med. But the question will always be... hmmm what would have been my outcomes, if I had tried a triplet sooner? I'll never know, but I do think of it. Perhaps I wouldn't be riding the treatment roller coaster as I have? Perhaps I may have had another remission? Perhaps my IgA wouldn't have escalated as it did. But on the other hand, maybe I would have burned through more treatments sooner, and become refractory to more chemos, sooner? It's crazy the zillions of "unknowns" in myeloma treatment! With all that being said, what I (and my medical team) have done is certainly a success, as "numbers don't lie" right. The closer I get to 8 years, the more I soak up my survival success.

Take a look at these graphs, showing my myeloma roller coaster ride!

Pretty stunning how fast my IgA escalated late last year, early this year prior to Darza, Pom, Dex. Was I scared? Yes. Did I feel defeated? No. I always seem to be confident that there will be some sort of "magical medical recipe" that will come my way. And come my way it does, when I brave up. There was a short run with Velcade right when I began Darza, but that caused me this crazy intense stinging, burning, fever-like skin pain! I think I only did 2 injections of it, before we ditched it, and went back to Pom. So at this time, my "magic elixir" is still Darza, Pom, Dex, and I am thrilled, shocked, surprised and so grateful that myeloma is still very intimidated by this triplet! I better understand the cellular mechanisms of multiple treatments now. I understand that each medication treats differently on a cellular level, and each pummels myeloma from multiple angles, differently than 1 chemo with steroids does. Which med comes next I don't know. But I am hoping beyond hope, that Darza, Pom, Dex will fight my fight for many more months to come!

So on my Darza off week, I try to fit in an activity here and there. Seems like there is always something happening every day, and FATIGUE is my main enemy at this time. Darza, Pom, Dex fortunately does not give me the " surprise, extreme, volcanic GI" side effects Rev Dex did, and Kyprolis Dex to a lesser effect, so we are able to venture out a bit now, without extreme worry. I have, however, learned that Darza Pom Dex causes me a more "delayed" crash and unpredictable GI reactions, so I know that days 3, 4, 5, after my IV infusion, are stick close to home days, as sometimes... biology does surprise me!

Remember my sweet baby chicks we raised last year? One from a green egg, and one from a brown egg? Well the green egg chick, aka an Araucana, is a beautiful blonde, rust, golden Hen that lays green eggs now. The brown egg chick went from a charcoal baby to a stunning black and white spotted Rooster, who eventually became overly hormonal and aggressive and attacked us, thinking he had to protect his hens! (I think I told the story of him attacking me, in a previous post.) Well... "Domino the Rooster" had to go, as it was just too dangerous and difficult to go into the chicken pen. I posted and begged someone to give him a home, rather than BBQ him, but most did not want an aggressive, protective rooster... until a friend of mine in law enforcement arranged for Domino the Rooster to go to JAIL! Yes, Jail!! Nearby we have a jail facility that also has an Agricultural Program to help rehab the inmates, and they have chickens as part of the program! So Domino the Aggressive Rooster went to Jail this past week, and he's "sentenced" there for life! But what a great life he will have, as he now has 70 lady hen friends!! So funny! And such a successful "re-homing"!

Baby Domino and Butterscotch-Rusty

Adolescent Domino and Rusty
before crazy hormones

Grown up tough guy Domino and his lady friend, Henrietta.

A neighbor gave us 3 of these beautiful black/gold hens

and 3 little grey Bantam hens.
7 hens to protect, plus boy hormones, did him in with us!

 Here's doggie Paws and Nala

saying Adios to Domino

and off to Jail Domino went

Bye Bye Domino

You're going to have a great life

Sentenced for life in Jail, with 70 hen friends :))

And the week prior, we managed to take a drive to the beach

For this, and my life, and my successful chemo treatments,

and everyone in my life,

I am grateful beyond words!

Here's a very inspirational, thought provoking story of survival 

And here's a 34 year myeloma survivor's story! Unbelievable! 34 years!

Thank you for reading, caring and following my crazy myeloma journey. 

Cheers to 7.8 months survival. 

Hope your journey is filled with happiness, joy, health and fulfillment.

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

This Life...

Hello 8.17.17

Why oh why is life so complicated and challenging. I have so much to be thankful for, yet everyday I struggle with "What The Heck Happened To My Life". I continuously grapple with the "whys" of life. On so many levels... not just myeloma... Yes, my life would be simpler, if I could just "let go and let it go", but that's not my nature. So much has changed for me in so many ways. So much now, is so much more complicated...

Tuesday, August 15, was my monthly myeloma status Dr appointment, with my Darzlex infusion immediately following. Going into this appointment, I really didn't know what direction my recent labs would reveal. I've felt ok, except for the extreme debilitating fatigue from the ups and downs of weekly Dex steroids, and from the power of  21 days of Pomalyst pills pummeling my system, (which lowers my WBCs and immune system), and from the every other week all day Darzalex infusions, and then subsequent delayed side effects from all 3 meds. Some days I just feel so beat up, but I hesitate "complaining" as it "could always be so much worse".

I follow so many myeloma groups and read so many articles, that my head spins with everyone's life altering myeloma journeys. The suffering of myeloma patients, actually all cancer patients, actually all of humanity and animals that are suffering, really affects me. It just pains me for them, so I tell myself, "just shut your trap Julie, things could be so much worse for you!" I know we should "try not compare circumstances", but really, how can we not. Here I am 7.8 years after diagnosis, so grateful, yet so frustrated with my situation. I've been through more rounds of chemo than I can count, and since I have said this so many times before, I think I will count one day... But truly, if you're not ill, not challenged daily, and not struggling with just trying to feel and be ok day to day, one really can't comprehend and know what it's like to have "being sick" and "feeling unwell", one's daily norm. And not just on the illness level... there's just so much suffering on every level in this world. I just don't get it. So many challenges for so many, all the time, unrelenting.

I used to feel so "relieved" after accomplishing challenges. You know, that big exhale sigh of, "whew, wow, that's done, I feel ok now"... happy, accomplished, thoughtful, pensive, fulfilled, but "relieved" that that mountain was climbed. Now, it's more like, "oh boy, ok, what challenge comes my way today, tomorrow, next week"... No time to chill and let my defenses down anymore...

Ok, I'll stop perserverating on my frustrations and mental conflicts Vs my gratefulness. It's all so complicated... Here's my pretty good news from Tuesday:

I'm surprised and thrilled my IgA is still hovering in the upper 400's! Above "normal" of course, but unbelievable how well I continue to do on Darza, Pom, Dex. Yes I am so lucky and thankful for the success of my treatment, and all that is involved in me still being here year 7, inching towards year 8!

 Hello monthly Zarxio (Neupogen) injections.

I'm such a pro now at self injecting. 

The things we get used to...

 Sometimes I just cannot connect with being a cancer patient.

But then I see my pictures, and it becomes more real.
This is me
This is my life
My life as a cancer patient

Just before my my Dr appointment and entering the chemo lab, the Oncology Department had a sweet visitor. Of course I couldn't resist the opportunity to practice selfies with this cutie:

I forget her name, but she's 14 and a shelter rescue.

Her human was a sweet cheerful senior lady volunteer.

7, yes 7... all of 2017

And finally, while I was wallowing in my mini self pity party yesterday and today... I came across this story (linked below) of this amazing HERO!. Shuts me up fast, as under my circumstances, I am really am quite functional, and have "quality of life" most days. No matter how yucky I feel, I am ambulatory, have my wits about me, have great medical coverage, have lots of wonderful loving family and friends, my current triplet cocktail is "still" working and my bones are not cracked and broken from myeloma gobbling me up (yet)...  However, I do often reflect that I do have a "hole in my head" - a lytic lesion on my L side skull, and a solid external tumor on my R side head, and that's a reality check for me...(albeit kinda funny having a "hole in my head" :))

Yes I have so much to be grateful for, no matter how complicated my life is. No matter how frustrated I get because my life took an unwanted, unanticipated fork in the road, on so many different levels, that I never anticipated, I move forward daily, looking always, for the best in the worst.

This man's story is the epitome of bravery, resiliency, success, heroics, perseverance, intelligence, and he's a true role model representing incredible strength and the ability to overcome extreme obstacles. Honor him, and please read his story!

From war hero to white coat: A wounded veteran's journey to Harvard Medical School

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

Welcome to FatigueVille, but It's all Still Good!

Hello 8.7.17

Being a deep thinker has its advantages and disadvantages. I’m always thinking. Thinking Thinking Thinking. Analyzing Analyzing Analyzing. When I woke up the other morning, I was struck by how “relatively ok” I felt, albeit exhausted, always fatigued, achy, with some neuropathy, but ok. I was truly surprised I felt so ok, as feeling Not ok is my regular, “new normal”, and feeling well or ok, is “abnormal” and surprising. Then it hit me… I really am doing ok on this current triplet cocktail treatment. It’s still working it’s magic and dominating the myeloma cells. I smiled and thought, “I’m alive! Seven and a half years after diagnosis, I’m still alive, and my current treatment is still working! Still working, still surprised... is my new normal.

Many of you may say, “well of course you’re still alive Julie”… but seriously… it is a miracle, considering the aggressiveness of my 7, (almost 8) year myeloma battle and my history of burning through treatments after about a year (or less). My current triplet treatment of Darzalex, Pomalyst, and Dex steroids have been suppressing the power of the myeloma cells for about 5 months now. I marvel at my (still) low IgA numbers and almost non-existent M Protein. I marvel at the power and chemistry of the myeloma meds keeping me alive. I constantly think about the “intelligence” of these medications, altering the chemical properties of me cellularly, fighting this ferocious battle within me. Cells killing cells. Powerful medications giving power to my internal self, in a bio-chemical-physiological way I still cannot comprehend. 

 

 Although I am currently doing ok (or so I still think, as my monthly status labs will be later this week), I never let my guard down. I live month to month, blood test to blood test, always prepared for the roller coaster shifting in the “wrong” direction. Another “new normal”, rather an “altered normal” way of thinking. Taking nothing for granted, always wondering what’s around the corner. The When, not If, will my status change? It’s kind of like living, while always holding your breath. Living on a precipice, wondering when you'll almost fall of the edge... again.

Do you recall my post from a while ago, where I asked my SCT oncologist a “be honest with me” timeline question? This was at an appointment where my labs told the tale of me not responding well to my previous treatment, and we were discussing my next treatment options. Without sugar-coating my question, I bluntly asked: “So Dr S, what if I decided to take a medication break, or I just decided I couldn’t take all the side effects any more, and stopped treatment… How many “Years” would I have?”, I directly asked. With a pause, and thoughtful caring voice, he looked directly at me and said: “it would be months, not years. Many months, but not many years”…. 

Saaayyy Whaaaat, I processed. He must have heard me wrong. So I restated the question, emphasizing the word “Years”. “How many Years would I have left, without any chemo treatments?” He leaned over very intently, and replied, “Julie, I’m not “God”, and I don’t have a crystal ball, but if you chose to stop all treatments, it wouldn’t be “years”, it would be “months”… "it's the medications keeping you alive"... My myeloma numbers were pretty high at that time, so I understood and absorbed the gravity of what he was saying… 

Yes, I’m a thinker, a what if-er, and a pragmatist. I want the truth, the whole truth, and in my face. I want to assess my options, knowing if I even have options. I’m constantly trying to wrap my head around this situation I’m in, that still feels surreal, and still seems like it can’t be. That I’m really talking about someone else and telling someone else’s story.

Forward march, my march. One day at a time, one week at a time, one month at a time, one blood test at a time, one infusion at a time, one pill at a time. This is my life. For however long my life is, according to myeloma.

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