Meds vs Fun… To Take or Not… That is the Dilemma!

Hello 10.17.17

8 years ago I had some routine blood tests that turned out to be nothing near routine.
8 years ago, unbeknown to me, I was beginning this crazy myeloma journey.
8 years ago I wasn’t well, but I didn’t know how “unwell” I really was.
8 years ago I was in a very serious “critical” situation, but I had no idea.

Recently, I’ve been pretty obsessed with my upcoming 8 year myeloma diagnosis anniversary. Quite frankly, I’m “surprised” and super proud that I am “still here”. Each day, week, month, year that I survive, I’m incredulous. And when others are too, I smile and say, “you’re right, It Is pretty Amazing”!

I then agree with their shock and awe, “Wow” comments:
“Wow Julie, I can’t believe you’re still on chemo”- (I laugh and say that I’ve never Not been on chemo lol, and because Myeloma is incurable, I will always be in treatment… forever and ever).
“Wow Julie, it’s amazing you’re still alive… considering the odds and statistics!” (I laugh and say, I know, it is amazing, right!)
“Wow Julie”, can’t believe how long you’ve been fighting cancer!” (I sigh, and acknowledge how myeloma has owned me for almost 8 years now.)
“Wow Julie, your hair!” (I laugh and point to my waves, and say how fun it is to see how each treatment affects my hair!)
“Wow Julie, you look so good”. (I smile, say thank you, as luckily I can put make up on, fluff my hair, and Not look like I do when I wake up, or when I don’t feel well. And, I mention I don’t go out and do things when I don’t feel good, so people only see me on “presentable days” lol.)
“Wow Julie, I can’t believe everything you’ve been through!” “Wow Julie, I can’t believe all the chemo you’ve been on.” (I sigh and acknowledge how exhausted I am from this daily battle for my life…). Exhausted, but very grateful!

Yep, I too marvel at my status. I agree with everyone’s surprise and curiosity at my situation. I feel the same amazement. Myeloma is just so mysterious. What is it really? How did I get it? How can I still be a semblance of “me” and have this deadly cellular monster coursing throughout my entire body? Most can’t comprehend that I have been in continuous treatment since my Dec 2009 diagnosis, and that I have to be, to stay alive. Myeloma is a forever battle. Myeloma is incurable. All of us fighting Myeloma, have to fight 24/7, everyday, week, month year. It’s relentless, so we have to be unrelenting.

Take a look at this good news, proof of how these powerful meds- (Darzalex, Pomalyst, Dex steroids), are saving my life. Of course, I’m still “Abnormal” and will always be Abnormal (lol), but my labs are not sky high outta control, like they were earlier in the year.

IgA even went down a few points!
Shows my roller coaster drama ^
Not Normal of course, but I’ll take it!
No M Protein spike!
It’s “Abnormal”, but not measurable
Truly, I live my life, One Day At A Time. I really have no idea what each day will bring. Yes I know, same for everyone else. But imagine, going from “predictable normalcies” in your life, to a life not in your control any more. As much as so many say, “don’t let cancer rule your life”, sorry it does for me. Myeloma and medication side effects completely control my life. Imagine, KNOWING that each week, yes, each and every week, you know you will be sick, or unwell with side effects. Imagine knowing, that no matter what, to survive, you will feel “sick” for a few days of each and every week. That’s the “new predictable normalcy” in my life. No vacation from feeling lousy every stinkn week. This reality hits me when I try to plan any events. Everything revolves around when I take which meds, or when my Darzalex infusion is. Or when I take steroids. Or when the 21 days of Pomalyst really drags me down, and I become Neutropenic. Simply stated, my life is controlled by myeloma, myeloma treatments, and when side effects hit me.
Every week, the same drill… knowing you have to plan around being sick, every single week. Imagine that. 
Well, I just couldn’t fit in being sick end of last week, or this coming week, as we had so many appointments and potential events. So I decided to skip my weekly steroid regimen. Before you get mad at me, this is what happened: I took my weekly 20mg Dex steroid dose over 2 days the first weekend of October, as that “worked out” in my life. I get a great boost from taking them, but I have to anticipate and plan for the CRASH. Several days of crash, where I feel real lousy, beat up, achy, extreme fatigue, exhausted, headachy, GI stuff, and overall “sickish”. Then by the time I recover, I have a day or two to get things done, or have a social event before it’s steroid pounding time again. Then it’s steroid crash again. So by the time I would have taken them last week, or this week, and then allowed for the crash, it would have intersected several important events last week and this week. Confusing, right?. Frustrating, yes! Just imagine, having to anticipate being sick every week. Every week of your life, for the rest of your life.
Such a vicious circle this myeloma lifestyle is. I have to take life saving meds to stay alive. But those life saving meds make me feel lousy and steal my ability to “live life”. When I feel lousy, I don’t feel like engaging in life and going places. So I don’t have “much of a life”… but I have to continue to take these powerful cancer killing treatments to stay alive, to enjoy the limited life I do have. If I don’t do the treatments, then the cancer becomes more vicious, and I won’t have a life.

 But there are times, like this month, and probably November and December, that I will “cheat”, and skip the steroids, so I can at least anticipate more than a few good days, and get out and enjoy some fun events with family and friends. This Saturday, if I feel good, I’ll be at the doggie version of Relay for Life, Bark for Life. Then Sunday, if I feel good, I was invited to bring my lil “Bucket List Bug” to an Oktober Fest event. So you get it. When would I have taken steroids, knowing I had appointments during the week, and fun on the weekends?

Thanks for reading, caring, commenting and checking in on my crazy myeloma life! Hoping you and yours are doing well, and you too can figure out a way to get out there live your life :))

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