Hello October 7, 2017
I must say this week, for so many many people has been the extremity of extreme sadness, shock, anger, dismay and infinite “why’s”. My heart is heavy for so many reasons, and for so many people near, dear, and close to me and my family, and those I only know from what I have seen, read and heard. The hate and evil that lives and dies in the monsters that slaughter others, is completely incomprehensible to me. My heart aches for all the innocent lives lost in Las Vegas, and for their families, and for those in attendance, and all those impacted by this heinous act by a sick sick madman… But yet, we all must move forward, in an attempt to heal..
No matter the situation, event or diagnosis, many experience “survivor’s guilt”. Sadly many touched by the Las Vegas event will be haunted for years, perhaps their entire life…
As I come closer to my 8 year Myeloma diagnosis anniversary, I can’t help but think, why have I been able to survive Myeloma this long, while others are diagnosed and soon don’t make it.
Or others do treatments similar to me, then don’t make it. Then others don’t survive the Stem Cell Transplant process. Or others that do, then either never achieve remission, or treat for a while afterward the SCT, then don’t make it. Or others that suffer grueling side effects, multiple combinations of treatments, then don’t make it. Or others that survive quite a few grueling years, then their life is stolen from them. More and more I am incredulous I am nearing my 8 year anniversary.
I know I have been through a lot. I know I have experienced life changing side effects from myeloma and the variety of myeloma treatments I have been on in 7 years, 10 months. I know I am a “mini-miracle” on many levels. I am in awe of myself and my medical caregivers. I cannot thank them enough. I cannot express my gratitude to all those in my medical, pharmaceutical, research, care providing circles. I am just a bit awestruck when I really comprehend my journey!
And sometimes, I have a bit of “survivor’s guilt” myself.
Why I have made this far? Why have I “almost not made it” several times, then I did? I am “high risk IgA Lambda Myeloma. My numbers have been over 10 times the high end of normal. I have experienced several treatments becoming “refractory”. I have experienced a severe life threatening infection during my SCT. I have experienced each treatment I’ve been on work like magic, then in less then a year, stop working. I have been ecstatic and terrified. I have been shocked at my status in so many ways, so many times.
And here I am, at 7 years, 10 months, happy to report, that I am again, and still doing well. Darzalex, Pomalyst and Dex steroids are continuing to pummel those life stealing myeloma cells. According to my recent labs this week, my body is remaining strong and battle-worthy. My critical organs are remaining strong. My CBCs almost “normal”. My immune system is rallying, close to Neutropenic, but not! I just completed my 21 days of Pomalyst, and my ANC and WBC is quite low, but not Neutropenic low as in past months. This cycle I will not need Neupogen Zarxio shots!
Today I begin my 7 day Pomalyst break, while continuing on my Darzalex break, as I am now on the monthly infusions. And I’m doing ok. Actually more than ok! How am I so “lucky”? So many times I really thought I wasn’t going to “make it”, then we find another medication, chemo combo, immunotherapy elixir, and here I am! Yes, sometimes I do have a bit of survivors guilt. Most of the time, I am just in awe…
I had my monthly oncology appointment on Friday, and as always the office and chemo lab was so busy, so my sweet RN forgot to release all my myeloma marker labs. I will contact her on Monday, and will post my IgA, as it’s holding steady in the 500’s (normal range = 70-400). I think it even went down a few points from 520 last month to 502 now! Still high, abnormal, but hey, not in the 4100’s like it was before beginning my magical triplet of Darz, Pom, Dex late February of this year. I was so worried doing a “triplet”, but I swallowed my fear and accepted that my type of myeloma has to be hit hard, and with multiple “agents”. Yes, I’m a slow learner, and fearful of new unknown side effects.
Yes, everyday presents small and large challenges for everyone
Everyday presents a new mountain to process and attempt to climb
Everyday I seek “no drama”, serenity, peace, beauty, laughter, love and fun
But everyday seems to greet me challenges, albeit little ones, but challenges none the less…
This week, we had to make a very difficult and sad decision…
Each day is a gift…
Live, love, each day. Be kind, forgive, understand…
For 3 and a half years we diapered our disabled, now 20 year old cat Binkx.
Yes it was challenging, yes it was stinky, yes there were days I didn’t
think I could do it another day in my “immune compromised condition”, but we persevered.
We took care of Binkx because his body failed him, yet his mind and
spirit was so strong.
purred when we cleaned him. He pawed at us if we cleaned him too
“roughly”. He meowed when he needed “to go”. For over 3 years he slid
himself around to eat, drink and do what he could. But this past month
he lost weight. His old man bones, became sharper. We felt so bad for
We continually asked, “are we extending life, or prolonging death”… “What does “quality of life really mean”… Questions I ask myself all the time… for my future…
Binkx showed us signs this week that he was tired, sore, his body was
tired, his butt sore. I was layering 3 diapers on him for cushioning.
But he still always purred. Always…
He lived 20+ years and
was a daily reminder to me of strength, love, stamina, taking one day at
a time, and how life is so fragile, yet so amazing, no matter our
“suffering”… reminding us how each day can be beautiful, no matter the
challenges. He reminded me of my struggles and his struggle gave me strength to always move forward and be grateful for those that care for me, and to those that have helped me survive 7 years, 10 months. He gave me strength by example. He never seemed to give up. He adapted to his uncooperative body. If he could talk, I always wondered what he would tell me, what decision he would have made 3 years ago forward…
Forever in our hearts
live well, and make a difference somewhere, somehow, with someone or something
as often as you can