Insidious Awful Worthless Germs

Seriously unbelievable! I am having the hardest time feeling better. Is it my WBCs that are not able to fight my fight for me? Is it something more insidious, deeper in my core that is really SICK sick. Sick beyond the "normal" sick? Sure, I've been sick since I've had Myeloma, but I can't recall the awfulness I feel this time. I've always recovered faster. This bug is sucking the life out of me. Taking forever to leave. I'm going to name it "THE CHRONIC FEVER FATIGUE FOREVER FLU"!

You know how in movies and books you're taken back to that incipient moment of what happened. That retrospective explanation that solves the why. I just want to know Who breathed on me, Touched me, Contaminated me! When did I pick this monster up? I wish with all my wishes, that I could look through the magical back in time telescope and see where I picked this thing up. I'm so darn careful about cross contamination, it just baffles me I could get this sick.

It started with the typical achiness of a fever and just continued to get worse from there. But it wasn't a horrible sinus or respiratory bug. It's manifested in a super high fever for days. Yes days and days and days and days of fever. Finally yes I've gotten better. I'm no longer stuck at 103, 102, 101. I don't ache as much. But I have this weird malaise. Just blah. Just no energy. No helium. Just achy all over. I find myself wanting to take my evil best friend Dexamethasone, just to see if that would make me feel better. Temporarily pump me up. Maybe this is the mystery? Maybe going off Dex has slowed my immune system to sluggish blah? I have my monthly oncology appointment on Monday, so I will ask.

In the meantime, I drag. I drag myself to do everything I try to do. I don't have the fire I used to. What is wrong with me. One day slips into another. I feel downright yucky. I feel no purpose. Just trying to get from one day to the next, to hopefully feel better the next. I can't get comfortable in my own skin. If Jim wasn't so sick too, I would think this was psychological. Yes we are slowly a little better each day. Just a little, not much, just a little bit each day. His settled more in his chest then me. He's on antibiotics, I'm not. Thankfully our chest xrays showed NO pneumonia. I am grateful. Very grateful! But I still feel awful. No pep. No motivation. One day falls into another. I question my life. My purpose. My reason here. Not feeling well makes one feel so awful. In so many ways.

I used to have so many events, goals, plans, challenges, etc to look forward to each day. Something to achieve daily and make me feel accomplished. That some-thing important that moves you forward. Some-thing that makes your body and mind feel good, productive, pleasant, happy, positive. You feel that good-tired feeling at the end of the day of doing some-thing that mattered. That, wow I can't wait to sit and relax feeling because your body "earned it" feeling. That delicious accomplished tired feeling, after you've lived a normal day, and you look forward to the next day's adventures and challenges. Not me, not now.

"Normal" people plan things. Normal people plan because they know they can do their plan. Plans are meant to be accomplished. I was planning to plan little things for my chemo break days. Little things. Drive my Bug. Groom a Horse. Take a walk in Nature. Go to lunch with friends. Maybe even try to visit my office one day. I was hoping we could begin to do a few things. Not much, just a few small fun things here and there. Now, I don't even feel like planning. What's the point. I don't feel well. Even if I plan, my body won't let me participate. I don't want to go anywhere. I can't get comfortable. My body hurts. No point in planning...

My days seem so meaningless now. Just existing. Just trying to get to something that makes me feel ok. Walk outside. No, it doesn't feel good like it used to. Pet the doggies. No, that's an effort. Pet the horses. No, that's an effort too. Sounds hurt my ears. Things give me headaches. Water, not refreshing. Juice, doesn't taste good. Toast, makes me feel stuffed. Soup, yuk, not satisfying. Nothing appeals or satisfies. I try to go outside and sit in the sun. It stings. The neighbor's gardener is blowing incessantly. It hurts my head. Makes my chest feel heavy. I feel sabotaged. I long for that sense of luxuriating on a lounge chair, feeling the sun's rays permeate my being, regenerating my battery. No, it doesn't feel good today, the day before or before. My skin hurts. My body feels restless. Achy. Discontent in any position. I take my temperature. Some days it's 99+. Some days 98+. Haven't seen a normal 98.6 since Feb 14. I know I am better. It's not in the 100's. I'm grateful for that.

This is not me. Not having the energy to do. I'm the eternal optimist. I'm supposed to be seeing the glass always half full. I've been thinking about all this, each day for weeks. I've been sick for 2 weeks now. What is my life now. What is my purpose. What is this getting up, to then get to the couch. To try and accomplish a few necessary chores saps me. To then flop back on the couch. That doesn't even feel good. My hindquarters are sore from sitting. From sleeping. NO I AM NOT DEPRESSED. This is physical. My body is not allowing me to feel good. I am so tired. I have a weird ache all over. I don't have an appetite, but I force myself to eat and drink. It doesn't refresh me. It doesn't make me feel good. It weights me down.

I feel terrible writing like this. There are so many suffering on such a larger scale than me. All over the world. There's so much sickness and suffering. Humans and animals. Cancer patients are dying every day. I follow a lot of myeloma discussion groups online. There's a lot of myeloma suffering out there. Myeloma is so insidious, so vicious. Treatments have stopped working suddenly for so many. Some have little hope. Treatments too invasive and organ-devastating, devour lives. Options have run out. I've been really sick, but at least my chemo treatments are having an impact, keeping my myeloma numbers stable. Years ago, like so many in the myeloma world, Pat Killingsworth was my first go to guy when I was diagnosed. He recently lost his battle. I, like everyone else, overwhelmed and shocked. Devastated he's gone. He blogged for us everyday. Sharing his life, his story, his treatments, his journey. Just devastated to read what happened to him. If you have myeloma, you know Pat. If you don't, please get to know him. His legacy will live on forever. What an amazing, insightful, intelligent man. Such a deep loss. The myeloma community has lost a "giant" and I am whining here about my fever flu awfulness. I am still here. He and so many others are not.

I'm sad I feel so awful. Sad for me, sad for others. I try so many things to make myself feel better. I compel myself. The weather has been spectacular here. That generally picks me up, invigorates me. My family, my animals usually invigorate me. Spring has come early. Beautiful fresh green everywhere, new colors of 2016. I want to feel good! But everything feels like a painful chore. I cancel plans made weeks ago. We just don't feel well. It's insidious. I don't understand why I am sick all the time. Cancer sick. Chemo sick. Flu sick. Sick of being sick.

But I push forward. I know moving helps. I go outside. I try to do some horse chores. I'm exhausted. I hurt. I feel like I'm going to pass out. I walk in my tack room. I'm sad. I waited too long. My life is passing me by. I'm not feeling sorry for myself. I'm a realist. My body failed me. I don't have the helium to do what I've dreamed of, waited too long for. The reality of being sick for over 6 years hits me. 6 years, more than 6 years, I've been sick. I haven't felt good for over 6 years. Tomorrow's another day I tell myself. I will get better. This is temporary. It has to be... It just has to be...

 My happy place ~

So many beautiful memories and miles

Can it really be? I've had this saddle for 35 years. 

So many happy miles. Dusty now, from lack of use...

It's a beautiful day outside. It can't be possible that I can feel bad much longer. It just can't. Monday starts chemo again. I missed 2 treatments this month due to being sick. I wonder how that has affected my status. My IgA was up last labs. Did I mention that? My IgA was up more than 100 points. I need to take monthly blood tests. I can't stand the idea of going over to the lab. So much sickness everywhere at all the clinics and hospitals. Sickness everywhere. I hate germs. I hate sickness. I don't have patience for it. What is their purpose. I hate suffering. I don't understand everyone's suffering. There's too much sickness suffering in the world... Sickness is suffocating. Ok, Enough...

Ok, so I will end with a couple funny stories. There's always that fine line between tragedy and humor, at least in my life. Last week, at the beginning of being so sick, Alissa was here helping us out. At some point she realized a pigeon had fallen down our chimney. We have a lot of pigeons Jim feeds regularly, so they often roost on the roof, but we've never had one visit us inside. I think the pigeon fell down the chimney late afternoon, so we decided to leave it there over night, hoping it might flutter back up by morning. I felt so sick, but I knew I had to help the poor guy. As sick as I felt, it was funny. It made us laugh. The irony of a pigeon falling down our chimney, especially when we felt so awful was just funny. I didn't need one more challenge. But it was funny. A wild pigeon randomly roosting (by mistake) in our fireplace. I'm not sure how in my feverish state I managed to gently grab the pigeon without much fuss, and hold on to him, but I did, and released him outside before I collapsed from laughing and physical exhaustion. 

A few days after the pigeon incident, Jim accidentally let one of the rescued baby sparrows out. For those that don't remember I rescued and raised a single female baby sparrow in 2013 and then in 2014, three more newborn babies fell from the nest. Not my intention to have a household of sparrows, but I didn't have a choice. Anyway, "First Birdie" gets to fly around our house periodically, as she goes right back in her cage. The "Triplets" are another story. They remain in their huge aviary, happy but way too "busy". Well Jim accidentally let one of the females out the other day, and she's not "trained" to fly back into her cage like "First Birdie". Long story short, while Jim and I are feeling feverish and awful, we're trying all kinds of gymnastics to catch the little birdie. She stays close by us and her buddies, but we can't get her back in the aviary without letting the others out. Can you imagine the comedy. First the pigeon in the fireplace last week, now a sparrow lose in the house. Fortunately, she finally flew into our food pantry late in the evening and I secured her there, trying to figure out how I was going to actually capture her and get her back in the aviary. Looking back, as awful as I felt, it was pretty hilarious. I'm climbing around the pantry, Jim finally slipping a step stool ladder in there for me as "girl birdie" flits here and there, swooping in my face, taunting me that I can't catch her. She finally exhausted herself and I managed to catch her behind the condiments and return her squawking and pecking to her aviary. Truly, my life is that fine line of comedy and tragedy. And that's only 2 recent examples our crazy adventures in Myelomaville.

First Birdie trying to cheer me up ~

What a lovely view of me... NOT :( but Birdie's very cute here!

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

Sick, so Sick. Big Fever. Stupid Immune System Fail

So if being sick from all my cancer related stuff isn't enough stupid body, you have to allow awful germs in to invade!

I've been sooooooooooooooooooooooooooooooooooooo sick since late Monday Feb 15. I started to feel lousy in the morning. Just weird achiness. But I had my prescheduled, every few month appointment with my SCT specialist, so I pushed aside my symptoms and went. I just thought it was treatment related aches, fatigue, headache, etc. I NEVER dreamed I was getting sick!

I registered a 98.9 temp there. Nothing to cause much notice. (I did take note tho, since I "normally" run normal or bit below.) "Relatively good" appointment with wonderful staff. I'll update on my details next post.
I began to feel rotten while driving home. Worse when we got home and when doing all our usual evening animal chores. I still didn't think I could be getting sick! Not me!

THEN it HIT! It really HIT! You know when a fever is real and it's invading. Moving in. Taking Over. You just feel so awful. Your body just aches all over, and there's little relief. You hurt from the inside out, and the outside in.You can't function. Nothing helps. Nothing relieves. You start begging for relief. Bargaining with the "germ g*ds". Promising all kinds of things, if the pain can just GO AWAY.

I didn't realize how doomed I was. But I hoped for the best, took some Jr strength Tylenol, and pretended I'd be fine in the morning. I got worse. And worse. Each day, each night. It got worse. I sent a message to my oncology office. They called. I couldn't even answer the phone. I was soooooooooooooo sick. I should have gone to ER, Urgent Care. But I barely made it from my bed to the bathroom to the couch, etc. I kept popping Jr strength Tylenol and Advil to take the edge off the fever. When it wore off, I'd take my temp. 102, 103+.  I hadn't felt this awful since.... I don't know... maybe my out of remission bug in 2013? Hawaii hotel disaster 2012? SCT fevers 2010? Just awful. Just fever awful. I couldn't eat. Hydrating was a huge effort.

Mon, Tues, Wed, Thurs, sick sick sick sick. Fever sick. Not much else. A cough here and there, but not an awful cough. Just an awful fever. I should have gone to be checked, everyone says. But I couldn't. I couldn't function, communicate, do much of anything. I haven't felt this awfulness in years... Jim gets sick too. We're messed up. What a great life. The weather is stunningly beautiful outside and where am I? I can't believe what has happened to me on so many levels.

Friday my fever finally broke a bit and came down between 102-100.
Saturday down more to 100-99. Starting to think I'll make it.
Sunday, today, down to 98.9. I finally called the "Nurse Advice Hotline". They couldn't believe what I've endured this week. It was "highly" recommended I go in and be checked.
We're going in now...

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

Results, Adventures, Challenges, Grateful

Hello February!

So every time I finish writing a blog, I think Ok, that sums it up, I sure won't have much to say when it comes time for the next on the "6's" date to post! Well, I'm wrong on that! So much seems to happen between my 6's. Since my last post, I've found out the results to my January 4, 2016 Bone Marrow Biopsy (see below). I've had several occasions/invitations to share my myeloma story (one big event I'm keeping secret for now :) ... And more and more, (sadly) I am FORCED to recognize and accept how my cancer treatments and medical status has completely changed my life, and how my situation is preventing me from "functioning" anywhere near how I used to. So I made a phone call..

Saddle up. Here we go with my updates.

February brings the start of a new college semester. "Normally" I would have been involved in so many college related events and activities my head would be spinning. But nope, not now. I haven't set foot on campus since late October 2015. This is really huge for me and it's so weird for me trying to accept this "not going into my office" any time soon, or (maybe) ever again concept. Ouch! That's hard to write. Being a college counselor has been my whole life, beyond my kids and family life. The reality of my cancer side effects and weekly IV chemo treatments push me to accept my "forever" status. I see why those diagnosed with cancer eventually must opt for disability or retirement. I've fought this concept for 6 years. It's such a challenging concept for me, but a concept I must now consider... Ouch.
So I made a phone call...

Life's forks in everyone's road fascinates me. Always has. The choices, decisions, outcomes and adventures are never ending for any of us. Ever. Often exciting and rewarding. Or sadly tragic and too challenging. I used to present this to my students and classes: "If we were all in group therapy together and asked to write down our "issues" on a piece of paper, fold it up, toss it into a basket, then swirl the basket around, then we'd all have the choice to pick a random "issue" out, or pick out our own... Which Would You Pick?!" 
I pose this question to people regarding my cancer situation, as they just can't wrap their mind around living with an incurable cancer diagnosis. So I ask them to reflect on their own life's challenges, or those of others they know. Would they trade issues? Keep their own? Would I trade cancer for their life challenges? It's all so relative and truly, it's all in what we get used to and learn to adapt to. I've had a really hard time accepting my cancer diagnosis and status. I still think it will "magically" change.

Yes, I am always thinking about what has happened to me and why, and how come, and no fair, and shheesshh can I give "it" back. But if given the "choice, would I "trade" my circumstances for another's tragedy? Would you? Could you handle mine, and me, yours? Crazy how we can "get used" to our tragedies and challenges, and "learn" to adapt, cope, accept and move forward. Strange how I am overwhelmed by other's medical situations, but mine, yep it's mine, so one foot in front of the other, every hour, every day, every month. Pushing forward always. Being the optimist I have always been, I forever seek the positive in the negative, always looking for the "silver lining", for "the good" in "the bad".  So I can't help but be humored at the many "good" things and interesting "adventures" that have come out my diagnosis and treatments... Case in point:

As you know from my previous posts, Kyprolis is currently my "elixir" and best friend, gobbling up myeloma and giving me renewed hope for additional longevity. Through a special family friend, I was introduced to PR staff at Amgen. They kindly were interested in hearing my myeloma story and I was of course happy to share and give my endless thanks. My cancer journey IS fascinating. NOT because it's MY story, but because of WHAT so "randomly" happened to an otherwise healthy body, and how all my excellent medical care and treatments SAVED A LIFE! As awful and deadly as myeloma is, cancer is mysterious and fascinating. Why it happens, how it happens, where it happens, to whom it happens. So what a wonderful opportunity it was to be invited to share how much I appreciate all the brilliant medical pharmaceutical researchers, scientists, developers, as well as the entire Amgen staff that helped create and produce the life saving "potion" that is currently saving my life, and battling myeloma back!

I only had a tiny window of opportunity in terms of WHEN I could "safely" get on the freeway for the drive out there, and it happened to be a beautiful day for a drive. I felt so fortunate to be able to do what I was doing on so many different levels! Here I am, 6 years into my myeloma diagnosis, having been through initial chemo treatments, a Stem Cell Transplant, remission with maintenance meds for a few years, and now, after becoming "refractory" to Revlimid, Kyprolis is successfully eating up myeloma, and extending my life! Seriously, how lucky am I! So of course I want to share my story far and wide, to help anyone that could benefit from hearing about my journey, and to thank those that have had a part in saving my life!

We look like college students here, right?! Girl Power!!! Well actually there were several men in the meeting, but they had to dash off quickly for another meeting and missed this great photo-op! THANK YOU TO EVERYONE that took interest in my story and cared as you did to hear what I had to say about how Amgen's Kyprolis is currently saving my life! I had a wonderful time seeing where my best friend Kyprolis was developed and briefly getting to know all of you, and share how YOUR careers are saving my life. Thank you for caring about my story!

So that brings me to my current stats. Yes, I know... feel free to tell me "you told me so" over and over. How I should have ditched Revlimid sooner and been braver sooner, and switched chemos sooner. Ok ok, I've learned my lesson well. I should have taken my escalating IgA and M Protein more seriously, sooner. But as I've said before, I'm not the bravest cowgirl on this trailride of life. For real, side effects are yucky and scary. Often the "known bad" is preferable to the "unknown" possible good, even when that's not the smartest choice. And make no mistake, I still have very yucky side effects. Unpredictable, sudden, where'd that come from GI stuff, neuropathy, weird swelling, disabling fatigue, tingling, dizziness, headaches, breathlessness, disabling exhaustion, etc etc etc, all which keep me home-bound for most of the week.

My Kyprolis infusions are Mondays and Tuesdays, 3 weeks in a row. I then "crash" on Wednesdays and Thursdays. Begin to feel a little bit better on Fridays, little bit better Saturdays and ok on Sundays. Then It Starts All Over Again, to Infinity. So yes my numbers are better, and I am eternally grateful, but my quality of life hasn't changed. I'm still the "limited cancer patient" I've been for over 6 years now. Not complaining. Just stating facts. Ok, here's my numbers:

WBC's = 2.7 (low= why I feel so fatigued, immune compromised) 
4 - 11 = normal range
RBC = 3.7 (low = weak, fatigued, dizzy, oxygen challenged) 
4.20 - 5.40 = normal range
M-Protein = I'm "abnormal", but not a quantifiable number 
normal/remission = Zero
IgA = 432! Whoa!
70 - 400 = normal range
ANC = 1.7 (was a bit higher previous tests)
1.8 - 7.7 = normal range

Platelets = 159 
130 - 400 = normal range

Hello Myeloma! Did you notice... Kyprolis is WINNING! :)

And for the finale... my most recent Bone Marrow Biopsy #6:
#6 of course for 2016 for cancer year #6- The Results Are: 2-10% cancerous plasma cells.

WhooHoo! Take that stupid myeloma! Get out of my cells, get out of my life, just die off and let me live. You're probably wondering how I can be "happy" with those results? Results that show I am still quite cancerous? Remember, myeloma is incurable, and I will always have cancer. It's the degree of, that matters here.
To give perspective, I was 60-70% cancer at diagnosis December 2009.  
10% after initial 6 months of treatment.  
0 after Stem Cell Transplant summer 2010.
15% September 2013 when I came out of Remission. 

So even though I am still "cancerous", and I will have active cancer floating through my blood forever, I'll take these currents numbers.

And so..... periodically, I'm able to infuse mental helium into my exhausted spirit and body, and get out of my house for something other than the chemo lab and doctor appointments. 

After my "good news" and while still on steroids,

I treated myself to some PROTEIN! 

Bit me back later, but fun at the time! 

My sweet friend and avid supporter Susan and I
having a long awaited lunch date Tea Party.

Thank you Susan for "hating" my bad numbers

and celebrating my good numbers.

I wound up dizzy and with a crazy headache, but we had a lovely time

catching up and celebrating life.

Thank you for all your support and caring Susan!

No I didn't eat all this. Myeloma won't let me! 

Food always seems to look so good, 

better on the plate than in the tummy for me. 

I always feel I should be doing so much more than I do

but I just can't, my body won't let me...

 My daughter chauffeur at chemo with me 

Daughter and Son!!!!

Having "fun" at my Kyprolis infusion 

with the options on my new phone! 

 Stopped to get pet supplies on the way home from chemo

and this guy called out to me to rescue him! 

I just love betta fish, but haven't "allowed" myself 

any additional chores.
But I'm such a softie when it comes to animals
so home he came with me :)

6

6

Life marches forward. Monday Tuesday, Monday Tuesday, Monday Tuesday.

Blood tests every week to make sure I am strong enough for the Kyprolis infusions. So far, so good. I'm proud of my organs for being able to withstand all these intense chemical treatments. I try to hydrate all the time, eat well most of the time, and I am forever grateful for all the amazing medical care I have received and continue to receive. I truly live my life one day at a time, one chemo appointment at a time. Blood test to blood test. Breathing in monthly results to monthly results. My life status, prognosis, strength to move forward, and whether myeloma is, or I am winning, always revealed through my monthly blood work. I move forward with hope and optimism, still not believing my circumstances. Walking the walk as a lifetime cancer patient. This is my life.

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

Reality Check 16

Hello 1.16.16

So I was thinking about TIME the other day. Ha! I think about time all the time.

I think about how much time has passed in my life already.
I think about how I used to think I had "forever". (Didn't we all?!)
I think about the weird timing of so many things in my life. Crazy stuff!
I think about my perception of time before cancer entered my life and before Myeloma became one of my (unwanted) vocabulary words.
I think about the term "Quality Time" in a very different way since diagnosis.
I think about how much time I "may" have left.
I think about how much time I "might" have left to do things I want to do before my body (further) fails me.
I think about how much time I have before Myeloma leaves me no options.

I've been thinking about all of this (more) as it's a new year, another year surviving, yet battling Myeloma and also because I read so many stories online about how many of my Myeloma peers have run out of time. They don't have any more time. The death rate of Myeloma is real. Myeloma is vicious, unpredictable, unbiased, incurable and can steal our options in an instant. 6 years is a huge accomplishment in the Myeloma world. But it's also scary. 6 years of how many, might I have? It hits me: The longer I survive, the less time I actually have...

I read blogs. I read articles. I read Myeloma support group posts. I read Myeloma research. I read oncology and blood cancer websites. I read about the latest studies and new medications. I am so thankful for all the brilliant scientists continually researching options for us cancer patients. I read about Myeloma continually. I am fascinated, yet horrified. I am shocked, still stunned, yet accepting of my situation. I realize more and more each day, month, year, I really don't have the choices I used to think I have.

Cancer's reality "sinks in" more each year.

Myeloma isn't a purchase I changed my mind about that I can return to a store. "Whoops, no thank you. I don't like you anymore. I'm done with you. You don't fit into my life. I'm returning you, you my Myeloma diagnosis". Ya right. Not an option. Not possible. Myeloma is me now. I used to tell my students "make your "monsters" your friends". Don't run. Confront and deal with your issues. Don't try to control what you cannot control. Be aware. Let it go. Now I must practice what I taught. It's really hard to digest all this. Even after 6 years. I always laughed at the "My" in Myeloma. I am Myeloma, and Myeloma is me.

I could link dozens and dozens of articles here. I could site dozens and dozens, hundreds, of amazing blogs here that tug, rip at my heart, and ram reality home to me and other Myeloma patients. Read the blogs I have linked to the right (below). Read the links within the links within the links of these blogs. Read the stories. Read everyone's reality. Myeloma permanently, indelibly changes lives. There's no going back. There's no telling Myeloma to go away. Or to surgically remove it. Myeloma is systemic. It invades our bodies. Permeates everything as it travels, courses through our blood stream, through our bodies, turning our bones into honeycomb lesions, cracking, crumbling, breaking once strong bones. Myeloma is stealthy, conniving and devious. Medications stop working eventually. Organs become exhausted after being constantly bombarded with never ending treatment chemicals. Germs invade. Our bodies become too compromised. Myeloma kills.

Make NO mistake. I am deeply grateful. Revlimid, Dexamethasone, Cytoxan, Melphalan, Revlimid again, Dexamethasone again, have all saved my life. Kyprolis and Dex are now currently, continuing to save my life. You are my elixir. I am in awe of these chemicals coursing through my veins, doing their chemical medical magic. I am fascinated and deeply appreciative. But it's hit me lately. How many medications I have "used up". How many more will work for me, until my options run out... It hits me in the chemo infusion lab, where I see patients (possibly) "sicker" than me, who may not be responding to their chemo medications as well as I am. That will be me one day. One day, I will run out of options. One day. But right now, thankfully, Kyprolis is magic for me.

This new Monday, Tuesday ritual of going to the chemo infusion lab is so surreal, yet so very real. The staff is amazing. They work so hard. They care so deeply. It's not "just a job" to them. They hook us up to our life-saving chemicals. Check, hang, recheck. The incessant beeping of the alarms. I marvel at the chemical content in the bags hug on my IV. I marvel at these clear fluids, how they drip drip drip, precisely dripping into my veins. How many needle sticks have I been stuck with in over six years! 600? 6000? I watch the needle inserted into my vein.
2x per week. 6 times per month. I don't understand how all this works (from a Bio-Chemical perspective). It's just magic to me. Chemo in. Myeloma out!

Honestly, I'm kinda scared now. When I finally accepted that Revlimd wasn't killing Myeloma much anymore, and my numbers were escalating, I knew I had to switch. I did. And I should have earlier. My results now are nothing less than miraculous, in just a few months. Just from November (6 treatments), December (6 treatments), and now January (soon to be 6 treatments). 6 yes. 6 per month. 6 for year #6 lol. Everything is 6 in 2016!

Even though I read insatiably about all the new medications approved and new medications in the pipeline for Myeloma, I'm scared. One day I will run out of options. I didn't really fully process this before when Revlimid kept working for me. I do now. I get it now. I am totally dependent on the continuous flow of new medical chemicals to save my life, to keep me alive. I am totally dependent upon all the brilliant scientists, researchers, doctors, nurses, the healthcare system. I am totally dependent upon what others figure out to keep me alive. I have to be on "something" "forever". I read too much about how other Myeloma patients don't have any more options. How others aren't responding. How their options have run out. How they've used up all their medical chemical options. It's really scary. I am very sad for them and their families. How much time do I have?

I haven't been into my office since late October 2015. That's really huge for me. It's really weird. It's really life changing for me. But I don't have a choice now. Back in 2010, I dragged myself to work when I shouldn't have, during initial treatments. How ridiculous and foolish of me. So desperate to be "normal" and deny my diagnosis. I dragged myself back to work too soon after my summer 2010 Stem Cell Transplant. I was too desperate to get back to normal. Not accepting my "new normal". Too desperate to take my life back. Too desperate to erase cancer and Myeloma from my life. Stupid. I got sick. I tried too hard to be normal. I tried to pretend Myeloma and cancer was behind me. Thinking I was in remission, and I never had to look back. Ha! Stupid! But it worked for me then. I tried to be normal and do normal things. But I only sabotaged myself. Myeloma came back. What was I thinking. I was thinking I was different. I'm Julie and I can beat myeloma. Ha! Nope. Myeloma beat me. Myeloma came back. Gradually at first. Then the roller coaster results. Then the ascension up the Myeloma mountain. I don't know when I can go back to work now. Monday and Tuesday are infusion days. Wednesday and Thursday are crash I feel gross days and I'm in the bathroom days. Friday I feel a little bit better. Saturday I feel better. Sunday I begin to feel pretty good. Then the cycle begins again. Myeloma: You. Stole. My. Life.

As you know, I'm fascinated with numbers and numerical connections in my life now more than ever. So in thinking about how I've rolled over to 6 years of surviving myeloma, I got to wondering the derivatives of that all important 6 in my life. I am not the sharpest tool in the shed when it comes to mathematical formulas lol, so Google helped me with these numerical realities of how long I have been battling myeloma:

6 years x months = 72 months

72 months x days = 2190 days 

2190 days x hours = 52,560 hours 

52,560 hours x minutes = 3,153,600 

Really! Wow! I've spent way over 3 MILLION minutes dealing with Myeloma! Can this please be a lottery, where I get a dollar for every minute I battle.
Actually, I have won the lottery. The lottery of life. I am still here Myeloma. You haven't won yet. Be scared Myeloma, you devious evil insidious scheming cancer.. Kyprolis and Dex is here to gobble you up, and spit you outta my system!

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

It's 2016! Hello to Posts on the 6's

Happy Happy New Year Everyone!

1.6.16
Hello number 6
2016 brings me to 6 official years of battling Myeloma. 6 years.
6 + 6 = 12
Yep! 12 months of posts on the 6's coming. These number correlations in my life never cease to amuse and amaze me!! And how 'bout that 6 in my age too.

It's Wednesday 1.6.16 and already 2016 has started out dramatically and symbolically for me. Monday, just after the New Year's holiday weekend (not that I did anything remarkable), I had my 6th, yes sixth!, Bone Marrow Biopsy. Ugh and Ouch. What a way to begin the new year right?! I have a love/hate relationship with BMB's, like all cancer patients do. They are incredibly painful, yet they are so incredibly informative about our "exact" cancer status. So yes, I brave up, shut up and just do it. I often think about "pre-gaming" with pain meds, or asking for "knock out" drugs, but then I just breathe deep and go with it. I'm so tired of being STRONG, but so used to it. Just my nature. No choice.

So at 1:30ish I had the procedure done. Yes my kind doctor numbed my lower hip area as much as she could, and continued to, as I felt incredible pain. She was swift and accurate and calmly talked me through her every move, which I greatly appreciated! My two nurses assisting her were wonderful and caring. The pain, the drilling feeling, the pounding feeling, the coring/cutting into the bone feeling,- it really hurts. I can't accurately describe it. Bone pain is different than any other pain. It's truly amazing what one can "get used to"...

BMB's are always just so dang symbolic for me. They remind me I really do have cancer. They remind me and confirm to me, that I am sick. They remind me how out of control I am of my body, my life, my situation, my body's bio-chemistry, and my options. I don't cry much over my diagnosis, or my life's circumstances, or my status. But I do cry during this procedure as it's just so dang symbolic! I cry at the pain. I cry at at the "why". I cry because I can't believe what my life has come to. Then I take deep breaths, breathe deeply, talk my self silently through it, bite my lip, brave up and it's over. I wipe my tears away, and move forward. I thank all of them for their professionalism, kindness an caring. And then I'm off to blood tests before my 2016 Kyprolis infusions. Boom. Bam. Boom. Bam. You're a cancer patient Julie. This Is Your Life.

I walk the hall to the blood test lab. I've just had a frikn Bone Marrow Biopsy. I hurt. I hurt mentally. I hurt physically. I walk the hallway to the blood test lab. My diagnosis, my procedure, invisible. I smile. I nod. I have shoulder length blonde hair now. I wear make up. I look "normal". No one knows my story. I don't know their stories. I have a medical ID bracelet on. My diagnosis, invisible. No one knows what I just endured. No one knows I have terminal incurable myeloma cancer. I smile. I walk into the blood draw lab. I offer my arms to the needle vampire. I see my burgundy blood. I visualize the cancer cells in my blood, in the vile. I wonder what story my blood will tell today. I walk the hallway back to Hematology Oncology. I chit chat with the nurses, I smile, I thank them. I suppress my feelings. I take my seat in an infusion chair. I look around me. Every chair has a cancer patient. Patient patients hooked up to IV's receiving dangerous chemicals that are so ironically life saving. Life extending. Death preventing. I'm sore. I hurt. I smile. I "fake it, til I make it". First Kyprolis infusion of 2016. I love you Kyprolis. You ARE saving my life! My medical team is saving my life. They are all amazing, and I appreciate them so very much! Hook up. Suck it up. Smile. Grateful. Appreciative. Shocked. How'd it come to this. But I am here. I had yesterday, I have today, I hope for tomorrow!

What I Wished I was doing

Rather than What I was doing

What I dream I Might do one day

6 Kyprolis infusions per month, 6!

 Some where... over the rainbow... 

Somewhere went my life

What would that wish be...

Where will 2016 take me, take you?

Breathe, Smile, Inhale, Live. Life. Fully.

Don't wait! Go. Do. Be. See.

Make 2016 an amazing year!

So many unknown roads

in a cancer patient's life

I am truly grateful for my 6 years. I've learned so much.

I've seen so much, I've felt so much, I've endured so much.

I am 6 years older, wiser, aware. I am a 6 year survivor!

To. Be. Continued. On. The. Six's 

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