Indeed, life is always full of surprises.The minute we think we can predict what's next, life throws us an unexpected twist, a curve ball, a fork in the road, or decisions we didn't expect. Each day I wake up, look around, and giggle that I am still here. So grateful, often surprised, always wondering what's next.
Had my Darzalex 6 hour infusion last Tuesday July 18. Fortunately, all is pretty routine now on infusion days. I take 20mg Dex steroids when I "force" myself to get up around 7am. Hydrate, figure out what my "GI biology" is planning, and get on the freeway between 9-9:30. By the time I arrive at the chemo lab, the steroids have kicked in a bit, and I feel pretty good. Such irony to arrive at a chemo treatment lab feeling ok and spirited, and "not looking like a cancer patient". Almost always I meet up with "regulars" there, and secure a chair or bed by someone I know, or off in a corner so I can hibernate and read for the day, or until the bag o' Benadryl tries to knock me out.
Here I am towards the end of the day,
looking blurry from all the meds.
Note the "200" turbo infusion speed.
We start the Darzalex at 100, then 150 then 200,
as I'm on week #15, and all's going well.
Met with my Dr prior to my infusion, and all my labs look awesome! See my 7.17.17 post for all my lab details. Since I seem to be doing ok, I "jokingly" said to my Dr that perhaps if I was ok enough to travel, perhaps I could take a handful of Zarxio injections with me to keep my immune system strong. Really, I was just joking, but she quickly agreed and liked the idea. So perhaps a trip may be in our future... just have to get Jim's leg better... I always marvel at all the amazing medications that heal us and help our chemistry be ok. I had so little health problems prior to 2008, 2009, that I just didn't realize all the meds out there, ready to "fix us up"! Thank goodness Darzalex, Pomalyst and Dex steroids are currently my magical elixir!
And that's my short and sweet update. Lest you think all is glitter rainbows and unicorns, I of course have a list of side effects, crash days, blah days, swollen days, GI days, but I rebound on my Darza week off, and I'm beginning to accept invitations to fun events occasionally. I don't understand this life, and will never stop questioning why, how come, why me, how'd this happen. But I move forward daily, often in awe of how close I have come to "not being here", but reveling in how ok I am this month. I always think about myeloma eating me up from the inside out, and marvel at the powerful treatments fighting my cellular battle. It's mind boggling knowing it's these meds, continuous for 7 years now, responsible for keeping me alive, month to month. I reflect on my "hole in my head" lytic lesion of the left side, and external hard tumor on my right side. Crazy stuff right?! But I am here, and I do what I can do, when I can, and most importantly, I count my blessings daily. Heck, how many terminal cancer patients on a triplet chemo cocktail can boast they go from the chemo lab to the horse arena, to toss hay and rake up "road apples" :))
My backyard view the other day!
Thanks for checking in.
Hoping for good news and happiness in your life always
Ps, 7 years ago tomorrow, July 28, I was finally released from City of Hope hospital, surviving my 2010 Stem Cell Transplant! Here's my post from back then.
Live happy,
live well, and make a difference somewhere, somehow, with someone or something
as often as you can
Just checking in.. glad you're going to the horse arena to toss the hay!!.. still marveling with your strength, humor and coping mechanisms.. like I said.. boring is good..we go to Mt Sinai in NYC on Thursday..always that trepidation before these big appointments.. hopefully my husband, Jim, can stay on just the Rev.for now..been three years with assorted protocols.. hope your husband ,Jim,can get some relief for his legs...think of you often.. Karen.
ReplyDeleteHi Karen! Thank you so much for all your support and enthusiasm for my posts :)) Glad your Jim has had so many years of success with Revlimid. I did too early on, and who know, maybe, if need be, I may cycle back to it one day! Let me know how his appt goes. My next one is Tues Aug 15. Hoping you 2 are able to get out and about and "toss hay" too :)) Thank you again for all your support and friendship xoxo
DeleteJulie.. you truly are a special person..hoping for positive results on the 15th... Jimmy's numbers are stable .. but more concerned with the creatine which is steadily rising.. have to do more appointments with kidney doctor. He also has those horrid gastrointestinal problems and fatigue. But the Rev is keeping things stable..kappa is about 40.. never normal range..considering he was about 1100.. with spinal fractures..so we are grateful..but as you know. It's very very difficult three years on various protocols.. cytoxan..velcade. Dex..Rev. kyphoplasty..we are kind of at a low point..he had his off week and didn't bounce back too much. .but your blog and the sharing of your experiences continues to give us hope..and Julie..please know from the bottom of my heart ..how much you are appreciated and needed.
ReplyDeleteHi Karen, thank you so much for your comments, and letting me know how much my posts mean :)) Keeps me motivated to continue to post my rants and musings :))
ReplyDeleteSo sorry your Jimmy is having such a challenging time :(( Revlimid caused me, as you say, "horrid GI" issues. I have several funny posts about almost not making it to my bathroom! Rev changed my life, due to the "expected" and "volcanic" reax for the several years! Check out my previous posts, such as
https://juliesmyelomamoments.blogspot.com/2015/03/when-abnormal-becomes-normal.html
and
https://juliesmyelomamoments.blogspot.com/2015/07/that-fine-line-between-tradgedy-and.html
Actually most of 2014, 2015 and into 2016 Revlimid kept me close to home and so challenged re eating. Looking back, I shouldn't have been so concerned taking Imodium, as that was a life saver for me!
Ok, sweet friend, I will email this you too!
Thank you for always checking in and caring as you do, and I hope Jimmy feels better and you 2 can get out and about! xoxo