Sick of being Sick

1.30.20

Hello end of January 2020! I'm not sorry to see you go.
January and December have been yucky months for me, full of several illnesses, never ending side effects, Alzheimers challenges, sickness, illness, pain, sadness, and lousy on going realities.

Just not the same girl writing this blog, as who began writing years ago. Used to be so optimistic, so positive, so full of hope and fun fake steroid energy. Not so much anymore. Illness, sickness and lack of sleep is just wearing me down, and stealing "me".

Who I was, is certainly not who I am now. I honestly never realized how illness, being sick all the time, being around ill people all the time could change someone so much, so profoundly. I confess, all my optimism, positivity, "you can do anything" philosophy I encouraged with all my students and anyone that sought my counsel, advice, opinion, etc, was really NAIVE. I know I felt life deeply, and understood life and people's challenges deeply, and worked hard to build others up, no matter what... But oh how the saying rings too true, "you don't REALLY know, nor can you REALLY understand another person's circumstances until you have walked in their shoes". Yes I had overflowing empathy, sympathy, understanding for everyone's life circumstances and issues, but I realize how much I really did not know the life draining impact of illness, sickness and being continually sick.

We can try to understand other's situations, circumstances, life challenges and deep feelings, but we can't really understand another's situation, unless yours is the same or similar. Yes, we can generalize and "apply" our understanding of pain, hurt, sadness, depression, desperation, hopelessness, etc, from one to another, and one issue to another. We can care deeply, help and build others up, give encouragement and support, but one's own subjective pain, desperation, hopelessness, and sadness, is undeniably topic and issue specific. I always "knew" this, but KNOW it so much deeper now. My cancer challenges, my emotional pain, my sadness, my disappointments, my frustrations, my life devastations are just so awful to me, no matter how "ok" it looks on the outside. It's just so sad with what has become of me and Jim. The tragedy is incomprehensible...

In my other life... I always felt my student's issues deeply. I understood their emotions and challenges from a loving, caring, build you up, get you to your dreams perspective. But what we comprehend and understand is what we have survived, endured and coped with. It is so very specific and subjective to our individual circumstances. I suffered with the "trauma" of being a stutterer all my life, and applied my pain, insecurities, self doubts, and life lessons to everything I did. I was a better person and counselor as a result of my depth, awareness and sensitivities brought on by my personal suffering and challenges.

We all know the issues humanity is confronted with is overwhelming, tragedy is everywhere, every day. I believe no matter who you are, where you are, it's our SIMILARITIES that connect us. There's a bond, a sisterhood, brotherhood, we have, when we share the similarity of a particular pain, survival and overcoming. I can never forget the awful life experiences my students and friends shared with me. What they have endured and survived is mind boggling. My heart and head would explode with empathy and understanding when they would share. I could feel their feelings along with them. I truly could, but still, for all of us, that understanding is still limited to our own subjective experiences, beyond any empathy, sympathy we can offer.

In my little world of my awful challenges, having INCURABLE CANCER, Being on NEVER ENDING CHEMO, ALONG WITH a daily deteriorating ALZHEIMER'S HUSBAND, is a life circumstance that is just so intense, not many can really relate to. Our lives are like a living death every day. I've lost my life to everything illness. So much has been ripped away from me. We lost our dreams and life as we knew it. We've lost what we worked all our lives for. I lost a husband who was everything to everyone. We live, rather, exist, each day knowing we can't change the outcome. We cannot control or change the outcome of our situation. We just have to keep living this nightmare over and over and over again, every single day. Process that.

I know those in my circles care deeply, lovingly empathize, and try hard to understand what I am going through. But the depth of my challenges are so intense, and issue specific, no one can really know what I am confronted with, except my Myeloma buddies and Alz buddies. Is here anyone else out there who is living both? Yes, there are far more awful situations than mine, and other's far more challenged in ways I could never handle, but I'm at my breaking point daily, with all that's on my plate. I'm just so beat up from just surviving day to day. So beat up from being sick all the time. So beat up from lack of sleep. Everyone thinks I am so strong. I am not. I don't want to be strong. I don't want challenges. I just want to be who I was, who we were, and live a simple uncomplicated life. Life is too complicated for me now.

Each day, week, month, year, our circumstance hits me harder than ever because we were such an incredibly functional team. No problem seemed unsolvable years ago. We were doers, fixers, problem solvers. I could "fix" things at home and work. We both "fixed" whatever was broken, literally and figuratively. I shared my optimism and move forward philosophy everywhere. I truly believed anything could be solved or "fixed", or at least repaired...

But now...
Our situations cannot be fixed.
Myeloma is incurable, deadly
Alzheimers is incurable, deadly
Myeloma is treatable, but treated continually, non stop, or I die
Alzheimers is not treatable. It's a slow journey to death, no options.

I don't have the choices and options I once had, and that was always the core of my being. CHOICES AND OPTIONS. I don't have those anymore. Cancer, treatment and side effects have stolen my choices and options. I'm a prisoner to illness, feeling ill, being ill, feeling sick and being sick most all the time. The only relief I have is on Steroid Day. And then The Crash... the awful being sick, guaranteed feeling sick for days.... I'm just so sick of being sick :((

Yes, I'm feeling down today. Yes my dark cloud will lessen, but it's been a tough December and January with so much headcold, fever headcold, coughing, hurting illness, along with all of Jim's unsettling, tragic daily challenges, and now a bit of lousy news from my Dr appt on Tuesday:

My IGA continues to climb, around 100+ points per month. Jumped to 1000 this past blood test.
M Protein went down a spec, from .8 to .7
My Dr is concernered with the upward trend and started to talk about other chemo options, but I just can't make any changes right now, as I just can't handle any more challenges, new side effects, etc.

My recent Pet Scan revealed a new lytic lesion at the base of my skull. My Dr wants me to do a MRI for additional detail. I will do this, but don't want to do it with the contrast, as I've read the Gadolinium, or Gadavist is a concern for those with kidney issues, allergic reactions, etc. I recall reading something about Myeloma patients should avoid it due to myeloma specific issues, kidney issues, etc. https://www.itnonline.com/article/debate-over-gadolinium-mri-contrast-toxicity

My Creatinine levels are actually good, and I never did have kidney issues, but why start now! I just don't want to add one more thing to my "worry plate", or regret that I did that plate.

Anyway, blah blah blah...
I am so sorry my blog has turned so sad, and I don't have the funny, uplifting stories I used to share.

Cancer's effect on us- great read! https://itsinmyblood.blog/2020/01/16/i-couldnt-have-expected-leukemia-to-lead-to-both-heavy-self-criticism-and-new-friendships/