Cowgirl Up!!! ... Does Horse Poop Cause Cancer??

Sunday, September 17, 2017

Calm Waters, Rough Seas... Never a Dull Moment

Hello 9.17.17

And so IT continues...
I'll be back with an update... GI sabotage...

Yes Life, You Never Let Me Be Bored!


9.18.17 Update: 
Never ever, stop laughing at life… I have to, to survive...

This morning, I woke up to a “kitty mess” in the “Cat Sanctuary”. See, all my life I wanted to eventually open up an animal rescue. It would be a combined animal and human rescue. A rejuvenation, healing center. Humans healing animals. Animals healing humans. But life moved busily forward, and I devoted my life to my family, my personal menagerie of rescued creatures, my career as a college counselor, and just living life… until December 30, 2009, when I was diagnosed with Multiple Myeloma. Life as I knew it, changed dramatically and forever, when I came face to face with cancer and the realities of it’s life stealing elements.

But life continued, altered. Evolved, different, rearranged. 

I have always had a moral and literal “forever obligation” to any creature that comes to live with us, either by selection, adoption, or dropping from a nest. There are those days now, especially treatment and steroid crash days, where I think I just can’t do this any longer. The chores, the messes, the needs of everyone here, demanding me, needing me, all the while, me dealing with my own yucky physical side effects that sabotage me so. The caregiving to others, when I need the care given to me, is often overwhelming. But I go deeper within. I go beyond my own suffering and look from the perspective of those that have “not chosen” to come into our lives, and I know I must carry on, carry forward for them, no matter what, no matter how awful I feel.

Today I was greeted with a very unappealing mess in the “Cat Sanctuary”. If you have cats, you know what I am referring to. If you don’t, well… put verbally sanitized… cats meticulously groom themselves. They develop “hair balls”, and their biology then “gets rid” of "it". Today, 2, maybe all 3 of the cats, decorated the floor with their biology. Additionally, our 20 year old disabled, palsy, somewhat paralyzed, mentally crisp, quite amazing cat in diapers, greeted me with his “mess” too.

I dreaded going in there. I didn’t feel like dealing with it. But I knew I must. "Better get it over with Julie", I urged myself on. "Remember… you always wanted to open up an animal rescue sanctuary". "Well, here you go. Just a very small reminder of what a large operation would have been", I laugh. I laugh at my life. I must laugh at my life, or I’d cry each day. Can’t cry. Must move forward every day. What happened to my life? Why was my life stolen from me? "Carry on Julie, one foot in front of the other", I continually admonish myself. "Move away from your woes, your side effects, your diagnosis, you have so very much to be grateful for", I reprimand myself. "Things could ALWAYS be so much worse", I swallow the lump in my throat. And it IS for so many I know. Myeloma incapacitates so many. "You are not Julie. You have so much to be grateful for", I discipline myself!
 
 Charlene- shelter rescue at 12 years old

As I look at the mess on the floor, in the litter box, on my senior cat’s diapers, I glove up and get to work. And then another kitty starts to heave! Another lovely hair ball present for me…. I laugh… I shake my head in disbelief of what my life has become on so many levels. I laugh at what I got MY SELF in to years and years ago. They cannot help their situation. They are cats. They haven't a clue about cancer and how yucky I feel. I am human. I can process all of this mentally. Forward Julie... I get to work cleaning. I laugh. I process. I shake my head as all of this represents so much more than what it is literally.

   Luci- road rescue at a kitten

I am sick, I have incurable cancer, but thankfully I still can care for myself. I am functional. I still have choices. The most dramatic awareness and reality check for me is my senior cat in diapers… I am not, yet... I remind myself always, fearing for the future. My husband is not. We are still “independent”. Our physiology has not stolen our ability to take care of our basic needs. I am grateful. I smile. I pet the kitties, and laugh. They purr their appreciation to me. I clean and clean. I change his diaper. I clean and clean everywhere. I am grateful. My senior cat puts it all in perspective for me. 

 Binkx- now 20, shelter rescue in 1997

Last week I had my status check up Doctor appointment on Tuesday September 12. Most of the news was good. Protein Electrophoresis, M Protein, M Spike is still "undetectable". Results show "abnormal", but fortunately, that factor is still being suppressed by the Darzalex, Pomalyst, Dex steroid combination.

However, my IgA crept up a bit and that is worrisome. Especially since I began the new "once a month" dosing protocol, as directed by the Darzalex pharma developer. Confusing, but the established regimen is first, every week for the first 8 weeks. Then every other week for the next 8 weeks. Then on to monthly, which is where I am now. My type of "high risk IgA" myeloma treats fast, but also mutates fast and becomes refractory to each chemo, immunotherapy after about 9-10 months. So I am wary that the myeloma cells are beginning to overpower the healthy fighter cells, since they are not being continually bombarded... we'll see what happens...

Overall, these are pretty good numbers, especially looking historically. But I am further out from the high end of normal range, and I don't like it...

This past week, I only took 12mg of the 20mg Dex steroids. I was on my Pomalyst break, and also on the Darzalex break, so I thought, "let's give this ol body a little further break". Felt ok on Tues and Wed, then suddenly late Wed night, I developed an incredible headache. A killer headache. Not a migraine, as I've never had that torture, but a crazy slam me in head with a brick headache. And that lasted through Friday, and into Saturday, when I woke up. I canceled all the plans I had, as I also began lovely lower GI distress. Strange how recently I've been having my ol surprising volcanic diarrhea again. Hmmm...Killer headache, diarrhea again... what's going on I wondered.

Slowly, with the help of Tylenol and Advil, my headache subsided. The GI stuff calmed down, but I was still unsure about what had happened to me. Thought I was getting a bug, but it wasn't. I just couldn't identify what happened. What a way to live. Feeling "sick" 4 to 5 days out of a 7 day week is pretty frustrating. Never knowing what is treatment related, cancer related, and what is an "illness" is crazy making. Feeling well is rare, and so surprising to me... But forward I go, as I want to live and have fun. I want to do whatever I can, on the days I can. So on Saturday, I uncanceled our canceled plans, and off Jim and I went to visit a family friend we hadn't seen over a year. I was worried about unexpected side effects, but took the risk...



 Can you guess what happened? We had a lovely visit. Went to this beautiful "Lake Shrine Retreat" park, which was so peaceful, lush and visually nourishing. Next up, dinner... I mentioned to Linda I felt like Italian food. She knew of a wonderful neighborhood gem. We had a lovely time. Amazing food. Warm conversation. Can you guess what happened? I felt fine during dinner. Enjoyed lots of bread, olive oil and balsamic. Yum! Chicken Parmesan with sautéed spinach. Yummy! Can you guess what happened?  We chatted, caught up from years past. I was confident I'd be fine. Can you guess what happened? We visited some more, lingered, said goodbyes, and headed for home. Can you guess what happened? Traffic was cooperative, no problem. Then close to home, I felt the ol telltale slight GI rumble. I ignored it. Lower GI stuff hadn't been an issue for me much in the last few months. I thought I was imagining it. Just a random fluke. Can you guess what happened?... Yep........... I BARELY MADE IT IN THE DOOR, and I haven't left the bathroom much since then lol! Except for lunch today, as I tried an outing again with a girlfriend I haven't seen in months, which had been planned for months and months. I almost to canceled, but didn't, as I was sure Saturday was a fluke, sure I was just fine. Can you guess what happened? Yep, same story!

So it appears my unpredictable volcanic GI side effects are back. I cannot believe my recent, scary close calls. Such a wake up call to me that I really am not a well person, and I can't go out and about freely. I must accept cancer and treatments are constantly hovering, changing my system, ready to sabotage me. Hello Imodium again, and hello fearful eating status again. I just cannot believe my life. Just when I think things will calm down... ha! Not a chance, myeloma's mischief is always lurking.

Thank you for reading and caring about my crazy myeloma journey!



Tim McGraw - Live Like You Were Dying (Official Music Video)


Thursday, September 7, 2017

Waiting for News... Always Waiting and Wondering...

9.7.17
Hello September! How can this be??

So I did my labs on Thursday Sept 7 and received some of my results later that night. With Kaiser, good news shows up online, but with the most important ones, the myeloma markers, I remain in suspense until my Dr appointment Tuesday Sept 12. Myeloma is such a waiting and wondering game on so many levels. Always waiting to know how I am. Always waiting for the "ball to drop". Always wondering if my treatment is still working. Always wondering if my cells are still dominating or if myeloma is winning. Always wondering... am I ok. Will I be ok. Such an "out of body experience", for something that is an "in body" experience... crazy way to live... But I am living and that's what matters!


Surprisingly, I saw that many of my CBC's are pretty decent. But as expected, my WBC's are low, "Neutropenic low", as I am at the end of my 21 days of Pomalyst. My Dr and I have my Neutropenic status down to a routine now. She has me do 3 days of Neupogen-Zarxio shots immediately following my 21 days of Pom, and that bounces my WBC's up, along with the 7 day break from Pomalyst. It's amazing how drained and depleted I feel. It's so hard to describe FATIGUE to a "normal" person. So different from "tired". Depleted is really the best adjective. But onward always. Hello my friend Zarxio growing WBC's, boost me back up.

9.9.17
Whoohoo... one of my myeloma markers slipped through the system. Actually, maybe it's not a "slip" as it's in the... sit down for this one... it's still in the NORMAL range. My Beta 2 Microglobulin is on the precipice of  the high end of normal, but this still counts as normal! I'll take it, compared to earlier in 2017:


Range = 1.0 - 1.8

Take a look at where I was in 2009 at Diagnosis, then again 2013 when out of Remission, then the scary levels at the beginning of 2017!

So using this one test as a hopeful indicator of my remaining lab results... I'm optimistic that my IgA, M Protein, etc, will also be ok, thanks to Darzalex, Pomalyst, and Dex!

I attended my local myeloma support group meeting today. I am always so shocked and amazed at the variance of myeloma's vengeance and presentation. I met a man a few years younger than me who has been dealing with myeloma since 1999!!! Whaaaat??!! Nope, that's not a typo! 1999!!! He was "treated with the original Thalidamide, and a few other things", he "thinks it was Melphalan and bone strengtheners"... and then he stopped treatment when his numbers were good. Stopped treatment!! Yes! For years! And he said he really didn't think about it much, until he began bleeding a lot, hemorrhage type bleeding, and was extremely fatigued, became anemic, etc. Incredible! We talked about our early symptoms of bleeding out, anemia and lovely volcanic diarrhea on Revlimid. He is in the process of considering meds vs stem cell transplant. Wow! I have read of other MM patients with years of survival in the double digits, and I am both amazed and energized by this, as I approach 8 years of survival!

 
Every night, after the blistering sun sets, I head outside to do the horse arena clean up. The night air is beginning to calm the angry heat of the day. I hear the birds settling in the trees for the night, the barn owl's plaintive "whoo-hoo", the soft crunching sound of the horses scratching each other's annoying fly bites from the day, and sometimes, a gentle rustle of a breeze in the trees, cooling the parched earth....
And then.... the Gift of the Moon! Rising, blazing into the night sky, a flashlight from the heavens, lighting my way, energizing me, reaffirming "I'm alive"! It's really so magical to me. Moments like this remind me how grateful I am for the success of all my treatments.


Moonlit nights have always taken my breath away. This beauty gives me pause to process my life. Back in the day, we would take the horses on moonlit trail rides. It was so incredibly magical, that flashlight in sky, lighting our way. I always felt so alive, the quiet of the night, the soft impact of hooves in the sandy soil. Invisible wildlife observing us from the safety of their hideouts. Crisp night air, filled with sagebrush scents. Humans connected to horses, in an unspoken language.
Back then, my thoughts only in the moment, pure joy, happiness and awe. Now, on moonlit nights, gazing at the starlit sky, I try to process my circumstances. I still can't. I still don't comprehend and understand what has become of my life. I think about my daily treatments keeping me alive. How do these chemicals work to keep me alive. How am I still alive with all these crazy cellular mutations happening inside of me. How have I been able to withstand and tolerate all these chemicals for 7 years, 9 months, and be as "functional" as I am? How did myeloma happen to me? What will this week, month, year bring. What will I find out on Tuesday Sept 12? Hello Moon, thank you for energizing me, making me smile as I reflect on all the memories we've had together, overwhelming me with the vastness of this life, making me so feel alive. So grateful.


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



Sunday, August 27, 2017

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!



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 



Thursday, August 17, 2017

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!




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



Monday, August 7, 2017

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


 

Thursday, July 27, 2017

Caution: Boring Post Ahead

Hello 7.27.17


Indeed, life is always full of surprises.The minute we think we can predict what's next, life throws us an unexpected twist, a curve ball, a fork in the road, or decisions we didn't expect. Each day I wake up, look around, and giggle that I am still here. So grateful, often surprised, always wondering what's next.

Had my Darzalex 6 hour infusion last Tuesday July 18. Fortunately, all is pretty routine now on infusion days. I take 20mg Dex steroids when I "force" myself to get up around 7am. Hydrate, figure out what my "GI biology" is planning, and get on the freeway between 9-9:30. By the time I arrive at the chemo lab, the steroids have kicked in a bit, and I feel pretty good. Such irony to arrive at a chemo treatment lab feeling ok and spirited, and "not looking like a cancer patient". Almost always I meet up with "regulars" there, and secure a chair or bed by someone I know, or off in a corner so I can hibernate and read for the day, or until the bag o' Benadryl tries to knock me out.

 Here I am towards the end of the day,
looking blurry from all the meds.
Note the "200" turbo infusion speed.
We start the Darzalex at 100, then 150 then 200, 
as I'm on week #15, and all's going well. 

Met with my Dr prior to my infusion, and all my labs look awesome! See my 7.17.17 post for all my lab details. Since I seem to be doing ok, I "jokingly" said to my Dr that perhaps if I was ok enough to travel, perhaps I could take a handful of Zarxio injections with me to keep my immune system strong. Really, I was just joking, but she quickly agreed and liked the idea. So perhaps a trip may be in our future... just have to get Jim's leg better... I always marvel at all the amazing medications that heal us and help our chemistry be ok. I had so little health problems prior to 2008, 2009, that I just didn't realize all the meds out there, ready to "fix us up"! Thank goodness Darzalex, Pomalyst and Dex steroids are currently my magical elixir! 



And that's my short and sweet update. Lest you think all is glitter rainbows and unicorns, I of course have a list of side effects, crash days, blah days, swollen days, GI days, but I rebound on my Darza week off, and I'm beginning to accept invitations to fun events occasionally. I don't understand this life, and will never stop questioning why, how come, why me, how'd this happen. But I move forward daily, often in awe of how close I have come to "not being here", but reveling in how ok I am this month. I always think about myeloma eating me up from the inside out, and marvel at the powerful treatments fighting my cellular battle. It's mind boggling knowing it's these meds, continuous for 7 years now, responsible for keeping me alive, month to month. I reflect on my "hole in my head" lytic lesion of the left side, and external hard tumor on my right side. Crazy stuff right?!  But I am here, and I do what I can do, when I can, and most importantly, I count my blessings daily. Heck, how many terminal cancer patients on a triplet chemo cocktail can boast they go from the chemo lab to the horse arena, to toss hay and rake up "road apples" :)) 

My backyard view the other day! 
 Thanks for checking in. 
Hoping for good news and happiness in your life always


Ps, 7 years ago tomorrow, July 28, I was finally released from City of Hope hospital, surviving my 2010 Stem Cell Transplant! Here's my post from back then.


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


Monday, July 17, 2017

Darza, Pom, Dex... I loooove You!

Hello 7.17.17
Great News :))
You won't believe my IgA stats!

And to think, where I was 7 years ago today...
Here's a walk down memory lane... I wasn't feeling too chipper 7 years ago TODAY, trying to recover from my stem cell transplant and my septic infected Hickman catheter site... 

(Be right back ... GI sabotage lol...)

Hello Everyone-
As always, so much happens between posts, but I'll let the pictures do the talking this time. (You can click on the screen shots for a larger view)

 Wow! Look how low my IgA is!
Go Darzalex, Pomalyst, Dex steroids

I know it's hard for some people to "see" me
and hear me speak of how "serious" my situation is
But Numbers Don't Lie, right!
Bad, Worse, Bad, Better, Better, Wow now :))

Even my IgG is rebounding
After my SCT, my IgG and IgM were always super low...
but a "strange thing" has happened with Darzalez.
I recall reading an about an IgG component...
I'll find the article link...

Look how Darza has affected my myeloma type
I used to only be IgA
Now I see an IgG component
 IgA only ^

And look below
I've joined another "sorority"

 I'll be asking my Dr about this tomorrow at my appointment
And for any of you myeloma "experts" reading this, 
please comment and let me know your thoughts...

Now I remember where I read about
"As Darzalex is an IgG monoclonal antibody, it can be detected on tests used for the clinical monitoring of M protein and may impact the determination of complete response and of disease progression in some patients with IgG myeloma" 

Yippee!! M Protein is still
"undetectable"-
reads as "Abnormal", 
but not a measurable numerical value!
A few months ago, it was over 3.4

But... after 21 days of Pomalyst
my WBCs plummet, I become Neutropenic,
so it's Zarxio to the rescue!
I'm such a pro now at grabbing a bit of belly chub
and in goes the shots with no problem

So today was my hubby Jim's all day adventure with his doctor's regarding his previous blood clots in his legs issue. Been a tough battle for him, as his veins have died a slow death from years of damage, and he has terrible swelling, DVT, and now "venous ulcers" on one leg from the swelling, and blood flow issues. So incredibly painful for him, and he's used to being so active and on his feet all the time, and that only exacerbates it. Getting old just stinks! So we spent the early day getting a Vascular Ultrasound and seeing a Vascular Surgeon. Bottom line for poor Jim: compression stockings, elevate the leg, and the home health care nurse comes 2 times a week to wrap the wound. It's like an "Assisted Living Facility" around here, but we both stuff our symptoms and get outside and take care of all the creatures we are responsible for, even when we don't feel well. I wonder what a "cement, suburban" life would be like lol... just being responsible for ourselves... oh well, we'll make it work, as all our animals are a part of our life for their entire life. 


After leaving all the appointments today, we were hungry, so knowing I would be at the Chem Lab all day tomorrow, we brought home delish deli food. Not sure what happened to me, but for the first time in a very long time, my GI was not happy, and I spent some time in the bathroom late today, tonight, reminiscent of the Revlimid "volcanic" days! (Remember those stories? And this one?) Still have an unsettled stomach, but we'll see what the rest of the night brings. Hopefully nothing, so I can get it together early tomorrow morning, take my 20mg steroids (as Darza pre meds), get to the lab to take my blood tests, in time for my Dr appointment, then all day Darza IV infusion. 

Good news is, I felt pretty good this month. Must be those awesome IgA stats! Just processing all the changes in my life (retirement pushed some buttons), accepting where Jim and I are health-wise and our lack of the "golden years options". Sshheessh, and I'm so "young" to be dealing with all this.... Anyway, my goals are to begin going through all my "stuff" (still haven't fully unloaded my office boxes yet), meet up with friends when I feel ok, and take a few local "day trips" when we are feeling ok. Always so much to process. Amazing how life continually throws us curves and forks in the road. My goal is simplicity, less is more, and most important, feeling ok, and just being happy every day. I am thrilled beyond thrilled Darza Pom Dex is currently my "magic elixir", and I hope beyond hope this triplet cocktail can outsmart myeloma for many many months to come. But I am a realist, and live month to month, blood test to blood test, and know myeloma is super stealth, and treatment changes are inevitable.  

I didn't even tell you the funny story about me trying to buzz my little doggie, and learned being a dog groomer is really hard, skilled work, that I absolutely do not possess! And Domino the attack rooster still trying to attack me thru the fence, but I outsmart him by going out to collect the eggs at night, after he and the girls are roosting for the night, as I dodge the rat-family... And did I mention, I had a nail in my tire, ...  so many more life adventures. But I have a life, and for that, so incredibly grateful!

My loyal, dear friend Kathy and I finally met up for a Frappucino!
I cancel on her, more than I see her-
  
And today, while waiting to see Jim's Vascular surgeon, I saw Karen, our amazing Chemo Lab volunteer. So nice to get out and about once in a while, and feel "normal" ha ha! 


Thanks for checking in and following my silly story. Hoping your life is filled with rewarding adventures, good health (or livable health), and all that makes you happy and fulfilled! Cheers to 7.17.17. 


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



My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells

July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!

And you can read my whole story from that point forward in this blog!


What is multiple myeloma?

What is multiple myeloma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.

When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.

Multiple myeloma is characterized by several features, including:

Low blood counts

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.

Bone and calcium problems

Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)

Infections

Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.