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!