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Tuesday, May 1, 2018

Finally Better!! Ok, I Learned My Lesson...

Hello May!
5.1.18

Just a quick check in to let you all know I am finally feeling better, and getting beyond my gloom and doom. I was always so healthy, well and active prior to Myeloma, that being a Sickie now is just so difficult for me on so many levels. I can even handle the terminal, incurable cancer diagnosis, if I can just feel ok. When I don't feel ok, it just sucks the life out of me, drains my optimism, steals my hope, and gives me pause about my continuing purpose here...

But today, thank you Antibiotics, I am a bit better! This past Sunday I finally gave in, accepted that being sick 3 weeks was ridiculous. Even though every day I was a bit better, I finally gave in, and went to Urgent Care. What finally pushed me over the edge, accepting I needed medical evaluation, wasn't the sinus infection symptoms, as those were clearing up, but it was the awful loss of hearing, fullness in my Right ear, the sense of cotton stuffed in my ear, and the overall annoyance plugged ears feel like. I secretly knew I had tested the limits of my weak immune system's ability to dominate this crazy bug. Being stubborn, hoping to be who I was before Myeloma, was just down right dumb! Yes, I can no longer live in the past, hoping my body can always heal itself. I've been pretty lucky so far with battling the bugs on my own, and actually 90% of the time I do finally get well on my own, but geezzz, what am I proving trying to be so strong, and not getting medicinal help. Pride and Stubbornness in this situation is just plain dumb. Stupid and Dumb. Just call me "Dumb and Dumber" :))


So I went, was quickly evaluated for an Ear Infection, a result of the Sinus Infection that hung around for 3 weeks and collected it's final cooties in my ear. I was dispensed the Z Pak: Zithromax, Azithromycin antibiotics for 5 days. Yep, I laughed at myself, chided myself, and mentally bopped myself in the head for waiting so long. Dumb! Should have gone in sooner. But again, I didn't at first, as when I feel so awful, the last thing I want to do is leave my house, then as the sinus infection symptoms sloooooowly improved, I kept thinking I'd be well the next day, or the next, or the next... Dumb. The good news in all of this... no other issues. Chest clear, lungs clear, no pneumonia, no bronchitis, etc. I had effectively battled that part of these evil germs on my own.

Z Pak down the hatch for 2 days now, and headed to take pill #3 after I post this. Amazing what modern medicine can do for a struggling immune compromised, cancer, chemo ravaged body LOL! Duh Julie! Strong miracle myeloma meds are what have kept me alive for 8 years now. Modern medicine is amazing Julie. Accept it! Use it. Take advantage of meds other than myeloma killing meds to heal up. Dumb and stubborn here.

My ear is just now beginning to clear a bit. It doesn't feel as full, and when I purposely yawn and stretch my face, I can hear the popping and crackling of the ear mechanics! Ahhhhhhhhhh, what a relief! I never had any pain with this, just the dull, clouded, cottony ear fog. Ugh, I just don't do well, when I am not well. All my positivity drains, my optimism is stolen, and I am just a weak, whiny, feel sorry for myself, why me person. And in the BIG picture of things, these issues are so small. I just lose perspective.

Moving forward....

Next week, Tuesday May 9, I have my monthly Dr appointment and Darzalex infusion. I'll do labs in a few days, and know my IgA and M Protein status.

ADDITIONALLY... I don't think I mentioned.... 
I received an email from my Dr, letting me know that my early April PET/CT Scan DID SHOW new, and additional Myeloma LESIONS...

I received this news AFTER my last Dr appointment, so I don't know the details... then I got sick, so I didn't follow up for details. This adventure never stops, is never dull, nor uninteresting, right! I get well from the cooties, and now prepare myself for myeloma bone destruction news. As a fellow myeloma warrior says: "Myeloma is the gift that just keeps on giving!" Yep, forward march we go, one day at a time, one issue at a time, learning from each challenge, each speed bump, on this crazy road to I don't know where...


I'll post the results to this exciting news on May 9 or 10, depending on how I feel from my Darzalex infusion, and the news I hear... May your life be what makes you happy, rewarded, positive, thoughtful and meaningful. And may your body be your friend, and not betray you.

Live happy, live well, and make a difference somewhere, somehow, 
with someone or something as often as you can!



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2 comments:

  1. AnonymousMay 08, 2018

    I am so glad you are feeling better. Jewell

    ReplyDelete
  2. JulieMay 10, 2018

    Thank you so much for reading and caring Jewell! Yes, thank goodness all the sinus, head, ear stuff has passed, and now it's on to dealing with all my lytic lesion holes, as I ranted about in my current post :))
    Hoping you are doing well, and life is moving along happily, and healthy for you and yours!
    Thank you for reading, checking in and commenting. Means a lot to me to know my words are being read :))

    ReplyDelete

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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.