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

Sunday, February 18, 2018

Myeloma on the Move

Hello 2.18.18

Did you see my surprise, not on the 8's previous post :)) Due to "popular demand" lol, I posted my update on the 14th for you. I had my Dr appointment and Darazlex on Monday Feb 12, and learned "myeloma's on the move" again. Not huge, but a warning my warrior cells better get it together. As you can see (or saw), IgA is up about 200 points.

My IgA type of myeloma has always "roller-coastered", and often quickly escalates super high, but also responds to treatment quickly too. Pretty shocking that my IgA was over 4100 a year ago, so my current 715 is just a "head's up" that perhaps monthly Darzalex is "too weak" a treatment for me, and hopefully I can go back to 2x per month. I also committed to taking my weekly 20mg steroids consistently, as sometimes I "cheat", and take less. I've done this previously, as I had hoped that less Dexamethasone would suffice in taming myeloma, since there are so many side effects from continuous use of steroids. I've been on Dex steroids continually since mid 2013 now. 4.5 years!

But so far my body organ and blood chemistry labs are good, and I'm careful to watch my carbs and sugars, as I certainly don't want to become Diabetic from all the steroids :(( The other good news from my recent Labs, is that my M Protein is not measurable.

IgA up from 519

Looks ok. I'd rather be low, than high

Thrilled to be holding steady on the "No" M Protein!

And finally, doing several days of Zarxio (Neupogen), took care of my Neutropenia quickly, and I went from a low of .8, to in the normal range of 2.97 . I am still VERY cautious, and live as if I'm Neutropenic all the time. Just too many cooties out there for this immune compromised cancer patient! 

Our hearts are still so sad about losing our adorable white Lab doggie Paws (see previous posts), and I've been looking continually online for a rescue Labrador that needs a home, but sadly we haven't found a match yet. There's also a part of me, with my and my hubby Jim's continuing health issues, I'm thinking that "less is more" at this time of our lives, and maybe we'll just stick with the 3 girls. But then again, I want to rescue another life, that needs a home, as we have always done...

3 happy girl doggies

Abbie misses Pawsy, but she's enjoying being inside

2013, after a doggie event, 
and just before, or as myeloma was roaring back

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

Tuesday, February 13, 2018

Blood Test Results and Chemo Lab Aventures

Hello 2.13.18

I'm sneaking in an additional post, with my updated Labs. Thanks for caring and asking to hear my results before my next predictable, "on the 8's post :))

Well as you saw from my previous 2.8.18 post, my WBCs were quite low at 1.9 (normal = 4 - 11), and my ANC at .8 (normal = 1.8 - 7.7), which means, thanks to Pomalyst's power, I'm Neutropenic again. I'm quite used to this now, as Pom seems to do this to me almost monthly now. Early last year, we lowered the dosage to alternating 3mg and 2mg for the 21 day cycle. 4mg is the highest Pom dose. As I write this, I smile at how much a cancer patient gets used to, and adapts to. In the "normal, healthy" world all this is would be so shocking and debilitating. But I've learned to take it all in stride, and know "I can't control the things I can't control"... so I move forward and deal with it the best I can. I don't think I'm shocked by much anymore, regarding my situation. I read so much about myeloma, and understand what myeloma treatments can do to us. I hear so many stories about what other patients are dealing with, and what their complications are, that I am "grateful" for my type of challenges. Sounds crazy, but I'll take the many complications from my extreme compromised immune system over the horrendous bone issues so many myeloma patients suffer from. It's all in what we individually get used to, and learn to tolerate.

I used to fear self administering Neupogen Zarxio injections. I just didn't think I could do it. I wrote a whiny post about it last spring. But I've toughened up, and now it's no big deal, and I actually look forward to these amazing immune system, white blood cell (WBC) boosting shoots for a few days! They're like magic, and I feel better, stronger. The debilitating fatigue cloud is lifted. If just for a while though, as I would have to do these regularly to maintain WBC "euphoria" lol.

Feb 6
0.80 x1000/mcL         
Normal Range = 1.80 - 7.70 x1000/mcL

Feb 9
2.97 x1000/mcL
Normal Range = 1.80 - 7.70 x1000/mc
After 3 days of Zarxio injections, just look at this boost! 

With the Winter Olympics going on, I can't even imagine how high and normal the athletes CBC's and other body functions are, to compete at the extreme skill level they do! It's truly amazing what a fit, healthy body can accomplish. I used to ski with my high school ski team, and I later shared my love for winter sports with my kids. They grew up skiing, and then snowboarding, as we would take regular family trips to the snow. Oh, how I miss this. Can't remember the last time I skied, and watching the Olympics now, sure makes me miss being able to do that. Ok, put that on the Bucket List!

There's dysfunction with the mobile version of Kaiser's lab results right now, so I wasn't able to capture a cool screen shot, as I previously have. So here's the copy/paste of my current IgA status, which shows Myeloma's on the move in the wrong direction again, trying to dominate this wonderful triplet cocktail of Darzalex, Pomalyst, Dex steroids I've been tolerating for almost an entire year now! Wow, it will be a exactly year on my next "8" post, 2.28.18, that I began Darzalex.

70 - 400 MG/DL
700 - 1,600 MG/DL

So as you can see, my IgA is almost 2 times the high end of normal. (I cut the IgM stats out, as they corrupted the chart layout.) I'm "sad" myeloma's on the upward climb again, but I'm certainly not "panicked", as I've been down, rather "up", this road so many times, and have seen my IgA as high as 5760 at diagnosis, Dec 30, 2009, and then in the 4000's almost every year since coming out of remission in 2013. I've just gotten used to so much in the 8 years living with, battling myeloma. Here's where I was just before beginning Darzalex and Pomalyst. Just happened to see this recently, in my old photos:

I confessed to my Dr yesterday that I did reduce my weekly Dex steroids from the recommended 20mg per week to 12mg per week twice this past cycle. I'm concerned that I've been on a steady diet of Dexamethasone since mid 2013 now! I worry about all the side effects, and was hoping my IgA would hold steady on a lower Dex dose, but I'm guessing not :((  So this month I will be consistent and do the 20mg weekly, no matter what "quality of life" events I want to partake in...  Crazy to live life this way, always planning around when I'll feel lousy, always having to allow for the medication crash.

Speaking of SIDE EFFECTS, yesterday was a particularly hilarious day in the chemo lab for me. Hilarious and chemo lab are an ironic paradox in the same sentence, but here's what happened to me. I took my 20mg Dex steroids around 8am for my scheduled 10:30am Darzalex infusion. For some reason, they hit particularly :silly and fun", "warm and happy", just as I arrived to the chemo lab. I know I have written about this previously, but I just can't get over how unpredictable my body's reactions are to these meds I must take to stay alive. Sometimes Dex hits as a less dramatic overall boost, sometimes with a manic bang!

Being so close to Valentine's Day, I brought bags of Dove chocolate for all the Oncology staff (my Dr, Nurses, chemo Pharmacists). I do thank you treats often for this wonderful team, as I want them to constantly know HOW MUCH I APPRECIATE THEIR DEDICATED CARE and PROFESSIONALISM!
I'm naturally an animated, effervescent, communicative person, but Dex just revves that up to an exaggerated level. I do (try) to keep myself in check. As you can imagine, the chemo lab isn't the "happiest place" for most people, and there's no knowing the psychological place most patients are in, when I come bouncing in, silly and animated. I really do make the effort to de-energize myself, and be courteous and "appropriate". I have had many patients ask what meds I'm on, that make me feel so ok, as they want this "happy blast of energy" too.

Mondays, sweet Karen the Volunteer is there, and we've had a lovely friendship for years now. Tragically she lost her husband to stupid cancer a few years ago, and is so gracious to give her heart and time to the patients and staff in the chemo lab. We always have stories to share, and other "regular patients" often join our conversations. 

After I settled in, Karen brought over a lovely patient (named Karen also), to visit with us, that I had met several times before, so our little area quickly became a chatty party. In the bed next to me, was a younger patient, who soon joined in on the conversations. I mention all this, as here we are, all hooked up to IV's, serious chemo meds coursing through our veins, but it felt like gals just having fun conversations in an "ordinary" circumstance. The irony is ridiculous. Chem lab, fun? What an oxymoron for sure! Soon my nurse comes to begin the "premed" process for me, and rather than a drip bag of Benadryl, I'm prescribed the "syringe push" of  50mg of Benadryl. Since Darzalex is a long, slow infusion process, the point is get the premeds going, so we can get thru Darzalex before closing time.

Soon, actually rather quickly, the Benadryl begins to affect me. Putting me into mental sloooooooow mooooo! I feel the Benadryl taking over my being...  down I goooo... my functionality slows, but my thoughts still race. My brain and mouth no longer connect effectively lol! I have a difficult time expressing my thoughts. It's really quite hilarious. I mention it to the ladies, laughing about my disconnectedness. I'm slurring words, trying to finish whatever story I was attempting to tell, but it's all muddled, and confused. The conversation became absurd, as I tied unconnected stories together. What a mess. We all laugh. I try to carry on, but finally, I laugh and tell them, I'm too fuzzy and muddled. Everyone says just give in and sleep, but I've never been one to sleep in a public "fish bowl" like that. But I do eventually shut up, and laugh at my silliness.

I'm sure these sensations could be very disconcerting to many, but I am curious and fascinated with everything I go through. Never before myeloma, did I have medical issues, or take strong meds, so I continue to find the personal "entertainment value" of these wacky experiences so very interesting. But trust me, if I was nauseated or couldn't breathe, or in unbearable pain, or was having serious reactions, I would not be finding any of this humorous! I'm familiar enough with this particular chemo process now to know what's coming my way, so I can be humored how the HIGH of steroids collides with the DOWN of Benadryl. I can only imagine what is going on inside me, bio-chemically. Boom, poof, crash, bang... I picture chemical boxing gloves inside of me lol. One side fighting to be hyper and manic, the other side fighting to chill and relax. It's really quite an interesting experience to go from one extreme to the next, all knowing it's part of the protocol to pummel cancer cells.

And that was my day. Pain free. Hyper-manic. Dulled and calm. Kooky and silly. Sleepy, but awake. Social, but exhausted. Accepting, yet incredulous. Observing my life and others. Always wondering why, how come. How did all this happen to me and the others. It's about 4:30 by now. My Darzalez infusion is finally done. I like to complete the entire hydration bag after the Darzalex, to cleanse my veins, then time to remove my hand IV. Yay, I'm free again. I thank my kind nurse for caring for me all day. I'm readying to leave when I see, our male nurse, giving a young woman a "tour" of the chemo lab. I'm thinking she's probably getting a tour with an "older" family member. Then she looks over at me, and questioningly calls my name. I look up surprised. She looks familiar, but I can't place her immediately. It's out of context. Perhaps one of my past students, here with a parent? I say hello, and "sorry, who are you?", feeling bad I had to ask. I blame it on all the meds, fogging my brain.

Omg! I suddenly connect who she is. One of my daughter's good friends since kindergarten! We both quietly "scream" in excitement to see each other. She comes over to my bed to chat. I ask her who she's here with for the tour. She tells me it's for her... I'm incredulous. I'm shocked. We exchange WTF exclamations over and over. She can't believe her diagnosis either. Happened so fast, just in the last two weeks. We're in our own world, as the chemo lab is closing. I suggest we go out to the waiting area to talk. I want to hear her whole story. My heart is breaking for her. She's too young, too beautiful, too happy. Just recently married, I think 2 years ago. Life is happy for her. Purring along. Now this. I'm shocked. We allow ourselves to cuss, WTF, how come, why, makes no sense. We want to cry, but we're also laughing, as we're so happy to see each other. So much to share, so much to catch up on. It's now after 5pm. Most of the nursing staff has left, but as a few walk out, they see us, and I briefly share her story, and our 25 year history. Incredible. Crazy. So not fair! How does cancer happen? My heart aches for her, and how her life has changed in an instant. A biopsy. A phone call. Life will never be what is was before. We discuss this. But, she'll be ok. She's young and strong. Positive and optimistic. She has the great care I do with Kaiser. And has a great support network. Me included. But still... WTF? Just another bipolar day in the chemo lab.

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

Thursday, February 8, 2018

Can We Just Get a Break...

Hello 2.8.18

Just when I had thought life would hum along for me, we're tossed a curve with our beautiful, beloved Labrador doggie Paws, being diagnosed with Liver Cancer. Yes Cancer. Cancer. Cancer. Cancer in my life. Again.

This past year, this beautiful boy was a little less active, but still his happy, loving, playful, goofy self. Nothing raised a red flag at all. Until January. Early last month, I noticed he looked a little swollen in his abdomen, girth area. I thought my hubby Jim was feeding him more, as this has been a "war" between us all our lives. Jim loves to show "love" to all our critters with treats and extra kibble. But when we would pet Pawsy, we noticed his collar was loose, and in certain areas he was a bit boney, so this didn't make sense with his swollen belly. I scheduled our wonderful horse (and all animal) Veterinarian for a "ranch call" and he quickly knew "something" was up. Next day we went to his clinic for xray scans. Sure enough, Dr John saw lots of fluid in Paws' abdomen, but couldn't exactly identify if the fluid was coming from his heart, lungs, or other organs. But he knew there was something serious going on. He scheduled a Veterinarian Ultrasound Specialist to come and do additional detailed scans, to pinpoint where the fluid was emanating. (Sounds like our myeloma lives, right).

2013, just months before myeloma came roaring back for me
Paws was put on a diuretic and prednisone, to hopefully help drain the fluid and lessen the swelling. Yes, pills, scans, side effects, wondering what's going on internally... all medical trigger points for me. Thinking how this could be, will be, my future. Thinking about how myeloma eventually affects all our organs, and perhaps what I am witnessing in my beloved dog, will one day be my journey too... Every medical event I have with my animals pushes lots of buttons for me, as I can't help but project the similarities coming my way, one day.

Days later the ultrasound specialist does detailed scans of Paws, and determines that his liver is terribly diseased and looks like cauliflower, not smooth, as a healthy liver should be. Both doctors consult and agree, "cirrhosis", or cancer of the liver. Noooooo... We're all so devastated and shocked. Pawsy is only 8 and half. How can this be! He's had the best life here. Healthy environment, good food, fresh water, unlimited exercise, and overflowing love. But I had learned that his bio-brother Ranger (below) passed last year from another type of abdominal disease, spleen related, I think cancer too. My friend Terri and I discussed that there must be a genetic link to their much too early passing. We're both so devastated as these doggies were so special. So loving. So kind. So happy. So irreplaceable...

Paws and his doggie family July 2016
Sadly Paws went down hill rather quickly. We are still in shock. For most of January he was ok, but slowing down. He would take his pills in treats eagerly up until last week. Dr John came on Friday to drain fluid from his abdomen, and we scheduled another visit for Monday, to do the same. But over the weekend, he lost interest in food. He moved much slower. I knew his body was failing him, and the disease had taken over. Nothing us humans could do at this point, except give him love and comfort. Again, all this triggers so many thoughts and emotions in me. What will my final months, weeks, days be like. What choices will I have or not? I'm not afraid of death, but I do have fears about "how I will die"... We did all we could to make him happy and comfortable. Last Sunday was a beautiful day. We spent the day just "being" with him. Sunday night he had difficulty coming up to the house from the yard. I put a soft mat out for him on the grass, just in case he couldn't make it up to the house for the night.

Jim with Nala, Hanna, Paws- on his last day
Monday we awoke to him with labored breathing, and we knew his time was near. Again, we were shocked how quickly his body failed him. I called Dr John's office, and he was able to change his schedule to come quickly. Our son's girlfriend Ashley was with Paws when I went to open the gate for Dr John. Paws took his last breaths then, with Ashley, and when Dr John and I got over to where they were, Paws took his very last breath. He was such an amazing dog. So loving, loyal, happy, silly, playful, joyful, and had never had a bad day in his life, until this. Our hearts are broken, but as we always do, when one passes on, it makes a space for another rescue. Plus we can't let Abbie be without a big dog partner... there's a lucky dog out there now, that will be coming to animal paradise soon... Paws will send him soon...

Abbie and Paws, 2015
Bye Pawsy, we love you so much!

So Tuesday was blood tests. My last labs were the end of December 2017, due to being sick with the flu or awful headcold in early January. It's been longer than usual not knowing my status, and I am very curious what my IgA, M Protein, SEP, etc will show. My CBCs do show online, and here's my status from that perspective. And..... yes.... I'm Neutropenic again, as my ANC is .8, so I began several days of Zarxio-Neupogen injections the other day. I don't feel particularly lousy from my 1.9 WBC, and .8 ANC, but so much is always going on in our lives, that I barely have a chance to feel lousy, unless I'm really really sick, like end of last year, and early January. This Neutropenic crash is from my 21 days of Pomalyst, which I completed on Sunday. So this does make sense, and has happened to me quite a few times since I began the triplet cocktail of Darzalex, Pomalyst, Dex almost exactly a year ago. Nice to be able to connect the dots with side effects.

Just look where I was 1 year ago! 
Pretty scary! 

2.1 for my Beta2 Microglobulin is above the normal range, but it's holding steady from last month. Steady and Stable is ok with me. When I was diagnosed end of Dec 2009, this level was 4.6, so I'll take the 2.1 and wait to see what my IgA and M Protein is. I'm thinking of calling my oncology office tomorrow and see if my results are in, and they can release them. My next Dr appointment and Darzalex appointment is this coming Monday, Feb 12, so I will for sure know my status then. Did you want to wait for my next post on Feb 18 for the results, or should I post again before then? :)) 

Hard to believe  this February 28 is my 1 year anniversary of beginning Darzalex. I'm thrilled and surprised that this triplet of Darza, Pom, Dex is still as effective one year later. I sure hope it will continue to be effective for a long long time, as the side effects are "tolerable", and I can more or less predict them now, and plan accordingly. When myeloma gets stronger, I hope we can go back to additional Darza infusions per month, rather than changing to another treatment. Ugh, I just "hate" getting used to a new treatment, and wondering what new side effects will attack me. The longer I battle myeloma, the less brave I am, and less bold I am with treatment changes. But I accept my situation, I accept the incurable nature of myeloma, and I will do what I have to do to stay alive. 

Hope all well with all of you, and you and your loved ones are avoiding this awful flu season. May love and happiness fill your lives. 

2013, returning from a doggie hike... not long before myeloma surged back

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

Sunday, January 28, 2018

Married to Myeloma... How I Survive

Hello 1.28.18

Can you believe it's the end of January 2018 already! We all remember our parents saying "how time flies" the older we get. No truer words were spoken. Minutes blend to hours, hours to days, days to weeks, weeks to months, months to years... and here I am 8 years later, still so fascinated that I am here. I apologize if you are rolling your eyes over my continual reflections of my survival, but the longer I "last", the more surprised and awed I am that "I am". How can I not be surprised.

I am fascinated with myeloma and what it has done to me and all the other warriors I know, meet, and read about. I am stunned the infinite mutations myeloma makes. How differently it affects all of us. There are so many survivors, with double digit longevity now. Social media has connected us, and I am so intrigued by everyone's different story of diagnosis, treatment, medication combinations, lifestyles, stamina, and the physiological impact of myeloma, as it morphs in such a cruel variety of ways for so many. All my life I have been an analyzer and information seeker. This has only heightened and expanded since my Dec 2009 myeloma diagnosis.

So what's up with me this January 28, 2018, beyond contemplating my cancer status 24 7...
I am finally well.
Well from the horrendous head colds and flu that attacked me in Nov, Dec, early Jan. I am so grateful to be here, and in the "relatively good" health, I am. As I get further away from those awful weeks of fever, muscular aches and pains as a result of coughing so continually and deeply, when I thought I would never have a "normal body" back again, I am focused on what 2018 will bring.

If you are a myeloma patient, or someone that deals with a chronic, incurable medical situation in your life, then you know, life is not predictable, and never will be again. We never know what the day or night will bring. We never know what painful tweak might happen at any moment, due to the nature of myeloma in the blood plasma, in the bone marrow. We never know, day to day, treatment to treatment, how myeloma will morph and evolve, changing our life in an instant. Yes, I think about this all the time. I truly live "one day at a time" now, as I am a realist by nature. I know I am not in control of "where" this journey is taking me. I am only in control of how I react to what comes my way. And unfortunately, it consumes my thoughts. But how can it not...

Life is rarely what "we want it to be", or turns out to be what we "expect", as our life is not entirely in our control. But our decisions and reactions to what happens, are. Our body's biology and chemistry, and our diagnosis "owns" us physiologically. Now I know many of you will object to me saying that and living this way, but honestly, how can a chronic incurable illness not "own" us on so many levels? We cannot "return" our diagnosis to the store, like a pair of shoes that don't fit. We cannot pretend it's something it's not. We cannot wish or will it away. Our body has betrayed us, evolved, changed, become damaged, biologically transformed. We are this illness, and this illness is us on so many levels, because of how it affects us physiologically and psychologically. Again, I know many of you will object to this perspective. But for me, because I was so "free", so "healthy" before myeloma, and was able to do, "more or less", whatever I chose to do in my pre-myeloma life, I am more fixated and aware of this, than perhaps someone who battled "issues" prior to their diagnosis.

For me, every day is focused on "how to feel ok" and maintain the "ok" physiologically. When I wake up I assess my status. If I'm somewhat ok, then my goal is to maintain feeling ok, hopefully "good", for the day. I'm always thinking about how to stay well. How to not get hurt or feel additional pain. How to not exacerbate my circumstances. How not to sabotage what "good" health I have. How to not create or stimulate "bone involvement". How to power my body, "feed my machine", in an attempt to strengthen my fighter cells. I wake up with "chore goals", and hope my limited energy, (thanks to fatigue-stealing myeloma, and myeloma's medication side effects), will "allow" me to accomplish something. Anything. Never gave any of this a thought, pre-myeloma!

I am exhausted and frustrated living this way. So tired of living tired, being tired, being fatigued 24 7. So tired living consumed in trying to avoid so many things, in order to stay alive. So tired of being immune compromised, "living in a bubble", just to survive. I miss the freedom I had pre-myeloma. I miss the spontaneity I had in my life. I miss how carefree I was, how busy I was, how fun and productive my life was. I miss not having to focus on my body's mechanics, and internal workings. I miss not having to worry about the physiological "what if" all the time. I miss the "assumption" my body was a healthy working machine, and would be my partner, not my enemy.

So why do I live like this? Some may think I am "paranoid", overly cautious, too controlled by my illness. Why am I not riding my horses, going walking, hiking, skiing, traveling, playing, meeting up with friends, etc, doing all the physical activities I did prior to myeloma? Why have "I limited my life" as I have?
Well " I " haven't.
Myeloma has limited me, stolen my life, and I must accept it and move forward daily, in the limited way I can. My life is centered around not getting sick, not getting hurt, and trying to enjoy as much of each day, in whatever small way I can. My goal is to feel ok. Simple as that. Just feel ok, and if I'm lucky, feel "good". That is the life of an Immune Compromised Cancer Patient with Myeloma.

I know of so many myeloma patients that "throw caution to the wind" (as my dear mother would say), and just live life, as if myeloma was just a speed bump. They do whatever they want, regardless of the "consequences". Perhaps to them, the fun and pleasure they get, doing the events they do, overrides the potential repercussions... which may include illness, injury, hospitalization, etc. Sorry everyone, for me, it's not worth the chance. So no judgement on others, just my preference for me. The last place I want to go, is the hospital. Especially right now, with this crazy raging flu epidemic!

My son went to Hawaii beginning of January. He really wanted us to join them. We really wanted to go. But no way would I take the chance of cootie contamination at the airport, on the airplane or in the hotel. Especially at this time of year! And the irony. Scott wound up sick with a fever while there! He said there were so many coughing, hacking people on the plane. This week my daughter is off on a cruise. I would love nothing more than to do that. Sounds so relaxing. But No Way! Cruises are floating Petri Dishes of cooties, especially for the immune compromised! We all know of the news stories of ships coming in to port, sick with NoroVirus! Yes, Myeloma has stolen my carefree, take risks lifestyle, but I would rather be cautious, then more sick than I am.

So how do I fill my time? One of things I realized in trying to still work after diagnosis (Dec 2009 - June 2017), was the adaptations I had to make regarding eating, with the potential consequences of food and lower GI side effects from ongoing chemo. Now that I am "retired" (still cannot "relate" too that term), I am able to focus on feeding "my machine" in a healthy way, without worry of side effects, since I am home so much. My goal is to try to get something from each food group in my trap, daily. Such a chore for me, as I am not a "Foodie", and I am very careful about maintaining my weight, and not letting lovely Dexamethasone steroids make me "moon-faced" and pudgy. I'm like a wild horse, I "graze" throughout the day, hoping to arm my "killer cells" with the fighter ammunition, I was probably depleted of previously. I wasn't able to do this while working as a college Counselor, seeing students, in an office, never knowing what food might affect me, and how... I often wonder what "damage" I did to myself, trying too hard to "recover" too soon from my July 2010 Stem Cell Transplant. I was too "desperate" to be "normal", too anxious to claim my professional life back, so I denied the seriousness of myeloma, and went back to work too soon, and for too long...
Back in the day, much prior to my myeloma diagnosis, I had a lot of food allergies, so I was very careful what I ate. Probably too careful, and robbed my body of vital nutrients. I don't think I ate enough Protein back in the day either. When I was diagnosed, I was extremely anemic. Extremely! Funny thing, after my Stem Cell Transplant in July 2010, and subsequent recovery, I realized all my food allergies had disappeared! I could now eat WHATEVER I wanted and suffered no negative side effects as before, such as hives, crazy wheezing, potential anaphylatic reactions, GI disturbances, etc. So funny to me know. I am so much more "healthy" in some ways, but ironically, so "deadly unhealthy" in other ways.

So each day I keep a mental note of what I have done to hydrate, and I attempt to get something from most food groups. I hate living like this, since again, I am not a Foodie, and have moved away from being "momma chef", as my kids have grown up and moved on to their own home. I don't eat meat daily, but do protein in nuts, cheese, cottage cheese, fresh eggs from our own hens. I should do more fish, but I've never been a fan of the taste, and there is so much warning about "farm raised" fish being bad. Our son Scott made steaks for us last weekend, and it was amazing! But again I don't do meat regularly. I still feel bad for all the "factory farmed" animals. Many will object, but I get a lot of my fruits and veggies via juice. Not fresh juicing, but 100% juice, canned, bottled, pasteurized juices such as V8, OJ, combo OJ Pineapple Banana, Cranberry, etc. With all the e coli, salmonella scares regularly, us "immune compromised" patients can't risk the potentially contaminated fresh produce out there, and potential consequences. At least I personally won't take that risk.

I used to eat a lot of fresh salads, fresh fruits and veggies. Scares me now to do that. But I do take the risk occasionally, and hope for the best. Most of what I eat is cooked or steamed. See, with my type of IgA myeloma, and the myeloma medications I am on, my WBC is RARELY above the "Neutropenic" status. I'm lucky to live in the middle 2's. Thus my "paranoia" of food poisoning and cooties overall. So yes, my whole life now is caution, caution, fear, fear. I JUST DON'T WANT TO BE SICK, AND I JUST DON'T WANT TO FEEL BAD! I want to feel well. My daily goal is to feel well.

But the crazy thing lately, even when I was so sick from the headcolds and flu, so many of my blood test results were in the "normal range". All my "organ" labs normal. Most of my CBCs, other than my WBC, were in the normal range. So I must be doing something right :))

I'm very fortunate that several months throughout the year, we have plentiful beautiful lemons, tangerines, tangelos from our trees, and fresh eggs from our sweet hens. At least I know our fresh bounty doesn't have e coli, salmonella cooties! I like to juice the tangerines for fresh tangerine juice! Have you ever tried that. Yummy!! And I make fresh lemon and honey tea, (with the grated rind), daily. I often laugh it would be so easy to be like my horses. Just fresh hay and water sustains those big powerful bodies!

So yes, my life is very different now, but I am so very lucky to have the "quality of life" I do. I count my blessings daily, and take few chances to complicate my status. I just want to feel well, and don't want more "drama"! My next labs are Feb 6, and next Darzalex is Feb 12. So we'll see what all this silliness in my life brings. Thanks for caring about my story and reading my musings. Hoping your life is full of happiness, health, and whatever completes your life.

Thankfully well enough to resume horse chores.
Being outside with my critters makes me happy :))

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

Thursday, January 18, 2018

In Sickness and In Health... Married to Myeloma

Hello 1.18.18

It's the year of 8's! How many of my loyal followers checked in yesterday on 1.17.18 :))  Were you still thinking it was my year of 7's? Lucky me, I've rolled over another year! I think it's truly amazing I've survived 8 years now. Although I read about double digit survivors now, my 8 years really are a "medical miracle". So it's all about the #8 for me and I look forward to seeing what 2018 will bring.

Hoping your 2018 has been good so far.

I'll be back in just a little bit. It's such a nice day out, and time for Vitamin D. But I'll update you on these topics, when I return... (Actually, I'll update about everything on my 1.28.18 post :))

~ This horrible flu season and how it affected me for almost 3 months
~ Finally made it to my Dr appt and Darzalex infusion this past Monday 1.15.18
~ Living life with the "cancer cloud" always present, so unbelievable... still
~ Always trying to accept my reality, but how can this be
~ "Life is Great... Until it's Not" ... learning to handle what life tosses my way
~ My Goals for 2018.. what are yours?

Here's some of my favorite myeloma websites, that anyone affected by myeloma should resource regularly:

IMF International Myeloma Foundation

 MMRF Multiple Myeloma Research Founcation 

 Myeloma Crowd

 Myeloma Beacon

And so thought provoking:
 Randy Pausch: This is the Wisdom a Dying Professor Shares in His Last Lecture

Monday, January 8, 2018

Hello Year 8... It's Already Crazy 8s

Hellooooo 1.8.18

Just days ago (12.30.17), I "celebrated" my 8 year Myeloma diagnosis anniversary. Whoohoo! Soon after that, the world clock turned over to 2018, and we all celebrated the fresh new year.
I was looking forward to telling you of all my 8 related plans, 8 celebrations, 8 wonderful everything to come, as I launched in to 2018- my 8th year battling Myeloma. But sadly, the beginning of year 8 and 2018, has only brought many uses for a strong word that rhymes with 8:

Yes, "Year 8", and just days into 2018, I bit the dust again. I hate you myeloma. I hate always being sick. I hate always worrying about getting sick. I hate my frail, delicate, compromised immune system.  I hate how you've stolen my life myeloma. I hate how I got sick AGAIN! And I HATE the pain I experience, sabotaging what little Quality of Life I have, as I enter Year 8...

Days before my 8 year anniversary, I felt I was coming down with another "head cold". I had all those yucky upper respiratory symptoms, but not bad. I tried to deny it away, think it away, Vitamin C it away. Hot lemon and honey tea it away. Eat well it away. Hydrate it away. But no, this nasty vicious bug invaded deep, and here I am, January 8, 2018 suffering like I haven't in a very long time...

Yep, I had a slight sore throat, slight headache, slight runny, sneezy nose, slight congestion, slight fever, but never over 100.2, ... then BOOM! It hit... Omg, "It" turned into a cough that I can't even describe. It wasn't horribly deep at first, but it was constant. It was raspy, and scratchy, then it became deep, congested and gut twisting. And it persisted. It attacked me morning, noon, night. Middle of the night was the worst. You know those gut heaving coughs, were you can't stop coughing, combined with dry heaves because you're coughing so hard, combined with sneezes, combined with peeing in your PJs, because you're coughing so hard! Yep, that's been me this last week. So miserable... so angry, so frustrated, so confused why I am being constantly challenged and "tortured", in so many ways...

But on top of all the misery, when coughing, I bent wrong, twisted wrong, creating monster pinched nerves, pulled muscles, bruised ribs, from this vicious cough. Started on the left back side ribs, then just as that seemed to get better, it moved to my right side ribs, and upper chest area. Jumping around from body part to body part. Front to back, stabbing me, seizing me, pinching me, doubling me over in spasms of pain, at all times, and every time I coughed. Pain that brought me to tears. Tears of pain burning my eyes. Tears of mental exhaustion, representing 8 years of unwanted challenges. Challenges that seem unending. Unending forever-ness of myeloma's rage and revenge.

My fever broke a within a few days, and thankfully, it never reached the ridiculousness of November's high of 103. But this time I was coughing my guts out. It was "productive", but intense. I always leaned and bent over while coughing, so as to not pull any additional nerves and muscles. I coughed and cussed at the same time. I coughed and cried at the same time. I think I cussed more than I cried. It was miserable. I just don't understand why our bodies betray us so much...

So on Saturday, I felt ok enough to resume ranch chores, as by this time, Jim had the bug, feeling worse than me now, son Scott had a fever again, and daughter Alissa was out of town, so I thought I would be ok cleaning the arena. As I forked and raked the horse apples, I felt strange take your breath away twinges in my back left side. I just thought it was tight from all my awkward coughs, so I continued. But as I continued, it got worse. The PAIN took my breath away. Literally, stole my breath away. I could hardly breathe. If I coughed I thought I would seize and die right there, falling into and under a horse, or into a pile of poop.

I stopped in shock at how much pain I was feeling. See with my IgA myeloma, so far I've been very very lucky to only have minimal bone involvement. I haven't experienced the broken, cracked, lesion- honeycomb bone issues most have with myeloma.  I have had a lot of muscular, pinched nerve issues, but I've attributed that to the side effects of 8 years of treatments, medications, steroids, etc. But this pain was something else. I could barely make it back into the house.

My side was seized. The pain was excruciating. I was having difficulty breathing, trouble walking. I was scared. The pain was excruciating.

I wondered if this was "it"? Had my time come. Did all my "bragging" about making it to my 8th year come back to bite me. Was I going to collapse and die in my kitchen alone, and no one would know what happened to me?

I reached for my Albuterol inhaler, and took a couple puffs of that. I tried deep breathing, but that only stimulated coughs, which sent me in to a coughing spasm that I was sure was going to kill me from pain. And then suddenly, one of those crazy intense (deep and shallow at the same time) coughs attacked me, above and beyond the cough I was already coughing. The type that also includes a sneeze reaction at the same time, which then throws your body in chaos and you're coughing, sneezing, peeing and gagging all at the same time. The pain and multiple body seizing was too much for me, and tears flowed, as did the pee. I was a wreck. My body owned me, and I was losing it. I really thought this was "it"...

As I'm learning over the kitchen sink choking, gagging, coughing, crying, sneezing, making all kinds of awful noises, our little rescue doggie Nala was standing right by my feet watching me, with the most confused and concerned and scared look on her face. I didn't even have the voice or breath to console her and let her know I was ok. It was really sweet. She was really confused. About that time, Jim hobbled in, and was very concerned, as he heard me from down the hallway. I couldn't talk to tell him what was happening. All I could do was continue with my spastic spasm, and try to point and motion about what was going on.

Eventually my multi symptom cough lessened and I tried to briefly, hoarsely, tell him what was going on, as I got out Advil, Tylenol, Flexeril, and the inhaler. And took one of each.Willing these meds to give me a break, to extinguish the pain, to let me live. See, I keep kid's Jr strength "fast melts", "melt-a-ways" close at hand always, as in cases like this, or GI issues, swallowing pills is not an option! So I took a few of whichever, I forget now, and sobbed my way to the bathroom to change.

There I slathered myself in BenGay and Vicks vapor rub too. I was a wreck, and I felt "this might just be it"... It's really scary when you can't catch your breath, can't breathe, or control your body's reactions.

But it wasn't "it", and I made through the night in horrific pain, but I made it. After I woke up, after a restless, painful, coughing night, I suddenly thought about my best friend and nemesis DEXAMETHASONE STEROIDS! Yes! the magical monster Anti Inflammatory to the rescue. But with all this other stuff in me, and how awful I felt, I didn't want to take my full "regular dose", so I only took 2 pills of 4mg each, rather than the weekly dose of 5 pills @ 20mg. And I waited for the magic. Gradually, ever so gradually, I began to feel RELIEF! The seized nerves and muscles, spasm-ed less. The pain receded a bit, and I heard a few useful cracks as I moved around more. And more. And more. And within several hours, that life altering pain, was now a pinching dull ache.

I moved very gingerly about all day, not doing much at all, sitting with a heating pad most of the day, trying to keep hydrated and eat something to build my strength up. Yes, I still had the awful cough, but manageable since the pain was dull. I still coughed, but never as intense as yesterday. But as I write this, 12+ hours out from Dex steroids, I can already feel the angry nerves and muscles trying to bite back... I have no idea what today will bring... but I know one thing, I can't do round #2 of that horrific pain...

ORIGINALLY... this post was going to be short, with a brief good news myeloma lab report and cute pictures from my year 8 anniversary celebration from 12.30.17. But as you've read, a lot happened that I just couldn't cheat you out of :)) If you've read this far, thank you. Thank you for caring about my crazy life stories. And now for some good news:

 Unbelievable! And these labs were taken late December 2017
just as my new vicious bug was revving up!

And still no M Protein detected!

How crazy are those results! And, most of my CBCs and organ stats are normal or near the low end of normal. Unbelievable how I can be so "sick", but still doing so well on Darzalez, Pomalyst, Dex steroids. Thank you chemicals and traditional medical science! More labs on Tuesday, and make up Darzalex infusion on Wednesday Jan 10, as I was supposed to go last Wednesday Jan 2, but you can see why that wasn't possible!

As I recall, I started feeling sick December 28, then somewhat ok on Dec 30 for a quick lunch celebration for my 8th diagnosis, survival anniversary. Then it's been all down hill from there. So let's end on a happy note, and hope that I don't have a re-do of my coughing, seizing "this is "it" drama! 

Good Bye 7's
Hello Crazy 8"s

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

Saturday, December 30, 2017

Happy New Year... You Have Myeloma


8 Years Ago Today, on 12.30.09, I Was Diagnosed with "high risk" Myeloma.

Today I celebrate my life, my health (what "little" I have), and all those in my life that have helped me stay alive for these past 8 years! On this 8 year anniversary of my Myeloma diagnosis, I can't completely nor adequately express the gratitude and "surprise" that I am still here to write this post.

8 years ago today, I was given a death sentence. 

I had never heard of Multiple Myeloma, as most of you never had either. I was told a dizzying amount of technical medical information that day, that changed my life forever. I was unable to comprehend what I was being told. I sat in utter disbelief. Jim cried. But one of the main statements I absorbed, was that Myeloma, Multiple Myeloma, is incurable, and I would be in treatment for life, whatever length my life forward would be.

Was I scared? No. I was shocked. Too shocked to be scared. Totally stunned. This was news that didn't fit with my life plans, and I just couldn't fully process what I was told or how terminally ill I was ... then, now and for my forever. 

See, on Dec 18, 2009, I had my first painful, reality awakening Bone Marrow Biopsy. It hurt physically and mentally. That was the first slam of my new reality, of how serious my situation was, as up to that point , I just thought I had very low blood counts due to extreme anemia, and a severely compromised immune system.

What I didn't know on Dec 18, I found out on Dec 30. I was told I had 70% cancerous plasma myeloma cells coursing through my body.  Cancer was raging throughout every part of me, in my plasma cells, in my bone marrow, in my blood, and I was a very sick puppy. 

Dec 30, 2009 I was given a death sentence. 

Today, Dec 30, 2017, incredibly, I have defied the odds. To stay alive, I have ingested and injected more chemo treatments in 8 years than I can count. I have survived a Stem Cell Transplant (July 2010), that many do not. I have responded to new chemo cocktails when my Myeloma numbers were almost 15 times above the high end of normal. In other words, I am a "medical miracle " and am here to tell you my story. Myeloma is trying to kill me, but so far Team Julie is winning.

Why I have survived against all odds, I'm not quite sure, but I do know my respect for medical science, traditional medical treatments and my own disbelief, perhaps a bit of denial of my situation, is the reason I am still here. I have gratefulness and gratitude beyond words, and feel so incredibly fortunate and blessed to still walk this beautiful earth.

Sunset in my backyard the other day!

I am thankful and grateful for all of you caring about me, and supporting me throughout this unbelievable journey. I am thankful and grateful for my amazing medical team of Doctors, Nurses, Chemo Lab Pharmacists, and all the Myeloma Researchers, that have medically saved my life. I am thankful and grateful for my family, friends (near and far, known and unknown) and my colleagues for being there for me, and caring about me as you have and continue to.

In honor of this amazing life anniversary, I told my kids I was going to shave my head, and proudly parade around as a visible cancer patient, so those that just don't get the seriousness of my situation might just do so, if I "looked like a cancer patient". See, Myeloma is an "invisible cancer". I don't have visible, external scars, that alert outsiders I am a terminal, incurable cancer patient. You will only see me out and about, or in social settings on the 1 or 2 days per week I feel ok, when I'm not depleted by extreme, immobilizing fatigue, and chemo side effects, or when I have taken powerful steroids so I am functional and fun. 

Most patients in the Myeloma club echo this problem. We are told "but you look so good, you can't be "that" sick". We have hair, we fix ourselves up, and try to be stronger than we really are. Our fear and worries about illness, sickness, germs and cross contamination are not taken seriously. Sadly most just don't understand that Myeloma is an Immune System Cancer, that depletes our ability to fight off cooties. Did you know most myeloma patients die from illnesses "normal healthy" people quickly recover from. Our severely compromised immune just can't fight off germs as a normal immune system can. We can't bounce back from illness that normal healthy people can. And as I write this, sadly, I am sick again. Again, with a lousy head cold, cough, fever..

Because this is such a huge, monumental anniversary for me, here are my previous blog post thoughts and reflections, on this day, over the last 7 years! Yes, 7 years of Myeloma survival has rolled over to 8! Pretty amazing. So glad I've recorded my life and feelings here on this blog...

I will end with words you don't want to hear, but I need to write them. Multiple Myeloma is a terminal, incurable cancer. We are on lifetime chemo, immunotherapies, any treatment protocol available, or clinical trial we can tolerate, to stay alive. To Just Stay Alive. And just because we look ok on the outside, please do not assume we are actually ok on the inside.

 Here I am Dec 25, 2009 (with my Uncle Murray(RIP)
Me, unknowingly full of 70% cancerous Myeloma cells
How sick, cancerous and "near death" do I look? 

 Dec 25, 2017- How Cancerous do I look here?
8 years later... 
After almost 8 years of chemo, immunotherapies
with more treatments than I can count!

Thank you loyal followers and readers. Thank you for sharing almost 8 years of my life with me. Thank you to everyone that takes the time to read my posts, and care about my life. This blog evolved in a way I never planned. I am so grateful to be here to share my thoughts with you, and hope my thoughts and reflections have impacted your life, as they have mine. 

Wishing you all the best for the remaining hours of 2017, and best wishes for a happy, healthy, rewarding 2018!

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?”)


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.