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

Monday, June 18, 2018

Eating to Feed Me and Starve Myeloma... Ha!

Hello 6.18.18

Confession time...
I broke out of my myeloma bubble and went to Country Concert, and I ate horribly all day long!


I actually wrote this late Saturday night, 6.16.18 , as I took my 40mg Dex steroids early morning, so I'm tired physically, but my brain is still so awake, so I write on!. I'll sleep when the crash comes :))

Yep, I stepped out of my Antibacterial Bubble to play, and of course now, I'm wondering if I'll "pay for it" in a few days... Last time I chanced being around crowds, I got horribly sick from trying to have a bit of fun. Here's my posts from April, with that adventure and sickness consequences:

https://juliesmyelomamoments.blogspot.com/2018/04/yolo-another-scan-another-birthday.html

https://juliesmyelomamoments.blogspot.com/2018/04/caution-not-happy-post-thank-you-you.html

https://juliesmyelomamoments.blogspot.com/2018/04/myelomas-life-lessons-never-stop.html

But, tonight was a bit different than the Country Dancing (inside) Club adventure of April. Tonight's venue was OUTSIDE at a Park, and I was firm about my no hug, stay way, don't give me your cooties policy!! There were hundreds, maybe thousands at this Country Concert event, and since I was a local college counselor for 35 years in this area, I knew half of all the attendees. Joking!! Well, maybe a 100. It was so sweet to see my students and kid's friends start to rush up to me to hug me hello, and me, in Turbo Reverse, waving my hands at them to stay away and get back. Several of them thought I was being my jokester self, and keep heading towards me, until I called out... "Noooo, seriously, get back, I'm on chemo, I'm immune compromised and I don't want your cooties".... Ooohhhh noooo, so many of them said, and looked a me quizzically. So many just don't understand Myeloma is for LIFE and INCURABLE, and for me, CHEMO IS FOR LIFE and being IMMUNE COMPROMISED is for LIFE.


Yelling above the blaring music, I quickly update everyone about my cancer, chemo, treatment, etc, status. "No way Julie, but you look so good, how can you still have cancer, we didn't know you were still having to deal with this, how can you look so great, and not look sick, etc". Yes I am grateful and appreciative for all their kind comments, but I really need to design a Tee shirt that says... "BACK OFF! IMMUNE COMPROMISED CANCER PATIENT ALWAYS ON CHEMO, KEEP YOUR COOTIES AWAY!"


We had a fun time, but it wound up getting quite cool, and I didn't bring a warm jacket, as before we left, I was hot and sweaty from my 40mg of Dex roids kicking in, so Jim and I left before the concert was over. We did last from 4:30 to 8:30! Super bad, was that I chose not to HYDRATE AT ALL there, as I didn't want to use the PORTA POTTIES!! So I was really thirsty and ready to get home and hydrate! Each time I venture out like this, I realize how much cancer and treatments have changed me. I just don't enjoy big crowds as much any more, and I can't fully relax and enjoy anymore, as I always feel so "on guard". My funny Food Confession story is to come further down, but first a little background to put it all in perspective...


People often ask me what I eat, what "diet" I follow, what supplements, vitamins, herbals, etc, I take to stay to well, healthy and be an 8 year myeloma survivor. Well here's my trick: I'm on my own version of the ever popular "SEE-FOOD Diet"!! Get it... SEE.... FOOD... I see food that appeals to me and I EAT IT! ahahahhaaaa! For real! I do whatever I want now, but always focused on balance and moderation... with a day here and there of true "Whaaaatt Evvveeer"!!! Today was a What Ever day for sure!

Most of the time, I eat/drink really healthy and balanced, powering my fighter cells to ward of myeloma, and to keep my organs clean and healthy. My body doesn't stand a chance battling back those stealth myeloma cells, if my organs fail me.

So I try to hydrate well. I have a cup or 2 of decaf coffee most days, except on Dex steroid crash day, as I have such metal mouth from the roids. I'll take my Acyclovir capsule, and vitamin D3, B12 with a Boost, (low Glucose, lower calorie version), and then spend the rest of the day drinking water, 100% juice Cranberry watered down with plain water, and or fruit flavor infused Sparkling water (no calories or sugars, just pure water, no artificial sweeteners) with the Cran juice. Or I may squeeze a fresh lemon in my water. I may have OJ, or if we have Tangerines from our tree, I juice those. Yummy!! Evening, more of same, but usually have Celestial Seasons Herb Tea, or fresh squeeze a lemon for fresh lemon tea.
From our fruit trees!

I try to get something from each food group daily. I try to get enough protein, but I've never been a regular meat eater, and think I deprived my body of too little protein back before my diagnosis. So I try to eat nuts, cheese, cottage cheese, yogurt, no preservatives Deli meats, Lean Cuisine's that have various forms of protein, fresh Tofu, occasionally, and if we dare to go out to eat, that's when I get BBQ beef, such as steak, prime rib, etc. The Boost drinks I use, have 16 grams of protein. And my best of all protein from FRESH EGGS from our very own Hens!


As for Fruits and Veggies, I try to have greenery and healthy colors daily, but stick to frozen, cooked veggies most of the time, since 1- I am so regularly Neutropenic,and follow a Neutropenic diet, and 2- there are so many bacteria warnings and scares of Salmonella, e-Coli, Listeria, etc, with fresh vegetables and fruits, I'm scared to eat fresh! Here's one of my faves:
But I do periodically take a chance, and eat fresh such as berries, avocados, bananas, cucumbers, tomatoes, but I am super hesitant to eat salads any more, which is sad, as I love salads with a whole variety of goodies in it, made by me. I also eat baked potatoes and yams, but as I write this, I realize I don't do anything "regularly" , just what my super shopper daughter buys us, and also what appeals to my taste buds at the the time. I don't go to the grocery stores, especially during cold and flu season, so we are very lucky to have our daughter be our amazing super shopper!

This was my all in one pan of fresh eggs and veggies, 
with a dollop of sour cream and a sprinkling of Parmesan

Ok, so you get that make the effort to eat really healthy most days, and something from most food groups. Oh, I forgot to mention that I love breads, but I don't allow myself to eat the whole loaf on Dex days lol. I also enjoy quality Granola with Coconut milk. But again I don't do anything the same every day... so funny to really realize this as I write it out.

SO WHERE AM I GOING WITH ALL THIS???
Today wound up a crazy calorie, genuine "SEE FOOD Diet" day!!

I had bought tickets to the Country concert a month ago on a frustration whim. After being so sick for so many weeks off and on, Nov, Dec, Jan, April, and having to absorb the reality of my Pet CT Scan Lytic Lesion Holes (see my most recent May posts)... I decided it was time to venture out of my sanitized bubble and try living life a bit. But all morning long, I truly wasn't sure if we would actually go. The 40mg steroids did not give me the kick and boost it normally does, so I didn't feel a desperate longing for excitement or socialization. But I paid for "VIP" hoping that would keep us away from the massive crowds, and also, they had advertised "special porta potties", and seating. So I decided to go, see what it was like, and decide to stay or go, after perusing and cruising around.

The problem... to eat or not to eat from the Food Trucks there!! First of all, they were quite a walk away from our seating area (which was really bad planning on the organizer's part!), as my ol hubby has a lot of mobility and walking issues, so bounding back and forth from our seating area to the food area was not happening... except for our super shopper, super food finder daughter Alissa coming to the rescue! There were a lot of Food Trucks in a variety of areas, that could be missed, so here's what she found for us, and what I ate today before we went. It's really ridiculous, as I never eat like this!!

This morning I had my double dose steroids with a low Glucose Boost.
Then some coffee, water, juice and water, etc
Then I realized we had some muffins, and special sourdough bread my son Scott brought from a specialized bakery, from a recent trip he had been on. Yummyyy!!! Warm bread with Cinnamon Butter. Carb and sugar overdose already. "See Food Diet" today for sure, LOL
So I balanced that with some Cottage Cheese
Then I had another Boost with my Acyclovir and Vitamins. I usually only have 1 Boost per day, but had forgotten I had one with my Dex steroids, right as I opened the 2nd one. Oh well.

I don't think I had anything else, as I was a bit worried about what my GI might do at the concert, but generally on Dex days I'm well corked up!

First food hunt was with Alissa's friend leading the way. Lines and Crowds, oh my! We found the Corn Dogs with fries first, and decided not to venture to the other area for more options, as the lines were long, and crowds thick! I didn't realize they had a whole food truck court, just past where this first option was. Again bad bad design of the Organizers. Anyway, I seriously, never, and I honestly mean never eat those, as I don't like, nor do well with fried food, but I thought Jim would enjoy it, so we bought 4 corn dogs and fries! I ate a whole corn dog! I'm not a fries person, so I didn't eat those.


Not long later, as it was getting colder, food was talked about again. Alissa and her friend set off to find more options. They return with a Grilled Cheese and Bacon and a 4 piece mini pizza. Yes friends, I ate whole Grilled Cheese and 1 piece of pizza, and ate the cheese and sauce off a 2nd piece, but didn't eat the bread/crust part lol. OMG have you added up the Carbs and Calories, and empty food value of what I ate so far?? I felt like a trapped animal by this point, as I wasn't really enjoying the event a whole lot anymore, and I certainly wasn't enjoying not hydrating, and eating well. I'm so used to being home now, and having access to what I want, when I want it. I've decided I just don't like being in loud environments, where it's struggle to talk, and worse yet, have people lean in to me, to hear what each other is saying. That's deadly germ transfer, right there, like that!

So at this time, we decided to leave. I couldn't wait to drink bottles of water on the way home and began my quest to hydrate now that I would be home, and safely by my OWN potty!

I was mentally adding up the unbalanced foods I ate, and laughed at my attempt to join "the real world". Crazy how illness, mobility, and always thinking of the "what if" really changes a person. Things that used to be so fun, aren't so much anymore. Everything seems like a "risk" now. Everything seems to have potential negative consequences. The things I used to do so spontaneously, are not worth it anymore, nor do they have the "reward" they used to. I always think that I'm missing out on so much, but I'm really not... cancer has changed me...


I couldn't wait to drink in positive calories and hydration, so I juiced probably 20 Tangerines, and had a glass of Mango Smoothie. But then I saw part of a Blueberry Muffin left, so I sheared off the "muffin top" and ate that! All the while saying, "what the heck, who cares, today is today, and tomorrow I'll go right back to broccoli and water" LOL. Yes, that's the story (written while on 40mg of Dex lol) of my crazy erratic eating, trying to be "normal" and go to a concert, and how I've survived myeloma for 8 years on my own version of the "See Food Diet" !!!!


********************

Back to Reality...
I have my every several month's appointment with my Stem Cell Transplant Dr this coming Thurs June 21. We'll see what he has to say about my "Holey" scan, and current labs. 
Then July 3, Darzalex infusion, and July 10, my first Zometa infusion. 

I'll be editing this crazy steroid post, but thought you might enjoy a "raw" post, written on a steroid buzz, where my brain was all over the map. I will always look for laughs, finding humor and sunshine in looming dark clouds. Hope you got a few laughs from this all over the map post :)) 


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


Friday, June 8, 2018

Just The Facts. A Hole Bunch of Numbers

6.8.18
Hello Everyone. Hope your June is beginning happy!

You know my status from my previous "Holey" posts, so I'll just give you the stats today :))



Darn you IgA, stop climbing!

A little perspective from where I was
just before beginning Darzalex, Pomalyst, Dex



M Protein still not showing...
Wonder if Darza or?
could be suppressing accurate readings?

This range always gives me the head's up
changes are happening... 

My support team I brought with me to 
this appointment. Just wanted other ears :))

So yes, I agreed to Zometa infusions to "strengthen" my swiss cheese bones. I still don't feel great about it, but from what I read, half had problems from it, the other half benefited from it. My Dr suggested every month, I kinda laughed and said a resounding NOPE! Let's go every 3 months, and the first with a very looooooong infusion. If you missed my post with my Pet CT Scan report results, click here. Yes, I base a lot of my decisions on what I discuss in person and read from other patients. Fortunately there are so many legit discussion groups out there now, and all of us patients reporting in about our treatment experiences. Of course medical research and professional medical recommendations are first, but I won't ignore legit patient experiences.

Additionally, my Dr suggested we up the mg of Pomalyst. So I'll be leaving 3mg alternating with 2mg behind, and increasing to 3mg Pom only, for the 21 day monthly cycle. Hello Neutropenia to come. Hello Zarxio Neupogen to the rescue...  

The final new protocol:
Darzalex monthly
Pomalyst 3mg, 21 days on, 7 day break
Dex steroids 40mg per week
Zometa to begin in July

I'm so tired of myeloma. So tired of having to think about all aspects of my health all the time. So tired of having to be concerned with treatment to stay alive, side effects from all the treatments, cooties, and life focused on everything medical. After 8 years battling myeloma, I'm actually forgetting what a  spontaneous "normal life" is. A life of just going, doing, being. Free from all this self focus. I just want to feel good, laugh, play, focus on enjoying life... not living a life trying to avoid death...  



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



Monday, June 4, 2018

So Many Questions

Hello June!
6.4.18

Just a quick update before my regular 8's post :))

Even though I've been whining about how fragile I feel, do you think I've changed my life??  LOL NO!  Still doing animal and ranch chores, doing all my "regular" things, which really isn't that much, but still doing all the things I was doing before... before I found out how Holey and defective I really am! I'm just so aware now that something may suddenly Pop, or Crack, or do whatever a weak, lesiony, holely bone does! ... Yes, so AWARE of my skeleton in ways I never was... but moving forward...

Tomorrow, 6.5.18, I have my monthly Dr appointment and Darzalex infusion. I have a LIST of Questions like none other! Why this, Why that? How come this, How come that? When this, When that? Blah, blah. I will share my questions and answers, and test results on 6.8.18

Just wanted to check in and let you know, for now that is... I've absorbed the shock and awe, and ready for the next myeloma adventure... Ha!... easy to say now, who knows how I'll feel tomorrow, after hearing answers to my questions!!! Thanks for reading and caring as you do :))


Our yard has incredible roses! This is actually ONE rose bush. Amazing how this variety starts out yellow/pink, then evolves to bright orange/pink, then to light pink as they wane. Beautiful fragrance too. One bush, symbolizing, birth, youth, full life, then ... time's up... Such is the story of our lives...


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


Monday, May 28, 2018

Feeling so Fragile

5.28.18

Hello Life...
This crazy life of mine, ours...

I'm still obsessing on my Holes. On my Lytic Lesions. On my Plasmacytomas. On my holey bones. On how my perspective of my self, my body, my life, my longevity, my journey with Myeloma has now changed. Yes, changed. Knowing I have INNUMERABLE HOLES IN MY BONES, has really really affected how I see my incurable, always getting worse, journey with Myeloma...

I have a new reality, that's probably not new news inside me
I now know I have holes in my bones
I now know I am so much more fragile than I previously knew
I feel like my bones are made of glass, ready to break at any moment
I feel so fragile, in so many ways
I am so aware of all my aches and pains now, that I ignored before
I am so much more aware of my "breakable" status
I am no longer feeling flippant about my diagnosis, this makes it real
I am no longer in denial about having terminal, incurable cancer

That word "INNUMERABLE" has changed my life...


Over the last 8 years, I never hesitated sharing my story of diagnosis, treatment, side effects, and the mental and physical aspects of being a myeloma patient. I quite boldly and openly, to many people's surprise and shock, shared all my torrid details. Funny and painful details, medical and psychological details. I shared with anyone that asked. Just like I do here with this blog. I told my story openly, candidly, honestly, without any hesitation. Ask, and I'll share anything you want to know about my life. It was a crazy, interesting, jaw dropping story for sure.

But I always felt that I was sharing someone's else's story. I always felt so disconnected to being an ill person. I never could relate to being a terminal, incurable cancer patient. I just got used to treatment. Went to the chemo lab 2x weekly, or 1x weekly, or 1x weekly every other week, or 2x per month, or 1x per month as I do now. I take "innumerable" pills daily, weekly, monthly, yearly. I got used to the weekly bi-polar steroid life. I got used to not feeling well 4-5 days a week. I got used to feeling fatigued all the time. I got used to feeling "sick". I got used to being limited. I just adapted and got used to all the physiological changes. But I forged ahead, doing my life, in the small ways I could, when I could. I just continued doing my life, one day at a time, depending on how I felt. I didn't make huge changes. I was just more limited. Limited in energy, limited in days to do things. Limited in contact with humans due to cootie contamination. Limited in energy in so many ways. Limited by side effects. Oh yes... there was one huge change in my life last June 2017, when all this caught up to me, and I made the choice to retire from my 35 year career as a college counselor.... because of myeloma and what myeloma had done to me and my life...

But I still have my life. A great life, though so limited. I still have a variation of my outdoor, love animals, love nature, life. I still have my amazing life with my family. I still have amazing friends and friendships, albeit, virtually via social media lol. Yes, everything is more complex, edited and slower. But I still have my life.

But How I See My Life Has Now Changed. How I See Myself Has Changed. I Feel So Very Fragile. Like I'm made of glass. So breakable. I now "fear" fracturing, breaking bones. What if I move the wrong way? Turn hard on my clavicle while sleeping? Trip and fall while outside with my critters? What if I just move the wrong way, and fracture or break a leg, an arm, a hip or worst of all, my spine. I feel so fragile, so breakable now.


I have never broken a bone in my life, even with all my horse riding falls of the past! Or from skiing, or hiking, or biking, tennis, or, or, or! Bone issues were for "other" unfortunate myeloma patients, not me. I felt different. I felt I had "escaped" the "bone involvement". I thought IgA myeloma was different. That I was hit more in the immune system, with my continually compromised immune system, always having to worry about getting sick, and being contaminated by human cooties. I thought I was different. I didn't think I had Holes in my bones. Innumerable holes, lesions, plasmacytomas,.. Innumerable. And now that I know I do, I know I am not different. I am like any other fragile, breakable lesion infested myeloma patient. Tragedy can strike at any moment. I'm scared in a way I wasn't before...


My next Dr appointment and Darzalex infusion is Tues June 5. I have a long list of questions for my Dr...
===================

Some good links about Myeloma Bone Lesions:

pet-scans-for-multiple-myeloma

myeloma bone pictures

multiple-myeloma/treatment-options

myelomabeacon.org/forum/multiple-lesions-starting-zometa

myeloma.org/imf-publications/understanding-series







Friday, May 18, 2018

Wholly Holes! Still Processing My Whole News

Hello 5.18.18

Thank you everyone for reading, commenting and caring as you do. I write for me, for you, for everyone, anyone, that may benefit from my myeloma journey, medically and psychologically. I write because This Is My Life. Myeloma has taken over my life for 8+ years. Symptoms, side effects, medications, treatments, appointments, extreme fatigue, my thoughts... I write because it helps me process what I am going through. I write because I enjoy sharing my life, my challenges, my struggles, my successes, my myeloma realities,... sharing with anyone that chances upon this Blog. I write because this Blog will be my written Legacy, living on and on and on, beyond me one day...

Denial is my middle name
I'm so silly... thinking this machine, this PET CT Scan
wouldn't show much... Ha! on me...
And of course, it's a perfect "hole" shape :))

Yes, Holes. Lytic Lesions. Holes, "Innumerable" holes, through out my "axial and appendicular skeleton", the report states. I am still stunned and surprised. Shocked. Disbelief. Incredulous. Confused. Sad. Mad. Angry. Betrayed. But mostly Disbelief. How? When? How can this be? Has Myeloma always been eating me up alive? Is this recent? Or has this been since 2009? I have always been a "Why" person, and I will never stop wondering Why about most everything. Just who I am. And I accept that I will only have answers to the "Why", maybe 50% of the time, if I'm lucky.

I read about Myeloma all the time. I want to know, be informed, be in the information loop. But I am not a Scientist or Medical Researcher, Doctor, Nurse, or Pharmacist. I'm a deep thinker, a Psychologist, Counselor. I want to know as much as I can, about all the things I'm fascinated by. But Myeloma has stumped me. I still, after 8+ years, I still don't understand Myeloma. I can't fully process the intricate Anatomy and Physiology of our bodies. Trying to understand Myeloma from a Biological, Chemistry perspective, is frankly over my head, and beyond my advanced education that I do have.

But I read, read, read. I've been looking at Skeltons. At anatomy pictures, charts, diagrams. I'm trying to figure out where all my Holes are. I want to know what these Holes look like from the inside. I want to understand how Myeloma grew all these Lytic Lesions inside me. I keep mumbling "Holes" to myself. Omg, I have Holes in my bones. Innumerable Holes. I have Holes in my Skeleton. Holes. I'm a Holey Skeleton. My bones have Holes. Cancerous Holes. Cancer in my bones. Holes that have cancer. Myeloma Cancer ate Holes in my Bones. Holes. Innumerable...


I took this picture just before the Scan began. You know me, silly, making light of things, thinking "oh this won't show much, but what an interesting medical adventure it is!" I had no idea the irony of the circular shape of the Scan machine! It's a giant Hole. Oh so ironic right! The machine that found my skeletal Holes, is a Hole. A medical Hole I go through to find my Lytic Lesion Holes. Ah, can you believe this! Honestly, I never ever really thought this Hole machine would find so many Holes in me. If you haven't seen the written diagnostic results report, I posted it for your viewing pleasure on my previous, 5.9.18 post.

I received the CD of my PET/CT Scan picture results yesterday. I can't figure out all the data and views. Omg. Each time I click, there were images in the images in the images. I saw my body in various forms. Some views looked like Aliens invading. Some views look like the Stellar System, like Outer Space, like the view of millions of stars coming at you. I saw my spine, my whole body and weird unidentifiable body parts. What is all this? Medical professionals are sooooo smart. I have such respect for all the knowledge everyone in the medical field has. They all look at this, and know exactly what it is. Wow! For sure, at my next Dr appointment, I will have my Dr go over my Scan pictures. Perhaps she can help me find a simpleton picture of my Holes.

I heard Sugar cures cancer, right? ;)
Thanks to all my meds, I really don't desire sweets.

A week ago, Friday May 11th, was my 7th City of Hope Stem Cell Transplant reunion. 7 years, 10 months ago I was hospitalized at COH for a month, for my SCT. Yes I was there a month due to complications from my Hickman Catheter becoming horribly infected. It's a crazy story, that I've shared before, but basically it happened because I was too confident that I was so different, so strong, that germs couldn't invade my system, so I didn't follow of the directions of how to keep the insertion point in my chest covered properly. So when my immune system completely plummeted as expected, (officially called Nadir), from the high dose Melphalan chemo, I didn't have the immune power to fight off the cooties, and wow, did I get sick. They soon did "emergency beside surgery" to remove it, and I was on 5, 6, 7, antibiotics at a time to fight off this horrible Staphylococcus Aureus that attacked me! See, even from the beginning, I have never really accepted myeloma, and that I have a deadly incurable cancer. I always thought it would be different for me. Ha!

There's my room for all of July 2010

My neighbor Gary, who also has Myeloma, his wife and I celebrated our almost 8 year Stem Cell Transplant anniversary at City of Hope last week. Thousands of people there. Just amazing all the families, all the lives saved, ... and then those that were not... so many lives represented... We are the lucky ones! 


Yes, Gary is my neighbor, and we both have Myeloma. Get that! He was diagnosed about 6 months after me, and had his SCT about 6 months after me, both of us in 2010. Gary's about 12 years older than me. I am IgA. He's IgG, Light Chain type myeloma. We have the same medical team, similar treatments, and we are both 8 year survivors. And Neighbors. Isn't that crazy! We attend our regional Myeloma support group together also. And when metal mouth from meds and steroids have calmed down, and we don't have GI issues, or we're not too fatigued or sick, we even go out to eat together! Neighbors and Myeloma buddies! What a lovely combination!

Sweetest couple ever!



Today, I'm headed to the Dentist, as so ironically, I had pre-planned dental work scheduled PRIOR to knowing about my Lytic Lesion Holes. Crazy timing, yes. I have a cracked tooth, that I suspect was a result of me tripping and falling into one of our horse poopy containers, and slamming my FACE onto the rim of the trash container, before going head first in!!! Remember that crazy, ridiculous story! I'll find it, and link it here for your entertainment again.... So the plan is to drill down the tooth, clear out any decay, and cap it off. My Dr has me pre-medicating with Clindamycin, to prevent a bacterial infection. Previously, I was reluctant to do what I thought was "unnecessary" antibiotics, but after being so sick so often, I'm on board now :)) Down the hatch 2 pills went, no problem. 

And YES....., I have decided to do the Zometa treatments to strengthen my bones, and hopefully fill the Holes, and prevent new ones. Ha! I don't know if Zometa is that magical... I'll begin probably in late June, after my dental work today and again in a few weeks. I will for sure only agree to it every 3 or 4 months, and will make sure to do a very sloooooooow infusion, and hydrate a lot. Thank you everyone, and fellow myeloma warrior Ellen, for your kind and informative comments!!

And that's where it's at today May 18, 2018. My mind is still reeling from all the news, and my eyes want to see these stikin Holes on the scan pictures... Still processing the word "INNUMERABLE"...  that's sure a wake up call... "Innumerable lytic lesions throughout the axial and appendicular skeleton..." Holes. Innumerable Holes, has taken over my silent mental vocabulary.

We had a low key, but very fun Mother's Day. I feel loved every day, and Myeloma can't steal that from me. Hope all the mom's reading this, had a lovely day too.

The Fab 5! 
They are my life!

Our roses are incredible this year!
So much beauty, heals my soul

And the beautiful sweet scents are just amazing!

"Innumerable" roses :))



City of Hope
Thank you for my very successful July 2010 Stem Cell Transplant


So now... it's all about obsessing on When, How, Where my Holey bones will crack, fracture, break.. Where's T9 anyway? Will I break my Clavicle turning in bed one night? Where is my right Scapular Spine lesion? Will I cough wrong, move wrong and break ribs # 3 and 8? Where's my left Sacral Lunency? Will my left Femoral Plateau crack and break, or plunge off a cliff? Or my Proximal Tibia? Or my Hypermetabolic lesions do something hyper. Or the Osseous lesions, do whatever they do? And of course, what would all this be without my lesion in my Skull... my oh so ironic Hole in my Head!! My brains will seep out... 



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



Wednesday, May 9, 2018

Scans, Bones, Holes and Honeycomb News

Hello 5.8.18... Crazy 8 day...

For a cowgirl that used to have so little drama, I guess I've become the Myeloma Drama Queen!
So much news at my Tues May 8th monthly Dr appointment and Darzalex infusion. I'm still reeling and way too exhausted to tell the "hole" story now. I will post my news tomorrow below, with my PET CT Scan reports for your viewing pleasure :))

This should get you in the mood! 


Thank you for reading and caring as you do about my crazy Myeloma journey.
See you tomorrow for the Hole story....

=================================
5.9.18
Here's the "hole" news: 

Just to recap, I did the full body Pet Scan back the first week of April, 2018. Prior to that, I had done annual Skeletal scans, Xrays, Bone Density scans, etc. These didn't show a "hole" lot, but did show I had... no joke... a Hole in my Head, left side skull, a Lytic lesion. Yes, serious stuff, but I have to laugh at the first Lytic lesion I knew of, was... a Hole in my Head :)) Very fitting for me!

Anyway, after being so sick last month, I didn't aggressively pursue the results of the Pet Scan. I did email my Dr once about it, and she replied that there were lesions seen, but she did not go in to detail. Now I know why, and she indicated this yesterday, at our appointment. There was just too much to tell, as so much was seen, that she of course wanted to explain the details to me in person. We discussed my Labs, IgA, MProtein, CBCs, etc, and remarkably, those are ok, except of course, my IgA is out of the normal range, but nothing new about that. It went up slightly, as you'll see below.

And then she showed me the results of the Pet Scan. I'm a pretty savvy gal, but I sure don't know Anatomical terminology well, and so much of what we read together was, to me- "wow, really, wow, where, it's what, there too, wow, really, that area also, wow, there too, wow"... So I asked her to point on my body, where all the lesions, the holes, were. That brought the point home when she pointed to or touched where... Legs, Femur, Thighs, Pelvis, Spine, Tailbone, Ribs, Clavicle, Skull, etc. I maintained my composure. It was just so overwhelming, and I just couldn't absorb it all. I was also buzzed on my 40mg steroids, so that helped me still be me. I didn't really feel the full impact of the report at that moment. Scott asked me if I saw the scan pictures. Wow, no. I didn't even think of that then... I'll get right on that... soon...

After we confirmed continuing on the current treatment plan of Darzalex, Pomalyst 3mg/2mg, and Dex steroids at 40mg, she asked if I'd be willing to start on Zometa, the bone strengthening Bisphosphonate. She barely mentioned it, and I began shaking my head NO. She smiled, and said she knew I was reluctant, as we had discussed it before, but she wanted me to think about starting it. I said Nope, but...well... maybe this summer. See, I've just read a lot of negative reports of the side effects, and possible "ONJ" complications of Bisphosphonates, that I just don't want to take on another chemical at this time. Yes, call me stubborn and stupid, but, geezzz, 8 years of treatments, 8 years of side effects, 8 years of mentally processing all of this, 8 years of only having a few "good days" per week... blah blah, .... I just don't want another thing to deal with now. Yes, sounds ridiculous, as why would I refuse a medication that is supposed to help me, and help strengthen my bones, and help tame myeloma's dangerous invasion. Ugh, it's just so overwhelming all the time to battle. All the time having to think about every aspect of myeloma and my health and treatments and side effects and little quality of life. Yes, I am still alive because I have been willing to treat to infinity, and I have great insurance covering my treatments, but I just keep hoping for a magical break. Ha! I'll get that "break" in terms of broken bones, right...  Ugh... so much to process... yet as I always say, in comparison to so many myeloma patients, my situation isn't as bad... well it is, but it's not... it's all so relative... Holes...

Dr P is a wonderful Dr, and I like her very much, and appreciate her knowledge and style with me. She is very concerned about my status, and does not want myeloma to get ahead of us. She encourages me to consider all options, and I will. Soon. Possibly. Maybe. Yes, I will... maybe...


Next, off to my "other office", the Chemo Lab. Crazy how I feel so comfortable there, and I'm able to "enjoy" my treatment time. The staff is so caring, concerned, thorough and welcoming. I'm sure not everyone feels this way, and it's a very scary place to many, but I've been doing this for so long now, it's really like a 2nd home to me. It's a "spa date" for my cells. Good poison, powering my weak fighter cells. It's a chance for me to just sit, be taken care of, and not have any other responsibility than focus on me, which is a big rarity in my life... I feel well taken care of there. Watching the IV drip into my veins gives me a sense of comfort and security, knowing those powerful chemicals are pummeling myeloma and keeping me alive. Keeping me alive for a little while longer. A long while longer? Who knows? Just please keep me alive magical chemicals...

Prior to arriving to my appointments, I take 40mg of Dexamethasone steroids when I get up. On treatment days, that's around 6 or 7 am. They often fully hit me when I walk into the chemo lab, which is such "bad timing" as I'm feeling no pain, and quite jovial. My happy affect can be so "inappropriate", so I work on taming my party persona, knowing there are new patients, scared patients, sad patients, and very sick patients there, who probably view me as a kooky lunatic, bouncing in as I do.

But soon my goofy mood is ambushed with a 50mg push of liquid Benadryl, which quickly counteracts the silly making effects of Dex. I become droopy, mush mouth, blurry brained, dizzy and sleepy. It's really quite hilarious observing what all these meds do as they collide within me. Meds are a powerful thing. I never knew, since prior to myeloma, I rarely needed medications. Soon I feel as if I could sleep, yet my brain is still so alive. Holes. Thinking. Thinking. Thinking. Especially then, this day, that I found out how many myeloma created Lytic Lesions have grown in my bones, making holes in my once strong, never had a broken bone, skeleton... I have holes in my bones. Many bones with holes. Holes in my Bones. Up and down my body. From Head to Legs. Holes. Wow...

Minutes turn to hours. Hours of infusion. Hours of processing my status. What happened to me. Why? How? When did myeloma invade? How can this be? Is all this a mistake. Holes. Can't be my life. I'm sad. I could cry. I don't want to cry in the chemo lab. I'm quiet. I just watch everything going on in the chemo lab. Holes. It's so busy. So much hustle bustle. So many patients. Nurses are so busy. Chemo Pharmacists in and out consulting. Holes. Drs in and out visiting patients with issues. Patients pushing their IVs to the bathroom. Family members visiting their patients. Families and Friends in and out. Consoling, helping, pushing, supporting. I'm alone. Holes. I always come alone. I don't want to impose on anyone to bring me. Normally not a need to, although the nurses always worry that I drive myself home. I always say I'm ok, even when I'm not ok. Today I am not ok. Holes. Mentally, not ok. Physically I feel ok. Side effects yes. But I'm functional physically. Psychologically I am not ok this day. Holes. But I'm Julie. Counselor Julie. Cowgirl Julie. Momma Julie. Animal rescuer Julie. Cancer Warrior Julie. I have to be ok. I make myself ok, even though I am not ok. Holes. I'm so sad. Tears are welling up. I suppress them. I counsel myself. Holes. I'll be ok. Nothing has changed. These awful lesions didn't just appear today, I tell myself. I've been living with holes for years. I just found out about them. My reality has changed. I'm more scared. I'm sad at what has happened to my life. What life I have left. I look at my body. My legs, arms. Feel my ribs and back. I think about my spine. Holes. So scary what's down the road for me... I feel so disconnected to myself. How? Why? When?, did all this happen? I'm so sad. But I must push forward. I'm alone. Holes. But I'm ok. I make myself ok. I push back the tears. Holes. I push forward. I smile and chat when necessary. I fake it til I make it. I push back the tears. Holes...


Finally after being there from 10am, it's about 4:30 now, infusion is done. I look at my paperwork and remember my Dr wanted me to get a Femur Xray. What's a femur. I think I know. Don't feel like doing it today, but then I know I won't feel like doing it this week, or next... chemo crash time in a day or so, for many days. I won't feel like going back to the clinical environment. I'll want to pretend I'm well, that I'm ok, and I don't "need" to be at medical clinic. I pack my bag, say goodbye and thanks, putting on a smiley face. Several nurses say, "wow Julia, you were so quiet today, are you ok?" "Actually no, I'm not", I reply. "I received some really bad news from my Pet Scan". They say they are so sorry to hear this, but it's late, patients are leaving and they have a lot of follow up paper work to attend to. I remember the end of the day in my office. So much to do. I will myself to Radiology. I check in. My life is surreal. Holes. How can all this be? My name is called, and a sweet friendly tech invites me in, tells me where to go, what to do, how to lay down. She shifts me this way and that. The Xray machine whirs and clicks. I submit. I'm sad. I'm in disbelief. Holes. This really can't be my life. I'm in a movie, a dream. I'll wake up soon. Nope, this is my reality. This is my life. Holes. Scans done. Grab my things, I walk to my car. I take the long way there, the outside way, I need fresh air and sunshine. Holes.

I take streets home rather than the freeway. I don't want the pressure of fast cars, angry stressed out end of the day, commuter drivers. Windows down, I need fresh air. But it's not fresh. Too much car exhaust. Fast angry drivers. I look for the pretty spring flowers to distract my heavy thoughts. Can't. Holes. I'm so sad. I shake my head in disbelief. I'm driving home from a chemo lab. I just had liquid immunotherapy pumped into my veins for hours and hours. Along with other medications to assist for a seamless infusion. Chemotherapy to keep me alive. This, the only thing keeping me alive. Holes. I have holes in my bones. Holes. Cars whizzing by me have no idea my story, and I, no idea theirs. Thoughts. Too many of them. Thinking, thinking, thinking. Holes. Tears welling up in my eyes. Lump in my throat. I have cancer. Holes. Incurable cancer. 8+ years of treatments. Holes in my bones. It will never end, until it's the end. This is my reality. Holes. This is my life. Holes. I am lucky to be able to do as I do. Holes. I have many blessings and good fortune in my life. I have so much to live for. So much to be grateful for. I will be ok. Holes. I will myself to be ok. Holes. I must be ok. Holes. Pretty green trees. Flowers. Sunshine. Mountains in the distance. Drive home Julie. You will be ok. You're not ok, but you can be ok. Holes. Holes in my bones. Lytic lesions. Everywhere. Myeloma eating me up alive, from the inside out. I read about it, I knew that's what myeloma does. But I thought I'd be different. Yes, always thinking it will be "different" for me.Tears. 8 years. How many more? I want to live. But I also want "quality of life". What will my life become... Tears. Holes. Honeycomb holes. I think of honey. Honeybees. Yummy real honeycomb. I laugh. Me and the bees. Life giving honeycomb to them. Life stealing honeycomb holes and lesions for me. Tears... Suck it up Julie. Wow... really life... wow... Holes.


I made it home. Jim and Alissa are there. They too are so sad with the news. Disbelief from everyone. Lots of supportive friends texting, messaging, responding to my facebook post. Thank you for all the love and support. It's all so surreal. My home life distracts me from my deep thoughts and tears. The doggies are happy to see me. Goofy, wrestling, playing. No clue of my drama. Holes. I read the report aloud to Jim and Alissa. I sent it to Scott. I say the words listing where my holes are. I laugh at my Anatomical ignorance. I must look all these terms up. I must learn the "geography" of my holes.

https://www.cityofhope.org/blog/multiple-myeloma-bone-health

Here's the report of where my holes are. Where my honeyless honeycomb is growing. Holes. Holes. Holes... Holes in my bones. Everywhere. Myeloma eating holes in me...

Scan details, page 1
(click to enlarge)


IgA stats

 Light Chain stats

No M Protein stats

And so that's the Whole story of my Holes.

Actually I have a Hole lot more to tell, but this wound up a very long post. If you've made it this far, thank you so much for reading, caring, and being interested in my thoughts, feelings, rants, stats, and life. We all have a story. We all have challenges. We all have joys and pains. No one knows their clock on this earth, and when their tick will tock. And there are so many many many lives out there suffering to such greater degrees than mine, and I know that. I'm just putting my real self out here, because I hope my sharing of my story and challenges, might help someone with their battle. I'm ok, and I will be ok. One day at a time. One issue at a time. One challenge at a time. This is only one mountain. My mountain. One of my mountains. I am surrounded by mountains of challenges. Everyone is. Isn't it all in how we deal with our mountains of challenges? I chose to be ok. I chose to look on sunny side of the mountain. I want to laugh. I want to be happy, for whatever time left I have on this beautiful earth. Holes. I have holes in my bones. It first began with knowing I have a Hole in my head. Really. That has to make you smile... 


No myeloma bone damage here
Just happy, healthy, silly puppy



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



Tuesday, May 1, 2018

Finally Better!! Ok, I Learned My Lesson...

Hello May!
5.1.18

Just a quick check in to let you all know I am finally feeling better, and getting beyond my gloom and doom. I was always so healthy, well and active prior to Myeloma, that being a Sickie now is just so difficult for me on so many levels. I can even handle the terminal, incurable cancer diagnosis, if I can just feel ok. When I don't feel ok, it just sucks the life out of me, drains my optimism, steals my hope, and gives me pause about my continuing purpose here...

But today, thank you Antibiotics, I am a bit better! This past Sunday I finally gave in, accepted that being sick 3 weeks was ridiculous. Even though every day I was a bit better, I finally gave in, and went to Urgent Care. What finally pushed me over the edge, accepting I needed medical evaluation, wasn't the sinus infection symptoms, as those were clearing up, but it was the awful loss of hearing, fullness in my Right ear, the sense of cotton stuffed in my ear, and the overall annoyance plugged ears feel like. I secretly knew I had tested the limits of my weak immune system's ability to dominate this crazy bug. Being stubborn, hoping to be who I was before Myeloma, was just down right dumb! Yes, I can no longer live in the past, hoping my body can always heal itself. I've been pretty lucky so far with battling the bugs on my own, and actually 90% of the time I do finally get well on my own, but geezzz, what am I proving trying to be so strong, and not getting medicinal help. Pride and Stubbornness in this situation is just plain dumb. Stupid and Dumb. Just call me "Dumb and Dumber" :))


So I went, was quickly evaluated for an Ear Infection, a result of the Sinus Infection that hung around for 3 weeks and collected it's final cooties in my ear. I was dispensed the Z Pak: Zithromax, Azithromycin antibiotics for 5 days. Yep, I laughed at myself, chided myself, and mentally bopped myself in the head for waiting so long. Dumb! Should have gone in sooner. But again, I didn't at first, as when I feel so awful, the last thing I want to do is leave my house, then as the sinus infection symptoms sloooooowly improved, I kept thinking I'd be well the next day, or the next, or the next... Dumb. The good news in all of this... no other issues. Chest clear, lungs clear, no pneumonia, no bronchitis, etc. I had effectively battled that part of these evil germs on my own.

Z Pak down the hatch for 2 days now, and headed to take pill #3 after I post this. Amazing what modern medicine can do for a struggling immune compromised, cancer, chemo ravaged body LOL! Duh Julie! Strong miracle myeloma meds are what have kept me alive for 8 years now. Modern medicine is amazing Julie. Accept it! Use it. Take advantage of meds other than myeloma killing meds to heal up. Dumb and stubborn here.

My ear is just now beginning to clear a bit. It doesn't feel as full, and when I purposely yawn and stretch my face, I can hear the popping and crackling of the ear mechanics! Ahhhhhhhhhh, what a relief! I never had any pain with this, just the dull, clouded, cottony ear fog. Ugh, I just don't do well, when I am not well. All my positivity drains, my optimism is stolen, and I am just a weak, whiny, feel sorry for myself, why me person. And in the BIG picture of things, these issues are so small. I just lose perspective.

Moving forward....

Next week, Tuesday May 9, I have my monthly Dr appointment and Darzalex infusion. I'll do labs in a few days, and know my IgA and M Protein status.

ADDITIONALLY... I don't think I mentioned.... 
I received an email from my Dr, letting me know that my early April PET/CT Scan DID SHOW new, and additional Myeloma LESIONS...

I received this news AFTER my last Dr appointment, so I don't know the details... then I got sick, so I didn't follow up for details. This adventure never stops, is never dull, nor uninteresting, right! I get well from the cooties, and now prepare myself for myeloma bone destruction news. As a fellow myeloma warrior says: "Myeloma is the gift that just keeps on giving!" Yep, forward march we go, one day at a time, one issue at a time, learning from each challenge, each speed bump, on this crazy road to I don't know where...


I'll post the results to this exciting news on May 9 or 10, depending on how I feel from my Darzalex infusion, and the news I hear... May your life be what makes you happy, rewarded, positive, thoughtful and meaningful. And may your body be your friend, and not betray you.

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



Saturday, April 28, 2018

Unfiltered Frustrations

4.28.18

I'm still sick.
I'm so frustrated with my life
I am so sick of being sick
So sick of feeling, being sick all the time
So sick of trying to avoid being sick
Then getting sick anyway

Yes I'm very grateful for so many many things.
Yes I am still an optimist and I have a lot to be thankful for
Yes I am strong, a survivor, a cancer warrior, and so aware that I am better off than so many many many
Yes, I know, I really do know, how "lucky" I am.... blah blah blah...
But I am very frustrated with MY life
My life right now.

Sorry to offend, sorry to whine, sorry to feel so pitiful, sorry to sound so ungrateful for all that I do have going for me...
But I am so very frustrated with MY life.
My stolen life.
I'm still sick.
It's now been 3 weeks being sick.
I am better than a week ago, and a week before that.
I am a little better each day, but I'm still sick.
Sick for more than 3 weeks.
I am so frustrated with MY life.
My stolen life...
.
It started with a horrible sore throat. Just horrible.
Then the fever for 2 days. Just awful. I felt just awful. I cried.
Then the nose, the head congestion.
Then the cough. The never ending, never relenting cough.
Coughing all night long. Choking, hacking, all night long. Still.
This bug is relentless.
3 weeks!

Yes, all this is physiologically "good". Good that it is draining out.
Yes, this is the process of illness.
Yes I am grateful my body is doing what it should do to get well.
But sooooooo slowly, so dramatic each day. Little relief each day.
Yes this represents my lame, immune compromised body trying to fight off the evil invaders.
Yes my weak immune system is rallying. Yes I am getting better a little bit each day.
Yes all the congestion, coughing, etc, is clearing out all the cooties. Slowly.
Too slowly.
Yes I know the biological process of a headcold, of this gross sinus infection.
No I don't have patience for the process
I've run out of patience
Cancer treatments and side effects teach patience
But I am impatient.
I don't want to learn more patience.
Dang it, 3 weeks is a long time to feel continually sick. Just sick.
Dragging, blah, weak, tired, defeated, deflated, yucky, clogged, stuffed, drained and draining.
My ears have been so plugged for days and days, I feel like I have cotton stuffed in them, or I'm under water.

Yes I am very very very fortunate I can battle on my own.
Without antibiotics, with just OTC help
Without getting seriously ill with pneumonia and winding up in the hospital.
Yes I should be proud of my feeble body for rallying as it does, and healing as it does, albeit sloooow.
Yes I am so aware of those that cannot battle on their own
So aware most myeloma patients, chemo patients wind up in the hospital with pneumonia in cases like this.
I am aware how bad "it could be", and No, I will never forget my month long hospitalization for my stem cell transplant process and recovery.
I am very fortunate I haven't been back in the hospital since July 2010.
Yes I am very very aware of how much suffering there is, and how bad it could be for me...

Kathy Boyer, Artist-Photographer Extraordinaire 

But I'm really really really frustrated with MY life.
What life?
Am I living or just existing?
So sick of being sick.
So sick of trying to avoid being sick, then getting sick!
So sick of postponing my life.
So sick of seeing my life go by, day by day, just waiting.
Waiting to be well to live life
Hoping for a break
Hoping to feel well enough to catch a break, to have a bit of fun
Hoping, waiting, wondering, not in control.

Oh, shut up Julie, you have a "great" life.
You're alive!
You've beaten Myeloma for 8 years now.
You have so many things to be thankful and grateful for
Yes Yes Yes
I know I know I know
So many many many things to be grateful for and I am...
I truly am...


But dang it, I am so frustrated that my life was stolen from me 8 years ago, and it will be stolen from me forever, as my reality is I have a severely weakened immune system, I will never ever be normal, I cannot engage in normal activities. I get sick when exposed to any germs and cooties. Always. I have no immune system due to Myeloma's ravages and chemo treatment ravages. No one in my family is currently sick. Nor did they get this illness. We were all together at the time I believe I was exposed. They all have normal immune systems. They are healthy, I am not. I'm the only one who got sick. I tried to have a bit of carefree fun, and I paid dearly for it.

I have cancer, I am sick, I will be sick forever...

I'm so sad about MY life-
So sorry to be so honest, but I am so sad about what has happened to me.
My plans, my future ideas and goals... what a joke...
If one is not well, one cannot do what they plan, wish, dream about.
I really didn't have "big" plans, just a few little adventures
If I'm always sick, or feeling sick, or avoiding being sick, am I living life?

Yes I am beyond grateful to just be alive. Yes I am.
But why so much suffering, so often.

My ears have been so plugged. I feel like I'm living under water.
So much crud, gunk and phlem... but getting better each day...slowly, so slow, too slow
The cough isn't quite as deep any more
Thankfully, it wasn't ever bronchitis-deep or in my chest, just a relentless cough, my body trying to rid itself of the cooties. Thank you body for trying so hard. So tired from it all.

I am so sad for what has happened to MY life.
I could list all my frustrations, but I would sound so shallow.
I have so much to live for, and I do everyday.
But sickness, feeling sick, or debilitating fatigue, sabotages me.
I just can't get over how limited my life has become.
How illness, side effects, treatments, then more side effects own, rule my life.
My stolen life.

When I am "well", I still only have a day or so to "play"-
I'm either experiencing side effects or planning for them, from the medication crash.
Can you imagine planning each week, when you'll be "sick", when you might be able to be well?
Yes, illness is MY life, and I still cannot believe it.
Yes it can always be worse, and it is for so many.
The suffering in the world is overwhelming.
The suffering from illness is beyond anything I ever understood.
We empathize when we understand-
And I now understand how debilitating illness is.
I wish I didn't...
I wish I didn't have to learn all these lessons.
I wish I understood why this happened to me and others.
I wish for everyone's health, happiness, healing, no pain.
Guess I'm wishing for a non reality.
Life is challenges, pain, struggles, infinite mountains to surmount.
Honestly, I don't want any more mountains to climb.
I don't need any more challenges.
I don't want to be tested any more.
But I will be, forever and ever and ever, thank you Myeloma.
I just want peace, serenity, calm, beauty, laughs and lightness.
I just want to be.
To breathe calmly, to breathe in nature and beauty, and to laugh at, and with life.
I just want to own my own life again, but that's not possible.
Myeloma owns me and my body, forever...

I'll get through this, I will, I always do.
Thanks for reading if you got this far.
May your life be what you want it to be.
May you find laughter, happiness, peace, joy, and most of all... health.

Grateful, Thankful, Beautiful Life

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

We said GoodBye to beautiful Charlene this past week. Her body failed her. She very quickly developed Kidney failure, lost a ton a weight, had a hard time eating, became dehydrated, so fast, so sad. But she had 3 good years with us. I rescued her from the Shelter March 2015, after her family turned her in, not wanting her any longer. She was around 12 then. Such a sweet purrrfect kitty. Our hearts are broken, but she had 3 extra years of life. My Betta fish died a week ago, and a few weeks prior, one of my Triplet rescue sparrows also passed. Our bodies betray us, but life will always march forward. Always... 



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.