GoodBye November! (Snow Road Trip update!)

11.29.19
And November’s a wrap…

Hello to December in just days…  Big Month of my 10 year Myeloma diagnosis!

CA had a crazy winter storm the last few days! Snow in areas that rarely get snow! So we took a drive today. Will be back with some really awesome pics!

Hope you had a wonderful Thanksgiving with your loved ones. We did.

I’ll be back to share some super fun pictures :))

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

Yes my BIG 60th Bday came and went, had several wonderful surprises at home, but no BIG GIANT celebration… I’ll post some pics on my next Dec post.

Thanksgiving came and went, and had a wonderful little family dinner at home… will post a pic in my next post also.

But what was the BIG beautiful news in all of this, was the incredible SNOW STORM So Cal had. So many of you reading this will be, ya ya big deal… Snow. But for So Cal, this was a Winter Wonderland experience for all of us. Not often the snow level gets down as low as it did for this storm. It was fun to experience, but also a reminder to me that I wouldn’t, couldn’t live in super cold weather at this time in my life.

So caregiver Chris and I loaded Jim in the car, and took a quick drive to the local mountains for a sightseeing trip. I did worry, what if the road closed, what if a storm moved in quickly, what if we got stuck somewhere as so many drivers were experiencing. Any of those would be disastrous with our medical complications… But I tossed caution out the window, and off we went. At one point the opposite side of freeway suddenly had zero cars and traffic, for miles and miles…  I suspected my worst fears had come true: maybe the freeway was closed due to snow and ice! We were going to be stuck! Have you seen the news reports of freeways at a dead stop with thousands of cars going nowhere! People stuck in their cars for hours and hours! I always wonder what they do for heat or a/c or supplies or going to the bathroom! Truly one of my greatest fears since both our diagnoses!
Turned out HazMat closed the freeway for some sort of hazardous spill, and it was cleared up when we returned on that side. Thankfully, we made it to the beautiful snow covered hills and back with NO drama!

Of course before we went, I had to wait for my lower GI system to clear to be able to go on this little road trip, and couldn’t eat or drink before or during the tour, but that’s the price I’ve learned to pay for any event I want to experience. They say, get out and have fun. Just go Julie. Live Life. Be Happy. Do Things. Don’t let all the medical issues limit your life. Ya Ya… few can fully understand the hindrances I have and what prevents me from doing much at all… I also think friends and family have “cancer fatigue”, where they are tired of hearing of my status, side effects, how my life has changed, and how battling incurable cancer for 10 years has affected me so deeply. I think I’ll write a pity party on that, next blog :))

In the meantime, enjoy these beautiful snow drive pictures!

Winter Wonderland
So pretty!
So much snow everywhere!
This is So Cal! Seriously!
Caregiver Chris and me
Unbelievable snow
at the shoreline!
Pyramid Lake
This lake is usually full of boaters and seadoos!
Lucky us, beautiful drive accomplished
Welcome to December everyone! Hope you can enjoy and not stress over the holiday busyness! All our medical stuff has so changed my ability to do things, and therefore… I have had to accept my inability to do what I used to do. So cheers to hot chocolate, spiced cider, a crackling fire, friends and family, and no malls for me :))

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Big Birthday Coming Up… Sorry Myeloma, This Time I Won :))

Hello 11.19.19

I generally have my blog posts written in my head, ready to post on the 9’s, but of course all our darn issues and medical complications here, always seem to sabotage my best writing intentions. I often send drafts to myself at the most unusual times, as I seem to have some of my most inspirational writing moments when I’m in the Horse Arena Picking Up Poop!!! ahaha :))  Or very late at night when brushing my teeth. Have you ever looked at the patterns of your toothpaste splatter in the sink as you brush your teeth? I see “messages” there all the time…

Sometimes, I think I should just post my raw, unedited thoughts, then I realize I am writing to World, and need to be careful what I put out there… but I love Authenticity and Spontaneity. I love to just write from the moment, from the gut, from the heart. Just letting it all spill out from what’s circulating in my damaged brain.

So I think I will this time… but after this little “announcement”…

Today is “gradual” crash day from yesterday’s “Monday Medication Madness Day”, so I’m starting to feel kinda yucky… Yes still weekly treatments of 40mg Dex Steroids, 1 Velcade shot in the belly jelly, 8 Cytoxan Cyclophosphamide capsules at 400mg. I keep posting about this, as I’m always so INCREDULOUS how my body tolerates all this stuff injected in to me, ingested, digested in my tummy. And that I do this every single week, no breaks, no time off, every single frkin week. I think it’s all so amazing I’m still here, and coming up on my 10 year Myeloma diagnosis Anniversary next month!!!

And speaking of Anniversaries and Birthdays… drum roll please… :))
This Friday, Nov 22 is my Big 6-0 Birthday! Yep, diagnosed at 50 and here I am, 10 years later, turning 60, against all the odds and “predictions”!! Never, ever thought that I would see 60. Many would “hide” this number from the world, but I’m super duper proud I am still here and able to do and be me still. 60 years on this earth! Incredible. Sounds so OLD, but I sure don’t feel OLD on “good days”, and sure don’t feel like the stereotype of what 60 sounds like, or I used to associate with 60. Whoohoo, I’m OLD!! I’m a “senior citizen” ahaha… sure don’t feel like it mentally! And on Dex steroid days, I don’t feel like it either!

Be right back… with my raw and honest post from the horse poop… :)))
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Hoping to not offend any of you battling other cancers, or all the other awful life “illnesses” and challenges out there everyone is dealing with, but honestly, there’s just something different about battling the Life Long “death sentence” of Myeloma. From day one of diagnosis, I was told THERE IS NO CURE FOR MYELOMA, BUT IT IS TREATABLE… ya ya I thought then, no BIG DEAL. Treat and Get on with life, I thought at the time. I really wasn’t that scared or worried. Just take some meds, do the stem cell transplant, and get on with life, get back to work, get back to life, get back hobbies, etc… ya ya, Terminal, ha, it’s Treatable, they said….
WHAT I REALLY DIDN’T AND COULDN’T PROCESS AT THAT TIME, WAS THE REALITY OF LIFE LONG TREATMENT IF I WANT TO STAY ALIVE…
What I really couldn’t and didn’t process was what it would be like to treat an Incurable Cancer FOR LIFE!
What I really couldn’t process then was the Continual Cycle of Treatment and Side Effects… Every Single Day, Every Single Week, forever and ever and ever and ever, if I want to stay alive.
Can you even grasp the concept of doing chemo EVERY SINGLE WEEK, AND BEING SICK EVERY SINGLE WEEK, NO BREAKS, NO TIME OFF.
Can you even grasp the thought of ANTICIPATING doing chemo every single week, and anticipating and dealing with yucky side effects Every Single Week. I couldn’t grasp or process it then, and I still wake up shocked every single day. Shocking writing this, as THIS. IS. MY. LIFE. This is my Reality.

I’m invited places all the time. I want to make plans all the time. I want my previous life back all the time. I want to work, play, do, go, be who I used to be, all the time. I want to go back to being “normal”. I want to say Yes, to going places, doing things, playing, working, doing projects, having the energy and normalcy to do… but I just can’t. The fatigue from myeloma and treatments and side effects is disabling. I feel more and more nauseated as I write this, as Monday’s chemo side effects are hitting more and more each minute. I don’t know if I’m hungry or nauseated. If my head hurts from thinking, or from the medications. I’m thirsty, but I don’t want to swallow or drink anything, but I know I must. Everything is yucky today and tomorrow and the next day. Imagine a life of forcing most anything and everything. Of doing everything and anything because you HAVE TO, not because you want to, like BEFORE MYELOMA… My Halloween decorations are still sitting out, needing to be put away before Thanksgiving and Hanukkah and Christmas, and New Years comes. There are storage boxes to go through, years and years of stuff to go through… but myeloma always sabotages….

Everyone says get out there and do things. Live your life. Be happy. Go places. Ha! Ya right. And have near misses with GI issues. Force going places when you feel sick and dizzy and achy. People just can’t grasp that I look as good as I do, but I feel so yucky. My personality is to “grin and bear it”. “Fake it til you make it”. And I’m a natural communicator. So I force energize myself and my conversations, when I really don’t have much helium at all. But then there are days… when I just can’t. And that will be tomorrow, Wednesday, my worst day… But I still have to pull myself together to be “boss lady” here, as I’m still in charge…

They say don’t make cancer your life, or your identity… Oh really? 
With treatment every frikn week. 
Side effects every every frikn week, how can cancer NOT be my life?!
Live your life they say
Be happy they say
Get out and do things they say
Be happy they say
Yes to all of those, but how, when you feel so awful?
How “happy” would you be with a Terminal Cancer Death Sentence?
How “happy” would you be with a husband with Terminal Alzheimer’s who used to do EVERYTHING and was MY CAREGIVER!
They say, get on with your life, don’t make cancer your life, don’t let cancer control you. 
Really how is that possible when treating terminal cancer IS MY LIFE, every day, every week, forever and ever to my infinity.
Really, how can I not make cancer my life, when cancer crept in my life and made my life all about cancer, and illness, treatments, and sadness, and overwhelming challenges every day… This is not a choice. This is not something I opted for, or chose in my life. It’s not a decision I made. It’s a decision that my body made for me. Yes how I respond psychologically to all of this is a choice, but what happens to me physically, I have little control over… 


Everyone says just be happy. Well I am very happy some days. I do feel ok some days. But my REALITY IS I AM A CANCER PATIENT FOR LIFE. NO OPTIONS IF I WANT TO STAY ALIVE. I must do chemo every week to stay alive. I must suffer with side effects if I want to stay alive. Cancer is my life, as Cancer invaded my life and became my life. It is my reality, and I cannot pretend differently. 
Most other cancers can be treated, and the patient achieves remission, and moves on with life. Myeloma is different. Myeloma is incurable… myeloma is for life. 


So cheers to surviving a decade after diagnosis. This makes me happy and proud! Cheers to being as “well” as I am, after 10 frkn years of treatment and my body trying to kill me. Cheers to turning 60 on November 22! I had plans to celebrate in many different ways, but reality is that can’t, won’t happen because of chemo side effects. This is not a poor me, pity party. It’s my reality. No I am not depressed. No I am not angry. I am just explaining the Reality of my REALITY… 



So I pulled myself together the other day, and didn’t eat or drink beforehand, and managed to get me, Jim, caregiver Chris and 3 of our little doggies to the super fun annual Bark For Life event. This is the doggie version of the American Cancer Society’s Relay For Life. Here’s a few pictures of my “Mutts For Myeloma” Team. So much fun! Also, my Myeloma blog buddy Matt came out to the event so we could finally meet up! It was so wonderful to finally meet in person! Thank you for making the drive Matt! Pretty amazing all the incredible people I’ve met through this blog, despite awful myeloma being the catalyst for us meeting.


Go Team Mutts For Myeloma!

Aren’t we all cute!
Look at all the cute doggies!!!

He’s an 8 year survivor!

Me and my daughter Alissa and our darling “littles”

I’m pretty worn out here 
But “fake it til you make it” right!



Thank you for reading and checking in, and caring about my life and story as you do. Hope all is good in your life, and if you’re a myeloma patient or cancer patient, I hope your treatment road is as tolerable as possible. 


I’ll be back to edit this again, and again and again. 







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So Much Myeloma Everywhere!!!

Hello and Goodbye 11.9.19
Hello 11.10.19

So yesterday I attended my local Myeloma support group, that I have been attending for years… (I’ll have to ask our facilitator how long I’ve actually been going)… Wonderful group, wonderful facilitator/leader Theresa! I have benefited so much from attending this group. Have learned so much from everyone’s stories of treatment, their life with myeloma, and sharing cancer survival skills… The meetings are informative and emotional. Some meetings are Medical/professional speakers, other meetings Members sharing their Myeloma stories. Yesterday we had a large group, with quite a few new members. Newly, recently diagnosed, to one man, WHO HAS SURVIVED AND LIVED WITH MYELOMA FOR 32 YEARS! YES 32 YEARS! That’s not a typo! I still can’t get over it. His story gives all of us such hope!!!

Driving there I was teary and emotional, as I haven’t attended in months due to my husband’s rapid Alzheimer’s decline, and the challenges of both our illnesses, along with the recent CA fires surrounding that area and mine. But on top of those emotions, I was super sad and reflective because my neighbor and special myeloma buddy Gary, (who I attended with for years (along with his wife Pat, and my hubby Jim)… had recently passed away this August… So driving there alone, without any of them, really affected me. Just so much loss on so many levels personally, along with seeing the burnt hills, so close to homes and the Reagan Library, was just so sad on so many levels…

At the meeting, there were so many stories of all kinds of myeloma treatments, successes, failures, hospitalizations, medications, medications, medications, stem cell transplant stories, challenges, challenges, challenges, etc… but what impacted me the most, were the stories of horrific bone issues, compression fractures, bone breakage survival, bone surgeries, Kyphoplasty, etc… I need a lesson in Human Anatomy and Physiology to know what parts everyone was referring to!!! Brought back memories of my status this time last year, with my awful painful plasmacytoma and lesion issues, resulting in Radiation in December 2018… But in comparison, I feel so fortunate with my treatment success and limited pain issues compared to so many… more on this… as my Horse Farrier is here now, to trim the horses hooves… then more “stuff” here to attend too, then off to take weekly blood tests, then, then, then…. see there always so much going here… but in perceptive… I’m so very lucky…

In the meantime…. here’s our Anatomy lesson for the day… as so many bones were mentioned in medical terms, I know not what they are!!!

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I’m back :)) ….

There were so many stories at the meeting regarding how most people were initially diagnosed with myeloma because of severe bone pain, bone issues, bone breaks, bone surgeries, etc, it was mind bending. So many stories of kidney failure too. When I was diagnosed, my presenting symptoms were extreme horrible blood test results (clearly showing myeloma), extreme fatigue (I thought was work/life exhaustion), extreme anemia from bleeding out (which I thought was allergies and “girlie change of life”), breathing issues (which I thought was from being out of shape), and a terribly compromised immune system (which I thought was from being exposed to so many students).

But the stories! OMG :(( One lady, who has been a member for a while like me, and also a horse gal like me, was diagnosed when her neck/spine collapsed. Area C-something in the graph above. She was at her ranch, teaching riding lessons, and doing something in the barn, when cccrrraaaacccckkkk, went her neck… So many stories of extreme bone pain, bone fractures, lesions, on and on and on… So the “pity party” I came to the meeting with, quickly turned to gratefulness of my status.

Whoops, here comes Jim needing help, and our caregiver has left…
I’ll try again to update…

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Thank you loyal blog followers for your concerned messages regarding me not posting on the 9 yesterday…
Just so much going on here, and I never get the private time to write, as I used to… Not enjoying being “boss lady” in charge of “everything”….

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Spooky Lab Results Coming On Halloween…

10.29.19

So much going on here in CA with the fire and wind. I’m beat up from being on high alert 24 7 with everything. Potential fire, crazy winds, potential power outages… not to mention our daily health and functionality challenges… ugh, I only wish for zero challenges in my life, but I guess that’s just not reality nor “real life”…

So grateful for all the brave
First Responders!

Took my full labs this past Sunday, and will meet with my Dr on Thursday for my Myeloma status. I’ll update you here on Halloween. Hoping I don’t get spooky results :))

My immune system continues to roller coaster and mainly plummet low. Currently my WBC is 2.3, ANC 1.84, RBC 3.64, Platelets 125, HGB, 12.5 Fortunately organ status still good, with Creatinine .71, GFR 93, and all other Liver and Kidney functions in the normal range. Today begin’s Monday’s chemo crash, so I don’t have much “helium”, and not looking forward to the continued crash tomorrow.

I have an early online Myeloma conference meeting tomorrow morning, and not sure how well I will feel to participate in it. I miss all my “professional” activities, I miss connecting with people on a deeper level, and I miss participating in intellectually stimulating environments. But I can only do so much now, and I have accepted I just cannot do what I used to do, nor what my mind wants to do. Even after almost 10 years, it’s still so surreal how my life has changed on every level. But I am deeply grateful for so much, as frustrated as I am…

Ok friends, I’ll be back with my Myeloma status labs…
Thank you for checking in, and caring about my story as you do :))

Did I get a Myeloma Trick
Or a Treat 
for a change??? :))
Here’s my Spooky results:

IMMUNOGLOBULINS

2/14/     3/14/     4/11/     5/9/          6/6/        7/3/        8/4/        9/2/      9/29/    
10/27/2019
IGA 70 – 400 mg/dL
1,230      1,260      1,440      690         740         676         654         638         731         648
IGG 700 – 1,600 mg/dL
87           85           98           95           88           150         84           75           85           78
IGM 40 – 230 mg/dL
< 18        < 18        <
18        < 17        < 17        < 17        < 18        <
18        < 18     < 18
IMMUNOFIXATION
RESULT
PROTEIN, URINE,
QN     
Me = 6.0 mg/dL        (normal =  less than 11.0 mg/dL)
No monoclonal protein detected
                                                                                     ME                RANGE
KAPPA LIGHT
CHAIN, FREE
                            2 mg/L               3 – 19 mg/L
LAMBDA LIGHT
CHAIN, FREE, SER/PLAS
     2 mg/L               6 – 26 mg/L
KAPPA/LAMBDA,
FREE RATIO
                         Not Applicable  
INTERPRETATION, IMMUNOELECTROPHORESIS
                                                                                   ME                  RANGE
TOTAL PROTEIN                                                  6.2 g/dL        6.0 – 8.0   g/dL
ALBUMIN                                                            3.92 g/dL      3.40 – 4.90 g/dL   
ALPHA-1-GLOBULIN,
ELECTROPHORESIS   
0.26
g/dL      0.17 – 0.50 g/dL
ALPHA-2-GLOBULIN,
ELECTROPHORESIS
   0.67
g/dL      0.55 – 1.00 g/dL
BETA GLOBULIN,
ELECTROPHORESIS
          1.27 g/dL      0.65 – 1.10 g/dL
GAMMA GLOBULIN,
ELECTROPHORESIS
      0.07
g/dL     0.70 – 1.60 g/dL

M-PROTEIN, SERUM                                           0.59
g/dL       0.00 – 0.00 g/dL
PROTEIN
ELECTROPHORESIS RESULT, SERUM      Abnormal            

Hopefully you can make sense of these crazy Myeloma stats. You’ll see my IGA is Not Normal, and M Protein is Not Normal, BUT it’s sure better than months, years ago. Go 40mg Dex Steroids, Velcade injections, and 400mg Cytoxan Cyclophosphamide chemo!!

I wound up converting my In-person Dr appointment to a Phone appointment, as I was just too beat up and exhausted, was having my usual GI cleanse crash side effects, and just didn’t want to risk getting on the crazy LA freeways with the fires, power outages, etc, still happening! Thankfully my Dr is wonderful that way, and we viewed my MM results on the phone and online together.

Well, that’s my status on this Halloween 2019
Hope you had a wonderful October, and cheers to November festivities without Drama, right :))

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Moving Forward Always- Time, You Are Our Friend and Enemy

10.19.19

Hello 10.19.19… how can it be a 9 already…

Time, precious time.
Time never standing still.
Our life on this earth, measured in priceless moments, increments of ticking time…
Time spent, time passing, timing is everything…
Life passing by, always,…
My time, your time, their time, everyone’s time.
Timing is Everything…
Precious time, irreversible forward motion time.
Me,… always… living in a suspended wait and see mode.
One Day at a Time is all I can do…
Some say “time heals”.
For me, “time steals”…
We can’t stop the march of time, and that which it decimates in it’s path.
Look back
No, don’t look back… too painful.
Look forward
No, don’t look “forward”… to “then”, “when”, or “anything”…
Just Be… in The Now, for now…
Simply Be…

Sometimes I wish I wasn’t so deep. Sometimes I wonder what life would be like, just living on the surface, gliding along, not processing life on the deep level that I do. Are those that glide along “superficially”, Masters at repressing their deep thoughts?  Are they “Numb Experts”, who’ve mastered the ability to suppress, skillfully not “allowing” themselves to process the depth of their life experiences?
Yes, I suppose this is how most of the world survives… Suppress, Repress, Bury, Deny, Numb Yourself… I haven’t known how one just lives on the “surface”… but I am learning… perhaps numb, and superficial is the trick to survival?

I have always been a deep thinker. I came from a family of deep, analytical thinkers. Educated parents that were always thinking, analyzing, processing, posing questions, learning, researching, wondering, discussing…  From the beginning of time, I was always a thinker, processer of everything and everyone. Always wondering who’s thinking what, about what, because of why. Why this, why that. How come? Why did this happen, why did that happen. Why are we who we are, and where we are, doing what we are? Always why and how come on so many levels.

My world of “why’s” has dramatically changed. I used to analyze everything and everyone Psychologically. Now I analyze everything Medically. Why did all this happen. What really is Happening. What really is happening Inside us? Why. How come. What will happen. When will “it” happen. What will the “it” be? What, what, what; Why, why, why…

For me, so much beauty to see, experience. So much potential everywhere, so much to live for… yet so much sabotage, everywhere, on every level.
Right now, as I write, nature around me is still. Wind is calm, Fires are suppressed. Trees are still and quiet. Fall is coming. The leaves on everything are older, more dried out looking. Thankfully the awful fly season with the horses is passing. The Tortoise is considering Hibernation. He has to a degree hibernated, but then it warms up again, and he comes out. The extremes of temperature has arrived. Warm, too warm during the day. Cool, often too cool at night, when I let the little doggies out to pee last time for the night. The Moon has been bright and big. For whatever reason, the Moon gives me hope, energy, calm, peace and serenity. My “flashlight” from the Heavens, connecting me to “beyond”… The nights always give me a sense all will be ok…

Mornings are beautiful. Hope for a new day. Always hope that things will be calm, no drama. Sadly, I want nothing to have to navigate, micromanage, process, do, be in charge of. No challenges please. I don’t want to be “boss-lady”, but I am. Responsible for too many lives. But I am, and will be until they cross the bridge to the “next level”. Me included. I am responsible for me. I’ve realized am my own caregiver now.

Recently 2 of our little chickens passed. I don’t know why. Earlier in the week, we found 1 dead in the Chicken Yard. I felt so sad I didn’t see she was not well. So many not well around here, including me. She passed and I don’t know why. Next her sister passed some time last night or this morning. Our morning “animal caregiver” found her gone. I had put her and her remaining sister in the little chicken house inside the the larger chicken yard the other day, when I saw she was not well. Not sure what is wrong with them. They are little grey Bantams, given to me in 2016 by a neighbor, along with the other 3 larger iridescent black/gold hens. All living creatures can feel illness and pain, but only humans can communicate it in words. We are lucky for that, as domesticated animals rely on their humans for help and relief. So many of our animals are “seniors”. They have a great life, but I dread the responsibility of their old age illnesses, especially the horses, since they are so big…

One day…
these will be the only horses
I will be able to have here
So all is wonderful, yet awful; beautiful, yet tragic; happy yet sad; good yet bad. Weeky I meet new Myeloma patients. Daily I read, hear of treatment successes and failures. Daily is a struggle for so many. I knew this all my life, but I’m realizing now more than ever, that I had a semblance of control in my life as Counselor. I always felt like a healer, like I could impact change, happiness, health, changes in people’s lives. I still do, but I often feel so out of control of everything. But I accept it, I don’t fight it. I get it. Remember my quote: “You can’t control the things you can’t control”… so analyze it, understand it, feel it, deal with it, absorb it, … Then Let It Go… we’re in control of so little… only how we perceive it, process it, and deal with it,…
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New News is Old News, Let the Roller Coaster Continue

10.9.19

Hello October!
So much to say, but I think I’ve said it all previously.
So much emotion, so much change, so much to process and digest.
So much sadness, yet so much to be glad for and grateful for.

Life changes each day, yet some things remain the same…

IGA up again ^
Coming close to 2x the High end of normal :((
M Protein going up too
@  .61
Normal = 0.0
Not happy about it, but not terribly worried…
I’m always amazed though that my organ status labs are good. 
Creatinine good, etc. 
WBC and RBC, etc always Abnormal, but my Dr isn’t too worried. 
My Abnormal is Normal for me LOL
I am a steady (dangerous) roller coaster, which isn’t a “bad thing” …
This past Monday’s Velcade was injection # 52 !
That makes it a year I’ve been on it. Ahhmaaazing!
Cytoxan (Cyclophosphamide) was added a few weeks later, so it’s almost a year I’ve been on this triplet combo, with the 40mg Dexamethasone!
I’m pretty proud of my body’s ability to tolerate this, and that it’s still effective after this amount of time. Hoping to remain on this for much longer, as it’s not exactly fun, but it’s not awful awful, and gives me Quality of Life several days a week.  
My life is taking care of “everything” now. I’m pretty beat up from being in charge of Everything, “micromanaging” Everything and Everyone. Never wanted to be “Boss-Lady”). 
Reflecting back, it’s amazing how “smooth” our life was before both our illnesses. Not to mention how much Jim did before and after my diagnosis. Think about your family, relationships, and distribution of daily life chores and activities. Think about who does what, and how much each does. We were such a great team. We never sat down and actually divided life chores up, things just evolved as they did. Now I literally do “everything”. Yes I have help from amazing caregivers, my adult kids, and other “helpers”, but I do Everything to keep our household and ranch running, us and the animals alive and eating. Everything…  I do Everything!
Look in the hay, feed wagon/wheelbarrow… Yep, that’s my Cytoxan pills and a protein shake. Things are so busy, I brought my pills outside with me to take as I did the horse chores. I had been to my Velcade infusion earlier, then errands, then a quick visit with friends, that had been planned before I knew my Monday caregiver Chris wouldn’t be available that day. Our daughter Alissa came to “dad-sit” while I was gone, and I brought them food home, so I ran outside to do the chores, while she continued to watch him. I laugh and cry and at my life and what has happened to us. I have so much that is wonderful, yet so much loss… 
Yes, I took my Chemo Pills, while feeding the horses! How funny, and ironic is that. 
Until next time…
Hoping all is good with all of you, and if you’re a Myeloma buddy, hoping your treatments are going well.  
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Grateful and Amazed!

9.29.19

How are we at 9.29.19 !
How is it the end of September already!

How can it be that I am only 3 months away from my 10 year life changing Myeloma diagnosis!
I wasn’t supposed to be here still!!
How am I still here and as “Ok” as I am?!
How is it my body is strong enough to battle Myeloma for over 10 years now?
How is it my body can withstand all the powerful chemo chemicals I have pummeled it with?
How is it I am able to handle all this physiologically and psychologically?
How is it I am still here?

Daily, I am amazed, surprised, shocked, I am still HERE…
I am so grateful I am!
I think about so many things that have contributed to my survival. But who knows what has really saved my life…

Chemo for sure!
Genetics on some level?
Previous “good health”?
Healthy lifestyle?
Low stress? Noooo!!! LOL… I have way too much stress!

One thing I know for sure, is that I am very very very careful with not getting sick, and I de-cootie everything around and near me, humans especially! Animals I don’t worry as much about!

How have I survived this long WITH MY BODY TRYING TO KILL ME DAILY!
Cancer, especially Myeloma, is a very powerful mutating enemy. How can I still be as alive as I am, with these killer cells permeating my entire self? Seriously, my entire physiological being!
Would be so fascinating to “really know” what is going on inside me on a bio-chem, cellular level. You know those high tech medical cameras used for surgeries? Or other medical evaluation tools that can look inside us, or those computer reenactments, like on the TV show “Monsters Inside Me”… Wouldn’t it be incredible to be able to see our cells actually mutating and morphing, and actually see how Myeloma grows or invades our healthy cells? Well maybe not everyone would like to see this, but I sure would :))

I know how I’m still alive…
Must be my amazing eating habits I developed AFTER my Myeloma diagnosis… aahhahahaa… I’m on the “See-Food” Diet ;))  I See It, and if it appeals to me I eat it :)) Anything goes on Dex Steroid Day LOL. Crash days… ugh… minimal everything, just trying to hydrate and eat something that won’t make me more nauseated. When people ask me my “secret to my success” , or how I’m not “steroid-bloated-fat”, I reply… “eat anything you want, anything in moderation”. Balance, nothing extreme. Some days Broccoli, some days Ice Cream. But in all seriousness, I do eat healthy, but I don’t do supplements, or trendy diets or current fad ingredients. I don’t do daily meat/fish, yet I do focus on Protein, as I was mostly Vegetarian BEFORE my Myeloma diagnosis. Now I do a lot of “Premier Protein Shakes” with my pills daily. Often eggs, cottage cheese, cheese, yogurt, etc. Lots of watered down pure Cranberry juice, And I do like breads, but I control myself on those, as on steroid days I could eat a whole loaf of warm Cinnamon or Lemon Bread without blinking, but I don’t allow myself… I don’t do a lot of fresh fruits or veggies, as I am very very cautious about bacterial contamination in Fresh things. I mainly do frozen cooked things. With an extra radiation zap! So who knows what is keeping me alive, but I’ll take it…

Chemo Steroid Day a few weeks ago

Did This After my weekly blood tests
Gotta sustain strong blood, right :)) 

And while updating this post, my Labs from earlier today came in, and they just blow me away how “good” they are. Well not GOOD for the HEALTHY person, but “Good” for me! All my organ stats good. WBC always low in the 2’s unfortunately, RBC low, but most all the others Near normal! Creatinine (good) low. And shockingly my Beta2Microglobulin came in… still in the NORMAL range! Wow! I’m so shocked. Guess me and 40mg Dex steroids, Velcade and Cyclophosphamide are a great Myeloma Killing Team! Insane how I do ok on powerful chemicals. I’ve been on this triplet for a Whole Year Now!!! Wow!! And on chemo, immunotherapies for almost 10 years now. Whew!

I have a phone appointment with my Dr on Thursday, and I should have my Important Myeloma Labs back by then. Perhaps I will add them to this post, or wait until my next On The 9’s post. Check back, I may surprise you :))

Tell me your story…
I know there are so many amazing survivors out there, with incredible stories too! I’d love to hear how you are, and what treatment (or not) you’re on :))

Thanks for checking in and caring as you do!

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9.19.19 … 9.9 Years and Counting Towards 10

9.19.19

The moon and the moonlight has been so beautiful these past nights. Actually all summer long, the full moon has been stunning. Glowing, intense, alive. There’s something about summer nights that really affects me. Energizing and Renewing me. The peacefulness of night, the calm of the end of another day. The hint of the night’s cool stillness coming, stars sparkling, twinkling mysteriously in the sky. The crickets clicking, the owls hooting, the night birds chirping, as they settle in the oak trees for the night. Moonbeams shining down on the horses, as they relax from the hot day of waring with biting flies. The moon, a magical flashlight from the heavens, bathing everything in a soft glitter. I love the warmth of summer nights, and soon, the crispness of summer ebbing into fall. I contemplate another day battled, another day survived. Giving me hope, but also giving me sadness.

Every night, after the challenges of the day, I “escort” the 3 little doggies outside for their nightly pee.  They’re so funny how they won’t “do their business” without me actually walking out with them.  But this is how I get to see and feel the magic of night. This is how I get to see and feel the moon, that most miss, by going to bed early. My nightly routine has become me putting Jim to bed, sometimes easy, sometimes an ordeal… more an ordeal when I am not well from weekly chemo side effects. You know that feeling when you Just Want To Be In Bed…. Like Now! And you don’t want to deal with Any Thing Else? That’s my Tuesday and Wednesday nights. The yucky side effects creeping in, dragging me down, sucking me into awfulness. Nausea, achyness, swollen, bloat, that metallic taste in my mouth, headachy. That over-all chemo crash yuckiness, the punched in the gut, I might get “sick” feeling,… but when I’m outside, no matter how awful I feel, the moon and the beauty of the night, somehow replenishes my spirit and gives me hope to move forward to yet another day.

But as serene and energizing and peaceful this can be, it also triggers sadness in me. A sadness some may find selfish, but it’s a profound loss type sadness. Being outside at night, especially on warm, moonlit summer nights, reminds me of days gone by… summer nights full of life, fun, laughter. Summer moonlit horseback rides, summers full of health, happiness, and a sense of carefree that only youth and health allow. I love these moonlit nights, but they make me sad now. I feel so much loss. I am so aware of what I put off, of what I didn’t do, of what I didn’t accomplish… that now, I’ll never be able to do. Don’t get mad at me for saying “never”. I have to accept my fate. Our fate. Our body betrayals. Being outside at night slams my realities in my face. The beauty of the night, of the moon, only intensifies my losses. Yes, I have so much to be grateful for, but summer nights make me so sad, so aware of what can never be again…
I always look up to the heavens, to the night sky, to the moon and stars and cry out, laugh out… WHY? WHY me? WHY us? How come? How did two people wind up so sabotaged? 2 incurable, terminal illnesses at the same time. I know, I know. The world is full of unfair stories. Everyone has challenges. Everyone has mountains to climb. Rare is it the person or family that plans, and those plans, dreams come true. Most stories are of unrealized dreams, of deep sadness and loss. I know, I know, I am so very “lucky” in so many ways… but I hurt deep inside my core. I am sad. I am frustrated. I am devastated for our losses. For what could have been, that cannot be now. Warm summer nights remind me of what was, what could have been. What should have been… 
The doggies circle around me, sensing something. They tentatively lick my leg, or hand. Their tails wag in happiness. They have no idea my sadness. Neither do the horses. They have no idea how I miss those warm summer nights with them, hearing their barefoot hoofs softly, silently impact the cooling dusty earth beneath them. How I miss the breeze whispering through their manes, where I hold the reins. I miss the sweet scent of horse sweat under my saddle. The owls hoot, the night birds quietly chirp, the crickets click, and the horses swish their tails, while scratching and grooming each other, before finding that perfect spot to lay down for the night. They have no idea my sadness. They have no idea how I miss them, even though they are right there. The stars sparkle and wink, the moon shines brighter, lighter…  I pull myself together… I force acceptance on myself. I shake my head, but I can’t shake the “Why”… But I am grateful, no matter how sad I am. I am grateful for the life we still have, and the miracle that I am still here, 9.9 years after my myeloma diagnosis. I am still here. I am still here…

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Crazy Times, Crazy Lab Results, Crazy Stress, Crazy Myeloma, but GOOD News

Hellooooooo 9.9.19

It’s crazy Treatment Day, with a side of  Roids!
Yes, it’s Monday Medical Madness Day with 40mg Dexamethasone Steroids, so I’m flying high and wanting to have fun, in all this crazy illness insanity between me and my hubby!

I ‘ll detail my current Myeloma status labs below, after my Velcade appointment. I do screenshots from the Kaiser website, then download, then upload, and hope to find time with all my hubby’s “demands” LOL!!! It’s like I have a 180 pound Toddler, who wants to follow me everywhere and try to talk about things, but it’s mostly “nonsense” coming out of his mouth :(( But I can read his mind after 39 years, so I figure out what he’s trying to convey. So so tragic. Losing mental functionality is so awful… but all this stupid cancer stuff is too. I just can’t wrap my head around both our terminal, incurable illnesses. But I’m doing better now, not having the intense meltdowns I did a few months ago. Acceptance and moving forward daily, is key to survival…

I used to love to write my blogs late a night, when the house was quiet, and he was asleep in his chair, or in bed, the doggies and all the critters sleeping, while I had the windows open, listening to the summer breeze, crickets and the hoot owls hooting… so peaceful, so serene…

NOW… omg, I NEVER get any time to myself… but that’s another story perhaps for a different post.

So coming later later later....
Screenshots below :))

IGA
M Protein
Beta2 Microglobulin
CBC stats
Organ function stats

And you know what… the results are “shockingly” ok considering all the STRESSSSSSS, super random eating I do, and all the non stop, I never get to rest, never have time to be a “cancer patient” lifestyle I have here. Except on days 2, 3, 4 after Velcade, Dex, Cytoxan, I do feel kinda “gross”, so I do sometimes, just have to sit and feel awful…. BUT NOT TODAY, THANK YOU 40mg DexaMETHasone :))

HERE THEY ARE!!!

M Protein still Abnormal
But down points every month
Was over 1.5 earlier this year
And was 4.5 at Diagnosis, Dec 2009
Right in the middle!
So grateful my Kidney function is still good! 

Can’t believe my IGA is still coming down
even after being on this triplet of
40mg Dex, Velcade, 800mg Cytoxan for almost a year now!
But I’ll take the results, 
even though they are outside of the normal range
Not bad, and hoping it stays in the Normal range,
although at the high end

Thank you for checking in, and caring about my roller coaster life.

Hoping you are doing well if you are a myeloma buddy, and your treatments are effective, healing, and manageable.
If you’re friends, family or happily not touched by all this medical insanity, I hope you are having a wonderful end of your summer, and all is good with you and yours!

https://myelomabeacon.org/news/2019/08/29/tnb-383b-for-multiple-myeloma/
There cur­rently are more than 300 clin­i­cal trials ongoing around the world that are investigating treat­ments for multiple myeloma and looking for patient par­tic­i­pants. Most of these trials are exploring new myeloma ther­a­pies that have not yet been approved for use outside of clin­i­cal trials, and many of these “investigational” ther­a­pies, as they often are called, have the poten­tial to be extremely effective.

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What an Insane Roller Coaster Life This Is

Hello 8.29.19

I cannot believe it’s the end of August, and I almost forgot to post today, which is so unlike me . I also can’t believe how time has slipped by so fast and I never updated my past post… but yet again,, if I had shared everything that has gone on before and since my last post… you’d get why I wasn’t able to finish that post, or even write my update now.

And even trying to do this now, I have a blazing headache, and I’m more exhausted than I’ve been in forever, still slightly nauseated from Monday’s Dex, Velcade, Cytoxan, and I still have to postpone a detailed update because I’m so exhausted from all the fast track insanity that’s gone on in my life in the last month!

Well that quote is not entirely true, lol, but close. Actually, I’m too actively involved in my life, because so much is going on! There are times I just need to stop and “just be a cancer patient”, but my life doesn’t give me that chance!

So here’s the headlines of what I wanted to write about, and may eventually be able to!

1- Earlier this month, I actually took the risk and flew to Hawaii for my son’s surprise Engagement. What convinced me to go, was his heartfelt comment… “Mom, you’re the “only” parent “left”
2- I don’t fly because of my terribly compromised immune system, so this was a HUGE RISK FOR ME
3- This was an Epic Surprise for his girlfriend/fiancee as both her parents have passed…, truly a once in a lifetime event to do this… so I mustered my fears and cautions and went… and so far… knock on wood as they say,… I’m still ok. Don’t feel great, but I don’t think I’m sick. Just exhausted and “chemo crash sick”
4- Prior to that, and I really hadn’t shared with anyone, local, personal, or public… we moved my husband to a Memory Care facility
5- I picked “The Best”, 5 star place for him, we moved him in mid July, and it’s been the craziest adventure ever since
6- I visited him almost every day, except on my worst chemo crash days
7- Visiting him every day sure gave me a deep insight into those suffering, and I mean SUFFERING from Alzheimer’s, Dementia, etc
6- I actually began to feel like a “resident” myself,… super weird, sad, awful, experience
7- Lived with “illness” on so many levels, every day
8- Really felt the difference between what it means to BATTLE Cancer vs SUFFER from a Brain Disease
9- As I’ve mentioned before, as awful as Cancer is, I’ll take it over a Brain Disease
10- Moved my husband OUT of this Memory Care place this past Friday night
11- Hired caregivers at home for 7 days, 12 hour shifts
12- I’m so beat up mentally and physically, I can’t even begin to describe all the detail…
13- But as always, I remain so very grateful on so many levels…
14- Soon I will catch up, and really share all this insanity with all of you… if you want to hear the full stories…

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