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

Friday, February 17, 2017

Stop This, Start That, Moving On

Hello 2.17.17


Ok Pomalyst, you're history for now, as you're affecting my CBCs in a terrible way and you're not really pummeling myeloma anyway. So GoodBye Pom. I'm Neutropenic, as my immune system apparently can't handle your "power". Dr P thinks Pom at 4mg is just too much for my fragile system right now. But I do wonder, being on this triplet cocktail, is it only the Pom doing this? Is Velcade a culprit too? And Dex? Of course they all are! See, this is why I have always preferred singular agents with Dex, so we can see which chemo does what to me, independently and individually. With combo cocktails, who knows which is doing what, right? Myeloma buddies, how do you sort all this out?

My appointment was full of information and lots to talk about and decide.


While looking at my recent labs, surprisingly my IgA and M Protein ACTUALLY CAME DOWN A BIT! But Dr P believes they are still way too high to continue another month status quo with Pomalyst, Velcade and Dex. I agree. Let's slam those myeloma cells, get the numbers down (hopefully), then talk about the next chapter. Ugh, I just don't like medication changes, and always hope beyond hope that I can get longevity mileage out a treatment regimen before tossing it out. But as they say, numbers don't lie, right...

 I think this drop is meaningful

 M Protein down a bit too

Dr P wants to begin Darzalex in a week or so (Feb 28), and she also suggested adding Ninlaro to the mix, with of course Dex. Can you guess my perspective on this... Yep, I said... well No! I prefer to begin a new chemo singularly, as I mentioned above, as I like to know which medication is causing what. And I think it's important to know if each agent is working independently. No I am not a Dr or chemist or medical researcher, just one who knows my body, and I am a "less is more" person, as I have mentioned a zillion times before on this blog :))

I agreed to begin Darzalex with Dex, and hold off on a third med. Let's see how I do on Darza, and if it is the "new wonder drug" many have indicated it is. We'll find out if it indeed does "wonders" for me as it has for others. Then we can add back Velcade, or Pom or Rev or try Ninlaro. Choices, choices, choices. OyVey!

But then, after processing and mulling alllllll this over, I began to think: "if my current cocktail is now making a dent... why CHANGE??" Oh, that's right, my numbers are really high lol, and also one of those beasts is dragging my immune system back to SCT hospitalization status. Ok, Darza here we come Feb 28.


I also consulted with the chemo specialty pharmacists right after my appointment and let them know what's happening (they know me well) and I quickly asked a zillion questions about the scary first infusion. "Should I premed with my regular dose Dex before I come?" "Should I bring my own inhaler for asthmatic reactions?" "Should I premed with anything else?" Well, yes, yes and yes they replied and suggested yes, premed with Dex, premed a few days before with Claritin, Zertex, Allegra, Benadryl, etc. I thought these were awesome suggestions, based upon what I have read the first infusion challenges are! Drug up Julie!



cancer-treatment/chemotherapy/oncolink-rx/daratumumab-darzalex-r

https://www.darzalexhcp.com

https://www.darzalex.com/

But I still wonder... should I stay on the current cocktail I'm on?? It is slightly working. Ugh, I hate you myeloma! Leave me alone and stop consuming my entire being and life!
So that's the plan man, and I get 10 days off Pom and Vel to hopefully boost my system back up. I took 20mg Dex prior to my appointment, as I didn't know I wouldn't be getting my weekly Velcade shot. I took my remaining 20mg Dex today. Yiippee, Dex me up you crazy 40mgs, buzz me up for 48 hours! But the type, length and intensity of my looming crash and side efffects is always a nasty surprise. It's worth it, as I felt pretty good yesterday and today, so who knows. Felt good, that is, for being sooooooo immune compromised. Good enough to get out in this huge rainstorm So Cal is experiencing:

 I'm such a rebellious cancer patient-
Here I am immune compromised and Neutropenic, 
but you can't keep me away from 
Nature and all her beauty and beast!

 Normally, this area is dust bowl dry, 
but at it's peak, this must have been over 7' 
of raging river!

 Logs, telephone poles, coverts, lumber, mini boulders
all went sailing by, like they were feathers!

Beneath this raging water
is normally a 5'+ drop off! 
Then add 2'+ more of water
Very intense!

Those pictures may not look dramatic, but our normally drought dry creek bed was a roaring flash flood river today! WOW! We were all over the news too. I took a lot of pictures and videos, got quite wet and so did my phone, so I had some delay in downloading and retrieving pictures. I will add more tomorrow, so check back.

 Oh yes, the fierce winds remodeled our corral roof! 
More like a sunshade or rain slide now!

So much seems to always happen, when I think so little will LOL. Such is life, and I am so very grateful to have this life, myeloma drama and all, as long as I can breathe deeply this life of surprises, love, beauty, laughter, unexpected excitement and beautiful people and places surrounding me!

And this happened to poor Jim a few days ago!
He slipped and fell on our tile entrance
where I had a towel from all the rain.
And that was before this BIG GIANT of a storm!
He's much better now! 

 
And then the next day this happened!
Our son Scott planned a fun and fancy date for all of us!
See Myeloma, you can't stop me from
living life in the "small" way I do :))


Thank you everyone for checking in and caring about my life, status and story as you do!

Here's an interesting SCT article. I always wondered how they "cleaned" our stemmies prior to the stem cell transplant! clinical-trial-cleaning-up-stem-cells-before-they-are-given-back-during-stem-cell-transplant/ 


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


Tuesday, February 14, 2017

No I Don't Love you Myeloma

2.14.17
Happy Valentine's Day-


C'mon Myeloma, show me a little love... I don't want to be your "sweetheart" host anymore! Can you please Stop loving me and my cells so much, and Start loving the chemo presents I'm sending your way. This is getting so ridiculous. Here's a quick snapshot of my life, as my Nurse and Dr have been calling and emailing me re my most recent labs. Hello Neutropenia.



My Dr suspects Pom is bringing my CBCs down too low, so time to stop Pomalyst. Only had 2 more doses left in the cycle anyway, so it's good bye Pom. More labs tomorrow, Wednesday, then consult appointment on Thursday. As I've mentioned, I haven't ever done a triplet cocktail before, so looks like Velcade, Pom and Dex are just too much for my fragile immune system. 3 is not a charm for me. Ugh, this is getting tiresome and worrisome.

And take a look at this one that just showed up. IgA and M Protein tests still "curing" in the lab.

Beta 2 Microglobulin results

And then...

After the recent storms here, this random and beautiful little surprise came my way just in time for Valentine's Day! The rushing creek sent a huge log past our property, and as the water subsided, it became stuck in the creekbed right behind us. And right along side the log, was this perfectly carved heart shaped rock. When wet, it's a beautiful dark color. As it's dried out, it's more of a dark grey pink granite. What a story it must have to tell. Think of all the years of tumbling and erosion that carved this heart shaped rock "just for me" :)) The big log too, had a heart shaped cut, where the tree had been previously cut. Wow, hearts surround me!


My kids always ask me "what I want"... "what would make me happy"... "what do I need"... "what can they do for me"... well, as they know, I'm a pretty satisfied, fulfilled, content person... so other than chemo working and myeloma back in control, I tell them I would love acres of green pastures to rescue horses and all types of animals, and I'd like one of  these too :)) 



Have a wonderful Valentine's Day with those you love,
and I will post my new plan on 2.17.17
Thank you for following, reading, and caring as you do! 



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




Saturday, February 11, 2017

Thank You Dex Steroids for my weekly Fake Normalcy

2.11.17
Quick Update

It's a Dex Steroid life! But thank goodness for the fake weekly "pick me up"!

Thursday I began to feel better. Whew! Slight fever almost gone, all other symptoms not as intense, "headcold" symptoms subsiding, figured most everything was Velcade, Pomalyst, Dexamethsone related. By Friday, chemo appointment day, feeling almost ok! And of course, felt soooo much better after taking my 20mg Dex prior to my Velcade infusion.


Yes, it's been a month now of Velcade, Pom and Dex.
1st SubQ bruised at injection site, 2nd just a red rash, 3rd, slight red rash, and 4th, red larger rash. So far, me and SubQ get along. Not "enjoyable", but ok. Maybe this means Velcade doesn't have any impact on me :((

Full labs tomorrow, Dr consult appointment on Thurs Feb 16. Will find out if Pom, Velcade, Dex even made a dent this cycle. Hoping for better results than last cycle (see previous post for my numbers). Can't believe this Bi Polar life I lead now... lovely crash on it's way tomorrow and the next day and next day and for Valentine's Day lol!

  Friday Feb 10 :))


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



Tuesday, February 7, 2017

Give Me a Break!

2.7.17
Hello February, I'm not a fan...

Today is probably not a good day to write a blog, as I feel lousy physically and mentally, to be completely honest. I am just so worn down by battling myeloma. So worn down by fighting for my health, and then being "shocked" that "nothing" I do, matters. I am just so frustrated with feeling sick except on steroid days. Then 48 hours later after the fake boost from steroids, I get to crash and feel yucky for several days, then begin the cycle all over again. And today, thanks to my very compromised immune system, I wake up with a sore throat, headache... here we go... so sick of being sick all the time...


I see and understand my blood test results, confer with my Doctors, but I just can't get used to me being a "terminal" "incurable" cancer patient. I can't stand how this myeloma cloud has parked itself over my life for 7 years now. My IgA and M Protein continue to climb, despite hitting myeloma with this new cocktail of Velcade, Pomalyst and Dex steroids. I have another week of Pom 4mg, Velcade shot this Friday, blood tests next Monday, then status appointment on Feb 16. My IgA has increased, but I did notice that my M Protein, went down a speck. Weird.

 IgA up

 M Protein down

Honestly, I'm surprised I don't have better results. Actually "shocked" that my numbers haven't plummeted. See, I'm rather "spoiled" from my treatment success in the past. I responded well and fast after initial diagnosis. Revlimid gave me some rough side effects, but Rev and Dex saved my life in 2010 before my SCT, and then for 18 months of follow up maintenance after my SCT, keeping me in remission. When I came out of remission in 2013, Revlimid and Dex steroids were my best friend again. Lousy side effects, but they kept myeloma "stable" for quite some time. When Rev and Dex lost their power mid 2015, and I invited Kyprolis in to pummel myeloma, and it worked for almost all of 2016, very successfully in the early months. I even came close to my IgA being near the high end of normal after several months of infusions. And for a month, my M Protein did not even show up in the Protein Electrophoresis test. But after several months, sure enough, myeloma mutated again mid 2016, and overwhelmed Kyprolis' power. By late 2016, we moved to Pomalyst, then recently added Velcade.

So after meeting with my Dr on Friday Feb 3, our plan is to stay this course for the standard 21 days of Pomalyst, along with the Velcade shots and 40mg Dex weekly. Then take the standard one week break from Pom which will bring me to the 3rd week of February. Most likely I will then start the Darzalex/Daratumumab.. unless Pom and Velcade have miraculously pummeled myeloma.




I hear good things about Darza, and by next blog post, I'll know whether I'll continue with Vel, Pom, Dex or move on to Darza, Dex?? Thanks for reading and caring as you do, and I hope all is good for you and yours. Happy Valentine's Day next week.

Here's a sweet picture of me and my daughter years ago...
throwback to better times...



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


Friday, January 27, 2017

Cocktail Time!

Hello 1.27.17

How the days fly by! So much has happened since my last posts, regarding my mental and physical status on treatment. I almost don't remember all the details. But I'll try to keep this update short and sweet and to the important points.

After mulling over all my options, reading and reading, consulting and consulting, I decided to go with the Velcade shots... and the Pomalyst 4mg pills... paired with the Dex 40mg steroids. If this delightful cocktail doesn't scare Myeloma off, then Darzalex, here I come, probably along with some of those?
I read a lot online. A lot! Just my academic, inquisitive, counselor, information hungry personality. I read myeloma group posts, research studies, clinical information, pharma information, medical treatment center sites, other patient blogs, myeloma websites like the MMRF, IMF, Myeloma Crowd, Myeloma Beacon, Patient Power, etc. I read read read about myeloma ad nauseam, treatment options, side effects, etc. I realize my status isn't terrific, and my current stats are "scary", but I also realize I am very fortunate. Fortunate not have bone involvement and fortunate still to have decent organ function to handle a variety of treatment options. 7 years has taken it's toll, but it hasn't "taken" me.

With decision made, and new confidence to move forward, off to the chemo lab I went last Thursday, January 19 for my Dr appointment and first Velcade injection. After reviewing my blood stats, my Dr and I felt ok going ahead with the Velcade, Pomalyst, Dex "cocktail", (in spite of some low CBCs). She wanted start the Vel and Pom at the same time though. Velcade shot, right after my appointment, then Pom pills that night. But it would take a day or two to receive the Pomalyst, so she postponed the first Velcade shot one day. Oh well, go the flow Julie. Nothing is predictable about cancer and cancer treatments! Pom was ordered stat, to be received Friday or Saturday. So much for gearing up mentally for my first Velcade shot, only to be sent home to return the next day. See, once I make a decision to do something, I want to turbo charge ahead. No more waiting, wondering and stressing about all the "what if's". But whatever,...seriously not a big deal at this point. Decisions made. One day postponement, so not a big deal. We ordered the Pomalyst to be Fed Ex'd overnight and I was to return on the next day, Friday Jan 20 for the first Velcade shot.

Get in my cells Velcade!

At this point, I'm more than ready to switch treatments. Let's pummel myeloma, triplet cocktail! Honestly, my status worries me, and I welcome this new treatment, hoping it makes a dent. Done deal. No problem. Let's do this. So Friday, I returned to the chemo lab for my first Velcade shot. In a crazy way, it was like a "homecoming", and so great to see all my fave chemo lab nurses, pharmacists, patients and staff. Such wonderful people, saving all our lives!

Shoot me up!

I opted for the belly-fat shot, as unfortunately, Dex Steroids have really changed my body. I have plenty of belly chub now for successful SubQ shots. Ugh I just hate what steroids have done to me. But I can't go back to my "healthy anorexic", low calorie lifestyle now, right. Gotta get all those important food groups in daily, and not obsess over calories. Dex "makes me" want things I never cared much about before, like dark chocolate, salty foods like chips, cheese, etc, and I do more nuts now for protein. All those are rather high in calories, but what the heck, whatever!

 How I feel now lol

Thank you steroids for chubbing me up!

First shot in, stung a bit, but easy-peasy. Makes me laugh at myself for worrying about changing chemos. But, that was just the shot, I "knew" there were reactions to come. I just didn't know what, and when, and I seriously hate the side-effect's unknown time line. But oh well, you know my motto has always been: You Can't Control The Things You Can't Control, so Analyze it, Process it, Deal with it, and Move Forward!
Jim was just really glad 
they didn't mistake him for the patient!

And on the way home...

The conversation of the day was all about "cocktails", so Jim thought no better place to stop on the way home then BevMo! I've only been in BevMo once before, as I've never been a drinker, but now... it's all looking rather interesting. First on my list: Fireball! Bailey's and coffee, Malibu Rum, Sambuca, then... that Mint drink I remember from a long time ago... "Grasshopper"!!! ... ahahaaa... I'll have to ask my oncologist's how "chemo-cocktails" fare with "real cocktails". About time I grow up and start drinking. I'm running out of time... wink, wink!

Then This Happened: while we were driving and running a few errands beyond BevMo, turns out my Nurse was trying "frantically" to get a hold of me, and tell me NOT to begin the Pomalyst, as my labs from earlier in the day showed my CBCs were too low to add the Pom in with the Velcade. Seriously!!! I'm all geared up for this Dex, Vel, Pom cocktail, and the brakes are abruptly put on, and we skid to a cocktail halt. I was glad though, that I at least had Velcade in my belly, with Dex down the hatch earlier, as I seriously now get concerned when on any treatment break... even for a week.

My Pomalyst 4mg did arrive on Saturday. I picked it up from the local Fed Ex office, tucked it securely in my medicine drawer for later use, shook my head, and tried to process this crazy myeloma ride with "cocktail time" cancelled. At least I was strong enough for a singular chemo option, paired with Dex. Labs in a few days, they said, to update my status. Here's how my first lovely Velcade shot site looks now:


I did have a red rash there too, for several days after the shot, but the rash has subsided (with some good ole Benadryl and Cortisone cream). Just the bruise is there now. Not sure why it bruised? It's only a little bothersome, and so far, so good, no dramatic side effects... well a few... I won't give you the GI details, but if you've been following my blog for a while, or know me personally.... here's the hint... I have the OPPOSITE GI problem now, then I did with Revlimid. Maybe that's due to how cold it's been, and I'm not drinking gallons of water daily, or maybe it's due to the myeloma (itself) side effects? 

So I did blood tests again on Tuesday, and my Dr contacted me and said my CBCs went up just a little, just enough, so now ok to add the Pomalyst 4mg in. It's official, I've joined the myeloma 3's a charm, cocktail club!
And that's my chemo cocktail story.

Today:
Status labs this morning. Dex down the hatch. Velcade shot in the afternoon. Pom at night.
I'm tired, fatigued, weak, headaches, bit of Neuropathy, always thirsty and dehydrated and have had a "breathless" issue, mainly after eating. Hmm... I remember that from back in 2009.... will have to mention that to my Dr and Nurses. Most likely due low CBCs. Anemia? Oh myeloma, you are the "gift that Never stops giving". But still, I have many more positive "gifts" then negative...

Rained and stormed a lot here. 
Blew some panels around, but all's good and nailed down now.

Thanks for checking in and following my story. Please let me know how you are, what treatments you're on, and MM patient or not, how your 2017 is going so far :)


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


Tuesday, January 17, 2017

New Treatment Plan and Remodeled Dreams

Hello 1.17.17

We all have dreams. Dreams and Goals. Dreams, Plans, Aspirations. Those dreams you've always dreamed about. Big or small. Earth-shattering or minuscule. Tucked away in that quiet sweet-spot of our minds and spirits.

No matter your "status" in life, everyone has "dreams". All those "things and ideas" that inspire us, we wish for, plan for, and work so very hard for, during our lives. For some, those dreams came true sooner than later. For some, those dreams, barely realized ever. For others, dreams are reinvented, redefined, revamped, transformed and modified. Our dreams evolve due to life's complex speed bumps in our lives, whether major or minor, but always interrupting our lives.

As I process my ongoing, never ending cancer status, always mulling over the Why, How Come, What's Next, the complexity of "choices" within really having "no choice", I never forget my life's goals and dreams. My dreams are not "big". They are not impressive. They don't involve huge worldly accomplishments or huge worldly travel experiences. They are small dreams, actually almost "childlike". Perhaps because psychologically I "grew up fast", and had to process life deeply early on, unrelated to cancer. I was often referred to as an "old soul". My goals, different from my dreams, were to always be kind, insightful, sensitive, caring, deeply interested in others, their lives, their goals and dreams..., hence I became a Counselor. I wanted to make a difference in the world in a small way, with humans and animals. And I did. And I feel good about all the "goals" I've accomplished.


But then there are my dreams. My "future", which I never thought would be stolen from me mid-life, has been stolen . I never thought I would lose my independence, my health and my ability to really choose the direction of my life. I was always spontaneous, but always a careful planner. Work hard and be directed while "young", reap rewards of fun times later. But now, due to how MY body has reacted to MYeloma, how MY body has reacted to treatments, and how MY body has limited Me, most of my dreams have been ambushed, derailed, cancelled and are not possible any more. Literally not physically possible any more. I'm not angry, I'm not whining, I'm not depressed, I am sharing my actual reality. I just cannot do what I had planned to do in the 2nd half of my life. It's a fact. I've reconciled it. I haven't truly accepted it, but I know (for physical safety reasons) I cannot engage in most of the dreams I had dreamed of.


So with encouragement from our kids, we're reformatting, readjusting, rethinking, remodeling, revising, adapting dreams. I'm accommodating, but not accepting cancer. I'm adjusting and amending the journey. Creating new options that include what I cannot change about what myeloma has done to me and my life.


One of those dreams of mine is a Red Barn. Yes, a simple Red Barn. There's just something warm and inviting about a Red Barn. A Red Barn stocked with bales of aromatic alfalfa and grass hay. That scent. So real, so honest, enveloping your being with a sense everything will be ok. You just breathe in peacefulness. If you love nature, animals, horses, wildlife and the sweet scents of the outdoors, you know what I mean. There's just something about the "ambiance" of a Red Barn. That rustic, vintage aura of a slower, real life. If you are not a farm, or ranch person, then perhaps you know this feeling when you visit a beautiful botanical garden, a country winery, a colorfully landscaped museum... it nourishes your being, your soul. You take deep refreshing breaths, and feel alive and real. Life makes sense.


Knowing the myeloma road I'm on, knowing my reality, knowing 7 years with myeloma is no small feat, not knowing what's next or how much time I may have left... we're remodeling our original, 39 year old white barn. It's a make over, not a new barn. Replacing the white panels for red panels. Redoing the roof. Red Barn walls, inside and out, white trim. Big barn doors, inviting you in. It's just a simple barn. Horses have never lived in our barn, nor will they ever. Barn stalls are "horse prisons" to me (unless of course, they have open access to a large outdoor corral!). My daily view will be a Red Barn. A simple Red Barn that invites you to sit and bask in the sun. Walk through it, and breathe in the sweet aroma of baled hay. Walk through it and hear horses nickering, birds chirping, dogs barking, flies buzzing. Walk in, and feel real. Real life.

Not done, a way to go, but sure a fun process!
Our son is our "idea man" and "construction coordinator".
So awesome to have his insight, creativity and love.

And so, I've been all too consumed in thinking about my new, upcoming treatment plans. I posted my options in my Friday the 13th post, and I really do appreciate all your spot on feedback, reality checks and thoughtful comments! I've also posed my questions in online MM groups, and really appreciate all the honest and encouraging feedback there too. So what have I decided? One more round of Pomalyst at full strength 4mg, adding Velcade, continuing with Dex steroids. I have another Dr appointment this Thursday, and first Velcade shot/infusion thereafter. Yes I'm scared, yes I'm worried, yes I hate new and different side effects, but reality is myeloma currently is "winning", and I have to brave up, and take this treatment process more seriously. Everyone is encouraging me to start the Darzalex, stop worrying so much about the infusion reactions, and stop playing around with my "aggressive" type of myeloma. Ok, ok... I'm working on it. I will, start next month.



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



Friday, January 13, 2017

Decisions, Decisions... Treatment Changes Scare Me!

Friday 1.13.17

Yep, it's Friday the 13th... perfect day to already break my "on the 7's" theme posting, as I have news, labs, numbers, results and big decisions to make as a result of my oncology appointment yesterday 1.12.17


Yesterday, Thursday January 12, 2017 was really my Friday the 13th! It was pouring rain here in CA, when I left for my afternoon Oncology appointment. Driving in the rain doesn't bother me a bit, I rather enjoy it. It's all the other crazies out there! That scares me. I'm cautious and smart, and drive an older model SUV, so I feel quite safe... UNTIL MY DRIVER'S SIDE WINDSHIELD-WIPER DECIDED TO BREAK, SNAP BACKWARDS INTO THE GLASS WINDSHIELD, HITTING METAL ON GLASS, FLOPPING AROUND, AS THE RAIN POURED CATS, DOGS AND HUGE RAIN DROPS! Scared me so much! The wiper whipped around, metal hitting the glass windshield, until I got my senses about me to turn the wipers off! I was driving over an overpass and couldn't pull over, and by the time I could, traffic was moving so fast and recklessly, I didn't want to take the chance pulling over, and not being able to pull back into traffic. Besides, what the heck would I do anyway. The wiper was broken, backwards, metal on glass, pouring rain, and I had an oncology appointment to get to. So I continued to drive in the blinding rain, without wipers. Scared the shizzz out of me, but I stayed in the slow lane, shaking my head, and thinking, what the heck life... what the heck are you doing to me! I'm done with challenges, tests and "excitement". SERIOUSLY DONE! And this was before my appointment and the unsettling news to come...

This could have been my windshield, 
had I not turned the wipers off when I did!

So I made it to my appointment alive, and my Dr brings up my labs with a worried look, and let's me know she is very concerned with the upward climb of my numbers. Bottom line: Myeloma is winning over Pomalyst. Pom is barely making a cellular dent... Time to change the treatment plan AGAIN. Ugh!! Nooooooo!!! C'mon Pom, please work! We got off to a rocky start in Nov and Dec with all my crazy allergies, head cold illness and crazy pinched nerves back issue. Maybe one more month will make a difference I plead. I am less and less brave about this cancer thing every year, every change in treatment. I am so fearful of new and awful side effects. I've got the crash cycle down, know fatigue all too well, GI stuff in "control", neuropathy not too bad, etc... I'm just starting to be friends with Pom... perhaps that's the problem: If chemo DOESN'T cause dramatic side effects, maybe it's not working?... see Pom and Dex steroids are giving me the opposite problem Revlimid did... going from unpredictable volcanic diarrhea with Rev, to both diarrhea and being corked up with Kyprolis, and now Pom and Dex fully cork me up. Maybe it's all the myeloma cells corking me up? LOL, sorry to the non-patients reading this. Us cancer patients talk about our GI issues and body side effects like "normal" people talk about their social plans!  

My Dr wants to stop Pom and start Darzalex and Velcade, along with good ol Dex steroids. As in start next week! Darzalex SCARES ME! I have read a lot about it, from Research sites to Pharma sites to Patient sites. The initial infusion of Darzalex SCARES me! Google it, read patient blogs and infusion insanity! (Besides, isn't it targeted to IgG myeloma, and I'm IgA?) Remember I skipped right past Velcade for Kyprolis, Nov 2015, because of all the reports of terrible Neuropathy with Velcade. Ugh! I hate myeloma, and hate that I am controlled by myeloma and what it is doing to me and that I have to take meds or die!

So after discussing my labs, and various options for treatment and meds, I gave in, and said "yes, ok Dr, you're the expert, you know best, I will try this new regimen..."  I drove home teary, sad, mad, frustrated, and incredulous, that this is what my "life" has come to. I'm tired and worn down from 7 years of this battle. I want to feel good. I want to play. I want to be "normal". I want to make "superficial" plans like everyone else. I want to work, play, go places, other than appointments related to myeloma. I just want to live an uncomplicated life... 

Fortunately, it wasn't raining much driving home. Just misty, so I did ok without functional windshield wipers. Broken wipers. So symbolic. Rain streaking across my windshield. Tears slipping from my eyes. A broken, upside down wiper. Me, broken, my life upside down... 

 Ok, so Beta2 went down 10 points ^

 These don't look too awful ^

Ok, ok, yes... my IgA went up 10 points ^

Ugh, M Protein up too ^

My lovely compromised immune system


And yes, this one says it all: 
ABNORMAL! :))

I was grateful to return home safely, but not a happy camper psychologically. Still "shell shocked" Pomalyst wasn't killing off myeloma cells as I had "expected", stunned that my labs weren't better with plummeting myeloma stats, and overall just sad about the status of my life. So what did I do to "rebel" and feel better? Put on a coat, rubber boots and went out to my "happy place", the horse arena, and scooped the horse poop in the pouring rain. Quite fitting, don't you think? Shoveling poop, in so many ways, in my life...

 Pouring rain here.
These pictures don't tell the downpour story!

 Happy horsies, clueless to my situation

 And it cleared a bit,
then poured some more

I sloshed around and processed my situation
Poop here, poop there, poop everywhere in my life


Here's what I wrote to my Dr late last night:

Hi Dr P,
I've been doing a lot of thinking and reading, and I am "scared" to start Darzalex and Velcade together. I was looking over my recent myeloma stats and saw my Beta2 went down a whole point, the Beta Globulin went down a bit too. The IgA only went up 10 points and the M Protein .27
I do realize my upward trend, but if you are ok with it, I would like to consider the following for this next treatment cycle:
1- continue with Dex and Pomalyst for one more month, but at full dose, 4mg
2- or try Dex and Velcade
3- or try Dex, Pom and Velcade together
4- or try Darzalex singularly

Last option, I don't think I am ready for is the combo of Darzalex and Velcade, as side effects from 2 new meds may be overwhelming for me.
So sorry to be such a pain. Please let me know your thoughts. 

She's gone for the weekend, as her RN called me back... so we'll see what she says early next week. I was also informed that I was already scheduled for the chemo lab for Thursday, Jan 19... ummm NO!!!

Ok Myeloma Patients Out There... Help Me Out... Your Opinions Please!


Today, Friday the 13th-
Pondering: clouds, thoughts, choices,
fears, frustrations, sadness, anger
But it's hard to stay upset, when so much beauty
surrounds me...





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?

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.