Why oh why is life so complicated and challenging. I have so much to be thankful for, yet everyday I struggle with “What The Heck Happened To My Life”. I continuously grapple with the “whys” of life. On so many levels… not just myeloma… Yes, my life would be simpler, if I could just “let go and let it go”, but that’s not my nature. So much has changed for me in so many ways. So much now, is so much more complicated…
Tuesday, August 15, was my monthly myeloma status Dr appointment, with my Darzlex infusion immediately following. Going into this appointment, I really didn’t know what direction my recent labs would reveal. I’ve felt ok, except for the extreme debilitating fatigue from the ups and downs of weekly Dex steroids, and from the power of 21 days of Pomalyst pills pummeling my system, (which lowers my WBCs and immune system), and from the every other week all day Darzalex infusions, and then subsequent delayed side effects from all 3 meds. Some days I just feel so beat up, but I hesitate “complaining” as it “could always be so much worse”.
I follow so many myeloma groups and read so many articles, that my head spins with everyone’s life altering myeloma journeys. The suffering of myeloma patients, actually all cancer patients, actually all of humanity and animals that are suffering, really affects me. It just pains me for them, so I tell myself, “just shut your trap Julie, things could be so much worse for you!” I know we should “try not compare circumstances”, but really, how can we not. Here I am 7.8 years after diagnosis, so grateful, yet so frustrated with my situation. I’ve been through more rounds of chemo than I can count, and since I have said this so many times before, I think I will count one day… But truly, if you’re not ill, not challenged daily, and not struggling with just trying to feel and be ok day to day, one really can’t comprehend and know what it’s like to have “being sick” and “feeling unwell”, one’s daily norm. And not just on the illness level… there’s just so much suffering on every level in this world. I just don’t get it. So many challenges for so many, all the time, unrelenting.
I used to feel so “relieved” after accomplishing challenges. You know, that big exhale sigh of, “whew, wow, that’s done, I feel ok now”… happy, accomplished, thoughtful, pensive, fulfilled, but “relieved” that that mountain was climbed. Now, it’s more like, “oh boy, ok, what challenge comes my way today, tomorrow, next week”… No time to chill and let my defenses down anymore…
Ok, I’ll stop perserverating on my frustrations and mental conflicts Vs my gratefulness. It’s all so complicated… Here’s my pretty good news from Tuesday:
I’m surprised and thrilled my IgA is still hovering in the upper 400’s! Above “normal” of course, but unbelievable how well I continue to do on Darza, Pom, Dex. Yes I am so lucky and thankful for the success of my treatment, and all that is involved in me still being here year 7, inching towards year 8!
This is me
This is my life
My life as a cancer patient
Just before my my Dr appointment and entering the chemo lab, the Oncology Department had a sweet visitor. Of course I couldn’t resist the opportunity to practice selfies with this cutie:
And finally, while I was wallowing in my mini self pity party yesterday and today… I came across this story (linked below) of this amazing HERO!. Shuts me up fast, as under my circumstances, I am really am quite functional, and have “quality of life” most days. No matter how yucky I feel, I am ambulatory, have my wits about me, have great medical coverage, have lots of wonderful loving family and friends, my current triplet cocktail is “still” working and my bones are not cracked and broken from myeloma gobbling me up (yet)… However, I do often reflect that I do have a “hole in my head” – a lytic lesion on my L side skull, and a solid external tumor on my R side head, and that’s a reality check for me…(albeit kinda funny having a “hole in my head” :))
Yes I have so much to be grateful for, no matter how complicated my life is. No matter how frustrated I get because my life took an unwanted, unanticipated fork in the road, on so many different levels, that I never anticipated, I move forward daily, looking always, for the best in the worst.
This man’s story is the epitome of bravery, resiliency, success, heroics, perseverance, intelligence, and he’s a true role model representing incredible strength and the ability to overcome extreme obstacles. Honor him, and please read his story!
live well, and make a difference somewhere, somehow, with someone or something
as often as you can