Some Good News, Minimal Myeloma Drama and a Few Crazy Adventures!

Hello 6/7/17

How about a post with mostly GOOD NEWS for a change. And a few "entertaining" stories!

The Hot Topic Headlines:

Not bad CBCs:
Yes my CBCs have rebounded since dropping dramatically the last few months. After my "trauma" with learning how to self-inject Zarxio, my WBCs cooperated and bounced sky high... well high for me lol. I think I had one WBC result actually in the normal range of 4.0, but it has since dropped back into the 3's. But hey, I'll take that any day over Neutropenic status of 1.7, 1.9 a month ago!

It's Darzalex "break week" and I've had minimal residual side effects from 11 cycles of Darza, Pom, Dex. (Or perhaps my body is just getting "too" used to all the healing chemicals lol.) In the last few days though, my skin is starting to feel achy, some Neuropathy in my hands and feet, and strange... sometimes I feel like I have tiny bugs crawling on me lol. But that's probably from the all my outdoor animal chores, as I think there are tiny bugs dropping from the oak trees, seeking me out as their host. But overall, I do feel better than several months ago when my myeloma numbers skyrocketed.

Next Dr appointment, with myeloma marker results, is coming June 14. This will reveal how I am doing on the 2nd phase of the Darzalex protocol of the every other week infusions. I'm really curious if Darza every other week, along with Pomalyst and Dex can still effectively keep myeloma at bay??!!What a miracle drug it is, just as it is, as it has been for me up to this point!

This past Friday was the last college Graduation Commencement of my career, and I (sadly) had to be a "no show". I really struggled with whether I would, or could attend, as 1- it was super early in the morning, and I rarely ever feel good in the early mornings, plus Fridays are now my chemo crash days, with Tuesday Darza infusions, and 2- it was just too darn emotional for me, as my "retirement" June 30 is not "by choice", but "forced" on me, thank you stupid myeloma for ending my beloved career as a College Counselor. So due to delayed Darza, Pom, Dex side effects, I wasn't able to attend my last Commencement as an "employed" Counseling Faculty Member...

So this month, my task at hand on my "good days", is to clear out my new office I hardly had a chance to use. So sad. My career began October 1981, fresh out of college myself, and I loved helping students realize their goals and dreams for almost 36 years. My career as a college counselor was incredibly rewarding, energizing, and always so wonderfully challenging in so many ways. Never a chance to get "bored" or did I ever have any regrets about my career choice. How my life has flown by, and how I still can't believe that cancer completely edited my life... I went in yesterday to begin this process, and just parking on campus near my office felt so "normal", yet so bittersweet sad. Walking into my office was so familiar, yet so strange and unfamiliar, as I haven't been able to be Counselor Julie in person since October 2015. I had invited my Scholarship recipient Tanya in to brainstorm her life, degrees and career path, and she will probably be my last "in person" "official counseling appointment". So wonderful to see my colleagues and catch up. How I miss this "normalcy" in my life. How I miss the daily routine of being a college counseling faculty member. How I miss all the stimulating conversations of "Saving The World, One Student At a Time".

On the homefront last month, on my Darzalex week off, I was able to have a few experiences that gave me a semblance of "normalcy"! For so long, FATIGUE and exhaustion from my low low low CBC's and my high high high myeloma stats, caused me to not be able to do much at all. For a long time, I just haven't had much "helium". I push myself to accomplish daily tasks, but most of the time my body is saying STOP and "chill out", but my mind is always telling me to go go go, accomplish accomplish accomplish! This roller coaster myeloma lifestyle only gives me a few good days a week, and often those days are IV infusion treatment days, thanks to Dex steroids. But this past month, with Darza treatment success and the WBC boost from Neupogen Zarxio, I actually had a bit of energy. How I explain it to people is that feeling unwell and sickly is my "new normal" and my norm, but feeling well or "normal", is now my "abnormal"!

Shockingly I managed to take the little doggies for a super fun walk with my ever so loyal, supportive friend Kathy. A few days later, on the way home from a Dr appointment for Jim, I actually went grocery shopping! These events are most likely uneventful and mundane to most, but huge accomplishments to me, as 1- I generally never have the energy to do either, and 2- never know what my GI system will ambush me with when away from my bathroom, and 3- I tend to strategically AVOID public (germy) places like grocery stores, WalMart, shopping centers, public events, etc. But I was pumped up on WBC building Zarxio, and enjoyed these events like a kid at Disneyland!

The Girls-  Portia, Nala, Hanna

Yippee for taking a walk and feeling somewhat "normal"!
Thanks for the super fun walk and awesome picture Kathy!

Last Tuesday became a complicated and actually a comical day. I was at the chemo lab all day for my Darza infusion, while our son Scott took Jim to his Dr appointment. He's had extensive pain and swelling in his blood clot leg, that just won't subside. He's also had a strange sore on his foot, same leg. Ironically, we both wound up on IV's on the same day! Sadly for him, it appears that the veins in his bad leg are not functioning properly, and we have to pursue this further. We just can't believe what has become of our lives, as health issues dominate and control our lives daily. Crazy way to wind up, as we were both so physically and mentally active all our lives...

Me in the chemo lab

drinking up Darzalez and Benadryl

Poor Jim receiving IV anibiotics

And if all this wasn't enough, (and I have highly edited all these little stories), we've had to make the sad decision to "re-home" Domino our Rooster. If you remember from this time last year, my teacher friend incubated eggs in her classroom for a science project and we adopted the hatched chicks. One turned out to be a lovely Araucona hen, who hatched from a green egg, and now lays green eggs, (yes this is normal for the breed). The other cutie hatched out of a brown egg, was initially black and charcoal, then became black and white speckled, then he became a rooster, then he became an overprotective attack rooster, that seriously attacked us anytime we tried to enter the pen to feed, water and collect the eggs. Poor guy is only doing what nature intended, and what his raging hormones tell him to do, but he's outta control and down right dangerous now. Never thought a "hand raised" chick could turn on us like this. Guess this is a powerful example of "Nature OVER Nurture"!

 Domino the Attack Rooster on the Left, 

and sweet Butterscotch-Rusty on the Right

Here's the story: Last week I was changing the water container, and I knew Domino was eyeing me, with intention to attack, but we don't go in the pen without "protection" of the hose and a spray bottle of white vinegar! (He stays away when we face him with the sprayers, and make direct eye contact with him.) Well, as I bent over unscrewing the lid on the water container, in a flash Domino was in my face, on my body, with his feet and claws attached to both my arms, like a crazy attack rooster body hug! I managed to shake him off, and spray him off with the hose, but not before he left his marks on my arms. I was so stunned, and quite pissed off, that I yelled all kinds of obscenities at him, sprayed him more, and told him He Was Done, he's messed up a great life with 7 girlfriends and a super comfy ranch life. Sadly, he's just too darn dangerous and unpredictable to have here, plus it's taken the fun out of going into the hen house to collect the eggs and take care of the flock. You blew it Domino the Dominant Dangerous Rooster. Thankfully my awesome super supporter friend Susan found a home for him, with her neighbor. Now to just catch him safely this weekend, and off he goes to his new home... And yes, we had plenty of offers to turn him into Rooster BBQ, Chicken Soup, Chicken chow mein, etc, lol!

 He knows he's super handsome!

Cock-a-Doddle-Done

 Domino and some of his girls. 

Poor guy, his life is about to change and he has no idea.

I feel sad about it, but we just can't deal with his "cocky" attitude any longer

This was day 1, see the 2 claw marks?

Here's a couple days later, 

you can see the bruises!

Can't believe how fast his attack was!

And of course I worried about INFECTION

but so far, I've healed well, no infection drama!

Thank you Susan for always being so supportive

and finding crazy Domino a home!

Glad you finally made it over after, 

what, 10 years of planning?

Found these awesome fly boots for the horses

Don't you love the "CalTrans" hot orange!

And finally, with the success of the immune boosting Zarxio shots, I even got to break the Neutropenia precautions of no fresh fruits and veggies. When I went on my exciting grocery shopping adventure, I stocked up on the fresh "rainbow" I used to eat all the time. Back in the day, pre-myeloma, I'd make fresh salads daily, but not so much now with my WBCs always wavering on Neutropenic status. I even treated us to "vintage Bob's Big Boy" dressing. WhooHoo, greenery, and healthy fresh colors! Sheesh, with these semi-normal activities, I've actually felt a hint of the ol Julie. Let's just hope the success of my current triplet cocktail holds for a while, so I can "pretend" having cancer was just a mistake! 

Just a start of the "rainbow" salad

Yummy! There's cilantro, avacado, bell peppers, tomatoes, olives,

beets, Parmesan cheese, etc, hiding under that Bleu Cheese splurge there!

Thank you my loyal followers for checking in, and appreciating my crazy adventures. Your comments sure mean a lot to me, as I love knowing you've stopped by and I love hearing about your life and your journey! Hoping for little "drama" in your life, and I'll follow up with Domino's re-homing adventure, not to mention my last few days as Counselor Julie, and any interesting news that comes from my June 14 Dr appointment. 

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

Injection Rejection- Time to Grow Up and Accept my Circumstances

5.27.17

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.

 Zarxio injections 

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 

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

Surprise! Your Recent Blood Tests Show...

5.12.17
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