Double the Roids.. Double the Fun.. Double the Crash!

Hello 9.26.16
Thank you everyone for always checking in and caring about my life and Myeloma status!

Roid Rage coming:
Oh yes, here we go again. So at my last Dr appt, we discussed the upward upward trend of my numbers. My Dr suggested we try upping my Dex steroids from 20mg to 40mg per week. Here we goooooo! So rather than doing 10mg + 10mg on my Monday, Tuesday Kyprolis infusion days, I will now do 20mg + 20mg on my Kyprolis infusion days. WhooHoo... hellooooo mega steroids again. Back when I was first treated (January 2010), I started on 40mg per week. Then I had a horrible awful allergic skin rash reaction to Revlimid, so we upped my Dex steroids to 40mg, 4 days on, 4 days off for about 5 months. Whoa! can you imagine that?! Fortunately, my Myeloma hates Dex steroids, so my numbers came down fast back then. Hoping for a similar reaction now.

Helloooo 40mg per week now!

So not the news I wanted hear at my last Dr appointment:
Booooo on you Myeloma. I know I say it over and over again ad nauseum, but I really thought I would be "just fine" and Myeloma would stay out of my life for a long time, or I would get a lot of mileage out of each type of medication I was on. Guess I was spoiled by the on-going success I had with Revlimid. The combination of  Dex and Rev really brought my numbers down during initial treatment January - June 2010 and my subsequent (post Stem Cell Transplant) Rev maintenance for 18 months. When I came out of remission summer 2013, Revlimid again to the rescue. We started with Rev 5mg for about 6 months, then upped to 10mg for about 9 months, then alternated 10mg with 15mg until we switched to Kyprolis November 2015.

Thinking about this, I had many many years of roller-coaster success with Revlimd. No doubt Rev challenged me like none other! Oh boy did Rev challenge me... and gave me GI reactions that were horrendous and hilarious all at once- (see my previous posts chronicling my many ridiculous GI "close calls" and "near disasters")! So I really thought I would have "years" of similar success with Kyprolis. Truly I am surprised my body is burning through it's effectiveness so fast, but actually, I shouldn't be surprised. This is Myeloma's (incurable) reality. Crazy how powerful cancer cells are.

Here's my numbers reality from my most recent labs:
Note how my IgA jumped 570 points in just a month. I'm 5x the high end of normal now. Booooo!! Haven't seen this level since a few months into initial treatment in 2010. Yes, it's a wake up call to me...
Similarly, my M Protein jumped .67 points in one month. Since zero (0) is normal, and I am now in the 2's, that's significant. Haven't been there since early 2010, right after diagnosis. Yes, all this is a wake up call...

I'm IgA Myeloma type, so we follow my IgA and M Protein for my status:

(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
9/15/16               2110         212         < 19
Up it went...way up :(

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
Sept = 2.19
Up again... way up :(

The new plan: Doubling Dexamethasone
Here I goooo. Here come's the "bi polar", waaaaay up high for 2 days, then the harsh crash down for 3 to 4 days. It's such a crazy way to live, and I will NEVER ever get used to it. I like steady and mellow, not super highs and super lows, with all kinds of annoying physiological side effects: Nausea, diarrhea, swelling, headaches, extreme fatigue and exhaustion, dizziness, metal mouth, extreme thirst, body aches, neuropathy, sleeplessness- to too sleepy, and just the overall yucky yuck feelings. It's like having the flu for 3-4 days EVERY FRIKN WEEK OF YOUR LIFE.  And should I mention the crazy Psychological effects... where I am full of love, hope, humor and non stop conversation for 48 hours, then boom, the crash, and I want to scream out my frustration and "anger" at my situation and "punch" anyone that pushes my buttons! But I should shut up, as so many Myeloma patients have it much worse than me.. Counting my blessings always!

 

Aren't we cute! 

Crazy how I can look ok on the outside,

and be such a sickie on the inside...

Yes, I've never really fully wrapped my head around "being a cancer patient". It just doesn't fit my personality. On "good days", I try doing a fun event. On "crash days"... well you know where I am. I just feel so yucky ucky. But I still FORCE myself to do things no matter what, when energy and my GI allows me, as I realize more and more.. I have to LIVE LIFE EVERYDAY TO "MY" FULLEST.

So a while ago, I wrote a spontaneous (short lol) list of some of the ridiculous things I do, that a cancer patient really shouldn't do. But then again, I read blogs and articles of my peers, and they're out bouncing around too, trying to make the most of the situation and "the timeline" we don't know. My life and activities seem mild compared to so many of my Myeloma peers!

Here's my list of Funny Things I Do (and probably shouldn't do) as a Cancer Patient:

Take "care of" our 19yr old cat in Diapers. Yes I glove up!
Held my chickens, and wound up with a Badly Infected Finger (see below)!
Raking horse poop is my exercise-
But I wonder if breathing horse corral dust is smart?
Breathing horse Fly Spray (maybe that gave me Myeloma?)
Remember my rescued Sparrows, changing their cages often.
Changing our Box Turtle's water (yes I wash thoroughly always!)
Cat. Litter. Boxes. We have 3 (exclusively indoor) rescued kitties. Window open, hold breath!
3 (rescued) Dogs. And now "grandparents" to our daughter's new shelter doggie Nala.
1 Betta Fish. I change the water frequently. Yes I wash thoroughly!
Drive my vintage VW Bug.. Oh those 1970's exhaust fumes... fueling Myeloma??
Ranch chores I shouldn't do. Ouch. Shouldn't have done "that"..ouch!
I try to be normal and plan events... but I'm sooo fatigued.
Cancel is my middle name now.
Still say YES to things as if I was well, then have to cancel.
Taking care of everyone else. Yes always Counselor Julie!
Tired, tired, tired, but I don't nap or rest much. Even on awful crash days.
I push myself too much, everyday, in every aspect..
And of course being Mom and Wife.. that role will happily never end!
And that's just a sample of my busy ridiculousness!

So I wound up with a weird cut on my right hand ring finger:
Not sure how I did it. From the animals or plants or something that cut my cuticle area. It became inflamed and ouchy, but I thought it would "just go away". I always healed on my own. It got worse. It didn't heal. It had puss and hurt. I wash my hands thousands a times a day. Thought that would cure it. I sprayed it with alcohol zillions of times a day. But I went on with all my animal chores and animal fun. I can't not take care of our zoo! I wear gloves for animal chores... well most of the time.. Cut it again. Hit it again. Scratched it again. More and new cooties invaded.. Have no idea why that area became such an impact point for me. Must be because I am right hand dominant. I held one of our new chickens. Her foot slipped and of course, her nail went right into that spot. Right there! Cut it again. Tore it. Ouch! It got redder and more inflamed. It hurt. I tried to squeeze the pus out. It seemed like it wanted to heal. It really looked gross. Oh, it will be better tomorrow I convinced myself. Wasn't really healing. Tried Hydrogen Peroxide. That seemed to help a bit. Fizzled and cooked it lol. Everyone said to have it checked and get on antibiotics. I thought I would heal on my own. I always did. Ooopps... that was when I had a "normal" immune system, stupid! So I showed it to my Dr at my last appointment... You know, the appointment where I also got bad Myeloma news. I almost forgot to show her. She said, "ooohhh, that looks bad, let's get you on antibiotics!... any allergies?" ... "Yes, all the Penicillin types and Sulfa types" I replied, as she checked my chart and confirmed. Hello Doxycycline pills for a week. Nope, make that 2 weeks.. my chemo pharmacist confirmed today, when I was in the chemo lab. I know, I'm so stubborn and in such denial of my critical health situation. I just think it's all going to go away, I'll get back to my old normal, and my immune system will kick in. Ha! How do you spell STUPID? Me!  Here's the pictures. It's like there's a little hole in my nail from the infection eating away.. I know.. STUPID!

This was after several weeks of trying to heal on my own-

Before antibiotics

Today, much better, right!

Thank you Doxycycline...

Or was it my immune system (lol)

Ok, this post wound up longer than I'd planned. I have another story I will tell next time about my Dental visit that wasn't, due to my compromised immune system. Oh, did I mention, my WBCs, RBCs, ANC, etc, are all well below normal. So what's new right? Not Neutropenic yet, and hope to not be... altho, me and Neupogen got along just dandy back in 2010!

Thanks for checking in and reading my crazy tale. If you're a Myeloma patient, I hope my stories inspire you and don't worry you too much. As "bad" as I'm doing, I'm "relatively ok" and super proud that I'm nearing my 7 year diagnosis/survival anniversary!! Whoo Hoo! 7 years in December!
If you're one of my "healthy" friends, colleagues, family.. stay that way please, and enjoy my stories and rants.

Lastly, here are some great reads for anyone, cancer patient or not. I really enjoy the posts on The Myeloma Crowd, The Mighty, The Myeloma Beacon, The MMRF, The IMF and all the others I have linked to the right here and below my blog posts. Here are some individually linked articles too:

http://www.myelomacrowd.org/myeloma-101-dex/

http://www.myelomacrowd.org/myeloma-101-more-on-protease-inhibitors-velcade-kyprolis-ninlaro-how-they-help-combat-myeloma/

http://www.myelomacrowd.org/phase-3-studies-show-kyprolis-carfilzomib-extends-progression-free-survival-relapsedrefractory-myeloma/

https://www.facebook.com/ChronicIllnessOnThemighty/

https://themighty.com/2016/08/what-its-like-wearing-a-surgical-mask-in-public/

https://themighty.com/2016/08/what-i-didnt-know-would-happen-when-i-became-chronically-ill/

https://themighty.com/2016/08/why-i-wont-apologize-for-having-fun-while-sick/

All these groups have wonderful Facebook groups and posts too! Thank goodness there is so much wonderful information out there! Not to mention all the research and new meds in the pipeline for us!

Until next time...

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

So Many Events, So Little Energy! Rock on Break Week!

Hello 9.18.16
Darn I missed posting on 9.16.16 as soooooo much happened this past week. I started my 9.16.16 post, then life happened :)) I pack way too much into my chemo break weeks, as that's when I feel a tiny bit "normal"! (I think I'll "cheat" and postdate this back to 9.16.16 just to keep my 6's tradition for 2016 :)
I'll skip writing a major newsbreaking post for now, and post my current status after my next Dr appointment this week. Hoping for good results...

Wow! This week was incredibly busy, too busy, but in a wonderful way, with notification of several recognitions and a speaking event at a Cancer Survivor's Day. I am so very grateful for all the recognitions and appreciation of my philosophy and outlook on life. People say I am so positive and my perspective is so great. Well... that's how I've always been. Cancer really hasn't changed me that much psychologically, just physically. If cancer would just go away, I could get back to REALLY being me!

Cool pic my daughter took :) 

 My heart is full of gratitude even though my body is so exhausted. Crazy how I could handle so much prior to my myeloma diagnosis. Back to the chemo lab tomorrow. Mon Tues. Mon Tues. Mon Tues. I can rest when I'm hooked up. Chemo treatments are my new "spa treatments" lol...
   

Thank you for caring as you do, and following my crazy cancer trail ride.

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

Some Days Imodium, Some Days Prunes

Hello 9.6.16

Oh Myeloma, you are becoming too predictable in your unpredictably! I make plans, I change plans. I think I'm ok, I'm not ok. I feel well one moment, and awful the next. I can "tell" now when I am "worse", I can just "sense it" myeloma. Then my lab results confirm it. I've sure learned a lot about life, myself and my physiology in 6 years 9 months. I know my body, I know what's happening.
Truly now, living life one day, one week, one month at a time.

In 2008/2009 prior to diagnosis, I was in denial. Actually it was "selective ignorance". With little cancer history in my family (except 3rd gen cousins on my Dad's side with breast cancer), it NEVER crossed my mind that my symptoms and side effects then, represented anything more than "normal" physiological changes, allergies, stress and calorie-counting, minimalist eating (almost vegetarian, as I love animals too much to eat them). Being the intuitive aware person I am, I was very aware of my exhaustion, extreme fatigue, crazy bleeding, losing weight, dizziness, headaches, GI issues, food allergies, bone pain, etc, but I "ignored" the symptoms and wrote it off as "too busy at work", "too busy with family and animals", " it's just this time in my life, getting older", "allergies", "female change of life", blah blah.
Stupid me! Bleeding out for years is just Not normal! I look back on some of my "bleeding out" experiences with humor and horror. Sometimes I would just stand over my sink and just let my nose bleed until I felt light headed, thinking "ok, nose, time to stop bleeding from "allergies". Stupid! Times during "that time of the month" I would bleed like crazy (I'll spare you the details).., I got so I would only wear black pants, "just in case". I wouldn't let myself think something was actually "wrong" with me. I really truly just thought it was a "phase in my life".

Eating the "healthy rainbow" sure didn't prevent myeloma in my case!

Fast forward to now.
I can sure tell now when myeloma is "winning" and the meds are not stronger than the battle they are fighting. I can just feel it. The Fatigue. Achiness. The lack of physical "helium". The Headaches, Dizziness, GI issues, and the Unquenchable Thirst. Ugh, I drink water like a fish, and still I feel so thirsty and dehydrated. And then..., my lab work confirms my intuitions and suspicions. WBC's low. RBC's low. ANC low. Platelets low. Hemoglobin low. Myeloma markers up. The return of GI issues. Yep, myeloma you're "slightly" winning now. Crazy how I can feel you brewing, swirling, churning up disaster throughout my body.

Yet, I still feel so disassociated (mentally) from this whole experience. I "force" my life to be "normal", fun and productive (on good days that is). I just go about my life, saving other lives, as if my life was ok. I am not a panicker. I'm not a worrier, and I have really reduced most all stress in my life. Actually, I have always tended to under-react to things I should be reacting more intensely too. More than ever now, I am following my old adage "You Can't Control The Things You Cannot Control, So Analyze It, Understand It, Accept It, Move Forward". But there are those times when suddenly it hits me: I HAVE INCURABLE CANCER. I know I am going to get sicker than I ever expected, and I'm going to leave this earth... sooner than I "planned"...
I physically feel you creeping further into my life myeloma and I realize I have little to no control. It's a very strange, surreal feeling. After 6+ years of treatments, 7+ years of symptoms, I "know" you myeloma! You are the monster that lives within me.

So with all the reading I do about myeloma, all the blogs I follow, all the posts I follow, all the research I read to stay informed about current and new medication options, it hits me there will come a time I will exhaust all my medication options. Wow, it hits me: I REALLY am not in control of my body. Medical science and medical research (and all the brilliance behind that...) controls whether I live or die. So when I have run through all the myeloma meds.. What then? Start over again? Go back to meds that stopped working and see if they may work again? Try higher doses of ones I've become "refractory" to? Agree to another stem cell transplant, if I am even eligible? Participate in clinical trials? What happens when I run out of options? What would it be like to not be in treatment at all? What would happen if to me if I didn't have anymore chemo or medication options, or if at some point I just reached my limit of being in treatment and decided, ok, enough. No more treatment, no more meds... let nature takes it's course...

I asked my Doctor this last month...

Here's how the conversation went (after going over all my labs and concluding I will need to change to another treatment soon).
Me: "So my amazing Doctor, let me ask you a question that I know you don't want to answer"... "Not to worry, I have NO intention of doing this", I reassured him... "but me being me, I need an honest "reality check"...
"What if I decided to not treat any more"... "What if I decided that's it, I'm done with meds, tired of side effects, and I just want to live life "freely"... (I take a breath, and so does he and so does my hubby Jim)... I continued, "So How Many Years Would I Have, If I Decided To Go Off All Meds?" .... pause ... "Months", he replied. I thought he may not have understood what I asked, so I rearranged my question and restated it: "Sooooo, if I decided to not treat anymore, how many YEARS would I have?"

He leaned closer to Jim with a smile and said, "You know I am not God, and I don't have a crystal ball, doctors are only human"... he continued after a pause... "If you chose to not treat any more, and go off all meds, you would have months"..."Your treatment medications are keeping you alive".

Saaaaay Whaaaaat? Process Julie, Process. What? Huh? Ok, move forward, respond.

"Ohhh, wow... really...well ok..."months"... "Soooo... if we really wanted to do that Hawaii trip I keep mentioning, it's time, right?" Me being me, I need further reality in my face...

"Yes", he replies, "do whatever trips you want, but be aware your immune system may not be able to handle all the potential infections out there"... (We discuss and recount what happened in 2012 when we went to Hawaii and was sick for most all of the trip.)

"Travel may not be the best thing for you Julie, but I understand", he comments. "It's not necessarily the myeloma itself that will "get you", it's the (potential) complications and (potential) organ failure and compromised immune system, that "gets" most patients..."

Process, Julie, process...

I ask: "so when would be the best time for me to take a trip, if I decided to take the risk?" He replies, "Actually, the best time would be between your upcoming medication change."That would be an ok time to take a little break, go on a trip, then begin the new treatment"... "But be aware", he continues, "something could happen on the trip (like 2012), and this trip may not turn out to be what you "expect" it to be... your energy, stamina, compromised immune system..."

 Process, Julie, process...

I love this Doctor. He's intelligent, insightful, caring, thorough, goes along with my blunt, direct and joking personality. We understand each other. He thinks I'm a bit "off the wall" and nutty, and that's good, I am. I'm not the typical cancer patient. I'm verbally direct, mentally strong, and want reality. Always, reality.

Jim and I drive home just like any other appointment. Navigating the freeways distracts me and forces me to focus on safe driving. I always drive. "So Jim, did you hear what I heard?" Jim's eyes are moist and emotional. "I did", he says... "Did I really hear "MONTHS" I ask him. Jim is having a hard time. We're trying to process what we heard. Did we misunderstand. Hear wrong. We talk about what we "think" we heard. We talk about what it means. Surreal. Unbelievable. Hard to digest.

Process, Julie, process..... Myeloma is Incurable. I've known this from the moment of diagnosis. Myeloma is "treatable", but myeloma is chonic, myeloma is forever. Myeloma changed my life forever and continues to.
Process, Julie, process...

  ****************

So it's been so hot I haven't taken my lil bug out for a spin in a long time. The other evening, I finally felt I had the energy to clutch and shift, so lil "Bucket List Bug" and I went for a short spin around the block. 

Sunset over Bug

***************

And we have a Rooster! 

Our little grayish/blackish chickie became

"Domino" the Rooster. 

He crowed his first "cockadoodledo" the other day. 

So adorable!!

Baby Domino! Back then, I called him "Charcoal"

Isn't nature amazing!!

One of our new girls- "Henrietta" :))

And so...
That's my life today, 9.6.16.
How's your life, your challenges, successes and joys? What plans and goals do you have? Let me know by leaving a comment.

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