Hello August!
Looking forward to never ever seeing another July like this past one. Cannot believe all the drama I experienced, and I am so glad to have it behind me!
Had my Darzalex infusion on Monday, July 30. Took 40mg Dex steroids prior to, so I always feel ok on infusion days. I "enjoy" the up up up, relief relief relief from the steroids, then the sleepy calm of the Benadryl during the Darza infusion. I never did much medication, not to mention, never doing drugs or alcohol prior to my myeloma diagnosis, so here I am mid life, experiencing these crazy rides from the cancer meds. Of course the medication CRASH days later are no fun, but as long as I don't break any more bones, or have extreme fever and pain beyond pain like I did from the Zometa infusion, I can suffer along with all this insanity. (Yes... the future... I know... more is always coming... Myeloma will continue to mutate and challenge me forever, until, until... but I don't focus on that... One day, One drama, at a time for now..., I just want to feel somewhat ok, if I can, if myeloma let's me... I live in the moment now, I live today...
So just a quick update prior to my usual On The 8's update, as I had such awful news my last few posts. The "good" news is my IGA "only" went up 100 points this month, the Zarxio brought my WBCs up into the super "normal" range, my rib is better, pain and fever from the stikn Zometa is gone, and my Dr and I agreed to going back to Darzalex every other week, to see if that will bring my rising IGA back down.
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And now on this again.
Was on it in 2010 at the beginning of all my treatments,
due to how immune compromised I always am,
and the high dose steroids.
Looks like yellow preschool finger paint!
Pneumocystis jiroveci pneumonia
(previously known as Pneumocystis carinii pneumonia or PCP)."
of the germ responsible for this infection."
The longer myeloma and I have this crazy relationship, the more I know I just don't want to suffer, and feel awful. I'm just not as "brave" as I used to be. I prefer not to jump from one type of treatment to another (if possible), and I definitely don't like the risk of UNKNOWN NEW SIDE EFFECTS FROM NEW TREATMENTS (altho I know this is ultimately unavoidable).
Everyone is suggesting I get into clinical trials, do another SCT, or go for the CAR T, or change this, change that, get 2nd, 3rd opinions, etc etc etc. 8 years is a long time (at least for me) to be on continuous treatment, so if I can lessen my side effect suffering, I'm all about that. Plus my stats right now just aren't anything to "panic" about. My IGA is "only" 3x the high end of normal, I don't have a M Protein spike, and equally important, my organ status is good! The elusive "remission" is not my goal. Feeling ok, and having myeloma "controlled" is my goal. And of course... QUALITY OF LIFE! Everyone approaches this crazy ride differently, so for me... less is more.
My Drs have never let my roller coaster status get out of control. We treat continually, and when the numbers jump quickly, or seem to not be responding to the current treatment, we switch. My Drs hit my myeloma intense at Dx 2009/2010, then after coming out of SCT "remission" mid/late 2013, then late 2015, then late 2016, early 2017. I'm super happy that Darzalex, Pomalyst, Dex has been working for me since March 2017!!! I'm actually kinda spoiled by it, hence not want to switch, and hoping going back to every other week, will bring me back to where I was this time last year! Yep, as awful as all this is, thankfully my body responds well to treatments... when it doesn't... I'll cross that swaying bridge when I come to it. But in the meantime...
Just discovered your blog and writings today... THANK YOU dear one... for your beautiful smile and truthful, honest, and "looking for the good"... I love the dogs and the donkeys in your photos... I love both though I have to drive a little ways to visit donkeys in an old farmer's field to get my donkey 'fix" in person. I was diagnosed last year, 2017. I am a writer, photographer, dog lover... and I googled "I want to do so many things but the pain and fatigue from MM, fractured bones is too great..." something like that... and as I paged forward past page one, two, three of google's items to my search question... I found you. Oh, lucky day! (THANK YOU for your blog... I will be visited often I'm sure. How much I can read depends on how long my back will let me sit... *sigh*). Kiss your dogs for me... and thank you for your beautiful spirit. - a fellow traveler on this crooked road, Suzi
ReplyDeleteHi Suzi! What a sweet story that is! I'm so happy you found me :)) And I so appreciate you writing and letting me you did and how you did! Sorry you too have joined the MM club, please let me know what treatments you've had and how you are. I didn't have bone pain or bone issues for years and years until just recently. Not sure if saw my post about my Pet CT Scan? Whew, that's a doozy!!
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So glad you like my horses and doggies. I've had animals all my life, but some days, it's more than I want to deal with. Take care of your back and bones, and again Suzi, thank you so much for reading my posts, and for appreciating my blog! :))
Amazing Julie, This Is Roger from the days of NSA/NS your love for horses,dogs and just plan others is unspeakable. Like u rescuing me from the trash can of life and was there when needed most needed reaching out for direction, this was no correcdence just meant to be. U helped me profoundly change my life with your uplifting words and loving heavenly spirit and 2nd chance to blossom from the inside out.I overcame not only my stuttering,selfishness,pride and became liberated from living a lie and let go of the poisonous belives That were not real. My message is I will see U on the other side and profoundly say I will always love You as a friend and my God sent earth Angel as one of many to give light and direction. Julie feel my special spirit and let it uplifting feel be felt and burn with great healings and being touched by a Angel. I feel grateful We meeting on the trails of this life we’re still living. love Roger ��
ReplyDeleteRoger Roger! So great to hear from you!! And thank you so very much for your wonderful comment of our journey many many years ago! I am so happy you found, or follow my blog and you commented. I am so glad to hear all our conversations back then had an impact and you were able to all your options beyond the negativity you were experiencing at that time! I sent you and email to your aol.com. Write to me and let me know how you and your family are. Can you believe our kids are 30 something now! And HI to Laurie too! Thank you so much for your kind comment Roger. Means a lot to me!! :))
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