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

Saturday, May 27, 2017

Injection Rejection- Time to Grow Up and Accept my Circumstances


Hello Loyal Friends and Loyal Followers...
Here we go again... thought not much would happen in just 10 little days between posts, but, wow, do I have some stories for you :)) Let's begin with the "drama" and work up to the "fun".

After my May 16 Dr appointment and learning more about my "Hole in my Head"!!!, I began my 7 day monthly break from Pomalyst. As myeloma patients well know, we're granted a tiny medication "holiday" between never ending cycles of treatment medications. The length of the break varies, often different with IV infusions and pill form chemo, immunotherapy. But I was lucky this month, that my Pomalyst and Darzalex break happened around the same time. As the "half life" of the meds begin to wane, I begin to feel a bit better. The "chemo fog" lifts and I have a little glimpse of the ol Julie before diagnosis. I had a few "important" events coming up, so I was happy the medication break stars aligned for me. However... potentially ambushing my plans, was knowing my CBCs revealed I was Neutropenic again.  No problem though, Neupogen Zarxio to the rescue!

On my last Darza infusion day, I was scheduled to receive my first of 3 Neupogen Zarxio shots, but towards the end of the day, the chemo pharmacist noticed my insurance required I pick up the injection Rx and SELF Administer Zarxio. Saaaay Whaaaat? The nurses and I were a bit confused, but it was the end of the day, and since I had been at the chemo lab from 9:30 to 3:30+, I was more than ready to get home. I didn't worry about the "confusion", and not receiving the shot, as I had previously checked in for a "Nurse Visit" at my local clinic, and the nurses administered the shots for me there. No problem I mused, I'll start Zarxio the next day, return to the shot clinic 3 days in a row, as I had done previously. The following day I showed up, checked in, received Zarxio shot #1, no problem. But when I checked in day #2...

It was confirmed, that in fact yes, my insurance does REQUIRE I pick up the Rx and SELF ADMINISTER my shots. Something about my "young age" vs those on Medi-Care? No way, there must be some confusion I plead. What changed? I've had numerous rounds of Neupogen shots administered by the "Shot Clinic"... what's changed, why? No Way... I DO NOT feel qualified or comfortable self injecting! (Back in June 2010, my nurse friend Jan met up with me daily, to give me my Neupogen shots prior to my Stem Cell Harvest, in prep for my Stem Cell Transplant July 2010, but I thought that was "different" then, due to needing 2 weeks worth of shots...)

 June 2010, Nurse Jan and I,
Neupogen shots "on the go" lol :))

I'm in a bit of a mini panic now, as I showed up and expected to receive the injection without a hitch, only to find out, I must "cowgirl up", grow up, and learn to self inject! NOPE! not going to do it, I pout internally. I'm truly shocked. I don't feel brave or qualified to do this. No way, not gonna happen. The nurses are so kind, explaining the situation, apologizing for the confusion, calling my Oncology Nurses and trying to figure out what's up, what changed. They really wanted to help me out, making numerous calls, and offering to teach me right then and there, how to self inject. Intellectually, I know it's really "No Big Deal". But emotionally, I wasn't prepared for the change! Meanwhile, I'm watching the time, as I have a "once in a lifetime event" scheduled that evening, and time is getting short for me. See, I was due at my College for a "Meet and Greet" ceremony, to meet my very first "Counselor Julie Scholarship" recipient! Seriously life, what's up with the ambush!

I work on controlling the lump rising in my throat, knowing I have to switch "identities" and roles fast, leaving "Patient Julie" behind, to quickly become "Counselor Julie". I let the nurses know I just cannot do this right now, as it's just too emotional for me, and I have to be somewhere soon, "parading as ok", in just a few short hours. Nope can't do this today... or maybe ever. I feel like a failure. I feel stupid. I feel ridiculous, as I know millions of people self inject. But I just don't feel comfortable doing this, bottom line. I accept the Charge Nurse's offer for an appointment the following day, to "learn" how to give myself injections. She's so kind, so reassuring, so positive. She is concerned I won't receive my scheduled Zarxio. She reassures me I'll do just fine. I leave the clinic, no shot administered, feeling emotional, mad at myself, and so mad at myeloma for ruining my life. I Don't want to learn how to self inject. Period. I just want to be a well person, without all this medical drama.

I have a wonderful evening meeting my first ever "Counselor Julie Scholarship" recipient, Tanya. What an inspiring woman! What an honor to have her selected to receive my scholarship. She's worked so hard to be her. She's currently a 4.0 Valedictorian. We connect on so many levels. What a beautiful evening, me masquerading as "normal". I return home late that night inspired, but mentally and physically beat up, exhausted.. trying to process my crazy life.

 The honor is mine!
With Chancellor Dr Dianne, Tanya, me and son Scott.
Inaugural presentation of the Counselor Julie Scholarship
to Ms Tanya, Most Amazing Student Ever

 All smiles of congratulations,
Tanya and me

 So lucky to have Tanya as my very first recipient! 
Here we are, Tanya, me and my son Scott

The next day I returned to the Shot Clinic, convinced the insurance "mistake" has been figured out. Surely, I will be able to pick up my Zarxio Rx at the pharmacy and the nurses will be able to give my shot, no problem. I check in, confident I'll be in and out fast, and on to my next activity. As I'm waiting, I'm processing the possibility of having to self inject. I'm remembering over 37 years ago when my horse vet dispensed injections to me for my beloved horse who had some sort of barn influenza. I will never forget how nervous I was at the thought of giving him shots, but at that time, I was still considering a Veterinary career path. I accepted the challenge and accepted the injections given to me to give to my horse. You know how professionals always seem to make things "look so easy". Well after the Vet demonstrated how to do it, injecting swift and precise, I had confidence I could do it. Ha! Not! I wound up sticking the needle in the wrong place, blood spurting all over both of us! When drawing the shot syringe back, I saw more blood than medicine in the syringe! I panicked, deciding to never ever to attempt that again! Yep, No Way do I feel qualified to self inject Zarxio into myself.

I'm called in. I thank the Charge Nurse for working with me, and being so understanding of my fears and insecurities. I'm sure she's going to accept my Rx bag of Zarxio shots, administer one for me, and off I go like before, returning the next day for shot #3.

Nope. Not permitted. I must learn. I must brave up and learn how to self inject, or forever rely on others to do this for me. I have always been firery independent. I don't like relying on others. I like independence. I like accomplishment. I like feeling in control of myself and my body. I must accept my situation, I tell myself. Brave up and learn Julie. I begin to feel very emotional. This is pushing so many buttons on so many different levels for me. My nurse is trying to reason with me. I get up, I pace. I get emotional. I say I just cannot do this. She reassures me. "Yes you can, you can do this. You can learn." "No I can't. I don't want to", I weep. I feel so stupid. So ridiculous. So weak. So pitiful. So dependent. So sick. So cancerous. I feel so out of control of my life. Myeloma has completely stolen my life, I weep. I can't do this. I apologize. I got up to leave.

I cried. I cried because 7 years of battling stupid myeloma, hit me today. The symbolism of injecting life saving meds into myself hit me. I cried because I'm scared. I cried because I have little control over what my body is doing to me. I cried because I don't want to give myself shots. I cried because I have to. I have to be brave and learn to do this. I cried because medications are keeping me alive. Without them... well... you know... I cried because I now know, and have to accept, I have a Hole in my Skull. I cried because myeloma is eating me up from the inside out. I cried because buried buttons were symbolically pushed, with the push of the needle. I weep, feeling sorry for myself, feeling so stupid and incompetent.

I apologized to my nurse for my "breakdown". I said, "I just can't do this". She said, "yes you can!" I'm right here with you, you'll do fine". "I'm so scared, what if I do it wrong". I told her my horse story. She smiled, and said, "I'm right here with you." "You can do this". Again, I almost left and gave up, but I didn't. I bit my lip, grabbed my tummy fat, and pushed the needle in, because I know I have to grow up and be brave. In seconds it was all over, and I felt so foolish, yet so accomplished. I weeped again. But I sucked up my emotions, thanked her so much for her patience and understanding, and for "making" me, encouraging me, to do this. I walked out of the clinic an emotional wreck, but feeling so accomplished! I counsel the world about bravery, taking risks, acceptance of our circumstances and dealing with our emotions and accepting challenges. I know all this intellectually. But, the symbolism of giving myself shots was just overwhelming to me. I have cancer. I'm sick. Without medications, I die.

On the way home, I stopped and bought 3 different types of Ice Cream. And picked up my next round of Pomalyst chemo pills.

 I chose Mint Chip, Peanut Butter Cup, and 
some extreme Chocolate Chocolate Cookie Dough lol

Hello Rx's for Pomalyst 2mg and 3mg
and Zarxio shots for self injection

The next day, I celebrated life with my cancer girlfriends at Relay for Life. One day I am accepting I must give myself injections, and really feeling like a cancer patient. The next day I attend this wonderful event, hearing stories that are so compelling; life stories much more challenging than mine. I tell myself to shut up and suck it up. It could be so much worse, as so far my triplet cocktail is saving my life. I may be Neutropenic but the chemo meds are currently working for me. For now that is.

 4 different cancers represented here

Yep, 7 years, take that myeloma!

Girlfriend Janet of 37 years!
2 different cancers here

 2 different cancers here
Girlfriends of over 25 years,
Judy and Suzanne

Myeloma sisters Elizabeth, Cynthia, me

Couldn't find my luminary bag, 
so this Julia and I will celebrate together

Here we are, featured in the luminary slide show

Pooped out, by this time, with all the "drama"
and excitement of this week. 

I celebrated us Survivors in the morning at the "Survivor Walk". Stayed for a few events, then went home, hydrated, ate, was going to take a nap, then I remembered... remembered I needed to give myself my 3rd Zarxio shot! Oh boy. First time self injecting at home, no supervising, supportive nurse staff. I jokingly asked Jim if he'd like to inject me, and he gave me a look, a hearty laugh, and said NO WAY!! I took out my Zarxio shot, let it come to room temp, oversprayed my belly with alcohol on the opposite side of the 2nd shot, grabbed some belly chub, and boom, cowgirl up, in it went. Bingo, injection success! Whoo hoo, I did it! I'm all grown up, a "right of passage" completed. I'm an independent injector now, confirming to me I'm a sickie, I'm cancer patient, I need medications to stay alive. But alive I am, and I'll live life to the fullest on the days I can. 

I'm waning again now, as I'm a week into Pomalyst. Glad all these special events happened when they did, during my mini medication break. Now it's back to the chemo lab on Tuesday for Darzalex # 11. Monday I will take pre infusion labs, and we'll see how my CBCs are holding up. Perhaps another round of Zarzio shots? Bring it on! I'm ready for you needle in the belly. 

Thank you for reading, commenting and checking in on my crazy adventures in Myelomaville.

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

Wednesday, May 17, 2017

Not Liking Lytic Lesions

Hello 5.17.17

Where do I begin! Time for my worn out comment about completing a previous post and then thinking, "Ok, next post will be uneventful and boring, and maybe not even necessary"... LOL,.. So Not True much anymore. Geezzz, if only I could report in, that my last 10 days between posts was in fact uneventful and boring. Nope, I'm learning this is not possible. So here goes the newest drama, and I'll let Google do the introductions: 

What is a Skeletal Survey

What are Bone Lesions, Lytic Lesions

"What is a lytic lesion on a bone?
Soft spots appear as “holes” on a standard bone x-ray and are referred to as osteolytic lesions. These bone lesions weaken the bone, causing pain and increasing the risk of fractures. Bone loss frequently accompanies multiple myeloma, and 85% of patients diagnosed with multiple myeloma have some degree of bone loss."

"What causes lytic lesions in multiple myeloma?
Multiple myeloma bone lesions may be treated with bisphosphonates or radiation therapy. In myeloma there is an increase in osteoclast activity that is caused by factors called osteoclastic activating factors or OAFs. These osteoclastic activating factors are known to be released by tumor cells."

How'd this Happen ??
I met with my Dr 5.16.17 before my regular Darzalez infusion appointment. We discussed my recent Skeletal Scan and what showed up. Yep, I have a LYTIC LESION in my SKULL. A 7mm Hole in my Skull! And here I've been a bit "boastful", often exclaiming, " Oh, I have IgA myeloma, so I haven't had any bone involvement"... ahahaa shut up Julie... here's your payback. Who knows how long this little hole has been brewing in my skull? From the report, which I originally misunderstood as the long time preexisting lump bump (tumor?) on my Right side skull, is actually not that, but a NEW myeloma invader on my Left side skull, about an inch above my Left ear. Yep, saw it on the xray scan today. From details on the report, this new Hole was NOT seen on my last skeletal scan 12.15.15, so it appears that this lesion has been hollowing out it's living space during 2016. What's that saying: "I need this like a hole in the head"!!!

 The Hole's Radiology Report

Wow, Oh Boy. Seriously did not see this coming. I just thought myeloma was systemically challenging my blood properties, blood plasma, my immune system, etc, and ruining my life in general... but I naively thought I wouldn't be a participant in "bone lesions". Ok ok, yes, I have been playing the ridiculous optimist card this whole journey to be honest, thinking I was a bit "different" and wouldn't be challenged in the same way as my myeloma peers. STUPID! Why did I have this "magical thinking"? Perhaps because my "high risk" status was always pretty successful initially at pummeling those errant myeloma cells, and responding well to most all treatments over the past 7 years. Heck, I went from IGA around 5700+ at diagnosis, to the 1000's, to the 500's, after just Revlimid and Dexamethasone, first part of 2010. My initial diagnosing Bone Marrow Biopsy showed 67% cancerous myeloma involved Plasma Cells, but after induction Rev Dex for 5 months, and only one IV infusion of Cytoxan, my pre Stem Cell Harvest bone marrow biopsy showed only 10% cancerous myeloma cells. I then survived Melphalan chemo with my July 2010 SCT, (but had lots of  Hickman catheter drama), yet came out the other side, with Remission. And that remission, with Revlimid maintenance, lasted 2 and a half years, until I had to up the treatment level mid 2013. But I did respond to Rev, Dex again for 2 years, then had a great response to Kyprolis, Dex in 2016, until I became "Refractory" to it, and began the various versions of my current treatment of Darzalex, Pomalyst and Dexamethasone steroids.

So yes, I've been a bit "spoiled" (compared to the "typical" MM patient who presents with horrendous bone pain and bone lesions from the start). I, for whatever reason, was able to avoid the Bone Lesion Bus. Well welcome to the "honeycomb" style bone lesion club Julie. You have a HOLE IN YOUR HEAD! ahahha, ok, no jokes... well maybe one...

And the additional icing on my current cupcake, is my Neutropenic status from Pomalyst pummeling my immune system. Even with a lower, creative dose of 2mg alternated with 3mg, Pom just reduces my immune system to rather dysfunctional. So my Dr prescribed another round of Neupogen, Zarxio prior to starting my next Pom cycle this Friday. True story- I am quite Happy about this, as me and this "man-made form of granulocyte colony-stimulating factor (GCSF)" get along very happily. "G-CSF is a substance produced by the body. It stimulates the growth of neutrophils, a type of white blood cell important in the body’s fight against infection." I will receive Zarxio injections for the next 3 days, and hope I can move from Neutropenic status, to having some fighting "Navy Seals" within me, armed and ready to battle off incoming Cooties!!!

Are you still with me? Following this ridiculousness? 

I'll leave you with GOOD news finally!
My IGA went DOWN a bit this past month from high of 4130 in February to now, 449! Normal range is 70 - 400. So I am still Abnormal, and above the High end of normal, but wow, pretty amazing triplet cocktail currently saving my life!

My M Protein is "not detectable", but my Protein Electrophoresis is still "Abnormal".
I still have Good days and Lousy days, but with the new every-other-week Darzalex protocol, I am doing a bit more out and about. My main side effects are disabling fatigue and exhaustion, a bit of neuropathy in my feet and hands, headaches (ah ha! it's the "hole in my head" lesion doing it lol), still have unpredictable lower GI issues on on both "spectrums", blurriness, dizziness, swelling, achy skin, "chemo fog", etc., but things are certainly better than they were Oct 2016 thru Feb 2017! I am so grateful for all the brilliant medical professionals taking care of me and my myeloma peers.

Although it's laughable me trying to be me, 
here's a sampling of my recent adventures, "trying to be normal"
(LOL, not knowing I have a Hole in my Skull LOL!)

 Group Retirement Party last week

 "Apple Raking" with these darling girls

Long overdue visit with these sweet supporter girlfriends

Ranch visit with these wanna be cowgirls 

Mini Mother's Day road trip, great fun!
Guess who these characters are framing me?

Lucky Momma here :))
Scott drove, they shopped for picnic supplies, 
they prepared lunch, and I relaxed and laughed

Beautiful Lake Casitas
with few humans around to share cooties with me

But it did just hit me-
This is my 7th year battling myeloma
This post is on the 7's
and I have a 7mm Hole in my Skull

Thank you reading, following, caring and commenting!

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

Friday, May 12, 2017

Surprise! Your Recent Blood Tests Show...

Just a little update, as we wait for the "big" update on 5.17.17

Received a call late today, that my blood tests (which I took earlier today), revealed that I'm ... can you guess???  Wait for it.... Yes, I'm NEUTROPENIC ... again! Most likely from my 3 weeks of Pomalyst, even though I've been doing a lower dose of alternating (daily), 2mg with 3mg.

The irony was Jim and I were out to a spontaneous late lunch when the call came in, but I ignored it and let it go to voicemail, as I didn't want to hear "bad news" at that moment. Ironic, this was my Darzalex infusion break week, thus I had packed in an event almost everyday- ooppsy, potential cootie contamination! Not to mention I attended the first of my retirement celebrations (with a lot of people and cooties), not to mention I am still picking up the horse "apples" as my daily exercise, not to mention that I am still cleaning and diapering our 20 year old disabled cat and doing the litter boxes, and not to mention all the other tasks and (few) events I do...  which a NEUTROPENIC, IMMUNE COMPROMISED cancer patient should not. Oh Boy! I really didn't think my WBCs were this status again.

Fortunately, if I'm out and about in public, which is not often lol, I'm quite "OCD" regarding not shaking hands, not being close to people, not touching public things, and always using wipes and alcohol hand spray (which I make from Isopropyl alcohol and a bit of scent from Bath and Body sprays, or Wintergreen Mint Isopropyl alcohol). People think I'm way over the top about this, but DANG IT, these blood tests PROVE my self protection and ultra caution is valid, smart and proactive. I think about all the events this week, and even though I've been "exposed" to cooties, I practiced my usual super cautious cleanliness, and I'm sure glad I did. I've always been super clean, but my myeloma status forced me to be additionally careful and cautious. So take that, those that think I'm ridiculous! I will "brag" here, that I have never been hospitalized for an illness (other than my SCT), never have had Pneumonia, Bronchitis, or a flu that needed antibiotics, etc. So even though my immune system is "dangerously compromised"... knock on beautiful wood, I've fought off the cooties effectively!

So hello Neutropenic diet, I will be a bit more cautious, and not eat fresh fruits and veggies now that I know my current status. But ooopppsss, that's exactly what I did this week. Cross your fingers, I'll be ok, and there aren't any microbial cooties swirling around in my system, ready to attack!

Can you believe this? I can't. But yet I can. Every time I allow myself to feel just a little bit "normal" and engage in a few "normal" things, boom!, I receive my "reality check" loud and clear. Wonder what other "interesting news" my blood tests will reveal? What's your guess? I'm hoping Darzalex is still pummeling those annoying myeloma cells, even though I'm on the new every other week protocol. I'll report back on 5.17.17

 First of several retirement celebrations.
Thanks a lot terminal cancer, for ending my career...

  Ranch visit with these lovely ladies!

 Peach Cobbler and Apple Strudel splurge,
before my news

 See those lovely "apple" piles waiting for me (behind RedBear and Sunny)?
Should a Neutropenic chemo patient being doing this daily?
Heck ya! Good for the body and soul!

 Do I look like a Neutropenic, 
immune compromised, terminal cancer patient? 
Most just don't get how I can look ok on the outside, 
but be such a sickie on the inside. 
Me either!

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

Sunday, May 7, 2017

Scans and More Scans

Hello May!

So where did I leave off... not sure, thanks to continual "chemo fog"!

Darzalex, Pomalyst, Dexamethasone are doing their thing... I hope.. as I really don't know. Last "myeloma marker" labs were 4.13.17 and things looked pretty good then. But that was when I was doing this awesome Triplet Cocktail weekly. Per Darza protocol, I began the every other week regimen this past Tuesday, May 2. Things went ok, but I have to laugh about the crazy bi-polar experiences my poor body goes through.

I pre-med at home with 20mg Dex Steroids, first thing in the morning. Then I'm additionally "pre-medicated" at the chemo lab with a Big Bag of Benadryl and Tylenol pills. When I arrive at the lab, I'm full of life, actually feeling semi normal, and not in too much pain or GI distress. But when the Benadryl meets the Steroids, oooooo boy, it's woozy woozy time, combined with the hyper-bounce from the Steroids. Hello bi-polar reax inside of me lol. I was chatting with my chemo friend Josie/Josephine, supporting myself on my IV stand, when I felt myself getting dizzy and woozy physically, and mentally woozy foggy. It was a weird feeling, going from ok, to drugged up. I finally gave in, and went back to my chemo bed, as I didn't want to pass out and be dramatic. It really is amazing how medications/drugs impact our bodies. I never did much medication prior to my myeloma diagnosis, so all these side effects taking over my body, is still very strange to me.

Tuesday, Wednesday is still ok for me, as the meds are still romping around inside of me. But late Wed I begin to feel a bit icky and bloated, but not too awful. Thursday I definitely begin to wane, and often the GI stuff begins. But this Thursday, I managed to hold it altogether to attend a fun Relay for Life event. Crazy how many myeloma people I now know in my area. 2 of the ladies in this picture (in addition to me) have myeloma, the others are breast cancer survivors:

The Faces of Cancer
Crazy, right!

So by Friday, I really have waned, and the achiness begins. It's like a slow wave or fog creeping into me and onto my skin. I begin to feel like I'm getting "sick" with a flu or fever, then have to remind myself, "O yea, it's Tuesday's "revenge" invading. I feel sick, but I'm not "illness sick". My skin aches, my head aches, my body aches, I have metal-mouth. Fatigue moves in, and I just feel overall lifeless and yucky. I feel bloated, and know what that means... hello porcelain throne for a day or 2. So I've learned now that this chemo cocktail has a slower, more delayed crash, then Kyprolis back in 2015-2016.  Since this crash comes several days after my infusion, it actually fakes me out at first, creating an illusion of thinking I might be ok... then boom, extreme fatigue, yuckiness, sleeplessness, loss of appetite, aches, pains, and just an overall feverish-flu feeling. Then slowly, days later, the side effect fog lessens, and I begin to feel a bit better by Sunday. But dang it, today I tweaked my left upper shoulder/neck area and have a stiff neck, achy shoulder. But I laugh, as I can't believe the day I should begin getting a break, I get zapped by a random muscle ache. But hmmmm, maybe not so random, as I get these achy muscular, nerve things often now...  

I managed to take my "Skeletal Bone Survey Scan" on April 25. I knew I wouldn't know much until my upcoming Doctor appointment on May 16, which is also my next Darza infusion. So I wait and wonder.., wondering what the xrays will reveal. My last scan like this was a bit over a year ago, so I should have done this sooner in the year. I let the Rad Techs know of a few areas I was a little concerned about, and they made sure to scan most all of me from head to calves. See, back in 1998, I had a benign "Neuroma" tumor removed from my right side neck, shoulder, clavicle area. I remember for years feeling this weird bump clunking into my collar bone. It eventually grew to olive size. When I alerted my GP, he quickly scheduled me to have it biopsied. OUCH times a million! I remember it was so incredibly painful, and I totally did not expect the intensity of pain when the needle pierced the lump bump. Owwweee! Silly me, I had planned meeting family and friends for lunch after the biopsy, so clearly, I had no clue what biopsies felt like back then lol!!!  Fortunately the lump was determined to be Benign. I had surgery a few months later to remove it, as it was bunch of nerves growing into the tumor, or the tumor was a bunch of nerves, so the Doctors were worried it could eventually cause right side dysfunction and a variety of nerve damage issues, beyond the immediate area. I recovered just fine from that, but still have some weird twinges in that area, but the tumor never grew back.

But sometime after that, I noticed I had a pea size bump on my right side skull, a few inches above my ear. Again, didn't really give it too much thought, but over the years it's grown ever so slowly to blueberry size. Yes, I've shown my Drs this over the years, but no one seemed too concerned, as it didn't seem to be growing fast and didn't cause me any discomfort or pain. I mentioned this to the Rad Techs, so they would make sure to image that area. I do think "something might be up", as I received a call from Radiology that my Dr has requested another type of scan for me. I'll call tomorrow and schedule that... Yep, the myeloma ride continues.. on and on and on. I just can't catch a break... 

In middle of all of this, I managed to attend the annual City of Hope BMT/SCT reunion. My myeloma buddy Gary (my neighbor, believe it or not!) and I went together. Big event. Big media event. Big celebration for hundreds, thousands of families, survivors and all of the medical staff members in the BMT SCT department. Quite a special event annually. I went through my blog and pictures and found most all my SCT reunion pictures. 2010 to 2017, pretty remarkable huh! Sometimes it really hits me how amazing it is, that I am still here. I never thought I wouldn't be, but that was my minimalist denial side. The more people I meet, the more I read, the more myeloma groups and stories I read, the more I realize how remarkable it is, what I have been through and continue to go through. Some have it so much "worse" than me, and some have had remissions without treatment for years and years. Myeloma morphs so differently for everyone, and am really beginning to fully grasp what my form of "high risk" myeloma means. I get "bad" fast, but I respond to treatment fast. Then I become refractory to the treatment, have to formulate a new treatment plan, get better, then get worse. Then get better, then get worse. 7 years of this... wow...

Celebrating year #7

 Myeloma buddies, Julie and Gary

 Dr Farol and me
He will always remember that I was the only patient
that "never unpacked my suitcase"
during my July 2010 SCT :))

 Gary, Dr Farol and me

 My big cheese
Dr Spielberger and me

2017-  Look at all those BMT SCT Survivors!

2016, my 6th year reunion
I did not attend as it was pouring rain that day

2015, my 5th year reunion
Me and Dr Spielberger, cupcakes in hand

Dr Farol and Dr Chai

2014, my 4th year reunion
Dr Kogut and Dr Spielberger

(Still looking for my 2013 reunion picture
which would be my 3rd year reunion)

2012, my 2nd year reunion

2011, my 1st year reunion
visiting the hospital floor where I stayed all of July 2010

July 5, 2010
Ground Zero
The moment my stem cells arrive
and one of the reasons I am still here

And finally, here I am with my daughter
July ?, 2010, a few days after high dose Melphalan
and infusion of my stem cells... little did I know what was to come..

Yes, I have survived 7 years of myeloma treatments, and I have no idea what's coming down the train track for me. Not sure if the cancer train is headed away from me, or coming right at me. I'll be sure to let you know what I find out regarding what is found on the Scans. Not even sure what type of additional Scan they want to do on me, but I'll know that when I call tomorrow. Until then, I battle forward, always optimistic, with a touch of denial, a pinch of WTF, tons of gratitude, and continual bewilderment that am in the situation I'm in.

 Hello from Birdie!
Here's Birdie's Blog :) 

Hello from the chemo lab-
Thank you friends and strangers
for reading, caring and commenting.
I love hearing your story too.

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, 15mg capsules)
Pill form Dexamethasone Steroids (40 mg, 4 days on, 4 days off!
Omeprazole for steroid acid reflux
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
.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.