I am twisted enough to have considered posting on April 1, April-Fool's-Day, something like: OMG! I'm cured! Myeloma is gone! But then I realized that would be a bit too twisted! So I reined in my silly humor, as honestly, rare is the day I feel "good" and that would have been way too misleading.
I'm always surprised when people think I'm ok/off treatment/cured, based on my external appearance. Perhaps it's because I always fix myself up, chat it up energetically as I've always done, and for about 6 months now, I've let my hair grow out. Further, I don't have a tattoo with my Myeloma diagnosis ;) and most have no idea Myeloma is incurable/terminal. So Goldilocks and Revlimid, you confuse everyone!
I had my monthly Hema/Oncol appointment this past week. We reviewed my blood stats, myeloma numbers and April treatment options. We also discussed all my very unpleasant (multiple) side effects. So do you think I wanted to increase my chemo dose and type for this next cycle? Do you think my Dr wants me to?
The answers are:
My Dr = Yes, but No.
Me= I'm kinda of "terrified" of adding additional and different chemo/treatment options. At least my current side effects are predictable and known. Adding additional chemos to Revlimid frankly scares me... a lot.
Me= not brave any more.
My creative combo of Revlimid 15mg alternating with Revlimd 10mg is only kinda, slightly, hardly making a dent in my myeloma numbers. IgA went up this month (boo). But, my M-Protein did go down slightly (yay!) My WBC's and immune system continues to be challenged and very compromised.
Yes, if I increase Revlimid to full on 15mg and add Velcade or another chemo, along with current or increased Dex level, to create a "chemo-cocktail", maybe my myeloma numbers will improve. Maybe not. And at what physiological cost? Much more yuckiness, GI issues, Neuropathy, Fatigue, Nausea, Dizziness, an even more compromised immune system and the risk of becoming Neutropenic... and a much more reduced quality of life. I hardly do much now lol... what would a chemo-cocktail do to me. Force me on disability? Take away what little fun times I have now?
Well my Dr and I decided not to change anything... yet. She's very concerned about what an increased dose will do to my already debilitated immune system. And we both agreed that the slight changes to my myeloma stats were still ok for now. I know what most of you are probably thinking... What are You doing Julie!.. crank up the chemo and hit myeloma hard so your numbers will go down. Ugh, truly, I'm just so sick of feeling sick and I don't want to feel sicker. I'm always processing the concept of "quality vs quantity".
Here's my current stats:
WBC's = 2.8 (low- why I feel so yucky and fatigued), 4 - 11 = normal range
Platelets = 120 (low), normal range= 130 - 400
M-Protein = .96 (yippee! a bit lower than last month), normal = Zero
IgA= 1360 = (up from last month :( 70 - 400 = normal range
ANC = 1.6 (low), normal range= 1.8 - 7.7
So far my kidney and liver function remains stable. Must be all the endless hydration I do!
So that's my update for now.
I do what I can do on the the days I do what I can. Everyone asks why I'm not on disability or retired. I love what I do professionally! I still make a difference in a "few" student's lives, I have a brand new, full window "corner office", I love my colleagues and campus, and it's really not an easy decision to say good-bye to an over 30+ year career. Besides my family/animals/home life, being a college counselor has been my life. It's just not that simple to close the door One Final Time.
Myeloma will dictate when...
Jim and I had an appointment in the "city" on Friday. I decided on an instant bucket list moment and took the LONG way home :)
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!
Julie,you sure have a great work ethic and I know you are helping students byReplyDelete
words as well as example.Don`t know enough to comment on the drugs
you are taking but a doctor friend of mine says new better drugs are coming
frequently-so stay well and stay positive as you do so well!
Hi Ron, thanks for checking in :) yes, there are new MM meds being developed all the time. Guess if I was going to get this stupid cancer, at least there is more awareness of this type of cancer now and new meds being developed all the time. Not sure how long I can work, but one day, week, month, year at a time. Hope all is great with you and your family!Delete
We love you and are thinking about you! Stay strong, love Dorothy Williams and Jan and John RevilakReplyDelete
Aww Dorothy, Jan and John! Thank you so much for checking in and reading my ramblings! I owe you all a call. When I'm not.... you know where... I'll call. Hoping all is great with all of you. Love you all so much! xoxoDelete
Love your funny pictures...roller coaster, seal on potty, lab results and chocolate bunnies! Don't know where you find them but totally represent and make me laugh! That Stacy Westfall video is unbelievable! Is she doing all of that with her legs and torso? How on earth? And your beach pictures are gorgeous...think I would always take the long way home!ReplyDelete
Sorry none of your decisions are easy ones. Goodness we need a cure for this wretched MM. I'm certain you make a different in more than a "few" students' lives, and you need to enjoy that corner office. I say stay positive and counsel as much as you can!
Love hearing from you...can always expect a few chuckles! Praying you can find the right mix of meds to beat the beast back.
*difference not *different (sorry...need to check more carefully before publishing)ReplyDelete
Thanks so much Linda for appreciating my twisted humor and silly pictures. I must admit I giggle quite a bit when I find these funny, but so appropriate pictures! Yes, all the side effects are so challenging, but the good days are pretty good. Hoping all is great with your beautiful family!! xoxoDelete
It is normal to lose a few dozen hairs a day, this is part of the hair renewal process. However most people suffer from excessive hair loss at one time in their life. My cousin is using the best hair product, in case you need any help let me know.ReplyDelete