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Saturday, March 9, 2019

I Miss My Life Before Illness- Too Honest Contemplations...

3.9.19

Hello March...

Thank you to all of you that messaged me about February not having 2.29.19 and "cheating" us out of my "on the 9's" post :)) I debated posting on the 28th or the 1st, but I really didn't have any new myeloma news or inspiring stories to share, and I wound up sick with a lousy sore throat, head, chest cold, that I am still battling, and I just haven't felt very good... or inspired :(( 

Yes, I'm too aware that my updates now have a similar melancholy theme, and I wrestle with this blog becoming a whiny, "poor me syndrome" rant. But it is what it is, and my life on so many levels really is "a poor me syndrome" story now. My life has become almost completely centered around illness. Centered around the daily tasks to just "get by", to attempt to feel somewhat ok, and to manage medical side effect nonsense that goes on in my life, as a patient and caregiver. Take this pill, do these chores, micromanage this and that, take this medication, visit the bathroom, do theses chores, clean here, clean there, try to eat something interesting, contain emotions, take this pill, do these chores, process life, visit the bathroom, clean this, clean that, take more medication, control emotions, etc etc etc. Caring for me, and being a caregiver for my Alzheimer husband is honestly taking a huge tole on this once, positive, optimistic, happy go lucky, playful, passionate about life, gal. 

In all of this, I work hard to not fall down the negativity rabbit hole. I am always self counseling, always reminding myself of the wonderful things still in my, our life. Reminding myself of all the good things, and blessings abound in our life. Reminding myself of all the wonderful life experiences, events, careers, family, animals, health care, etc, we had, have, that so many do not. But dang it, when illness steals your life, and your entire life is centered around trying to feel and be ok, with the never ending physical and emotional demands of that... it's hard not to be sad, weepy, why me, how come, with terminal illnesses, that honestly Will Not Get Better. Our individual situations may stabilize here and there, but Unlike so many other illnesses, where one can look forward to being well eventually, Myeloma and Alzheimer's are just not in that category. Myeloma is insidious, ferocious, incurable, and must be treated continually, forever and ever. Non Stop Chemo to keep myeloma suppressed, and me alive. Alzheimer's just gets worse every day.  Every Day. Stealing one's mind, body, life. There's no going back on either one of them. There's no getting better, just trying to have better days.

I am not bitter or resentful of others. Jealous and envious, yes, of their freedom. I am happy for everyone's good health, or recovery from their illnesses. I cheer on those that can truly enjoy the life they've worked hard for. But I am so sad for our predicament. So sad for our stolen lives. So sad for what could have been. We're 2 people that worked very hard in life, to have a good life. 


I wrote these random thoughts to myself in a text message, late one night:

Illness has stolen my life, my spirit, my freedom, my spontaneity 
There was so much I wanted to do and accomplish 
So much I had looked forward to at this point in my life
So many friendships I wanted to nurture and grow 
So many events I wanted to participate in 
After working hard all my life, I just wanted to play my second half of life
I wanted to continue to learn, give, create, inspire and be inspired
But illness steals your spirit, your energy, your motivation, your ability to do much at all 
Illness has stolen my ability to accomplish, do, engage, go, be me
Illness is like a stealth snake, creeping in, attacking, retreating, attacking again, retreating again, curling up in a corner, waiting, always ready to attack 

I'm not depressed, I'm sad
I'm also angry. I never was an angry person. I have anger now. 
I'm depleted, exhausted, physically and mentally
I wake every morning, having planned during my sleepless hours, all the things I want to accomplish 
But illness has stolen my energy, my ability to accomplish all my ideas
Illness has almost stolen my spark
I know who I used to be, I know what I am capable of, and that frustrates me even more

What really is my purpose now
Am I just living to die, just existing, just getting by each day, to get to the next... For what?
I remind myself about all those that depend on me, love me, need me
I live for everyone else, caring for everyone else, resenting my body for how it has betrayed me, and how yucky it feels most all of the time

Illness surrounds me 24 7, and has stolen my life
Stolen my dreams, my ability to accomplish my goals
I had so many
So many dreams, things I wanted want to do, accomplish
My life was cut short, completely changed at 50, 9 years ago

Yes so many people reinvent themselves after illness, tragedy, disaster, etc
But I didn't want to reinvent myself
I worked hard all my life to create who I was, and by diagnosis time, I liked who I was, I liked the path I was on, I liked where I was headed, and what my future held for me 
I had so many "mid life" dreams and goals, so much I wanted to accomplish between 50-100

But illness won't "allow" me to be me anymore
Illness stole me
Illness changed me
Illness deflated and depleted me
I didn't want to change, I didn't need to change
I've done so much positive growth awareness all my life
I just wanted to become more of who I was
Continue to give to others
Engage in life
Participate in life's joys and beauty
I miss being spontaneous

So many are confronted with life crises and want to change
So many have wounds to heal, new goals to achieve
I didn't want to change, I just wanted to become more of who I was
I wanted to complete me, do more of what I was already doing
Continue to help others complete themselves
Help other help themselves
Save creatures
Now I can barely help and save myself 

My life was stolen from me 
My lurking stealth snake, sneaks in for the bite, takes the bite, injuring me, but not killing me, but injuring me more each day
I'm still alive, my body is still alive 
My mind is too alive
My body and soul slowly dying

I sound so ungrateful for all that I have
I am not
I am mourning who I was
Who I could have been
What I could have accomplished
Who I could have become, the 2nd half of my life
I mourn my stolen energy 
My enthusiasm 
My spark
My get up and go
My ability to inspire and be inspired
I mourn stolen options and opportunities 

I miss intellectual connections with friends, students, colleagues. My life was all about connecting with others, analyzing deeply with others, sharing insights, becoming more of who we are. But Myeloma and Alzheimer's has stolen my life, my energy, my spirit, my daily functionality. 

I can only try to stay one step, one pill, one infusion, one treatment ahead of cancer eating me up alive. Similarly, Jim's disease is stealing his life every day, as he's really just "existing"... it's so tragic. We are both living to die, our bodies and our diagnoses own us, and I don't pretend otherwise. When, not if, this current treatment fails me... then what... I'll find another one, then another one, then....

Yes, within it all we have moments of sunshine, moments of laughter and love with family and friends. Moments that remind us of the joys of life. But sometimes, the reminder of what was, and what could be, is too painful. There's a vacancy about my life now. So many abandoned rabbit holes, just waiting for me to slip and fall into..

I had a beautiful life, and for that I am forever grateful
I have a beautiful life, but it tortures me with what could have been.
I still have love, loved ones, comfort and occasional humor in my life, and for that I am forever grateful. But I silence myself, my dreams, my plans...



Loyal readers-
I debated whether to post my inner most feelings like this. 
Is my honesty and candor too much?
Perhaps I should limit my posts now to just my myeloma status and lab results? 
Thank you to those that have read this far, and continue to read and follow along with my life challenges... 
I hope your life is "working" better for you, than mine is for me... and I hope you are feeling well, and those you love are are well too.




6 comments:

  1. Julie, you should post what ever is good for you. It was a very honest post, which I find refreshing in a strange sort of way even though it describes a very difficult place in your life. You put into words the reality of it. Prayers. Hugs. Love ya, Jc

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    1. Thank you Jan. You are a Bright Light in my life. Thank you for finding me, thank you for all our conversations. I deeply appreciate all our connections... who knew... horse lovers with myeloma :)) Hey maybe that should be a new group! Thank you, for you xoxo

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  2. Your journey is yours and you should post whatever and however you feel! Your feelings are your too. You inspire me, and others, to live our best life to the fullest. Love you Julie. TZ

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    Replies
    1. Aw, thank you TZ for being such a loyal reader and continuing to follow my crazy journey :)) Thank you for your kind words of support! I just never know who's reading and who I "inspire" with my words, and pleadings to "live life to your fullest, everyday" :)) So thank you for your sweeeeeet and encouraging comment!! xoxo

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  3. Hi Julie, Please keep on posting your honest, funny, whiny, encouraging posts. It is amazing that you can still live as much as you do in the midst of all that has been taken from you. Yes, the sorrow is there over what might have been and has been stolen, but also the appreciation that you have even more for the moments in life that bring you joy and love. My prayers are with you daily. CB

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  4. It is what it is and you should tell it like it is. I appreciate the lack of shullbit :-)

    ReplyDelete

My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

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!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
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?

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?”)

Infections

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.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.