So every time I finish writing a blog, I think Ok, that sums it up, I sure won’t have much to say when it comes time for the next on the “6’s” date to post! Well, I’m wrong on that! So much seems to happen between my 6’s. Since my last post, I’ve found out the results to my January 4, 2016 Bone Marrow Biopsy (see below). I’ve had several occasions/invitations to share my myeloma story (one big event I’m keeping secret for now :) … And more and more, (sadly) I am FORCED to recognize and accept how my cancer treatments and medical status has completely changed my life, and how my situation is preventing me from “functioning” anywhere near how I used to. So I made a phone call..
Saddle up. Here we go with my updates.
February brings the start of a new college semester. “Normally” I would have been involved in so many college related events and activities my head would be spinning. But nope, not now. I haven’t set foot on campus since late October 2015. This is really huge for me and it’s so weird for me trying to accept this “not going into my office” any time soon, or (maybe) ever again concept. Ouch! That’s hard to write. Being a college counselor has been my whole life, beyond my kids and family life. The reality of my cancer side effects and weekly IV chemo treatments push me to accept my “forever” status. I see why those diagnosed with cancer eventually must opt for disability or retirement. I’ve fought this concept for 6 years. It’s such a challenging concept for me, but a concept I must now consider… Ouch.
So I made a phone call…
Life’s forks in everyone’s road fascinates me. Always has. The choices, decisions, outcomes and adventures are never ending for any of us. Ever. Often exciting and rewarding. Or sadly tragic and too challenging. I used to present this to my students and classes: “If we were all in group therapy together and asked to write down our “issues” on a piece of paper, fold it up, toss it into a basket, then swirl the basket around, then we’d all have the choice to pick a random “issue” out, or pick out our own… Which Would You Pick?!”
I pose this question to people regarding my cancer situation, as they just can’t wrap their mind around living with an incurable cancer diagnosis. So I ask them to reflect on their own life’s challenges, or those of others they know. Would they trade issues? Keep their own? Would I trade cancer for their life challenges? It’s all so relative and truly, it’s all in what we get used to and learn to adapt to. I’ve had a really hard time accepting my cancer diagnosis and status. I still think it will “magically” change.
Yes, I am always thinking about what has happened to me and why, and how come, and no fair, and shheesshh can I give “it” back. But if given the “choice, would I “trade” my circumstances for another’s tragedy? Would you? Could you handle mine, and me, yours? Crazy how we can “get used” to our tragedies and challenges, and “learn” to adapt, cope, accept and move forward. Strange how I am overwhelmed by other’s medical situations, but mine, yep it’s mine, so one foot in front of the other, every hour, every day, every month. Pushing forward always. Being the optimist I have always been, I forever seek the positive in the negative, always looking for the “silver lining”, for “the good” in “the bad”. So I can’t help but be humored at the many “good” things and interesting “adventures” that have come out my diagnosis and treatments… Case in point:
As you know from my previous posts, Kyprolis is currently my “elixir” and best friend, gobbling up myeloma and giving me renewed hope for additional longevity. Through a special family friend, I was introduced to PR staff at Amgen. They kindly were interested in hearing my myeloma story and I was of course happy to share and give my endless thanks. My cancer journey IS fascinating. NOT because it’s MY story, but because of WHAT so “randomly” happened to an otherwise healthy body, and how all my excellent medical care and treatments SAVED A LIFE! As awful and deadly as myeloma is, cancer is mysterious and fascinating. Why it happens, how it happens, where it happens, to whom it happens. So what a wonderful opportunity it was to be invited to share how much I appreciate all the brilliant medical pharmaceutical researchers, scientists, developers, as well as the entire Amgen staff that helped create and produce the life saving “potion” that is currently saving my life, and battling myeloma back!
I only had a tiny window of opportunity in terms of WHEN I could “safely” get on the freeway for the drive out there, and it happened to be a beautiful day for a drive. I felt so fortunate to be able to do what I was doing on so many different levels! Here I am, 6 years into my myeloma diagnosis, having been through initial chemo treatments, a Stem Cell Transplant, remission with maintenance meds for a few years, and now, after becoming “refractory” to Revlimid, Kyprolis is successfully eating up myeloma, and extending my life! Seriously, how lucky am I! So of course I want to share my story far and wide, to help anyone that could benefit from hearing about my journey, and to thank those that have had a part in saving my life!
We look like college students here, right?! Girl Power!!! Well actually there were several men in the meeting, but they had to dash off quickly for another meeting and missed this great photo-op! THANK YOU TO EVERYONE that took interest in my story and cared as you did to hear what I had to say about how Amgen‘s Kyprolis is currently saving my life! I had a wonderful time seeing where my best friend Kyprolis was developed and briefly getting to know all of you, and share how YOUR careers are saving my life. Thank you for caring about my story!
So that brings me to my current stats. Yes, I know… feel free to tell me “you told me so” over and over. How I should have ditched Revlimid sooner and been braver sooner, and switched chemos sooner. Ok ok, I’ve learned my lesson well. I should have taken my escalating IgA and M Protein more seriously, sooner. But as I’ve said before, I’m not the bravest cowgirl on this trailride of life. For real, side effects are yucky and scary. Often the “known bad” is preferable to the “unknown” possible good, even when that’s not the smartest choice. And make no mistake, I still have very yucky side effects. Unpredictable, sudden, where’d that come from GI stuff, neuropathy, weird swelling, disabling fatigue, tingling, dizziness, headaches, breathlessness, disabling exhaustion, etc etc etc, all which keep me home-bound for most of the week.
My Kyprolis infusions are Mondays and Tuesdays, 3 weeks in a row. I then “crash” on Wednesdays and Thursdays. Begin to feel a little bit better on Fridays, little bit better Saturdays and ok on Sundays. Then It Starts All Over Again, to Infinity. So yes my numbers are better, and I am eternally grateful, but my quality of life hasn’t changed. I’m still the “limited cancer patient” I’ve been for over 6 years now. Not complaining. Just stating facts. Ok, here’s my numbers:
4 – 11 = normal range
RBC = 3.7 (low = weak, fatigued, dizzy, oxygen challenged)
4.20 – 5.40 = normal range
M-Protein = I’m “abnormal”, but not a quantifiable number
normal/remission = Zero
IgA = 432! Whoa!
70 – 400 = normal range
ANC = 1.7 (was a bit higher previous tests)
1.8 – 7.7 = normal range
130 – 400 = normal range
Hello Myeloma! Did you notice… Kyprolis is WINNING! :)
And for the finale… my most recent Bone Marrow Biopsy #6:
#6 of course for 2016 for cancer year #6– The Results Are: 2-10% cancerous plasma cells.
WhooHoo! Take that stupid myeloma! Get out of my cells, get out of my life, just die off and let me live. You’re probably wondering how I can be “happy” with those results? Results that show I am still quite cancerous? Remember, myeloma is incurable, and I will always have cancer. It’s the degree of, that matters here.
To give perspective, I was 60-70% cancer at diagnosis December 2009.
10% after initial 6 months of treatment.
0 after Stem Cell Transplant summer 2010.
15% September 2013 when I came out of Remission.
having a long awaited lunch date Tea Party.
But I’m such a softie when it comes to animals
so home he came with me :)
live well, and make a difference somewhere, somehow, with someone or something
as often as you can!