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

Saturday, August 13, 2016

Better, Battling Forward

Hello 8/13/16
Surprise surprise I am posting 3 days early, as so many have asked how I am after my most recent awful fever bug. I thought 13 would be a lovely date to update my status :))  Thank you everyone for caring about my crazy myeloma life as you do! Deeply appreciated.

As yucky as I still felt this past Monday, I pushed myself to show up for chemo. I had already missed the previous week, due to being so sick and feverish. I kept thinking about the irony of missing chemo to get better from this awful fever bug, yet myeloma was probably diggin in deeper without the chemo. I knew I'd better not miss another chemo week, if I could manage to go. So I went. I was quite surprised when my nurse took my temp and I still had a slight fever. Good thing I didn't check before I left home, as I probably would not have gone. Turns out that they don't really consider a fever a fever until it's over 100.3(?), and mine was 99.7, so they were ok with going forward with my treatment. I was somewhat dehydrated too, as who drinks enough when you feel so lousy with a fever?! And to top things off, it wasn't easy finding a good infusion vein, so I had several "sticks", but my expert nurses finally succeeded. Fortunately, good ol Dex steroids propped me up a bit, so I finally felt better by Tuesday. Not great, but ok! Whew, 2 more chemo treatments down.

But here I go again, trying to figure out how to live life while in continuous treatment. I'm supposed to have my chemo "make up week" this coming week, but I also have my 35th anniversary recognition at my college. Previously, (prior to getting sick) it would have been my chemo break week, so no problem attending 2 events without having to worry about post chemo/steroid side effects. But now, as a result of being sick, and missing a treatment week, I will only have had 2 weeks of Kyprolis, rather than the regular protocol of 3 this month. I know I should do my 3rd treatment week, but seriously, it's not possible to attend "normal" events close after treatments and with yucky crashing side effects. Who wants to show up to be honored and celebrated, feeling half dead and sick! Ugh, the conflicts of Treatments vs Living Life. I just can't let cancer can't steal all of my life, so I opted out of my chemo "make up week". Yes my numbers will probably Not be good this month, (due to my illness and minimal chemo), but these are the choices we have to make having incurable cancer, being continually treated. Icing on my cupcake, this 35th recognition will be my "last big hurrah" at my college, as I've finally reckoned with accepting that myeloma has stolen my career, and disability/retirement is just around the corner...

So I last left off several posts ago, that I made the decision to cut my hair. My poor little pony tail was thin and lifeless and I knew it was time. Ironically, my hair grew full and fast on Revlimid and Dex steroids, but I guess there's something about Kyprolis that thins the hair, so I knew it was time to accept a change was needed. I always had fun with my short sassy styles after my stem cell transplant in 2010, so it really wasn't a big deal to me to go short again. A a matter of fact, it's exactly 6 years ago that my hair really really thinned from Cytoxan and Melphalan. I cut my pony tail off June 2010, prior to admission to the hospital, and then I fully buzzed late September 2010.

So here's a fun Then and Now:
Pony tail chop June 2010

Pony tail chop July 2016
It's so thin and tiny,
it's hard to see me holding it here

2016- It was really really thin and tiny

June 2010 make over

July 2016 make over

2010 full buzz!

2016 mini buzz

So I'm enjoying my new hair, and great timing too, as it's really been hot this summer. Interesting, as my hair now is not as thin, and not falling out as much, and some waves are developing. It's even longer now than this pic from a month ago. I don't have a current one, as it wasn't long after this I bit the dust with my fever illness. I sure have gotten beyond my "vanity", as I'm posting goofy, not so flattering pics of me. Oh well, my life now.

Right before I got sick, my daughter went with her friend to a local "Clear the Shelter Day". She wasn't "planning" to adopt, but this little gem "picked" her, and now we have another amazing rescue that has joined our pack. Poor lil girl had been a stray on the streets, and not treated well either in her previous home, or while a stray, as she was thin and scared and timid and showed signs of abuse. The lack of love and consideration of living beings by humans, will always mystify and anger me...
She is safe with us now, and it's been a delight to watch her darling personality emerge as she learns to trust and be a happy puppy. We doggie-sit while our daughter is at work, so she's been with us a lot these past few weeks :))

So here's our new little family member: Nala!
 At the shelter, meet and greet! 
What a lil darling she is!

About a week later with us
Poor lil girl, didn't even know about "treats"

This was just after our daughter left for work
and little Nala climbed into her bag! 
How adorable is that!

And here she is being fully introduced to "ranch life"!
Anyone living with dogs and horses knows 
you can't keep dogs from snacking on horse poop!
No matter how we try, they sneak "apples" like 
humans do chocolate. Look it up! 

And lastly, remember the lil chickies we raised? 
They're almost full grown chickens now,
and happy happy in their "grown up" coop!! 

Thank you for reading and caring about my crazy story and life. Hope all is well with all my fellow patients and you're winning the myeloma battle and enjoying life in all ways you can. Truly, it's one day at time, one treatment at a time, one blood test result at a time. Life is so unpredictable, but so grateful to still be here! Cross your fingers for me, myeloma hasn't marched forward too much this month, and I'll post my labs when I have the results after 8/22.

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

Saturday, August 6, 2016

Challenge vs Battle... Which is it Now?

Hello 8-6-16
(I'm still sick... this has been a really rough bug...)

When I was first diagnosed with Myeloma, I took it on as a Challenge. I thought, "Ya right! Julie... Cancer... Umm, Noooo!" It's all a "mistake". I'll show you cancerous cells. You don't stand a chance with me. Cancer, you'll be gone in no time, and I'll be back to my "regular life, I'll show you Myeloma!" I took cancer and my Myeloma diagnosis on as just another challenge in my life. Not my first, not my last, I breathed. I really wasn't panicked or concerned. Really I wasn't. No matter how much I read, how much I researched, I wasn't really scared... just shocked. And pissed off. I trusted my Doctors, my treatments, my medical team, and I just carried on as "normal". Just another challenge, just another "project" to complete. Myeloma was just an inconvenience in my life.

Well time and treatments and illness wears one down. Chronic illness, feeling chronically ill, and being ill wears you down. Continuously being sick, feeling sick, thinking about sickness, avoiding sickness, all wears you down. For some time now, I have gone from seeing Myeloma as a Challenge to a Battle. I don't feel "challenged" by Myeloma in a positive, "I'll beat you Myeloma" feeling, like I used to. I feel like I am constantly at war, "battling", being beat up by Myeloma. I'm in a fight that is wearing me down, stealing all my helium.
To me, the difference is: a Challenge is invigorating and empowering; a Battle is fatiguing and exhausting.

I'm battling a battle I didn't "ask for", and it's so much "wasted" energy invested. (Yes I know, be it a challenge or battle, my efforts are keeping me alive, and for that I am grateful. But it's just wilting me.) When you take on a challenge and accomplish that challenge, you feel great for achieving and completing that challenge. I'm just worn down from battling and fighting, and I shake my head all the time about what happened to me. A once vibrant, energetic, full of life person, reduced to constant fatigue and illness.

I didn't think I had changed a lot in 6 years, but slowly now I have seen changes in myself. Myeloma is wearing on me and wearing me down. In the beginning I kind of snickered at having cancer. I couldn't really relate to my diagnosis. I didn't own my illness. It was an "out of body experience". I just always put one foot in front of another, powered on and did what I had to do "to feel normal", be "normal" and lead a somewhat "normal" life. I was always surprised when friends, colleagues, family were so "awed" at my "strength" and "bravery". I didn't feel extraordinarily strong or brave. I was just me. I just wanted to live life, do well, be accomplished, contribute to the world and have fun!

I got away with "not connecting" to a cancer diagnosis, because my initial treatments were highly successful. I went from around 70% cancerous myeloma plasma cells to 10%, in just 6 months of treatment! My July 2010 Stem Cell Transplant did gift me with Complete Remission from August 2010 to early 2013! (Remission preserved though, with maintenance chemo for almost 2 years, so I always felt I was in treatment.) When my numbers started to climb in early 2013, after taking a medication break, I wasn't surprised, or worried. I was actually expecting it. I always knew and accepted Myeloma was incurable and needed to be continually treated, or it would return. So again, no panic, challenge accepted Myeloma.

Again, I trusted my my medical team and I trusted my body to heal me. I trusted my medications to take the numbers right down again. And they did. Right down the IgA and M Protein came. For a while that is. Then they didn't. And then the numbers roller coaster began. Then the conversation about changing chemos began. But I still had this crazy optimism that all would always be ok for me. I'm Julie. And things always have a way of working out. I work hard for my accomplishments and I conquered my mountains through hard work, commitment and positivity.

Then things began to seem different. I began to "feel" more like a cancer patient. I began to realize Revlimid and Dex would not always save me. I began to realize I am just like all the other Myeloma patients that eventually start not doing well. I think the turning point for me was switching from oral, pill medications (Revlimid) to marching into the chemo lab 2 times per week, 3 times per month for IV Kyprolis treatments. At first it was, Wow there are a lot of sick people here. Wow, there are a lot of chemo patients far worse off then me. "Just shut up Julie about any of your ails!" I'll be ok I convinced myself. Wow, look how "sick" everyone else is. Between me and you, I even tried to not look too "good" when I went to the chemo lab. My numbers came down fast on Kyprolis and Dex. I felt back to "me" again. I almost felt "guilty" for how well I was doing. I never stopped working, making plans, trying to do things, trying to lead my normal life.

For 6 years, I never stopped trying to live my life as I always had. Sure 70% of the time I had to cancel plans. Sure I found myself going into my office less and less and less over the years. Sure I had awful continuous side effects that regularly ambushed my plans. But I always felt "it" would all just disappear and go away, because I was Julie the Optimist. I always made sure my "glass was half full". No matter what. Push forward Julie. You can do it! Sign up, show up, grin and bear it. Keep breathing, keep doing.

Who was I kidding? Ha! Yep, me! 6.8 years has taken a toll on me mentally and physically. No I'm not depressed, no I haven't lost my signature optimism. No need to call the therapist for the therapist. Actually I think I am coming down from my unrealistic cloud of denial I've been floating on for 6.8 years and finally recognizing and accepting my circumstances. I think I am finally accepting I am not a well person, I'm diagnosed with INCURABLE cancer, and I have limitations. Many limitations now. I think I am finally accepting I need to get on with life, accept I don't have unlimited time, and the time I do have, is taken up with illness, side effects, oncology appointments, chemo lab visits, medications, recovery, side effects, illness, illness, illness...

Truly I did not accept I had cancer. I just have an annoying "medical inconvenience" called Myeloma. Others had cancer, scary cancer! Cancer you could "see", remove, recover. But something's different now. I've had 3 major fever bugs this year, and it's only August. I am being "forced" to accept my circumstances. My body is tired, worn down, so fatigued and I have to pay attention, to the seriousness of my diagnosis. Stop pushing as I used to. Stop working so hard to be "normal". I have to stop trying so hard to be who I was pre diagnosis. I have to stop seeing Myeloma as a Challenge, and accept I truly am Battling for my life. I'm different now. I have been since 2009, I just wasn't willing to accept it. I'm still not... but I'm closer. Each exhausting illness slams reality in my face, forcing me to accept my status as a "real cancer patient". Continuous illness does that to you. It forces you to stare your reality in the face. Stop this silly optimistic denial Julie. Stop putting "things"off. You may not make it to 100 like you thought you might.

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

Monday, August 1, 2016

Frustrated Feverish Rant- Why Myeloma Why

I never did finish my previous post, as I got sick AGAIN! Again with a stupid FEVER BUG! Sick since late Wednesday afternoon, when my chemo nurses took my pre chemo temp and reported I had a “little fever” of 98.9. That was mid Wednesday, and it’s late Sunday now and I still feel lousy and still have a fever. I feel lousy physically and mentally. This dumb annoying debilitating fever peaked as high as 101 (Friday I think). Yes, I know... I should have gone to the Dr, but I just felt so awful. I did eventually call and chat with my amazing oncology team, and we cancelled chemo. Here's the irony: while my body tries to heal from this fever bug, Myeloma surges forward. In trying to get "well", I get "sicker"! Seriously life, the absurdities!

Allow me to vent, my invisible friends. I really do appreciate “you” being out there… but please don’t feel sorry for me. I’ll get past this current funk. This is my reality, and the reality of so many with chronic illnesses.

I woke up this morning still feeling feverish and so frustrated. Frustrated I am so controlled by Myeloma and my sickly, immune compromised body. So frustrated and sad with all that is involved with having a “chronic illness”. So frustrated and bewildered that my body has failed me. Failed me for over 6, 7, 8 years. So frustrated that I am in the circumstances I am in, at such at “young” and vital time in my life. So frustrated and sad I can’t really live my life as I had “planned and worked so hard for. Why Life? Why did you do this to me? Since December 2009, I’ve been accepting, positive, optimistic, hopeful, grateful and a very cooperative patient. I’ve lived thinking each treatment will make a difference. A real difference, a BIG difference, not just a temporary difference. I really thought I’d be among that lucky percentage that left Myeloma in the rear view mirror. Dumb. I have an incurable cancer diagnosis, and dang it, I have to accept I will never be “better” and I will never be the Julie before Myeloma. 

Yet, I find it impossible to accept my circumstances.
I should be happy, but I’m feverish sad. I should be glad, but I’m feverish mad. I should be grateful I am able to still "be here", no matter what right. I am. Truly I am very grateful when I view my circumstances in “The Big Picture”. I am very grateful for all the reasons I should be, especially for still being here 6.7 years after a deadly cancer diagnosis. I know, I am one of the lucky ones who did have a successful stem cell transplant. (Which by the way, July 29th marked my 6th anniversary of being released from the hospital.) But that doesn’t lessen the extreme sadness, frustration and anger, yes anger, I have for you Myeloma. Why was my life edited at 50? Why am I doomed to suffer forever, until Myeloma finally takes me? Why Myeloma Why? I had so much more to accomplish and share with the world.

I’ve always been a “less is more” person. Living a simple life, helping humans and animals fulfilled me. All I wanted for my “golden years” was some carefree fun with family and friends, with nature and animals. Spontaneous living, embracing the world’s beauty. Just having fun. Laughing. I really didn’t need much to fulfill my “retirement” years, as I felt I had accomplished quite a bit in my life already. I just wanted to continue to help humans and animals and be carefree. What throws me over the edge when I’m feverish and sick, is the reality of my lack of ability to just live life. To just get up and go and do. Not big things. Little things, normal things. Things everyone takes for granted until they’re sick.

I just want to feel well enough to spontaneously run errands, spontaneously go places, spontaneously do normal mundane things and "feel normal" even though I am not. I'm so so tired of worrying about germs and cross contamination all the time. All the precautions I take don't seem to matter anyway. I want to be able to just get up and go. Meet up. Laugh. Play. I want to have energy. I want to feel good, I want to play, and say “yes” to family and friends when they want to meet up. I just want some semblance of my life back. I truly can’t believe how “abnormal” my life has become. I want ownership of my body and life… but that’s an impossible illusion now.  I'm so sad... feverish sad.

When I’m feverish, there’s a lot I don’t like about me and my life:
I don’t like how awful my body feels
I don’t like that I feel sick the majority of my days, weeks, months
I don’t like how controlled I am by cancer and treatments and side effects
I don’t like how cancer and side effects have stolen my spontaneity
I don't like how cancer has stolen my silliness and playfulness
Cancer makes you more serious, and I don't like that
I don’t like what I see when I look in the mirror. Who is this ragged unhealthy person looking back at me
I don’t like “the new normal”. I’m tired of constantly adapting to yuckiness.
I don’t like how everyday normalcy has been stolen from me.
Why, Body, Why did you let me down, take me down, sabotage my life?

When I’m sick and feverish, I lose hope. I wonder what the “purpose” to all this is anymore. Yes, I’m living and so very grateful for that… but I’m really not really living. To others maybe yes, but to my standard, no. My days are all about just trying to feel ok to accomplish a thing or two. I often wonder what would happen if I stopped treatments? How long would it take for Myeloma to take over? How long would it be until I really felt really cancer-sick. How long would it be until my demise?
Maybe I should stop looking at social media and all the reminders of what I am missing. 
Stop watching Travel shows, HGTV, Nat Geo, and “Arial America”. 
Maybe stop looking at anything that makes me miss my previous life, and my lost future. 

Don’t get me wrong, I am thrilled for everyone else’s happiness, travels, events, successes and spontaneous adventures, but more and more, I am slammed with the reality of my forever limitations. I hate limitations. I never accepted my limitations. I fought limitations in my other life. I can’t fight now. There’s no point. Myeloma is what Myeloma is. It’s chronic, disabling and forever and ever and ever. 

I can’t “JUST DO” anymore, and that’s what really frustrates me. I just want to be “normal” and do normal little daily things. Do life spontaneously! Just get up and go. Think a thought, go do it. Meet up. Accept invitations. Play. Work. Help others. See others. Have energy. No planning, no worrying about the “what if”. “Just go do things” you say. No, I really can’t: 2 days a week I do crazy making steroids and Kyprolis chemo lab treatments. Those days are shot time-wise. I can't ever predict how this will affect me, so I can’t plan much those days. Maybe eating and and a minimal visit with family and animals. 

The next day… the crash can come any time. Fast or delayed onset. Totally unpredictable, so I can’t plan anything day 3. Day 4, 5, ugh, here it comes… the evil crash… the Dex steroids and chemo yuck crash. The fatigue, the GI issues, the mental fuzziness exhaustion overload from trying to be strong. The physical achiness. The dizziness. The neuropathy. The swelling. The crawling skin. The headaches. Nausea. The wind is gone from my pitiful shredded sails. The fatigue is totally debilitating. 

Day 6, 7 I begin to rebound a bit. I’m teased with a bit of normalcy, but still have all of the above, so I can’t JUST GO and DO THINGS. And then, repeat. Repeat for 3 weeks in row. You ask, "what about your chemo break week"? Well by that point my body is so worn down, there’s not much left til mid-week, and then, everything is still unpredictable. My energy is zapped. I’m still achy, my GI system still surprises me with ridiculous surprises at the most inopportune time. The fatigue is just so incredibly disabling. But I push forward. That’s just me. Push forward. Accept. Don’t complain. Appreciate. Be grateful. Glass half full always. It can always be worse I tell myself 24/7. Look at all the world’s suffering… shut up and put up Julie. And when I do throw caution to the wind and push forward, trying to be normal… I GET SICK!!! I get sick even with all my precautions and carefulness. I hate you Myeloma.

So here I am sick for the 3rd time this year thank you stupid compromised immune system. Guess this is the IgA Myeloma curse.  I know, I know… my circumstances could be sooooooooooooooo much worse. I shouldn’t even post this rant. Makes me sound ungrateful for my successful treatments and length of survival, not to mention in comparison to so many, that suffer in so many ways, that don’t have what I have. Shut up Julie. Just shut up! Shut up and torture yourself with what you're missing out on. Shut up and just be... just be grateful for the life you have...

I just want to swim in turquoise waters

And sun like an iguana on beautiful sandy beaches

And ride through green and golden pastures

And dive into a refreshing pool


On to the numbers reality game, recapping the month to month of my important Myeloma Markers, with my recent results last:

(My type of Myeloma "trends" via my IgA and M Protein levels)
(Immunoglobulins explanation)
(Normal IgA = 70 - 400, Normal IgG = 700 - 1600, Normal IgM = 40 - 230)

Date                      IgA        IgG         IgM
10/18/15              1890       240         < 18
11/18/15              1440       233         < 18
12/2/15                862         230         < 18
12/30/15              482         262         < 18
1/18/16                426         228         < 18
1/27/16                432         221         < 18
2/10/16                551         227         < 18
2/28/16                635         226         < 18
3/22/16                533         242         < 17
4/17/16                717         251         < 17
5/15/16                808         232         < 17
6/23/16               1140        267         < 17
7/21/16               1180        247         < 17
                           Yep! Up it went...

Normal = 0 ... Zero

July = 1.26
Aug = 1.01
Sept= 1.37
Oct = 1.58
Nov =  1.12
Dec and Jan = Not Detectable! thank you Kyprolis + Dex
Feb =  0.62 Ugh! Quite a jump in a short period of time (Off Dex)
March = Abnormal, but no M-Protein number mentioned (On Dex)
April =  Abnormal,  but M Protein value not detectable (On Dex)
May = .75 That's a BIG upward Trend in just one month!
June = 1.06
July =  1.01 WhooHoo.. down .05 lol

WBCs, RBCs, etc etc in the low ranges... so of course I can't fight off all the cooties out there. 

Sorry for my pitiful self absorbed whinny rant. I really do have so very much to be grateful for and I am. I truly am so very appreciative for all the years my medical team and I have outsmarted Myeloma. I am deeply grateful for every day, week, month, year I have survived when I should not have. Fevers just make me so sad and frustrated and that's what I wrote. 

Next post I will share my new hair and our sweet new little shelter rescue. 

May your lives be filled with amazing accomplishments and adventures. If you are a well person, live every day never taking your health for granted. If you have Myeloma or another awful diagnosis, I wish you strength to carry on and enjoy what's important to you. I will. I do. And I will get better. 

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


Tuesday, July 26, 2016

Where I Was, How I Was July 2010 vs 6 years later- July 2016

Hello July 26, 2016

I'm still here Myeloma. You're still trying to get me to succumb. But I'm not going to, so there!

I've always been a record keeping, sentimental data collecting geek. I still write important milestones down on a physical paper calendar, and probably always will, no matter how cool technology becomes. I've always written down sentimental important personal and family milestones on some sort of paper calendar. Looking back, I'm really glad I was able to record a bit of my July 2010 Stem Cell Transplant journey via this blog and also my trusty old fashioned paper calendar. I didn't blog in as much detail in the beginning. I wish I had, but I didn't, because I felt pretty crummy 6 years ago this month. Really really crummy! Also, I was new to blogging and I just didn't detail all my "private thoughts" out there in cyberspace as I do now LOL.  I'm a different person now, then I was pre myeloma diagnosis.

This cancer journey changes you. Battling Myeloma for 6.7 years changes you. Treating and surviving cancer changes you. Staring death in the face every day, every treatment, every blood test result, changes you. I don't feel so private about my private journey any more. I feel so many can learn from us Myeloma-Veterans. I've learned so much and benefited so much from from all of Myelomaville's postings out there. I so appreciate everyone telling their whole story, detailing their medications and treatments, their blood status numbers, who they are and how they deal with Myeloma. Who we are beyond Myeloma is also so interesting. We all have so much in common regarding our Myeloma journey, that blogging about our crazy medical details, unwanted side effects, aches and pains, life challenges, treatment side effects and (of course) our GI symptoms is common... and sadly funny. We really are a remarkable bunch of warriors, battling this "invisible" monster that is trying to do us in. Writing to all of you, about my struggles and successes, is just cathartic.

Thank you paper calendar for reminding me that 6 years ago today, July 26, 2010, I bit the scary medical bullet and accepted a Picc Line to replace all the dysfunctional individual hand and arm IV lines, that blew up every other day due to the intensity of all the zillions of antibiotic treatments from my septic Hickman Catheter. Thank you paper calendar for reminding me that my Emergency Bedside Surgery to remove my horribly infected Hickman Catheter was July 14, 2010. Thank you paper calendar for reminding how sick I became after my immune system plummeted to zero from the intensity of Melphalan chemo. Thank you paper calendar for reminding me of how much I didn't and couldn't write down, because of how sick I was, how awful I felt and how I didn't have much energy, of much of me left at all. Minuscule energy just to survive and do basic tasks was all I could muster July 2010.
Thank you paper calendar for reminding me that I was released from City of Hope hospital on July 28, 2010. Thank you paper calendar for reminding me of my month long battle to survive my Autologous Stem Cell Transplant. Survive I did Myeloma, because here I am, blogging 6.7 years later.

I'm a sentimental hoarder in so many ways, and I'm glad I am. I have boxes and boxes, files and files of all my Myeloma paperwork and records dating back to December 2009. Yes I view everything online, and actually that's my preference. But I still like the physical paper version too. I have all my lab results and treatment receipts organized in zip lock bags with monthly dates. I just like that I can look at the paper results when I want too. I like having the symbolism of my paperwork in little plastic "hazardous chemotherapy" caution bags that Revlimid was mailed in. Now on Kyprolis, I just use regular zip lock bags.. but once in a while... I have "acquired" one of these gems... sshhh...


Ok, it's late and I am waning ... I will finish posting tomorrow. My recent labs are surprising...
As always, I cannot believe I am on this journey, and I cannot believe that Myeloma has not just disappeared from my life... but when I am tired and weak, always thirsty, have crazy side effects, and cannot do 3/4 of the things I did pre 2008, and I go to chemotherapy 2x per week, 3 weeks per month...  I realize I do have incurable cancer.

CHECK BACK and I will finish my story, AND POST MY CURRENT IgA and M Protein results. Interesting... not happy, surprising... and did I mention... I did accept beginning the higher dose of Kyprolis??

Thank you so much for reading and caring!!!

And I did this....

In the meantime, read these great articles:

How you help us you crazymaking Dexamethasone! 

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

Wednesday, July 6, 2016

6 years Still Winning and Here we Go Higher Dose Kyprolis

July 5, 2010 = Stem Cell Transplant Infusion success
July 5, 2016 = Still here Myeloma! Who's Winning?

July 5, 2016 - Began higher dose Kyprolis 
July 6, 2016 - 2nd infusion of higher dose Kyprolis.


6 years ago today I was surprised to be feeling rather ok after my completely non-dramatic, anti-climatic Stem Cell Transplant Infusion. Seems like more of a Big Deal is made of the Stem Cell Infusion itself, then the intense cancer killing chemo infusions preceding the stem cell transplant-infusion.  I know now (and sure learned then), that it's really the 2 days of high dose Melphalan chemo that becomes the monster. Melphalan completely depletes the patient's immune system, systemically killing off the good and the bad cells. So many suffer so terribly from the intense chemo, which is dosed to render myeloma dead and dysfunctional. Our stem cells are infused back to regenerate our system, re-boot us to remission, hopefully eliminating, suppressing the cancerous myeloma cells for a long time. (This is a very simplistic explanation, for the real, medical scientific details, just Google in Autologous Stem Cell Transplant, and you'll get all the detailed details of the procedure!) 

Stem Cell Delivery!

Jim and Alissa there to share in the Big Moment!

I remember feeling relatively ok for a few days after the high dose chemo and SCT infusion, wondering what the Big Deal was about this procedure. Nurses and Doctors continually "warned" us patients that the "crash" (Nadir) is coming.. be warned, be ready. Follow all the recommendations for sanitized health. Wash, cleanse inside and out, swish the oral antibiotics, hydrate, move around, don't get bed ridden, do whatever you can to stay strong. Watch out for the evil mouth sores (mucositis). Eat well, but cautiously. I remember having stereo vomiting in surround sound, from the adjoining rooms on both sides of me. We all had private rooms, but the walls weren't perfectly insulated. I remember keeping the TV on 24/7 to drown out the suffering of my invisible neighbors. I felt so bad for their suffering. I vowed to not wind up like that. I barely ate, paying attention to my body's signals. I ate simply and minimally. I remember the cafe staff calling if we didn't order each meal. I learned to order something, just to order, just have it, just be left alone, but always appreciating their caring protocol. Plain baked potatoes. Clear juices thinned with water. Cream of Wheat. Plain oatmeal. Canned fruit. Nothing fresh allowed. Too much bacterial risk. Our diets were called the "anti microbial diet", or the "immunocompromised antibacterial diet", or the "Neutropenic Diet" (Google those too!). The whole point is to avoid infection at all costs, as when Melphalan thoroughly kicks your systems butt, you have ZERO immune system protection. No internal Army, Navy, Marines, Seals or Swat team to protect you. I remember feeling ok at first... then each day a little worse, then continually worse... feeling blah, achy, fatigued, sickly, depleted...

The last time I left my room for 3 weeks
 to walk my family to the elevator

Your body plummets to outrageously low blood counts. You begin to feel so awful, so sick, so yucky. It's indescribable if you've never been that sick, that weak, that incredible weakness and fatigue like non other. My goal daily was to get out of bed, grab my IV stand and (barely) make it to the bathroom, or just make it out of bed to the chair by the window. This was the beginning of my lovely lower GI issues. And I went down hill from there. And down hill I went and went. My Hickman Catheter became septicly infected. My chest insertion site was terribly infected. I had a constant crazy fever. I was really really sick. My medical team realized this. They wasted no time calling a surgeon to my room, and I had emergency bedside surgery to remove my horribly infected Hickman Catheter. I was told this was the worst Hickman Catheter infection they had ever seen. I was really really sick. I felt awful. I had no immune system to fight. My IV stand grew to bags and bags of IV antibiotics. 5 or 6 different antibiotics to keep me alive. Liquid IV nutrition and hydration at this time too. My surgery wound was awful, disgusting, seeping, oozzing infected poison. It felt gross and looked gross. This was between the 2nd and 3rd weeks. Medications now administered via hand and arm IVs. The medications blew up my poor veins. I had to have new IVs inserted daily. (That was was a big deal to me then, now, eh, whatever! used to it!) I refused a Port or Picc line as I was terrified to get another mainline infection. Oh how I suffered. I didn't want anyone to come see me. I told my family not to bother coming to see me. They came anyway. I tried to visit and talk, but eventually told them if they come, just sit, tell me stories, watch TV with me, nap with me. I watched more TV during July 2010 then I had ever watched in my entire life. My TV eventually burned out. The tech team came immediately to fix it. They knew this was our lifeline. They knew we needed the distraction and company. They knew we needed the nonsense noise to save our sanity. 

Slowly my numbers rebounded. Slowly I began to feel a bit better. I began to chat more with the staff. I was so exhausted, so depleted. Funny though, word got around the floor I was a professional counselor, and staff members would come in to chat about their families, issues, college majors and registration. I don't think they realized how awful I felt, as I still had hair, and tried to always put a little make-up on. I always tried to hard to be me. The me before cancer. The me before the "new normal me". I called that time period the "Parade of Professionals", as so many types of caregivers came to see patients. Medical Social Workers. Occupational Therapists. Recreational Therapists. Doctors, Nurses rotating, assessing, recommending, so caring, so concerned. Wonderful, dedicated staff. Shift changes. New faces, tell my story over and over again. So challenged mentally and physically. I was so exhausted. So beat up. Blood tests constantly. Measure what goes in, what comes out. I focused on "Less is More". Less of everything. Keep the eye on the goal Julie. Get well, get home. Build your immune system back up. Get strong, beat this. Eating, drinking was a huge effort. Horrible horrible acid reflux like I'd never ever experienced. Never ever. Eye on the goal. Live in the moment, don't think of the future... too painful right then... How I tried to be so strong, but I was so depleted. I felt I would never get well or never get home.

They let me know the only way I would ever be released would be if I could swallow my meds, and get off the IV meds. Have you ever seen hospital issue Potassium pills. OMG, huge! So I asked for a liquid syringe. OMG that was even more awful. The taste gagged me. I said I would try to eat a banana a day. I said I would try to do a lot of things. I did try. Sometimes successfully, sometimes not. My whole day was trying to get nutrition in, have it stay in me, and make it successfully to my little bathroom just mini steps away. I remember I had Jim bring me juice Popsicles. I would be so parched in the middle of the night. I'd push the buzzer and ask for a Popsicle. That appealed to me and stayed with me. That little event, a huge task. The staff was so wonderful. Always offering help. Me, always too independent. I tried too hard to do too much on my own. 

 Wonderful amazing staff members! 

Keep the TV on. Focus on the goal of getting well and getting home. Home seemed like a fantasy, as distant dream. A non reality. I became very emotional about everything. I didn't want to think about home, my family, my animals, my college life, my life beyond the hospital. Broke my heart, as I felt so broken. Felt like I would never ever recover. When the medical staff talked about my potential release, I begged them to not talk about it, if it wasn't going to happen soon. They told me again, the only way I could be released was to accept a Port or Picc line. Wonderful professionals came in to see me. To describe the procedure. They brought in the BEST technician, nurse, doctor who had been doing this for over 25 years and was going to retire any day. She said I could be her last Picc patient. I finally agreed. I was so scared. Scared of another septic infection. I accepted my situation. I agreed to the Picc line. The procedure was no big deal! Fear can be crippling. I was released a few days later! I don't think I have many pictures from this time period. They may be on my little old Razor phone. I think I deleted so much, as I didn't want the memories. It was a very very painful, challenging time in my life. Being isolated for a month in a hospital. You don't own your life. You are not in control of much of anything. You stare death in face 24/7. You wonder if you'll make it. You feel so awful, then suddenly, so ok. One of my Doctors later told me, he always remembered me, as I was the only patient that never unpacked. Yes, I left my clothes in my "carry on bag", on a chair, and I never unpacked. I never thought I'd be an isolated super sick inpatient for a whole month. I made it myeloma, and here I am recounting my 6 year stem cell transplant anniversary! 

July 5, 2010 - July 5, 2016 


So we'll see how this new regimen of higher dose Kyprolis goes. Of course I was scared and hesitant to increase. Still am. But I did, yesterday and today. Always trying to preserve my organs. Organ failure is too common in myeloma treatments. I know of too many that tried too hard to reach remission. They did, but they over burdened their vital organs and didn't make it. My first day of this higher dose infusion stung a lot. I was dizzy and fuzzy afterwards. I should not have driven home, but I did. Always trying to be too independent. I always follow infusions with a lot of hydration via IV, plain water, and cranberry juice diluted with a lot of water. Cleanse those organs. Today, I asked my nurse to slow the infusion down. That was magic. No pain, just a little stinging. If you do IV infusions, don't rush it. Everyone is rushing about. Rushing to get to the next event. Rushing this, rushing that. Focus on the moment. Breathe. Make the moment matter. Make the moment comfortable. Speak up. I've learned. It's ok to not be strong all the time.

Today's chemo lab higher dose Kyprolis survival selfie. 
I wonder what my "crash" will be, 
when Dex Roids wear off and this kicks my butt..
(Here's a great list of current myeloma meds)

My stupid, ridiculous horse poop trash can tripping and diving injuries are healing. I have lovely purple and yellow bruises on my face, arm and leg. But I am better. I hurt, I'm still swollen, but I am laughing more than I hurt. Live your life. Have fun. Be careful, be deep, be thoughtful, but be silly. Find joy in everything that is joyful to you. Yes, I'm right back out there scooping poop. I laugh at the contrast of being in the chemo lab for serious cancer chemo infusions one moment, then the next I am doing ranch chores. My horses (and all the other animals) have no idea my circumstances. They just want food, water and scratching. I love my life beyond cancer. I am very blessed and very grateful.

It's late, and I wasn't going to ramble and write this much. It just happened. Day 2 Dex to blame lol. It's really late, but so serene and peaceful. I have the windows open, there's a soft warm breeze coming inside. I've been hearing a hoot owl hooting for over an hour. Sounds so magical, mysterious. Makes me feel so alive, so grateful. I never ever forget that I've cheated death for 6.5 years!

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

Friday, July 1, 2016

6 Year SCT Anniversary Reflections and Memories plus Current Stats and a Hilarious Story!

Hello July 2016

Can it really be?
In just a few days, it will be 6 years since my July 5, 2010 Stem Cell Transplant to save my life from Myeloma. Wow 6 years ago!
I was in such a naive, denial fog back then. Truly I really had no clue what my diagnosis really entailed, what I was in for regarding treatments, and how long this journey was going to last. I seriously thought I'd just get some chemo, loose some hair, suffer a bit, eventually be ok, and that would be that. Well that did happen... and life moved forward... but I really thought that would be it. I just didn't connect with my incurable diagnosis, and long term treatment life sentence.

Well here I am 6+ years later, still in this battle, still doing chemo, still losing my hair, and even more exhausted than ever, but more in touch than ever with what this cancer journey really is. It is forever. Myeloma is forever. Chemo is forever. Being in treatment is forever. A crazy lifestyle that I will never get used to. But so thankful I am here for my 6th Stem Cell Transplant Anniversary!

Reflecting on anniversary #6 sure makes me grateful and thankful to still be alive. Back in 2010, I think my statistics were quite grim. My doctors really didn't want to say what my timeline might be, but they did always refer to my case as "high risk". I'm pretty proud to be here 6.5 years later after diagnosis. So many I know through blogs, myeloma sites, support groups, the chemo lab etc, sadly are not. Some go faster than others, and some have longevity that blows my mind. I battle forward daily, accept my reality better each day, each treatment, and each time I receive my blood test results.

July 5, 2016. My 6 year Stem Cell Transplant anniversary. I think that's pretty remarkable to have survived this deadly cancer 6.5 years!

Here's a quick little trot down memory lane of that life saving experience. 

Here I am after my Hickman Catheter surgery June 2010

I had no idea this thing would be so invasive
and eventually cause me tons of SCT inpatient complications
with the lovely Staphylococcus Aureus, that nearly killed me

In prep for my SCT:
Thank you Nurse Jan for all our Neupogen injection adventures
and helping build my stemmies up for collection

After more than a week of Neupogen,
my very abundant stemmies were ready for harvesting

Here they are! My 9.5 million stemmies collected
in just 2 days,  June 2010

Soon Cytoxan got the best of my hair,
and in prep for Melphalan, bye bye blonde pony tail
Thank you Christine

Hello City of Hope inpatient status
I'm all puffed up from Dex steroids and hydration fluids
Hello 2 days of high dose Melphalan killer chemo

My sweet chemo nurses chaperoning me outside my isolation room
on the 4th of July

July 5, 2010
Hello Stem Cell Transplant infusion- 
There's my sanitized life saving stemmies, special delivery!

Truly, I had no idea what I was in for, and what the "crash" is all about
If you want to read my journey, check out my June and July 2010 blog posts

And now for my current July 2016 status:
Well... you all probably guessed that my overly optimistic (naive) perspective, along with my low dose approach, my skipping treatments, taking breaks because I have too much to do, and those dang chemo treatments interrupt my life, along with my I'll be just fine, never mind cancer attitude... eventually caught up with me... So here I am reporting in, that myeloma did in fact progress this June. Yes, you can say: "told you so Julie"! Here's my numerical reality check:
(My type of Myeloma "trends" via my IgA and M Protein levels)
(Immunoglobulins explanation)
(Normal IgA = 70 - 400, Normal IgG = 700 - 1600, Normal IgM = 40 - 230)

Date                      IgA        IgG         IgM
10/18/15              1890       240         < 18
11/18/15              1440       233         < 18
12/2/15                862         230         < 18
12/30/15              482         262         < 18
1/18/16                426         228         < 18
1/27/16                432         221         < 18
2/10/16                551         227         < 18
2/28/16                635         226         < 18
3/22/16                533         242         < 17
4/17/16                717         251         < 17
5/15/16                808         232         < 17
6/23/16               1140!!      267         < 17

Normal = 0 ... Zero

July = 1.26
Aug = 1.01
Sept= 1.37
Oct = 1.58
Nov =  1.12
Dec and Jan = Not Detectable! thank you Kyprolis + Dex
Feb =  0.62 Ugh! Quite a jump in a short period of time (Off Dex)
March = Abnormal, but no M-Protein number mentioned (On Dex)
April =  Abnormal,  but M Protein value not detectable (On Dex)
May = .75 That's a BIG upward Trend in just one month!
June = 1.06
             uh oh... :((( 

Ok, don't yell at me too much... I have enough grief from my family, medical staff and friends. Yes, I'm super stubborn about treatment, scared to increase my doses because of fear of organ failure, and I'm scared of worse side effects than I already experience, etc. (Barely made it to and from the June weddings due to GI catastrophes!) 

But I got the message loud and clear yesterday at my monthly oncology meeting, that I really do need to up my Kyrprolis dose. So yes I will. I will start the higher dose this coming week, ironically on July 5, my 6 year SCT anniversary day! How appropriate and ironic is that! Additionally, I confessed that I had been taking a full break of everything on my Kyprolis off week, and I wasn't taking my weekly Dex steroids on my break week. Ugh, I just wanted a few days to feel a bit "normal". Ok, Ok, I learned my lesson. Myeloma is stronger than me, and I have to behave. So no more medication breaks for me. Here goes more intense Kyprolis beginning next week, and dang you Dex, every darn week. I get the message myeloma. I can't slack off, let you become more powerful and win. Not a happy camper here, but my blood work is my reality check. I will behave this month and see what happens. Promise.

 Have you ever seen a multiple flower sunflower plant?
We can't believe the dozens of sunflowers growing from one stalk!

So beautiful! I'm so lucky to still be here to inhale life like this. 


So just a bit ago, I was outside preparing our horse arena for a dump truck delivery of sand. (Yes, the horses have it really cushy out there.) We keep the corral very clean, picking up the poop 2x per day. Don't laugh, but this is my source of exercise. Walking, scooping, lifting, walking, scooping, lifting... repeat, repeat, repeat... I purposely put the the "green waste" trash cans at the opposite sides of the corral for additional FitBit Steps.  

 Today being chemo crash day, I'm draggy, groggy, dizzy and just not feeling great, but had a lot happening outside, so I didn't have the choice to just park myself inside, as I should have. Yep, I really should have just stayed inside, because this craziness just happened to me... omg!! so ridiculous, so dangerous, but so incredibly hilarious!

Here's the story:

I went to move the horse poop container, stupidly, with the lid open, hanging down, when suddenly I tripped on it, or it caught on a rock, or my foot got caught.. and boom, over the can went, catching me, tripping me, throwing me half on top, and half in the can, FULL ON FACE PLANT INTO THE HORSE POOP, into the trash can face first! My face got caught on the edge of the can, pushing my neck backwards, as my body splayed across the can.. then I fully slipped into the manure, head first!  

I couldn't believe what was happening, and I truly thought I had broken my neck, as I couldn't move for half a second. How I got myself out, I don't know. But I do know this was the stupidest, yet most hilarious thing I have ever had happen to me. Immune compromised chemo cancer patient falls head first into a trash bin full of horse poop! Yep, that's my life! I am so bruised, so sore, so achy. The left side of my face is scratched, bruised, bleeding and swollen. Probably have bacteria growing in it now... my legs and arms are bruised and cut and I have a killer headache. But, no time to clean up and whine... the dump truck delivery guy pulls up, as I'm wiping off green poop and red blood. 

Want to see a picture?... I think I should go shower first...   
My life... it just gets more hilarious each day! 

Ok, here I am with my lovely facial injuries. I normally wouldn't post a pic of me looking like this, as I am a bit vain, but it's too ridiculous and funny to not post. I also have bruises on my left arm and leg and my back and neck are killing me :(( Sooooooo stupid of me! I'm not very good at selfies either! Note how thin my hair is too..

I will be more black and blue in the days to come
And for your final laugh, just picture a trash can like this, filled with horse manure, tipped over, with me head first into it! Seriously ridiculous! An immune compromised cancer patient on chemo, head first into horse poop! I hurt so much where I hit, but my gut hurts more from laughing at what I did to myself!!! 

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

My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells

July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!

And you can read my whole story from that point forward in this blog!

What is multiple myeloma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.

When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.

Multiple myeloma is characterized by several features, including:

Low blood counts

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.

Bone and calcium problems

Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)


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.