Thursday, January 30, 2020
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.
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...
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/
Monday, January 20, 2020
Today was the usual Monday Medication Madness of 40mg Dex Steroids first thing in the morning.
Then one Velcade shot in the belly jelly in the aftternoon.
Then 400mg of Cyclophosphamide chemo pills with dinner.
How's that for a Myeloma pummeling triplet cocktail, that so far has done the trick since about September 2018!! Hoping to stay on this madness for a long time, as I've got the routine down, and I can somewhat predict the weekly crash and side effects.
I have a Dr consult in person this coming Thursday, and should have all my Myeloma status labs by then. I always silently "bet" with myself if my numbers will be around the same, or down, or up...
Not sure what I'm feeling, guessing from yesterday's labs... hmmm.... what's your guess?
I only cheated with doing half the Dex steroids back in Dec, but have been a good patient ever since. Back to "high dose" 40mg Dex weekly, so maybe my myeloma numbers are status quo, or down? I have figured out that when my WBCs are low, I get a bigger reaction from Dex, then when my WBC is higher. And I was shocked at my CBC results from yesterday!
My WBC is a shocking "high" of 3.7 (which often means I am sick, or getting sick), RBC low tho, but all my organ status labs, creatinine, calcium, etc, are in the low to normal range. How can that be?? How can this ol bod tolerate 10 years worth of continual chemo, meds, immunotherapy, etc. How long have you been in treatment, and continually on treatment?
You know those cancer articles, TV pharma commercials, poignant news features of one's loved ones being on chemo for 6, 9, etc weeks, or months, and the families are devastated with what happened, then fortunately able to celebrate treatment success... Well I do a mental gulp (sometimes a pissed snicker if I'm on my steroid crash), at the "short" treatment time mentioned,... as what I and my Myeloma buddies would do for a short treatment outcome, not to mention, being "done" with chemo!... My heart truly hurts for anyone's diagnosis, but TRY DOING 10 YEARS WORTH OF TREATMENT, not 10 months!! Try knowing your treatment is forever and endless, to "the end"... Honestly, lucky them for being able to "ring the bell" of being DONE with chemo treatment in a "short" amount of time. Ring the bell, ha, not this gal, thanks to Myeloma's incurable status. Not bitter, just facts, just reality. Sorry I keep perseverating on this, but I'm just still so surprised and shocked with my situation. This just can't be! How can I have cancer? How can I have incurable Myeloma? How can have been on weekly chemo treatments SINCE 2010!!??
Some of my Myeloma status labs will trickle in before my Thursday appointment, but some are not released until I see my Dr. But I will update this post as the lab results come in, so check back if you're curious my MM status.
All else is continued loony bin ridiculousness here... again, just can't wrap my head around how our lives became all about sickness, illness, side effects and dysfunction. Just mind bending. If you know us personally, you get this shock. But as I always say, I have so much to be grateful for, especially considering the BIG PICTURE out there, and what I read on all the myeloma social media posts. Wow, the suffering and challenges are just unreal :((
Here's to hoping your're able to work on your 2020 dreams and goals.
My top goal for 2020 is "Less is More" regarding slowly sorting thru all our 38 years of stuff... I have so few "good days" where I have the helium to do this, but thinning things out, and storing away the sentimental mementos is my top priority. It used to be that if my inner self was at peace, calm, organized and joyful, all was ok. Now, forget that LOL, it's all about the external visual. Lessening perceived visual chaos, which in turn lessens my inner chaos, and brings a sense of calm and peace to my life. Our awesome caregiver Chris moved my (finally packed up!) bins and bins and bins of Halloween and Christmas decorations out to our "storage trailer" in the back. Sadly this now "storage trailer" used to be Jim's off road toy trailer. Shows how much our life has changed, and the sad symbolism of a fun vacation trailer, becoming a storage shed :(((( Jim would be so sad if he could comprehend all this, but sadly, his Alz self just can't process our reality. He does know when I'm gone to chemo, and wanders around the house and property (with his caregiver) looking for me :(( He still tries to do horse chores, as that's the old routine embedded in his psyche. Just such a tragedy on every level for him, as he was so healthy, and so active, and should have had old age fun as an old ranch guy, just moving around slowly, but functional, picking up the horse poop, planting roses, raking the dirt, cleaning the barn, shopping for us, etc,... He loved nothing more than "doing", being busy, doing. He's just "existing" now...
We never know what's coming down the line for us. And I certainly did not anticipate the big ol train wreck we are...
This is what I had hoped for...
May your dreams continue to come true, and your life goals always be in process...
Friday, January 10, 2020
Happy New Year!
Happy 10th year of Survival to me :))
Hello to 2020 and Blog Posts on the 10's!
Of course I had so many ideas for what I wanted to write this first post of 2020, the first post on the 10s, of my 10th year of Myeloma survival...
All those ideas are still simmering, and stewing and brewing...
Just don't want to start off 2020 with Negativity, Sadness, Frustration, Disappointments, and being Melancholy... So this post will be all about many the things I am Grateful for, within all the overwhelming unexpected life changes I have had to confront, accept and adjust to...
Yes, I have so much to be Grateful for!
Where do I begin...
I'm grateful for modern bathrooms, specifically MY bathroom
I'm grateful for toilet paper and wipes
I'm grateful my body can process in, and out, all the complex, chemical treatments I currently endure and have endured for over 10 years to survive the 10 years I have! ...
And with that... I'll be back! Because you know why...
So grateful for all the people that create, make, process, sell, deliver all the products and services we need to stay alive and maintain the life we have
I'm grateful for all our animals that give us so much love and laughs
I'm grateful I am able to still care for all of them
I am grateful for my old horses getting older with me
I am grateful for all the lives we've saved
I am grateful for TV, as I never watched so much TV in all my life, since being a sickie
I am grateful for books, magazines, and anything I can read, and the authors that write as they do
I am so grateful for the 35 amazing years I had as a college counselor
Thank you for reading and caring as you do! Hope all is well with your 2020!
Wednesday, January 1, 2020
Helpful Myeloma Links
- American Cancer Society- Multiple Myeloma
- American Society of Hematology
- Ask Dr Durie
- Cancer Therapy Advisor - MM
- Chemo Care- Drug definitions
- Dexamethasone Steroids
- Health Monitor Magazine
- International Myeloma Foundation
- LLS- Myeloma
- MM resources
- Multiple Myeloma Research Foundation
- Myeloma Beacon
- Myeloma Blogs
- Myeloma Central
- Myeloma Crowd
- Myeloma Symptoms
- Patient Power
- Support Groups
- Understanding Multiple Myeloma
My Story... How my MM was diagnosed
My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
My initial chemo regimen:
Pill form Chemo= Revlimid (10mg, 15mg capsules)
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells
July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!
And you can read my whole story from that point forward in this blog!
What is multiple myeloma?
Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?
Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.
The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.
When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.
When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.
Multiple myeloma is characterized by several features, including:
Low blood counts
In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.
Bone and calcium problems
Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)
Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.
The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.