(I’m still sick… this has been a really rough bug…)
When I was first diagnosed with Myeloma, I took it on as a Challenge. I thought, “Ya right! Julie… Cancer… Umm, Noooo!” It’s all a “mistake”. I’ll show you cancerous cells. You don’t stand a chance with me. Cancer, you’ll be gone in no time, and I’ll be back to my “regular life, I’ll show you Myeloma!” I took cancer and my Myeloma diagnosis on as just another challenge in my life. Not my first, not my last, I breathed. I really wasn’t panicked or concerned. Really I wasn’t. No matter how much I read, how much I researched, I wasn’t really scared… just shocked. And pissed off. I trusted my Doctors, my treatments, my medical team, and I just carried on as “normal”. Just another challenge, just another “project” to complete. Myeloma was just an inconvenience in my life.
Well time and treatments and illness wears one down. Chronic illness, feeling chronically ill, and being ill wears you down. Continuously being sick, feeling sick, thinking about sickness, avoiding sickness, all wears you down. For some time now, I have gone from seeing Myeloma as a Challenge to a Battle. I don’t feel “challenged” by Myeloma in a positive, “I’ll beat you Myeloma” feeling, like I used to. I feel like I am constantly at war, “battling”, being beat up by Myeloma. I’m in a fight that is wearing me down, stealing all my helium.
To me, the difference is: a Challenge is invigorating and empowering; a Battle is fatiguing and exhausting.
I’m battling a battle I didn’t “ask for”, and it’s so much “wasted” energy invested. (Yes I know, be it a challenge or battle, my efforts are keeping me alive, and for that I am grateful. But it’s just wilting me.) When you take on a challenge and accomplish that challenge, you feel great for achieving and completing that challenge. I’m just worn down from battling and fighting, and I shake my head all the time about what happened to me. A once vibrant, energetic, full of life person, reduced to constant fatigue and illness.
I didn’t think I had changed a lot in 6 years, but slowly now I have seen changes in myself. Myeloma is wearing on me and wearing me down. In the beginning I kind of snickered at having cancer. I couldn’t really relate to my diagnosis. I didn’t own my illness. It was an “out of body experience”. I just always put one foot in front of another, powered on and did what I had to do “to feel normal”, be “normal” and lead a somewhat “normal” life. I was always surprised when friends, colleagues, family were so “awed” at my “strength” and “bravery”. I didn’t feel extraordinarily strong or brave. I was just me. I just wanted to live life, do well, be accomplished, contribute to the world and have fun!
I got away with “not connecting” to a cancer diagnosis, because my initial treatments were highly successful. I went from around 70% cancerous myeloma plasma cells to 10%, in just 6 months of treatment! My July 2010 Stem Cell Transplant did gift me with Complete Remission from August 2010 to early 2013! (Remission preserved though, with maintenance chemo for almost 2 years, so I always felt I was in treatment.) When my numbers started to climb in early 2013, after taking a medication break, I wasn’t surprised, or worried. I was actually expecting it. I always knew and accepted Myeloma was incurable and needed to be continually treated, or it would return. So again, no panic, challenge accepted Myeloma.
Again, I trusted my my medical team and I trusted my body to heal me. I trusted my medications to take the numbers right down again. And they did. Right down the IgA and M Protein came. For a while that is. Then they didn’t. And then the numbers roller coaster began. Then the conversation about changing chemos began. But I still had this crazy optimism that all would always be ok for me. I’m Julie. And things always have a way of working out. I work hard for my accomplishments and I conquered my mountains through hard work, commitment and positivity.
Then things began to seem different. I began to “feel” more like a cancer patient. I began to realize Revlimid and Dex would not always save me. I began to realize I am just like all the other Myeloma patients that eventually start not doing well. I think the turning point for me was switching from oral, pill medications (Revlimid) to marching into the chemo lab 2 times per week, 3 times per month for IV Kyprolis treatments. At first it was, Wow there are a lot of sick people here. Wow, there are a lot of chemo patients far worse off then me. “Just shut up Julie about any of your ails!” I’ll be ok I convinced myself. Wow, look how “sick” everyone else is. Between me and you, I even tried to not look too “good” when I went to the chemo lab. My numbers came down fast on Kyprolis and Dex. I felt back to “me” again. I almost felt “guilty” for how well I was doing. I never stopped working, making plans, trying to do things, trying to lead my normal life.
For 6 years, I never stopped trying to live my life as I always had. Sure 70% of the time I had to cancel plans. Sure I found myself going into my office less and less and less over the years. Sure I had awful continuous side effects that regularly ambushed my plans. But I always felt “it” would all just disappear and go away, because I was Julie the Optimist. I always made sure my “glass was half full”. No matter what. Push forward Julie. You can do it! Sign up, show up, grin and bear it. Keep breathing, keep doing.
Who was I kidding? Ha! Yep, me! 6.8 years has taken a toll on me mentally
and physically. No I’m not depressed, no I haven’t lost my signature
optimism. No need to call the therapist for the therapist. Actually I think I am coming down from my unrealistic cloud of denial I’ve been floating on for 6.8 years and finally recognizing and accepting my circumstances. I think I am finally accepting I am not a well person, I’m diagnosed with INCURABLE cancer, and I have limitations. Many limitations now. I think I am finally accepting I need to get on with life, accept I don’t have unlimited time, and the time I do have, is taken up with illness, side effects, oncology appointments, chemo lab visits, medications, recovery, side effects, illness, illness, illness…
did not accept I had cancer. I just have an annoying “medical inconvenience” called Myeloma. Others had cancer, scary cancer! Cancer you could “see”, remove, recover. But something’s different now. I’ve had 3 major fever bugs this year, and it’s only August. I am being “forced” to accept my circumstances. My body is tired, worn down, so fatigued and I have to pay attention, to the seriousness of my diagnosis. Stop pushing as I used to. Stop working so hard to be “normal”. I have to stop trying so hard to be who I was pre diagnosis. I have to stop seeing Myeloma as a Challenge, and accept I truly am Battling for my life. I’m different now. I have been since 2009, I just wasn’t willing to accept it. I’m still not… but I’m closer. Each exhausting illness slams reality in my face, forcing me to accept my status as a “real cancer patient”. Continuous illness does that to you. It forces you to stare your reality in the face. Stop this silly optimistic denial Julie. Stop putting “things”off. You may not make it to 100 like you thought you might.
live well, and make a difference somewhere, somehow, with someone or something
as often as you can!