A sincere thank you for caring about my status and continuing to return here for my monthly postings and musings! (I actually wrote this weeks ago, but never posted it)
I know it's been a bit longer than usual since I've entertained you here-
I've been busy recovering from recovery and I'm actually trying to figure out where my head is regarding my current news.
Hence the feeling that "normal" now feels "abnormal"...
It is with cautious celebration I announce to you that I have been officially taken off ALL Myeloma treatment medications! (for now that is) ----> Let me detail that, just so I can absorb the full impact of what I write:
As of my last oncology appointment, I am no longer on ANY chemotherapy or any other cancer related medications, treatments, pills, IVs, prep for hospital stays, maintenance medication therapies, etc
I am not drinking, swallowing, chewing, ingesting via mouth or veins, ANY cancer fighting medications at the moment of this blog writing!
Seriously though, the words ANY and ALL are kind of scary!!!
Good news: yes! Scary: yes! Concerning: yes!
No cancer fighting meds = the possibility that Myeloma can come back at any moment!
I live with the thought that those monster Myeloma cells are perched waiting with evil, far reaching tentacles, looking for a weakened cellular moment to sneak back in!
Throughout all my treatments since Dec 30, 2009, I was secure in knowing I was well taken care of by my expert medical staff. I felt very confident with their expertise and recommendations for my treatments. At diagnosis, I felt as if I was suddenly tossed onto a giant roller-coaster, where you're told to jump in fast, buckle up, and whoosh- you're swept away on this lightening fast, intense journey, with no options to get off.
You just do it fast... to save your life... fast!
As scary as all the meds and their crazy side effects were, I actually felt powerful, "transformer", super-hero like, knowing I had research-medical science on my team and chemotherapy coursing through my blood, gobbling up my Myeloma cells since January 2010!
Weird as it sounds, twisted as it may seem, it's actually unnerving not being on ANY cancer medication or any chemotherapy. I am relying completely on ME to keep cancer away...
Scary, because a few years ago my body chemistry sabotaged and betrayed me, and "gave" me cancer, and now I'm relying solely on me again to stay healthy and cancer free.
Sadly body ... I don't trust you anymore!
I don't feel free or released from chemo, I feel kinda scared without it...
So how did my chemo-freedom come about?
In prep for our Summer 2012 "bucket list" Hawaii trip, my oncologist and I agreed I should try to boost my weakened immune system and take a break from Myeloma fighting Revlimid chemo maintenance, a month prior to the trip. The plan was to go back on when I returned.
Well, guess that wasn't so successful, as I wound up really sick in Hawaii.... (see my previous blog for details) and to add insult to injury, I grew a crazy "Spindle Cell" related mucosa tumor in my mouth... fortunately benign!
Obviously my immune system was W E A K!!! and Hawaii spells "do-over" now!
So here's my current status:
~ I continue to remain off Revlimid chemo in an attempt to build my immune system up and see how I do without any cancer treatments- take that Myeloma- I'm gonna battle you back all by myself!!!
~ Currently, my blood levels hover just below normal, but won't take that giant step to normalcy- close, but not normal
~ So I continue to remain "immune compromised", BUT- still in Remission
What does all this mean?
I've graduated from monthly oncology checks to 6 week checks
And I have escaped a fifth Bone Marrow Biopsy status check!!! ssshhhh I think my oncology team has forgotten!!!
But lest I forget my true reality... no matter what my current numbers say, no matter how I feel, I know a Multiple Myeloma cancer diagnosis is terminal... there is no current cure... and honestly, my daily reality is knowing Myeloma cells can invade again, any day... and that's why it's kinda scary not being on any cancer fighting meds!
I appreciate every day
I pretend nothing
I know my reality
I am always grateful for my fast diagnosis, spot-on treatments, and my amazing medical team
I am still in Remission, 2 years post stem cell transplant
But I am acutely aware what Remission means, vs cure
I pretend nothing
I live everyday, grateful for another day
Here I am celebrating life
with the Sleek and Famous
And a shout-out to Phil Brabbs! Note my burgundy DOMINATE bracelet. Phil and I have been supporting each other throughout our Myeloma treatment journeys via our blogs. Phil's personal story is truly remarkable and a must read!
Click here to read all about his Cancer Kicker foundation!
Thank you loyal blog follwers for caring and reading, and look for another post in October... I have a funny idea!
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!
Thank you for your inspiring words. When I finished my velcade maintenance after having a stem cell transplant, I was completely at sea with worry. Your words express just how I felt:
"Scary, because a few years ago my body chemistry sabotaged and betrayed me, and "gave" me cancer, and now I'm relying solely on me again to stay healthy and cancer free.
Sadly body ... I don't trust you anymore!
I don't feel free or released from chemo, I feel kinda scared without it..."
I could never have said it so eloquently. Thank you for sharing your insight.
Wishing you a long, long, long remission.
Thanks for updating all of us with your blog.Handling the new
normal would be hard but with your ability to live each day
to the fullest you will certainly overcome the challenge.
I am glad you are with your horses and especially that Scott is doing so well.
I apologize for posting this on your blog, I just didn’t know how else to contact you! My name is Linda and I’m the production assistant for an online health community called (www.wegohealth.com ). I came across your blog while doing some research into the online Blood Cancer community. I was so impressed with the great resource you have created for the greater Blood Cancer community.
Just wanted to drop you a quick note because we recently launched a new video platform called WEGOHealth.tv and are in the process of building a Blood Cancer Channel featuring the advice, information and wisdom of Health Activists like yourself. I think you would be an excellent addition to the channel and I would love to chat with you about possibly creating a video with us!
Please check out our site; http://tv.wegohealth.com/ and get back to me at your convenience if you have any interest.
I know this note is a little out of the blue and I understand if it’s not something you would be interested in, but I didn’t want you to miss out on the opportunity.