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Saturday, May 30, 2020

Just Too Much Going On

5.30.20

Hello Friends....

Not the post I was going to post...
Just too much going on in my little world and the big world...


So in short, I had a really rough week from this week's chemo. Since I am on so many meds, I can never tell which is causing what.

Early on treatment mornings, I take Dex steroid pills (7 x 4mg = 28mg) before I leave for the chemo lab. Then at the chemo lab, I'm dosed up with more IV steroids @8mg for a total of 36mg. Interesting amount. For years I have done 40mg as 10 pills.

Next they give me 2 Tylenol pills, @ 650mg,
Pepcid @ 20mg via IV,
A slow drip bag of Sodium Chloride hydration drips through out the infusion,
And thennnnnn.... a lovely IV push of 50mg of Benadryl.
Yummmyyyyy!!!!!

Many would not "enjoy" this medication ride as I do, but honestly, with everything I am going thru at home with my Alzheimer's hubby, sad to say... this is like a "spa escape" for me. The steroids quiet all the bone pain, headaches, and random body aches and pains, and gives me an amazing energy boost. Honestly, I just feel good all over. Sometimes a little buzzed, but all depends on how low my CBC levels are. Then when the Benadryl hits, I get all woozy and cruisy. You know that calm, serene feeling floating on a boat. Ah, just so lovely! How do you spell RELAX! Yep, it's just so warm and fuzzy and woozy without the boozy, lol. I know many would not agree with me, and absolutely do not like this feeling, but since I never did drugs or booze, I enjoy this medical relaxation. Groovy woozy :))

All these meds circulate and do their thing for about 40, 45 minutes, before they start the Elotuzumab-Emplicity IV. There are various drip speeds and time protocols, but I always ask my nurses to slo-mo everything, so I don't have a strong reaction. Plus, and you'll laugh at this, I just want to spend as much time relaxing there as I possibly can. How funny and how sad is that!

I only have a slight stuffy throat reaction to the Elotuz, but really nothing at all during the infusion. I then take Revlimid pills nightly for 21 days.

But then.......... like clockwork.. about 36 hours later, all the "good" side effects begin wearing off, and rather quickly, the YUCKY begins... and it's all down hill from there for a few days. This week because of the Memorial Day Holiday, my infusion was on Tuesday, so late on Wed the Yuck began and really revved up on Thursday and into Friday. I was extremely weak, fatigued, had lovely diarrhea off and on late Wed, into all day Thurs, and into Fri. Ugh... so exhausting. I was so fatigued and tired, I actually almost fell asleep on the pottie several times.

So way back in the day, when I was on Revlimid, I had crazy unpredictable diarrhea, well actually it became predictable. I have some pretty funny blog posts about it, mostly during 2013, 2014, 2015. So here we go again with that, and the fatigue. Oh the awful, exhausting fatigue from daily Revlimid.

And I am just trying to do so much, too much, each day, just maintaining our household, ranch, plants, animals, people, laundry, bills, cleaning, fixing, repairing, insurance, ordering supplies, being organizer, supervisor, navigator and "boss lady" to everyone and everything. Thursday, I just had to give up, and give in, as I could barely stay awake. And I was so dizzy too. I'm not a napper, but I eventually just collapsed on the couch.


This coming week I'm supposed to do the MRI "without and with" the scary Gadolinium contrast. Will I do it? Not sure. Am I worried about how myeloma is raging inside of me, Yes. Do I feel "weird things" in my head and body where the tumors, masses, lesions are... Yes. Do I want to Really Know What's Going On? Hmmmm, not sure. And I always wanted to know it all, always wanted to know all the details... but now... maybe "ignorance is bliss" in this case. Just too much on my plate right now. Wasn't supposed to be like this. We weren't both supposed to be so sick, and at the same time. Just such a tragedy. So much is a tragedy in this life. Didn't used to be so challenging. Why, body, why did you, are you sabotaging me so much. Sabotaging our lives. Lives we worked so hard for, so carefully. 10 and a half years is a long time to be battling cancer, ingesting chemo non stop. I'm amazed I'm as "well" as I am for all I've been through. Grateful yes. Exhausted yes. Answers coming up next blog that I probably don't want to hear, or deal with...

Thank you for reading and caring, and I hope your life is simpler, happier, and less challenging. But in the Big Picture of Things... in the Big Giant Picture of Things... I'm ok...




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2 comments:

  1. UnknownJune 03, 2020

    Julie,Sorry you have go through so much.It is amazing your
    stamina and determination!Trust things go well this week.
    Know many are praying and thinking positive thoughts for
    you!
    Ron

    ReplyDelete
    Replies
    1. JulieJune 13, 2020

      Thank you for all your care and concern Ron. It's all wearing me down, but we've fought battles all our lives, right... so it continues forever for me. Hope all is great in your life :))

      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.