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Monday, May 28, 2018

Feeling so Fragile

5.28.18

Hello Life...
This crazy life of mine, ours...

I'm still obsessing on my Holes. On my Lytic Lesions. On my Plasmacytomas. On my holey bones. On how my perspective of my self, my body, my life, my longevity, my journey with Myeloma has now changed. Yes, changed. Knowing I have INNUMERABLE HOLES IN MY BONES, has really really affected how I see my incurable, always getting worse, journey with Myeloma...

I have a new reality, that's probably not new news inside me
I now know I have holes in my bones
I now know I am so much more fragile than I previously knew
I feel like my bones are made of glass, ready to break at any moment
I feel so fragile, in so many ways
I am so aware of all my aches and pains now, that I ignored before
I am so much more aware of my "breakable" status
I am no longer feeling flippant about my diagnosis, this makes it real
I am no longer in denial about having terminal, incurable cancer

That word "INNUMERABLE" has changed my life...


Over the last 8 years, I never hesitated sharing my story of diagnosis, treatment, side effects, and the mental and physical aspects of being a myeloma patient. I quite boldly and openly, to many people's surprise and shock, shared all my torrid details. Funny and painful details, medical and psychological details. I shared with anyone that asked. Just like I do here with this blog. I told my story openly, candidly, honestly, without any hesitation. Ask, and I'll share anything you want to know about my life. It was a crazy, interesting, jaw dropping story for sure.

But I always felt that I was sharing someone's else's story. I always felt so disconnected to being an ill person. I never could relate to being a terminal, incurable cancer patient. I just got used to treatment. Went to the chemo lab 2x weekly, or 1x weekly, or 1x weekly every other week, or 2x per month, or 1x per month as I do now. I take "innumerable" pills daily, weekly, monthly, yearly. I got used to the weekly bi-polar steroid life. I got used to not feeling well 4-5 days a week. I got used to feeling fatigued all the time. I got used to feeling "sick". I got used to being limited. I just adapted and got used to all the physiological changes. But I forged ahead, doing my life, in the small ways I could, when I could. I just continued doing my life, one day at a time, depending on how I felt. I didn't make huge changes. I was just more limited. Limited in energy, limited in days to do things. Limited in contact with humans due to cootie contamination. Limited in energy in so many ways. Limited by side effects. Oh yes... there was one huge change in my life last June 2017, when all this caught up to me, and I made the choice to retire from my 35 year career as a college counselor.... because of myeloma and what myeloma had done to me and my life...

But I still have my life. A great life, though so limited. I still have a variation of my outdoor, love animals, love nature, life. I still have my amazing life with my family. I still have amazing friends and friendships, albeit, virtually via social media lol. Yes, everything is more complex, edited and slower. But I still have my life.

But How I See My Life Has Now Changed. How I See Myself Has Changed. I Feel So Very Fragile. Like I'm made of glass. So breakable. I now "fear" fracturing, breaking bones. What if I move the wrong way? Turn hard on my clavicle while sleeping? Trip and fall while outside with my critters? What if I just move the wrong way, and fracture or break a leg, an arm, a hip or worst of all, my spine. I feel so fragile, so breakable now.


I have never broken a bone in my life, even with all my horse riding falls of the past! Or from skiing, or hiking, or biking, tennis, or, or, or! Bone issues were for "other" unfortunate myeloma patients, not me. I felt different. I felt I had "escaped" the "bone involvement". I thought IgA myeloma was different. That I was hit more in the immune system, with my continually compromised immune system, always having to worry about getting sick, and being contaminated by human cooties. I thought I was different. I didn't think I had Holes in my bones. Innumerable holes, lesions, plasmacytomas,.. Innumerable. And now that I know I do, I know I am not different. I am like any other fragile, breakable lesion infested myeloma patient. Tragedy can strike at any moment. I'm scared in a way I wasn't before...


My next Dr appointment and Darzalex infusion is Tues June 5. I have a long list of questions for my Dr...
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Some good links about Myeloma Bone Lesions:

pet-scans-for-multiple-myeloma

myeloma bone pictures

multiple-myeloma/treatment-options

myelomabeacon.org/forum/multiple-lesions-starting-zometa

myeloma.org/imf-publications/understanding-series







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2 comments:

  1. AnonymousMay 29, 2018

    Dear Julie,

    I'm sorry you feel so fragile. I too have innumerable holes throughout my body, but in the many scans and MRI's I've had, the radiologist makes special notes to indicate that even some of my larger lucent areas are not at risk for pathologic fracture. That's an important distinction for you and your specialists to discuss so that you can feel more comfortable about the physical activities you should (or maybe shouldn't) try. My nagging question for you is this: How can you have been a myeloma patient for 8 years, regardless of type, and not know about your bone status after all this time? Was your myeloma specialst asleep at the wheel? I find that the most concerning thing about your latest news. Finally, about Zometa: when I was first diagnosed in 2004 (at age 44), I had 2 years of Zometa infusions once a month and then follow up with Boniva once a month for a little while. Despite whatever fears you have about osteonecrosis of the jaw (which I've never had), I know that the supportive bisphophonate therapy helped me. Other than having holes in my bones, I have healthy bone density and no signs of osteopaenia or osteoporosis. At the very least, you should likely be having a DEXA scan occasionally, being a woman of a "certain age" and having been on corticosteroids for a long time (Dex can cause bone loss.) I hope you have a very good list of questions for your myeloma specialist and that you receive some much-deserved answers at your upcoming appointment.

    Hang in there, Julie. I think you will find that after this most recent shock, you'll be able to continue so much of your "new normal" activity and start to push the worry about your holey bones into the background.

    Onward! Anonymous

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    Replies
    1. JulieMay 29, 2018

      Thank you so much for your detailed comment Anon!
      I appreciate all your comments and questions. Yes, I did have "innumerable" skeletal scans, xrays, bone density tests, Dexa, etc, annually, and even xrays in between if I mentioned even the slightest twinge of pain. I had the mid life osteoporosis scans too. I have great insurance that covers everything and anything.

      The only explanation I have for NOT having the Pet/CT scan previously, is I didn't ask for it, I didn't mention it, and I never had EXTREME bone pain that triggered it. But yes, my team should have done a baseline years ago, and I plan to ask about that. All my scans came back with nothing, except last year, the one lesion on my skull. Guess in my case, ignorance was bliss these last 8 years. LOL, had me thinking my "high risk" MM wasn't so high risk after all. LOL on me!

      CONGRATS on your longevity from 2004! You're a true Legend! If my math is correct, we're around the same age :)) You give me a lot hope for more years! And thank you for the encouragement with Zometa. I have accepted I need to do this, and will start in June or July.

      Thank you again Anon, and share your story with me, and treatment details. Thank you so much for taking the time to comment as you did! :))

      Delete

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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.