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Thursday, February 20, 2020

How Life Changes and Challenges Us Beyond the Beyond

2.20.20

Oh how life changes us....

Riding in our local parade, 1983

Currently, as I sit down to write, Jim is struggling to balance and walk back into the house.. he is forgetting how to move, how to walk, how to move his feet... I can see his mind trying to analyse things still... over analyse in a detrimental way... Chris and Jim attempted to go for a little walk outside, but Jim has been very disoriented today, well, this week, well, since last week and the week beyond.... his situation deteriorates and accelerates downhill daily, with a few moments of clarity and orientation. Alzheimers is just so cruel and evil... I hate illness and body sabotage... so incredibly unfair on so many levels...

To Be Continued, as Jim (with Chris) is struggling stand up right now...

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Yes, I was planning to write about so many things. I always have so many topics I want to share with you. I begin several posts before I post, but I rarely post the posts I begin or write in my head....
Here's a part of what I was going to write:
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On my way to my weekly blood tests this past Sunday, I was feeling so "alone". NOT lonely, just so alone in all my challenges and battles. I was thinking about the difference between being Alone and Lonely. I am not at all lonely. I have so many wonderful people in my life. Family, Friends, Caregivers, Neighbors, Acquaintances, Medical staff, even Social Media "friends", etc, surrounding me all the time. I could pick up the phone, and be with anyone, or a number wonderful people in second. I could go places, do things, have all kinds of adventures in a second, (if I only felt well enough!). I am Not Lonely at all and never will be. But the feeling of "aloneness" really hit me the other night. The feeling of being so Alone in all that I am dealing with, confronted with, slammed me in the face as I was driving. I was almost in tears. Tears of recognition. Tears of defeat. Tears of immeasurable sadness about what has happened in my life in the last 10 years, and of recent with Jim.

I pulled into Kaiser for my labs and "pulled myself together" psychologically. I am a master of disguises, always "faking it til I make it". I don't want to be "weepy" wherever I go. I have been, but don't want to be. It's just not me. I am not afraid of my emotions. Not afraid of people knowing me and my feelings. I just don't want to be sad. It's so sweet how I am always greeted personally by the kind, caring check in staff. They know me. I am their "regular Sunday labs gal". Been doing WEEKLY blood tests since Kyprolis, Darzalex, now Velcade! Wow, since Fall 2015! Just something as "small" as this identity recognition warms my heart and boosts my spirits. See Julie, you really are not Alone in this crazy, continuing cancer battle.

I'm also greeted with recognition and smiles by the Phlebotomy team that knows me too well. We chat about our mutual lives. Sometimes there are others in the lab, thankfully often not, as I try to time it when Sunday night Urgent Care is not busy. Our conversation often includes amazement of my ongoing chemo, treatment, incurable cancer situation. Everyone is always incredulous I am as "ok" as I am, look as "good" as I do, and am as "positive" and "upbeat" as I am. That's just me. I don't want to be sad. I don't want to be weepy. I don't want to be dragged down by all this illness awfulness. It's not who I am. My spirits are renewed. Just simple acts of recognition, familiarity, kindness and understanding renew me, and remind me of who I used to be.


I leave the Lab for the Pharmacy just steps away to pick up my Rx for weekly Cytoxan. My phone rings. It's my son Scott and his fiance Ashley, on the way home from a trip. Crazy timing, as they are Right There, on the freeway, almost passing where I am. Unbelievable timing... or is it. They are right there. I let them know where I am. We're all shocked at the "coincidence"... at how location-close we all are. Right there, at the Same time! They were thinking about stopping at In n Out. I hadn't eaten much yet, and was planning to go home eat. They're Right There. I'm Right There. The timing is incredible... We decide to meet up at In n Out. They're amazed I'll go lol. I tell them how sad I had been. How "alone" I had been feeling. The timing was crazy. Meant to Be. How could I not meet up! They're sad I was so sad. I reassured them it had nothing to do with them being gone. It was all about me. All about the overwhelming sadness of the medical insanity in MY life. They still felt bad. My kids always feel so bad and sad for what we are going through. The timing of this was truly amazing. We met, we ate, we laughed, my spirits again were renewed. Timing... wow...

I am alone in MY journey. I am alone within Myself, about myself. Has nothing to do with others. My life is full of amazing, wonderful, loving, caring people. I have so many, so much in my life. I am so lucky on so many levels! Can you believe this timing?!

That was Sunday.
Monday is Dex Steroid day. My day of  fake feeling good. Of not feeling sick or in bone pain. Of things sunshine and renewed spirits. I feel like me again...

The kids and I go out Monday night for my daughter's boyfriend's birthday. We laugh a lot. I'm their crazy, steroided, dexified, hilarious mom. We laugh! I'm feeling like me again. Free of pain. Not nauseated. Free of illness. Free of sadness. Free, for a day... Temporarily, this is me again.
The me before illness took over our lives.


I am not Alone. I am not Lonely. I am a Very Lucky Lady!



5 comments:

  1. hi Julie. Sorry about Jim. It is so unfair. Hugs coming your way. You and I are so aligned...I've been feeling very alone as well. As you say, not lonely. But alone. Chat soon. Matt

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    1. Thank you Matt. Hoping you are doing ok, and your heart is healing from your loss. Yes, it's amazing how this MM ride affects us all so similarly. So glad we found each other's blogs! :))

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  2. Dear Julie: I'm (almost) afraid to give you my thoughts on things, I'm not a family member, enduring friend, myeloma patient or physician. I'm just somebody who crossed your path once, many years ago, as a student and secret admirer.

    Your family is such a beautiful bunch, and your life has been idyllic in some ways, deplorable in others. You have experienced the best and worst of what all humans go through. Your inner strength has been tested—Jim's too—and you and he have gained strength, compassion, wisdom and understanding beyond most others. Amazing folks, all of you.

    In my own physical health struggles, and those of bi-polar/depression, I understand some of your "alone-ness", as I sometimes feel my soul has been stolen, and I will die completely alone, although surrounded by loved ones. In my case, the meds and hospital/clinic trips sometimes are overwhelming and I quit them, I just give up for months on end. Not a good choice, but I'd rather die than continue. However ... one thing keeps me going.

    The one thing is the knowledge that we traverse this world, and others, many, many times, and have since the beginning of time. We're not physical beings having a human experience, we are spiritual, energetic beings having a Universal Experience. We just (possess) these animal bodies as a a means to interact with the energy all around us. Earth is just one of many stops along our paths. We are here to experience and grow in wisdom and love for all beings.

    How is that supposed to make me feel any different, you might wonder? Chances are very good you knew Jim before this life, and he knew you. You've danced together throughout eternity, and will continue to do so, until we all, eventually, learn our way back to Source-the giver of life to all. The real US never dies or forgets, only in this plane of existence, and very briefly compared to where our souls have been and are going after this elementary school graduation. The SOUL, the sum total of our universal(ego filtered) experiences lives on.

    If I am being pampas or insensitive in any way, I apologize as it is not my intention to be that, nor to sound preachy and definitely not religious. My own two spiritual awakenings years ago set me on a diverse and comprehensive search for our true purpose, and I find it now to be so simple. Love, experiences and growth. Anything that encourages those things is usable material, especially if we didn't choose it.

    Simplistic as my words may sound, these thought have served me well over the decades, and millions around the world feel the same things. NOT a "New Age" con job or pie-in-the-sky fairy tales, but true philosophical and scientific data from eons of life on the late great planet Earth.
    Jim, the obnoxious one...

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  3. Thank you Jim for sharing as you do, and letting me know more detail of who you are. I enjoy reading your ideas and thoughts on this journey called life. I'm glad to know we have actually crossed paths before, and glad our meeting was positive for you.
    I'm sorry to read of your medical challenges, but it sounds like you are doing ok, and processing your situation deeply and thoughtfully.
    I appreciate you sharing your views, as we grow from seeing life and the world from other's perspectives. This Universe is so vast, and our knowledge so small. One day, perhaps we will have "understanding" of what this "earthly" experience and challenges were and for. So much to process on the "how come" and "why" of things for me. But I think, think, think, process, process, process, then move forward. I just can't believe all the complications in life. Maybe it's just a factor of getting older ?? Thank you for taking the time to write as you do Jim. Take care, and feel well.

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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
B-12
.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.