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Thursday, January 30, 2020

Sick of being Sick


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.

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!


  1. I am so sorry Julie. You have no reason to apologize. You're not alone in feeling like life has changed way too much. I appreciate your honesty. I'm in your corner and I'm here for you.

    1. Thank you so much for all your support, friendship and understanding Matt. As a Myeloma buddy, I KNOW you GET it!!
      Thanks for always reading and commenting :))

  2. I have been away from the blogs for a long time, mine, as well as everyone else's. I'm so sorry to read this update. It is SO true that we cannot truly "get" anything we have not experienced ourselves, no matter how empathetic we may be. It's also true that we don't have to look far to find someone dealing with worse, but, that doesn't lessen the trials we are dealing with. Wishing you strength and comfort as you deal with all that's on your plate.

    1. Hi Tim's Wife, thanks for checking in and offering your understanding and support. I know you understand and get it too, with all you go with with your husband's myeloma journey and family issues. We've followed each other's blog for many years now, and I will check yours for your current update. Hope all is good and thank you for commenting and understanding as you do :))

  3. You're tired. Its okay to rest and just let go. That's when Source does it's best work; when we get out of the way.

    This is what I believe: You are an amazing soul, with strength that went above and beyond. We are all ancient souls, from before time, and this life is just an experience. One of an unknowable number of them. We all go on forever, always seeking our way home; back to Source. We keep our relationships throughout. We've enjoyed the Universes and all of creation with one another and will always do so, advancing in love, wisdom and understanding as we go, all on different itineraries.

    Don't know if this helps or hurts (I hope not the latter), but I was led to write something for the last three days and this seems right. You're amazing ... really! Love, Jim

    1. Thank you Jim for your kindness and words of encouragement and support. Yes, this journey is like none other, and we will only "Know" when we "know". But until then, I am sorry for all the disappointments in this latter life of mine. Hope you have peace, health and understanding of your journey, that gives you hope and positivity. Are you a myeloma, or other cancer or illness patient. Please let me know more about you.
      Thank you for following my rants and commenting so sincerely. :))

  4. Julie,Sorry you are having a tough time right now.You
    are one of the most positive encouraging people I have ever met.Probably a tough day today with the wind but
    brighter days are coming and I will continue to enjoy hearing about them!

    1. Thank you for always checking in Ron, encouraging me, and keeping up with my status. Yes, life is tough and challenging, and not at all what I ever expected and anticipated. As they say, "expect the unexpected"... well I sure didn't. Hoping you and your family are well, traveling, golfing and living life as one should :))

  5. Hi Julie
    You have the stories you have. I appreciate hearing what's really going on, sounds like a lot right now. My heart goes out to you and your family. Bernadette

    1. Thank you Bernadette for being such a loyal, understanding blog friend :))
      Yes, our stories are "ours", but you and I can relate and connect on so many levels since myeloma is such a big creature in our lives. Please let me know how you are, and how you are doing with your treatment, or hopefully, you have a break! xoxo


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, 15mg capsules)
Pill form Dexamethasone Steroids (40 mg, 4 days on, 4 days off!
Omeprazole for steroid acid reflux
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
.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?”)


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.