Thanks for checking in and following my ongoing Myeloma cancer blog, which I began June 2010, to document my "summer vacation" at City of Hope Hospital for my Autologous Stem Cell Transplant. I hope you enjoy my candid musings and treatment status updates. Please comment so I know you've stopped by! Look for my 2021 status updates on the 1's, but I'll surprise you and post in-between :)) Thanks for reading, caring and commenting!
Friday, September 20, 2013
15 Hours Fast Forward
Tuesday night September 18 was a stunning full moon!
My "PonyPal" daughters Alissa and Courtney came home from college to moonlight ride with me!
Check that, Bucket List!!
Grooming fuzzy Buckskin, Black and Red-Appy spotted coats in the moonlight
Combing out knotted silky manes and tails
Breathing in sweet horse scents, under oak tree umbrellas
Breathing in life
In the full brilliant white moon
Chatting, laughing, reminiscing, hugging, catching up
Grooming, brushing, saddling
Chatting, laughing, taking pictures...
Giggling and being goofy like a decade ago
Nostalgic memories permeating the crisp almost fall night
Pretending no worries, carefree retrospective momentary innocence
Saddle pads centered
Bridles and reins secured
Silly as it sounds, we rode loops around the barn in the backyard
Circling only a small area, just like kids on pony rides
But it meant the world to me
Horses and humans in perfect sync
It was a huge full moon
Like a bright flashlight shinning down from the heavens
An incredible night beyond description
Sweet sublime memories permanently etched deep
Sealed in our psyches for safe forever keeping
Just 14 hours later
We are whizzing down LA freeways
Navigating traffic craziness
Cars colliding, complicating our route
Destination: downtown Kaiser, bone marrow transplant hematology oncology
Reason: out of remission status appointment
15 hours after riding carefree, I am discussing my body's betrayal
Discussing upcoming chemo treatment options
Cancer that is back
Cancer that is coursing again through and in my blood
Cancer called Myeloma, that is trying to terminate my moonlight rides and terminate me
15 and half hours after laughing, giggling, reminiscing, grooming, and being so carefree
I am suddenly surprised with a stinging intense Bone Marrow Aspiration and Biopsy
I am in physical pain
I sob more from what it means, than what it feels like
15 and half hours from beautiful, silly, joyful merriment in the moonlight
I am being pounded and punctured in my hip bone
Expert, precise, caring, knowing surgical hands
Piercing, drilling, stinging deep into my being
Medical tools invading and drawing out my bone marrow
Soon to define and determine
Myeloma's status within me
15 hours ago I was so very very happy and falsely worry free
15 and a half hours ago I was surprised with a spontaneous 4th bone marrow biopsy
My heart and mind is racing
As soon, biopsy results will tell all
It's a full moon tonight, tomorrow, this weekend
Did you notice?
Thank you always, to those of you reading and following my crazy MM journey. I deeply appreciate your expressions of love, concern, caring and comments. Deep heartfelt gratitude :)
Treatment options and decisions
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!
Saturday, September 14, 2013
Another New Normal- Confessions
With the last several month's blood tests revealing that I am really officially out of remission, so many people are surprised I am still coming into work...
|(My view walking into my office one spring day)|
So I ask you...
Why shouldn't I still work, minimal as it may be, on the few days I still can, when I feel ok?
Why shouldn't I make the effort to feel "normal", since I've always said: "fake it til you make it!"
Why shouldn't I still continue to try to be Counselor Julie, rather than Cancer Julie?
You see, coming into my work really isn't "work" at all to me.
Coming into my office, interacting with my wonderful colleagues and students, makes me feel NORMAL!
And when your life becomes ABNORMAL and turned upside down, NORMAL feels really good!
Honestly, not working would seal the deal for me that I really am ill and not capable of normalcy...
I know that all too well from summer/fall 2010 when I was hospitalized and isolated for a whole month at City of Hope for my (first) stem cell transplant. I was really, really, really sick and wasn't sure I'd make it out of there. I didn't have the CHOICE to go into my office. I didn't have the CHOICE to work or not. I was way too sick to do anything but have the daily GOAL of getting out of my hospital bed and walking to my bathroom on my own, a mere few feet away. My only focus was to survive another day. And when you don't OWN your options, all past and future options become incredibly valuable.
My role of college Counselor has been a big part of my identity for almost 3 decades!
The college environment inspires me, makes me happy and makes me feel alive.
My job is not a job
My work is not work
Being a college Counselor is an opportunity to deeply impact lives.
And I would like to believe I still make a difference in people's lives, even though I currently don't do even a fraction of what I used to do, pre-cancer.
My motto: "Saving the World, One Student at a Time".. is still an important part of who I am.
If you really want the truth...
I've come to the realization...
I am actually afraid to NOT work!
I am afraid to not do what I have done for more than half my life!
I am afraid how I will actually feel when I actually CANNOT work
When my health, symptoms and treatments actually prevent me from working (which I suspect is coming soon)-
Honestly, that to me, is scary!
People tell me- quit work, and enjoy your life!
What are you doing Julie? You have limited time now, go live your life!
Wait... does that mean my career as a Counselor is not living, not enjoying life?
I worked really hard to become me, and who I am, and how I impact others' lives.
That to me, is living life!
|(My view walking from my office one evening)|
Why aren't I traveling, jetting off to far-away exotic places
Eating, drinking, indulging
Partying like none other
Shopping, buying stuff
Going to concerts, and the theatre
Working on that bucket list
Or, if not traveling, just lounging around home
Or taking up a more sedate hobby
Well you know what, those things really aren't what makes me happy
And sadly, I really don't have the physical energy any more, or the immune system to do those things. See my blog from last summer's disastrous Hawaii trip :/
What makes me happy is being someone; being valuable; contributing; sharing; caring; laughing with others; making a difference in this world, in whatever small way I do, until I can't.
My work, means making a difference to those in my little world.
My office and my colleagues have been my extended family for half my life!
|My amazing Counseling Office colleagues!|
So I ask you ... why shouldn't I work, on those days I feel somewhat ok?
Why shouldn't I try to be productive, feel as "normal" and "ok" as possible, on those days I can?
As the day will come... when I can't...
Cancer is NOT a reason to stop engaging and contributing
Cancer is THE reason to continue living and doing those things that I can, while I still can
Because, soon, cancer will take that away from me...
I think dramatically changing my life right now would really make me feel sick, unaccomplished and non-productive.
But at next week's oncology appointment I will find out, what I can and cannot do...
I've worked since I was 12 or 13 years old-
First babysitting, then grooming horses and mucking stalls to pay the monthly board of my beloved first horse-
I also worked for my parents doing "odd" jobs-
I then stepped onto the first rung of my career ladder, at 18, working as a Peer Counselor-
Which evolved into the second rung of my career ladder, working as an Advisor-
Which then evolved into my role of Counselor Julie!
Working for and with others is what I do best.
Being there, intellectually and emotionally, for others is what I specialize in.
Promoting, empowering, supporting, analyzing, challenging ideas, inspiring, mapping, planning, advocating, and encouraging dreams and goals... that is what makes me feel alive.
Not working, not doing, not being someone in this world, would confirm I am incapable and sickly... which would confirm I have terminal cancer and that cancer is winning.
And I am not willing to accept that cancer is winning yet...
of the new Student Services building
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?
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.