Taxing Times

Are you feeling "taxed" today? (ha ha sorry!) Imagine if having cancer was a "tax deduction"! Stupid Myeloma, you "tax" me mentally and physically! Ok, enough of tax-day puns :)

I really wasn't going to post today, 4-15-15, but I receive so many kind inquiries, comments, messages, emails, that many of you are now regularly checking in on the FIVES! Guess I really started a trend here when I mentioned this would be my year of the Fives and I would post on the 5th or 15th or 25th.Thank you for paying attention to my numerical silliness, and looking forward to my "On the Fives" posts.

So not to disappoint, here I am sneaking a post in under the 15th wire.

Not much new to report since my previous on-the-5th blog, where I updated my yucky status and stats. My now over-used response to "How are you doing Julie", is... "Different day, Same story". Side effects and daily challenges have become ridiculously predictable (kinda a good thing), but I'll just never get used to being a sickie and feeling so lousy, so much of the time, and being so limited in what I can and cannot do.

But a bigger story than me, is my son's girlfriend's mom who has been hospitalized since the end of March for her Allogeneic (donor) transplant. She was diagnosed last September with CLL (lymphoma), stage 4/4. Immediate intense chemo for 4 months, then an Allogeneic (donor) Stem Cell transplant. Fortunately her brother was a "perfect" match, and she is half way through the torturous process. She's had a very challenging time with all the treatments and awful side effects. My gut aches for her, knowing first hand what she's going through. She had several months of high dose IV chemo at the beginning of the year, then 11 radiation treatments just prior to SCT, then high dose chemo again, then the transplant/infusion March 31. Ugh! Such a chemo-warrior she is! As she battles to heal, we look forward to our transplant success celebration.

We went to visit her this past weekend, and it was the first time I visited the actual hospital floor where I had my SCT July 5, 2010. Quite emotional for me, walking the halls, being in the hospital where I experienced my month long transplant ordeal, now almost 5 years ago...

I will never, ever, forget these views

It's truly amazing what a person can tolerate when required to, to save your life... And can you even believe: us 2 moms, both diagnosed with blood cancers, 5 years apart, same doctors, same hospital, similar treatments...  
Really now Universe, what IS this all about?!

One day at a time
One challenge at a time

So all of you want me to travel, do that bucket list, go to Hawaii? Read this!
The story about the woman with cancer, removed from a flight, due to the airline's concern about the safety of her traveling from Hawaii to CA! And what was her diagnosis... Myeloma of course!

 ===========================
About Multiple Myeloma (MM)
Multiple myeloma is a cancer of the plasma cell. It is the second most common blood cancer. An estimated 24,050 adults (13,500 men and 10,550 women) in the United States will be diagnosed (in 2014) with MM and an estimated 11,090 people are predicted to die from the disease.  
The five-year survival rate is approximately 43%, versus 28% in 1998.
===========================

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

Perhaps I should Buzz my Goldilocks...Longer Hair and Fake Normalcy is Status Confusing

Happy April everyone!

I am twisted enough to have considered posting on April 1, April-Fool's-Day, something like: OMG! I'm cured! Myeloma is gone! But then I realized that would be a bit too twisted! So I reined in my silly humor, as honestly, rare is the day I feel "good" and that would have been way too misleading.

I'm always surprised when people think I'm ok/off treatment/cured, based on my external appearance. Perhaps it's because I always fix myself up, chat it up energetically as I've always done, and for about 6 months now, I've let my hair grow out. Further, I don't have a tattoo with my Myeloma diagnosis ;) and most have no idea Myeloma is incurable/terminal. So Goldilocks and Revlimid, you confuse everyone!

I had my monthly Hema/Oncol appointment this past week. We reviewed my blood stats, myeloma numbers and April treatment options. We also discussed all my very unpleasant (multiple) side effects. So do you think I wanted to increase my chemo dose and type for this next cycle? Do you think my Dr wants me to?
The answers are:
Me= NO!
My Dr = Yes, but No.
Me= I'm kinda of "terrified" of adding additional and different chemo/treatment options. At least my current side effects are predictable and known. Adding additional chemos to Revlimid frankly scares me... a lot.
Me= not brave any more.
My creative combo of Revlimid 15mg alternating with Revlimd 10mg is only kinda, slightly, hardly making a dent in my myeloma numbers. IgA went up this month (boo). But, my M-Protein did go down slightly (yay!) My WBC's and immune system continues to be challenged and very compromised.

My treatment life

Yes, if I increase Revlimid to full on 15mg and add Velcade or another chemo, along with current or increased Dex level, to create a "chemo-cocktail", maybe my myeloma numbers will improve. Maybe not. And at what physiological cost? Much more yuckiness, GI issues, Neuropathy, Fatigue, Nausea, Dizziness, an even more compromised immune system and the risk of becoming Neutropenic... and a much more reduced quality of life. I hardly do much now lol... what would a chemo-cocktail do to me. Force me on disability? Take away what little fun times I have now?

Well my Dr and I decided not to change anything... yet. She's very concerned about what an increased dose will do to my already debilitated immune system. And we both agreed that the slight changes to my myeloma stats were still ok for now. I know what most of you are probably thinking... What are You doing Julie!.. crank up the chemo and hit myeloma hard so your numbers will go down. Ugh, truly, I'm just so sick of feeling sick and I don't want to feel sicker. I'm always processing the concept of "quality vs quantity".

Here's my current stats:
  
WBC's = 2.8 (low- why I feel so yucky and fatigued), 4 - 11 = normal range
Platelets = 120 (low), normal range= 130 - 400
M-Protein = .96 (yippee! a bit lower than last month), normal = Zero
IgA= 1360 = (up from last month :(  70 - 400 = normal range
ANC = 1.6 (low), normal range= 1.8 - 7.7
So far my kidney and liver function remains stable. Must be all the endless hydration I do!

So that's my update for now.
I do what I can do on the the days I do what I can. Everyone asks why I'm not on disability or retired. I love what I do professionally! I still make a difference in a "few" student's lives, I have a brand new, full window "corner office", I love my colleagues and campus, and it's really not an easy decision to say good-bye to an over 30+ year career. Besides my family/animals/home life, being a college counselor has been my life. It's just not that simple to close the door One Final Time.
Myeloma will dictate when...

Jim and I had an appointment in the "city" on Friday. I decided on an instant bucket list moment and took the LONG way home :)

And here's a bucket list item who's time has come and gone for me, 

But I happily live vicariously via extraordinary people: 

Stacy Westfall 

2011 All American Quarter Horse Congress Freestyle, Bridleless presentation

 Happy Easter, Happy Spring

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

 

Cool VW's and a Porta-Potty

And just when I was trying to have a little fun...
This Happened!

Oh well... my current life can be summed up as:

Trying to be (somewhat) Normal under (very) Abnormal circumstances.

And so it goes...that fine line between “tragedy and humor”. I have endless amounts of both in my current life. My "tragedies" are quite humorous (at least to me), and I prefer to find as much humor in my ridiculous circumstances as possible.

But before I continue with my story, READ NO FURTHER if you are tired of my “Chew and Poo” stories, or squeamish about biological functions stories :))

If you know me, or have followed my blog for a while, you know by now that one of my greatest myeloma challenges is my sudden, surprising, volcanic lower GI side effects. In as much as I can, I try to plan (the few) social events, work, and things outside my house on my “good GI days”. Truth be told, my most effective "anti-poo" technique is to “starve” myself prior to events, just so I don’t have to worry about GI surprises. Not healthy, but it works! So on GI challenging days I just stay home, knowing my unpredictable and without much warning GI events, can Hit me Fast! Yet I'm not ready to stay home all the time, dang it!! As much I as I try to manage and predict my chemo and medication side effects, my body has other plans for me… and At the Most INOPPORTUNE times!

This story is about that!

So in my effort to have some semblance of quality of life, do a few bucket list items, and just have fun, I recently entered my cute lil Bug in a VW car show. My cancer story and picture were even featured on their event website! I rounded up several friends, neighbors, students, etc, to enter their VW’s too. So of course, I had to be there! No option for cancellation, stupid cancer and poopy side effects!

Knowing this was an evening event, and Jim and I would be gone from the house for 4+ hours, I knew we had to eat something hours prior to the show. So I made us what I thought would be bland, benign and easily digestible: a delish veggie, cheese, cucumber, tomato, basil, herb sandwich.

All seemed to be fine as late afternoon, I readied my Bug for the show. Then SUDDENLY, I began to feel that telltale GI unrest 30 min before we were supposed to leave to meet our group!! Dang you chemo side effects! I just couldn’t believe my BAD luck, and immediately regretted eating. Dumb me for breaking my own rule of No Eating Prior to Events! I thought of calling all my VW buddies to let them know to go ahead of me. But dang it GI system, NO!, you’re not going to ruin my fun! So off we went to the show, me trying to mentally will my GI to calm down and be ok! Gurgle, gurgle, rumble, rumble...

So sweet! So cool!

Wow! It was like a giant VW block party! Beetles, Buses, Karman Gias, Things, etc. So cute, so fun, so many colors, so much love and care that goes into everyone’s “babies”. People recognized me and my lil Bug from the website and asked about my “Bucket List Bug” story. Chat Chat, laugh laugh, Hi Hi, meet meet, greet greet, and thennnnnnnnnnnnnnnnn…  ggggrrrrrrr… rumble rumble, grumble grumble went my gut more! I continued to chat, thinking I could mentally will this impending GI doom away… but suddenly I realized I was in BIG, urgent trouble! I turned to my son and asked him how far away he parked his car, and maybe he should take me home. As more angry, fierce, GI gurgling gurgled, I knew I was doomed, and wouldn't even make it to his car, to get me home to my own bathroom! I'm in a little desperate panic at this moment. I just stood still, hoping the GI volcano would calm...

And just in the nick of time, Not Kidding, I noticed two lovely Porta-Potty's were, oh so ironically, placed not far from where we parked.  Seriously, the irony was so very laughable! I just couldn't believe our group had randomly parked by the Potties! Well if you know me, you know I am no fan of public bathrooms, not to mention porta-potties! I’m thinking, GREAT, I’ll be spending the rest of the show inside a frikn porta potty on a public parking lot!. Because when the GI volcano errupts, it's no short experience, like a "normal person" visiting the bathroom. My Revlimid chemo is the best "Cleanse" out there!

I really couldn’t believe what was happening to me, and of course, during the rare, leave my house event I planned. But knew I was running out of time and choices, and I had to act fast, Really Fast... Well friends, I will spare you any more GI details here… I think you understand the "urgency" of my circumstances. I’ll just say Thank You to the show organizers for your ever so unbelievably ironic and convenient Porta Potty placement, right by my lil cute Bug, just for me tonight! Go, Julie, Go. Be brave, step carefully into that portable potty, that is saving your life tonight! 

LOL! you can see me back there in front of the strategically placed potties!

As I'm "sitting" there, thinking I'll pass out... I'm thinking... Wow, ME- immune compromised cancer patient on chemo, inside a public porta-potty! Can't be! It’s dark now, and I’m feeling mentally shocked and GI awful!.. and suddenly I couldn’t help but remember that crazy “Jackass Show” where the guys went on a gross porta-potty tipping escapade. OMG!… what if some “hoodlum” kids decided to porta potty tip, tip me over?! OMG, I'm just dying in so many ways, sitting there...
Well on a positive note, there was a hand sanitizer dispenser! And it appeared, or smelled lol, that my potty had been recently "serviced", thank goodness!

I eventually made it back to the show, mingled with all my VW pals and tried to have as much fun as I could, even though I was “traumatized” by my GI sabotage, and couldn’t wait to get home… well, you know why…because... well when the volcano erupts... it's an all-nighter...

So what have I learned?
As much as I try to be normal, I’m not. As much as I want to do things, I really can’t. As much as I think I can outsmart my chemo side effects and GI system, I can’t. As much as I think I’m in control of my body, I’m not. As much as I think I can win this cancer battle, I have to realize there is absolutely NO predicting what my body is going to do to me! And this is my "forever" situation, thanks to myeloma incurable nature.

The next day I took my Dex steroids and had a welcomed GI respite for about 48hrs!!  I’m not sure what happened, but mid-day Sunday, I started getting so sick again, and suffered throughout the afternoon, into the evening and night. I felt so awful I couldn’t even finish this blog and post it. Finally now able to keep some ginger tea and ginger cookies in me. Ugh...so exhausted...or should I say... "pooped out" ;)

Perhaps I should rename this blog: Julie’s Adventures in Poo-land!

Thank you lil Bug for my super fun and funny adventures!

Live happy, live well, and make a difference somewhere, somehow, 

with someone or something as often as you can!

 

Sick of being Sick, but I'm still Here!

Hello March 5th of year 5.

Thought this was a great poster explaining crazy Myeloma:

Today begins cycle #5 hundred, thousand, million something of Revlimid and Dexamethasone. Each month now I am pairing more Rev 15mg with less Rev 10mg to hopefully get to full dose 15mg without side-effects worse then I have now...

But having said that, I've really realized that my functionality in life now is totally controlled by my GI system! "Normal" people can go (lol, no pun intended) about their daily routines, without worrying much about when, where, what, how, what if, of their GI functions. Me... ugh, my whole life now is controlled by thinking I might be ok, scheduling things, then last minute cancelling because I wind up being owned by my lower GI's angry explosions! (Sorry). And coming off my one week chemo break, I'm realizing it's not always the meds causing my issues... it's the cancer itself creating havoc in my system.

Geezzz, back in the day, without a thought of "it", I would be away from bathroom totally. Backwood bushes never scared me :)  I used to be a remote-area backpacker, horseback rider, hiker, skier, biker, walker, beach/lake sporter... not to mention, all my career functions, family events, socializing, etc. Back when my GI system was "normal", anything, anywhere, at any time was possible! Now, here I am, posting this post on a beautiful blue-sky day, inside my house with that stomach yuck, and angry GI, writing between visits to my bathroom. Ok, enough of this.. you're probably all sick of hearing my poo rants, and I'm going to go drink a bottle of Imodium lol !

Here's my recent numbers: 

WBC's = 2.5 (so low- why I feel so yucky and fatigued), 4 - 11 = normal range
Platelets = 118 (low), normal range= 130 - 400
M-Protein = 1.20 (yippee! .05 lower than last month), normal = zero
IgA= 1250 = (yippee! 200 points lower than last month), 70 - 400 = normal range
Beta-2 Microglobulin = 2.1 , normal range= .8 - 2.2
ANC = 1.6 (low), normal range= 1.8 - 7.7

Many more stats, but those are the ones I watch the most.
So a bit of good news, thanks to Rev 15mg. My numbers are roller-coaster style, but that's ok. As long as there's not a steady month after month climb, I'll take this- awful side effects and all. My IgA is still triple the high end of normal, but I AM NOT wanting to be more aggressive with chemo treatments, as I would then have ZERO quality of life!

So I do what little I can do, when I can do the little I do. I plan, I cancel, I plan, I attend... then rush home to my bathroom! Such is my life now. But, I have a life and I'm here 5 years after diagnosis! I help a few students each week, and help rescue animals when I can. Since I'm home so much now, and travel is currently out of the question for me, I convinced Jim to let us save another life, needing a home :)

 Just look at that darling face! 

She's been at the shelter since Thanksgiving! Owner surrender :(

Poor girl, no one wanted her, and her time was up...

We'll be picking her up today... if I can leave my own litter box!

And so March is Myeloma Awareness Month... ugh... I'm tooooooo aware of Myeloma, but too many people haven't clue what it is, and how devastating it is...

I am VERY grateful for all the new current research and new myeloma meds being developed! Keep up the good work Pharma researchers and scientists! I so appreciate you working to prolong my life!

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

Monthly check up results... coming soon...

Hello end of February... you were a lousy month for me! Hoping March will be calmer. Ha! Probably not possible as what I've been experiencing will be what I will be experiencing forever... and it's only going to revv up... ugh!
So sick of being sick.

Today I will meet with my hematologist/oncologist to find out how Revlimid 15mg alternating with10mg is doing gobbling up those nasty myelomas....

Should I be brave and go full on 15mg?
Will find out today what my numbers are and what my Dr thinks.Crazy to live blood tests to blood tests.

Check back soon, as I will post my news. I broke my "post on the 5's" plan, as I passed the 15th and 25th (as I haven't felt well)... but if you do the math for today, Feb 27... 7-2=5. Yep, I know... I'm ridiculous :))

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

The New New New New New (unwanted) Normal

Hello February~

So I've been thinking (as I always do), specifically this time about how my life has changed in the 5 years I've had Myeloma. I've been thinking about how different I am 5 years later after diagnosis, what I can do and no longer do, and how I do what I do has changed... and frankly, I don't like it.

I am trying to come to terms with the incurable factor of Myeloma. I say the words, but it doesn't sink in... except when I've receive not so good news at my recent monthly oncology appointment. Then I get a slap-down, eye opening reality check that I really do have cancer, it's incurable and I have to keep increasing levels of chemo to stay alive. My blood test results below...

So humor me and forgive me for a bit of whining here. But my "disclaimer" first:
Of course, goes without saying, I am so very grateful for still being here, for all the fantastic medical care I have received over the past 5 years, grateful for all the loving, supportive, caring people in my life, and grateful for every day I wake up and can function (no matter the level of functionality or dysfunctionality lol). But dang it, I am (not so happily) coming to terms with my situation and limitations... and it's been 5 years!

I am frustrated that I am so limited everyday by how tired I am, how fatigued I am and how little I can do as a result of being so tired and fatigued.
I am frustrated that all the side effects from my medications (and this cancer) limit my ability to spontaneously go places, do things I used to do, play, work, and just live and laugh as I did.

I don't like that I don't feel as funny, light-hearted as I used to...life just isn't as funny now as it used to be.
Life isn't as carefree and playful as I used to try and make my life. This may sound trite and superficial to you, but I've always been such a deep, thoughtful, analytical person, that I wanted the other side of my life to be light and breezy, sunny and silly, spontaneous and goofy. Cancer takes a lot of that feeling away, as a cancer diagnosis, treatment and the "new normal" isn't that fun or funny.

Life is just more serious now
Life is more painful
Life is more exhausting
Life is too full of too many "what ifs" and "whens"
Life for me is too much time in the bathroom or wondering what I can do before the "volcano" erupts
Life for me now is centered around which daily medications, when I can take them, what I can eat that won't cause GI distress
Life is "eating to live", but knowing "chew and poo" is looming

Life now is about looking at my life and wondering what the heck happened to me and why
Life now is wishing I could spontaneously saddle up and ride on a beautiful day
Life now is the awareness of too many changes, and too little time left
Life now being aware that my situation won't magically get better, my cancer won't disappear, or "be cured"
No, I am not being pessimistic, or being negative. I am an educated realist regarding the course of Myeloma

Life now is centered around taking meds and wondering how they will affect me, and I'd better be close to my bathroom or another... but that is also (by choice) a huge limitation to me. I (choose) to not be out and about just doing whatever, and then suddenly realizing I need to be in the bathroom NOW!!!!
See, my meds, IgA Myeloma, my Stem Cell Transplant, continuing chemo, etc, have so dramatically changed my GI system that I just can't spontaneously go places and do things as I once did.
Of course, as I write this, I just caught a glimpse of a horseback rider on the ridge, riding through the oak trees on this beautiful day. Why "can't" I do this? Because I'm too tired, too weak, too fatigued, too nauseous, too dizzy and can't risk a fall as I have fragile bones now, and what if my GI system screams NOW and I'm not close to a bathroom.. maybe I'll just buy one of these thrones since I spend so much time there!

I wonder what my color options are ;)

Ok, enough lamenting. Life is good for what it is. I still can clear my "system", not eat (so no chance of GI reactions), and go into work for a few hours, impact a few students' lives, see my colleagues that make me laugh and inspire me, and do a few things around home with my family and animals that make me happy!

My blood tells all:
WBC = 2.5 (normal 4.0 - 11)
ANC = 1.1 (normal 1.8 - 7.7)
Received a Neupogen shot at this last appointment

M-Protein = 1.25 (normal = 0.0 zero)
IgA = 1450 (normal = 70-400)

Yes, my Doctors want me to increase Revlimid
Yes, my Doctors want me to add in Velcade (IV or Sub-Q)

Yes, I should
No, I am scared of more side effects
Yes, I want quality of life, not more time in the bathroom, and additional Neuropathy

So I am alternating 4 days Revlimid 15mg, with 3 days Revlimid 10mg weekly for 3 weeks, to get my body ready to accept full 15mg next month (along with all the other meds I take: Acyclovir (anti-Shingles), Mepron(Atovaquone) pneumocystis pneumonia preventative, and my nemesis bi-polar Dexamethasone

=========================================================

February 5, 2015 is the 5th anniversary of my dear Mother's death 

from evil Alzheimer's

And so I carry on- 1 pill, 2 pills, 3 pills, 4 pills, 5 pills at a time.

5 horses...

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

Hello Revlimid 10mg + 15mg for 2015

Well Happy New Year everyone! I just realized I haven't posted in 2015 yet!
2015 will be my year of symbolic 5's, so I apologize in advance for my 5-related silliness to come. I think I'll post on the 5's this year. So look for my updates on the 5th or 15th or 25th. Sorry... not sorry... numbers rule my life now, so I'll make them fun and symbolic!

So after spending most of December a sickie, I finally met with my oncologist the beginning of January, and we decided to move from Revlimid 10mg to 15mg. Might not sound like a big deal, but back in early 2010, during my initial myeloma treatments, Rev 15mg and I did not get along. As a matter of fact, I had a very scary allergic rash reaction. Within several days (maybe a week) of being on Rev 15mg, I began to get quite itchy and realized I had large patchy, raised bumps on my chest, back, arms and scalp. My oncologist had me immediately stop the 15mg and start chewing Benadryl like candy. She also increased Dexamethasone to 40mg- 4 days on, 4 days off! How I handled that, wow... I don't know. Actually I do recall how "yucky" I felt... but I was so stunned by my cancer diagnosis, that I just did what I had to do, and just got through it, to get to the goal: stem cell transplant and remission.

So when we discussed moving from 10mg to 15mg, I suggested starting gradually and alternating 10mg with 15mg. Yes, how novel and creative of me :) and you know what... so far so good! The prescription was processed on... you guessed it... 1/5/15 and I received it the next day. I'm in over 10 days now, and other than the USUAL side effects (too many to list) .. oh what the heck, here goes: tired, fatigued, buzzing, dizzzzzzzy, hot/cold, punched in the stomach feeling, bit of nausea, GI issues (corked up to volcanic lava), living in the bathroom on some days, breathless, bloated, restless sleep, sweating, should I go on... lol.. I'm doing ok!

Just look at all those pretty colors going after those nasty myeloma cells! (And that's just one of my pill containers!) Can't wait to see how 10 + 15 does. Yep! Cool idea I had! I have a SCT oncology appointment this coming Monday, and then my regular oncology appointment at the end of the month. I took blood tests about 5 days ago, but I don't think we'll see any dramatic changes yet. Perhaps when I update my tests closer to my end of the month appointment, maybe Rev 15 will have had the opportunity to annihilate more myeloma cells! 

Revv it up Rev!!!

Here's my stats from my last December appointment: 

WBCs = 2.7 (normal = 4 - 11) ouch! no wonder I feel yucky and got sick

IgA = 1070 (normal = 70 - 400) guess I really do have myeloma ;)

IgG =   264 (normal = 700 - 1600)

IgM =    17 (normal = 40 - 230)

ANC = 1.4 (normal = 1.8 - 7)

No wonder I am so immune compromised!

And dang it... M-Protein jumped up to 1.14 (sad face here)... and this level is what motivated us to commit me to moving to Rev 15mg-  (normal/remission = 0.0) 

My Thoughts Exactly!

So that's my 1/15/15 story. I still only have a few good days per week, and can only go into my office 2 days a week, as after my Dex steroid crash, along with Rev's lovely side effects, it's hello "Chew and Poo" lifestyle. The only way I can go anywhere, is to not eat before I leave the house (and take an Imodium pill), as I don't want any surprise "volcanic reactions". And it's so random too. I was feeling ok the other day, and after eating something as benign as scrambled eggs with spinach (at home) ... boom not long after... LAVA... lol

Hoping 2015 is off to a great beginning for all you, and I do really appreciate you reading and commenting on my posts. I'm thrilled to be here 5 years after diagnosis! I still feel so surreal about my diagnosis and still process all of this as if it's happening to someone else (except when I'm in the bathroom!)

 

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

5 Years ago TODAY... Boom! MM forever Changed my Life

Yep, 5 years ago TODAY, somewhere between 11:30-1:00, I was officially diagnosed with Myeloma. Multiple Myeloma. Multiple stupid Myeloma. But I'm still here, 5 years later!!!

So I've lived 6 myeloma December 30th days, surviving 5 years since diagnosis... weird math that is!
12-30-2009
12-30-2010
12-30-2011
12-30-2012
12-30-2013
12-30-2014

But it's the dash ( - ) between the years that matters and adds up to those important 5 years!

2009-2010

2010-2011

2011-2012

2012-2013

2013-2014
Ok, enough of my numerical silliness.

2014 is rolling over to 2015 in just hours and December hasn't been very kind to me. This month brought a lot of GI upset-unpredictability, tiredness, fatigue, headaches, neuropathy-buzzing, etc, so I didn't do much or leave the house much. I missed being able to enjoy fully moving into my new office and missed holiday festivities with my staff, friends, family, pets, nature, etc...

Then several days before Christmas, I totally bit the dust with a lousy sinus head cold fever thing. Still not fully well now, and sadly Jim and Scott caught my cooties this week. Cruel stupid germs. I see NO point in illness and sickness... (except isn't it nature's way of eliminating the weak...). I hate being sick and I hate being weak. But, thanks to what's left of my immune system, my biological-military battled the bugs and I am better now without hospitalization or Antibiotics! And that's a a big deal to me, as I was always proud of how healthy I used to be, how few bugs I caught, and how my body battled on it's own.

Just before I really bit the dust and my 101 fever tortured me, B.F.F. Kristin came over and she and Boots fell in love:

These are some of the cutest pictures I've ever captured!

Not long after that, I really went down hill fast and spent the last week feverish, all stuffed up, coughing, etc. We cancelled all our holiday festivities and parties. I didn't even get around to decorating the house this year, as I just didn't have the internal "helium" this December...

Did I mention, I haven't been on Revlimid for a week and a half+ now...  just happened to end my 21 day Rev cycle right as I got sick, and I felt so yucky, I haven't taken Dex for 2 weeks. Such a cheater I am!

But in the last day or so, I have felt better and even able to have a super fun moment with some of my fave student/office pals today. I look like the little ol bag lady lol with her bag (which was take-out for my sickies at home). Thanks everyone for coming out to celebrate, notate my 5 year anniversary!

 Talk about a Fun group!!!

And as the sun sets on 2014...

I continue to evaluate and reevaluate my situation, and really, the only wish for 2015 that I have, is to have the physical strength to do the things I want to do... which is really not much at all. I just want my pre-myeloma life back, so I can go where I want, do what I want, be there for others and not be consumed in physical symptoms, side effects, medicine regimens, and germs out to get me!

And just before I logged in to write this blog, I read an email from my awesome oncologist. I had written to her when I was sick, updating her with my situation and cancelling my appointment for last Friday. I have a new appointment for this coming Friday after New Years. She sent me my blood test results... and also said... "M-protein is up... thinking about going up on Revlimid... let's talk about this on Friday... please don't worry... we have other options..."

WBC = 2.7  (normal = 4 - 11)

ANC = 1.4   (normal = 1.8 - 7.7)
IGA = 1070  (normal = 70 - 400)

M-protein = 1.14 (no cancer = 0.0)

So Happy New Year 2015... hellooooo Revlimid 15mg.
Of course 15! It will be 2015
And of course continues my #5-theme!

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

Numbers, Numbers, Numbers! My Life Represented in Numbers

Just couldn't resist the opportunity to post on 12-13-14!

Numbers. My life is consumed in Myeloma numbers. Numerical blood statistics. Numbers representing my health status and prognosis. Numbers determining how immune compromised I am. Numbers measuring whether I'm winning or Myeloma is...

Since diagnosis I've had to become ultra focused on my medical numbers, never wanting to be ignorant of my cancer status details. So I've learned more about what my myeloma numbers mean related to my body bio-chemistry, bio-physiology, then I ever thought my little brain could comprehend!
But I also see amazing (positive) numerical patterns EVERYWHERE in my life, unrelated to cancer. My mind and eyes gravitate to numbers now in a way I never did before. And I seem to have weird-amazing connected numerical patterns in my life, everywhere!

12-13-14 is a pretty remarkable number pattern, and I'm glad to have lived this historical 12-13-14! Originally, my plan was to post tomorrow, 12-14-14, as December 14 represents an all too important anniversary date: my First Hematology appointment. 12-14-09 began my Myeloma diagnosis journey, 5 years ago. #5 has become pretty symbolic in my life this year, and I look forward more important #5 dates coming up in (of course!) ... 2015!

That FIRST unreal, unnerving appointment, 12-14-09 is of course, permanently etched in my mind...  my life turned upside down like none other... well... except for my FIRST Bone Marrow Biopsy 12-18-09 and the BIGGEST of the BIG dates, 12-30-09, my official Myeloma diagnosis day.

But all is moving forward (thanks to continuing Rev and Dex treatments), and I am absolutely thrilled to still be here on this beautiful earth, living life the best I can, 5 years later at 55. These 5 years have been a gift, and I'm hoping for another 5 years.

***AND OF COURSE... WHEN I LOGGED OFF... MY BLOG PAGEVIEW STATS SAID... CAN YOU GUESS??? YES INDEED!!! ... 55,555 !!! Just can't make this stuff up... here's the "proof"!

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

Racoons, Roids, Roller-coaster Results and my upcoming 5 Year Anniversay

Hello December, month of so many initial diagnosis anniversaries.

Blah, blah, cancer.... blah, blah, blah you have cancer... blah, blah, blah it's called Myeloma...Mye-who? huh? blah, blah, blah, blood plasma cancer... high risk My-e-loma... MY what the .... ???

FIVE years later, I still: 

Yee-haw! Bring on another 5 please!

Five year survival is a BIG DEAL

in Myeloma years!

So my most recent stats reveal I continue on an up down up down up down Revlimid roller-coaster. But you know what... I'll take it! One month my stats are UP, the next month they're DOWN:

October IgA was 1200

November IgA is 1180 (normal range is 70-400)

Not really statistically significant, but at least it's down .20 rather than UP .20 !

October M-Protein was .94

November M-Protein is .92  (zero) = cancer-free and/or remission

Again, not really statistically significant, but better .2 down. My oncologist and I talked again about moving to 15mg Revlimid... and I said, how about AFTER the holidays! And she said, "no problem". Love her!

Other blood levels and WBCs abnormal- I'm still immune compromised and scared of public cooties! And people still don't get it! "But Julie, you look so good! How can you have (incurable) cancer?" Thanks Myeloma, you're such an invisible confusing deadly cancer! Maybe I'll get a tattoo describing my situation... 

Speaking of tattoos, look at this amazingly special tribute to me from an incredibly special special special person in my life. Just took my breath away when she showed me this and told me she had it done on my birthday! wow! We are together forever, every "step of the way". She had me write out my nick-name and hearts months ago... but I had no idea this was why!!! Love you secret friend!

 And then is happened last Saturday!!! omg this lil guy is beyond cute!!! My doggies "treed" him overnight and he stayed there during the day. He/she is just an adolescent, and may not have developed the "tree smarts" yet, or the "how to trick dogs" technique yet. So we kept the dogs away from this area overnight, and he managed to get to a larger oak tree... and then it began raining... felt so bad for this "cuddly" bandit. Finally, the following night he was able to sneak away. Hopefully back to his family den. Yes I know their potential vicious, rabid, destructive nature, etc... BUT JUST LOOK AT THIS FACE!!! Just made my day being able to get these darling pictures!!!

So take that Myeloma. I receive the gift of life daily! So many many many special incredible people and animal experiences in my life daily! And I still make a difference on this earth! I don't get how Myeloma happened to me, but I AM SO VERY FORTUNATE TO STILL BE HERE!

I'm doing a little experiment with Dex this dose: I am splitting my 20mg weekly dose in half, taking 10mg today and 10mg tomorrow. I still got my Dex buzz today, and I'm up way too late again, but not the INTENSE SURGE I get when I do 20mg in one day. How the heck did I do 40mg, 4 days on, 4 days off for 6 months in 2010. I was one really sick puppy back then, so it really affected me differently. I'm still a sick puppy, but thanks to everyone and everything involved... not as sick as 2009/2010!

Thank you to my followers for reading and commenting on my silly musings. Means A Lot to me! And I just noticed that my PageViews have rolled over to 55,xxx!!! Do you even know how symbolic that is?! wow! My 55 BD, my 5 year Dx anniversary, and my 5 year SCT birthday coming up in July in 2015! wow! Time for a lottery ticket with lots of 5's !!!

Hoping your treatments are treating you well, life is bountiful and beautiful for you, 

and you live your daily "bucket list"!

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

Happy Birthday to Me! HaHa Myeloma! I'm Still Here!

Dear Myeloma-

Wow! Hey, I made another birthday!!! hahahaa on you Myeloma cells, I'm still here. You may have completely changed my life, and the course of my life, and what I can do with my life, but I'm still here Myeloma! I've beat my own odds and medical statistics! And my 5 year Myeloma anniversary is coming up end of next month! Winning!!

I don't have any "big" birthday plans, as I don't feel very energetic, but that ok's with me as I still get up each day, function on the level I can, do what I can, and revel in just being alive!

Speaking of plans... I sometimes (really not too often) reflect on Who I would be now, What I would/could be doing/accomplishing at this time in my life, if it weren't for YOU myeloma. But, WHATEVER Myeloma, I'm not Wasting any time on What was, What could be, What might have been... I'm living IN today, FOR today, as much as I can.

Ironically, my last Revlimid pill of this current 21 day cycle is today. The timing is funny to me. And, just to ensure I will feel ok on my birthday, I saved YOU Dexamethesone, my bi-polar nemesis, for my birthday! Yay for "Roid-Rage" later today and 24hours of Fake-Feel-Good. I'll worry about your angry crash later lol!

So cheers to another year of survival, another year of successful battling, and another year of REVISED goals and dreams. Monday I will see my oncologist and receive my monthly status update. So until I know differently, I'll say it again Myeloma... I'm still here, and not planning to NOT be, any time soon!

This video makes me "Happy" and smile!

 

Thank you Pharrell Williams and "catmantoo"

This video makes me cry for so many different reasons....

Thank you Stacy Westfall for your breathtaking performance!

Wishing all of you unlimited birthdays!

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