Thanks for Stealing My Life Myeloma

Hello 8.26.16
I'm moving like a sloth today, thank you Dex crash, Chemo crash and low blood counts. How about a pictorial update this time!

~ Poof! 35 years as a college counselor... my 35th anniversary recognition celebration recap. So nice to see all my colleagues I rarely get to see anymore.

2017 will be my last... thank you myeloma. Proud I hung in there for 35 years!

Tuesday night's smaller dinner celebration recognition of long term colleagues

Chancellor Dr Dianne at Friday's all-staff Opening Day Celebration
She's such an inspiration, and I admire her so much! 

The "Godfather of Counseling", Dr Al
My Counseling mentor and friend for life!

Friday's all-staff Opening Day celebration. Hundreds of colleagues there

Should have worn a mask, but cross your fingers, I'm still ok!

Without Dr Al and Dr Dianne, (and Joan and Bob)

I wouldn't have ever been Counselor Julie
Love you endlessly and thank you for my COC life!

Hard to believe this chapter in my life book will be coming to a close in 2017. I always thought I would be Counselor Julie forever. Becoming the lil ol lady who's been there since dinosaurs roamed the college hills. Never did I ever think my career would be edited for me, due to cancer. As I've written before, I pushed myself to work during initial treatments, returning back just "months" after my July 2010 stem cell transplant, working while on maintenance chemo, immune compromised, etc, continuing to work after relapse in 2013 to present, while in continuing chemo treatments, so fatigued, so immune compromised, with crazy side effects. What a dedicated goof I am! But I just love helping students realize their dreams and goals, love the mission of our college, and I have so much passion for the educational environment, my students and colleagues. Seriously, it's not an easy decision to give up half your identity. So very fortunate to have had the wonderful career I've had, for 35 years! I still feel half my age (mentally), with so many unfinished, unrealized plans... Hard to process...

~ My Numbers update: 
Not good as I suspected due to the steady upward climb for months now. Conversations with my local oncology team and my SCT team are: "Maybe time for a medication change Julie"... (as sadly Kyprolis may not be my magic elixir anymore I have to acknowledge)..."Time to change to something else soon Julie" they suggest... Ugh, Cccchange... again. I was hoping Kyprolis and I would be friends for a while... Oh well, such is the nature of myeloma, right. No matter how it is medicated and treated, it will always outsmart any chemo fighting it. I'm finally accepting, myeloma is stronger than my ability to keep it consistently controlled. Next in line will most likely be Pomalyst. We'll see.. the plan though is to stay the course with Dex and Kyprolis for another month or so...

Lol- my arm looks fat and distorted here! Just the camera angle.

I'm IgA Myeloma:

(Normal IgA = 70 - 400, Normal IgG = 700 - 1600, Normal IgM = 40 - 230)

Date                      IgA        IgG         IgM 
8/20/15                1530       258         < 18
9/13/15                1770       268         < 18
10/18/15              1890       240         < 18
BEGIN NEW KYPROLIS + DEX TREATMENT:

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
8/17/16               1540       238         < 17
                Yep! Up it went...

M Protein: PROTEIN ELECTROPHORESIS RESULT, SERUM
Normal = 0 ... Zero

July = 1.26
Aug = 1.01
Sept= 1.37
Oct = 1.58
BEGIN NEW KYPROLIS + DEX TREATMENT: 
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 
Aug =  1.58 
Up again... back to where I was in Oct 2015

Awesome Nurse Josie!

My veins are tired. 2 sticks on Mon and Tues :(

I remember arm IV's from my 2010 SCT!

Awesome Nurse Tracy

~ Did I ever tell you about my "cover girl" status for a myeloma magazine? 

Have you seen me in your oncology hematology office yet?

I was interviewed waaaaay back in November 2015 and the magazine is just now being published! Unfortunately, things have changed quite a bit for me since the interview, and I am not doing as well now, as I was then. My hair was still full from Revlimid and Dex, and now it's thinner and short. Kyprolis and I were best friends (see my stats above for Dec - Mar), and I was so hopeful myeloma would be controlled for loooooong time. I laugh at the front cover quote: "I feel more alive than ever"... as that was in reference to when I am on steroids LOL!, or my excitement that Kyprolis was working so well...  

My interviewer Debbie was super positive, caring and a really sweet person. She wrote the article from a positive, all is great and well in myelomaville perspective. I appreciate all the effort that went into interviewing me, the photographer Dana's personalized photo session, and all the effort the editors and publisher have done to make this a great magazine for myeloma patients. I still haven't seen the physical copy, but you can read online here at Guide2MultipleMyeloma and Patient Stories and HealthMonitor.  It loads really really slow, so be patient (lol no pun intended!). I have to let them know something's up with their website. 

~ And I have a psychological/philosophical question for you... But I'll do that next blog, as this post long enough!! I asked my Doctor a difficult (timeline) question, and received an answer I didn't quite expect...

Crazy how fatiguing myeloma is! I push myself so much, but my helium tank is empty

Thanks for checking in and reading and caring about my myeloma journey. Let me know you've stopped by, tell me your story, and where you're from!

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

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! 

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!