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...
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!
Hello monthly Zarxio (Neupogen) injections.
I'm such a pro now at self injecting.
The things we get used to...
Sometimes I just cannot connect with being a cancer patient.
But then I see my pictures, and it becomes more real.
This is me
This is my life
My life as a cancer patient
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:
I forget her name, but she's 14 and a shelter rescue.
Her human was a sweet cheerful senior lady volunteer.
7, yes 7... all of 2017
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 happy,
live well, and make a difference somewhere, somehow, with someone or something
as often as you can
Julie,
ReplyDeleteYou have such a gift for sharing your journey. I am thinking you still kept it a little 'rose colored glasses' update:)
My doctor mentioned at my last appointment that we needed to start testing blood sugar levels each month--because of the steroids. Since I have a blood glucose tester in house (grand is Type 1), did some testing at home and found my blood sugars were elevated. Switch to a low carb diet, and it really has changed how my highs and lows go with the steroids. Since steroids can lead to Type 2 Diabetes, felt I really need to make the diet change, pleased that it also leveled out the 'rollercoaster' steroids. My week is much more 'level' now and I was even able to get a mile jog in on the lowest energy day of the cycle.
Get new labs next week, so will see if they confirm or reject my thoughts.
Sorry for rambling, I still have pretty good CBC numbers, so not dealing with the struggles you have.
I just saw a video that said 'grit' was the difference between a successful student and an unsuccessful one. I think you deserve the 'grit' award.
Love ya, JC
Awww loove you cowgirl!! Great comments! Thank you! Yes, I am the "eternal optimist with rose colored, and scented, glasses on :)) So glad you are doing well on your treatment! Just Pom and Dex at this time? That's awesome! And so happy your energy is up too. And yes, the Dex and glucose sugars are worrisome. I really watch too. First I don't want to be a chubby filly and 2nd, like you said, how it can really affect our potential diabetes status. Had a coworker that wound up in the hospital from high sugar levels from steroids! I would love to eat more breads and cookies, but I don't allow myself, or buy it lol! It's how I have the herd on grass hay, and only use alfalfa when it's really cold. Plus our lil mini pony has foundered, so she only gets grass hay!
DeleteI am so happy for you Jan, that Pom and Dex is working for you, and you don't have to do additional treatments! Yippee! And yes, we both have GRIT, in our souls, teeth and boots :)) xoxo
Love your commentary. You do have a gift for writing. enjoy your posts a lot.
ReplyDeleteAww Wendy! Thank you so much for commenting. Means so much to me that my blog friends appreciate my musings. I write from the heart, and my spontaneous thoughts for that day. I notice that my thoughts and posts affected by my meds, and where I am regarding my treatment crash. Thank you so much for your sweet comment, and I hope you and your family are doing well. Thank you! xoxo
Deletei like your commentary. Your fluency for writing is amazing. i enjoy your posts a lot.
ReplyDeleteHello Meshack, thank you so much for letting me know you enjoy my writings and posts. Wow, all the way from Univ of Nairobi! So very fun for me to know how "international" my blog and "following" is. You made my day, letting me know. Thank you, and please let me know how you found my blog. Is the Univ of Nairobi doing research in Myeloma? Seeing Myeloma patients? So very interesting to be connected across the globe! Thank you!!! :))
DeleteHi Julie! Introducing myself, my name is Bernadette, and I've been keeping track of your blog for a longish time because I look forward to your entries! Came out of lurkdom to thank you for the link to the Cancer Therapy Advisor. Browsing it now, I see it's the site I didn't know I needed! Guess that means I'll have to check out the rest of the links too :-) Thanks again, it looks like an amazing site.
ReplyDeleteHi Bernadette! Thank you so much for commenting and letting me know you follow my blog. I love hearing from my "lurkers" :)) How long is "longish"? :)) Tell me about you. Are you a MM patient, or someone you love? And so glad you like my links. I do have many on the R side of my blog, and below, and I too, often forget they're there. I hope all the links still work! Thank you for letting me know posts are meaningful to you Bernadette! :))
DeleteHey Julie! So glad to hear that your regimen is holding down the myeloma. I first found your blog about eight months ago I think, from a "MM" search. I was diagnosed about a year ago, and am recovering from my auto-SCT. There's so many links to check out that I haven't been through them all yet, but if I find any non-workers, I'll let you know ;-) Be well!
DeleteBernadette
Hi Bernadette! Wow, go you! Congrats on your successful treatment. Yes, take it slow and carefully with your recovery. I rushed mine a bit, and tried too hard to recapture my pre MM life. Are you on Maintenance Revlimid or? I was for almost 2 yrs and that worked well for me. When we tried being off all meds, boom, MM came back within 9,10 months in 2013, and I've been back in treatment ever since. Stay well, and thank you for letting me know your story :))
DeleteJulie!
ReplyDeleteGlad to see your numbers are staying put and where you want them to! Trusting the fatigue will subside and you can enjoy your good days! My mom is on the same treatment protocol as you, she is on her monthly infusions and she is doing well with them! It is a nice to lead a normal life for majority of month!
We are soaking up every bit of summer, our falls in Alberta are virtually none existent! We usually get snow before Halloween here!
Enjoy your summer!
Much love from Canada!
Una <3
Hi Una! Thanks for being such a loyal follower :)) So happy to hear that Mom is doing well, and I appreciate knowing she is doing well on the monthly Darza protocol. I'll have infusion #18 this coming Tues, and I have thought a lot about the monthly protocol, and do worry that my myeloma will take advantage of it. Have Mom's #s stayed down even on monthly Darza? Is she also on Pom or Rev, etc? Wow, snow before Halloween... sounds amazing, as it's supposed to be 105 here next week :((
DeleteGive mom hugs of support from me, and thank you for your continuing friendship Una :)) xoxo
Hey Julie!
DeleteMy mom is also takes Pom and Dex, the Dex only the day before and of the Darza infusion. In regards to her numbers they have stayed stable with the monthly infusions! I trust you will have the same results =)
Hi Una! Wow, that's such wonderful news for Mom! I am so happy for her treatment success and your news gives me hope that the monthly Darza regimen will work for me too. Sept begins my monthly schedule... yikes we'll see what happens. So Mom only takes Dex 1x per month now? I will have to ask my Dr about my new schedule, as I believe she planned for me to still take Dex weekly, regardless of Darza. Thank you for your friendship, and hugs to you and Mom! xoxo
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