Feeling so Fragile

5.28.18

Hello Life…
This crazy life of mine, ours…

I’m still obsessing on my Holes. On my Lytic Lesions. On my Plasmacytomas. On my holey bones. On how my perspective of my self, my body, my life, my longevity, my journey with Myeloma has now changed. Yes, changed. Knowing I have INNUMERABLE HOLES IN MY BONES, has really really affected how I see my incurable, always getting worse, journey with Myeloma…

I have a new reality, that’s probably not new news inside me
I now know I have holes in my bones
I now know I am so much more fragile than I previously knew
I feel like my bones are made of glass, ready to break at any moment
I feel so fragile, in so many ways
I am so aware of all my aches and pains now, that I ignored before
I am so much more aware of my “breakable” status
I am no longer feeling flippant about my diagnosis, this makes it real
I am no longer in denial about having terminal, incurable cancer

That word “INNUMERABLE” has changed my life…

Over the last 8 years, I never hesitated sharing my story of diagnosis, treatment, side effects, and the mental and physical aspects of being a myeloma patient. I quite boldly and openly, to many people’s surprise and shock, shared all my torrid details. Funny and painful details, medical and psychological details. I shared with anyone that asked. Just like I do here with this blog. I told my story openly, candidly, honestly, without any hesitation. Ask, and I’ll share anything you want to know about my life. It was a crazy, interesting, jaw dropping story for sure.

But I always felt that I was sharing someone’s else’s story. I always felt so disconnected to being an ill person. I never could relate to being a terminal, incurable cancer patient. I just got used to treatment. Went to the chemo lab 2x weekly, or 1x weekly, or 1x weekly every other week, or 2x per month, or 1x per month as I do now. I take “innumerable” pills daily, weekly, monthly, yearly. I got used to the weekly bi-polar steroid life. I got used to not feeling well 4-5 days a week. I got used to feeling fatigued all the time. I got used to feeling “sick”. I got used to being limited. I just adapted and got used to all the physiological changes. But I forged ahead, doing my life, in the small ways I could, when I could. I just continued doing my life, one day at a time, depending on how I felt. I didn’t make huge changes. I was just more limited. Limited in energy, limited in days to do things. Limited in contact with humans due to cootie contamination. Limited in energy in so many ways. Limited by side effects. Oh yes… there was one huge change in my life last June 2017, when all this caught up to me, and I made the choice to retire from my 35 year career as a college counselor…. because of myeloma and what myeloma had done to me and my life…

But I still have my life. A great life, though so limited. I still have a variation of my outdoor, love animals, love nature, life. I still have my amazing life with my family. I still have amazing friends and friendships, albeit, virtually via social media lol. Yes, everything is more complex, edited and slower. But I still have my life.

But How I See My Life Has Now Changed. How I See Myself Has Changed. I Feel So Very Fragile. Like I’m made of glass. So breakable. I now “fear” fracturing, breaking bones. What if I move the wrong way? Turn hard on my clavicle while sleeping? Trip and fall while outside with my critters? What if I just move the wrong way, and fracture or break a leg, an arm, a hip or worst of all, my spine. I feel so fragile, so breakable now.

I have never broken a bone in my life, even with all my horse riding falls of the past! Or from skiing, or hiking, or biking, tennis, or, or, or! Bone issues were for “other” unfortunate myeloma patients, not me. I felt different. I felt I had “escaped” the “bone involvement”. I thought IgA myeloma was different. That I was hit more in the immune system, with my continually compromised immune system, always having to worry about getting sick, and being contaminated by human cooties. I thought I was different. I didn’t think I had Holes in my bones. Innumerable holes, lesions, plasmacytomas,.. Innumerable. And now that I know I do, I know I am not different. I am like any other fragile, breakable lesion infested myeloma patient. Tragedy can strike at any moment. I’m scared in a way I wasn’t before…

My next Dr appointment and Darzalex infusion is Tues June 5. I have a long list of questions for my Dr…
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Some good links about Myeloma Bone Lesions:

pet-scans-for-multiple-myeloma

myeloma bone pictures

multiple-myeloma/treatment-options

myelomabeacon.org/forum/multiple-lesions-starting-zometa

myeloma.org/imf-publications/understanding-series