Cowgirl Up!!! ... Does Horse Poop Cause Cancer??

Sunday, December 20, 2020

Pity Party Time

 12.20.20

Hello Friends-

I'm so beat up. The 40mg Dex Steroids, 4days on, are really taking their toll on me. They're great the first few days, then with all the sleepless nights, then the totally yucky crash for a few days, I'm rethinking my insistance on doing this. And I also can't stand how bloated I feel and how puffy I look. And I just can't stand all the Fatigue. I feel so limited and disabled. I'll take my Myeloma status labs middle of the week, and we'll see what's really going on with Myeloma trying to win. Perhaps I will downsize to 20mg per day? Ugh I am just so over all this. I hate you Myeloma and what you have done to my life...

It's a beautiful day out today, and I just can't drag my sorry self out there... but I will, because I have to, because it's just so beautiful out. As I write this, I look out our big kitchen window and see my horses soaking up the December sun, swishing their tails at the few remaining flies of 2020, Jim's roses and flowers still bloom brightly, the doggies run around chasing flying things and each other, and the breeze blowing thru the oak trees and our patio, wakes up Jim's collection melodic wind chimes. I just have so much to be grateful for, but honestly, I'm so weak and tired, I have residual pain points that remind all the time of my situation, and my helium, my get up and go, is just stolen. I'm grateful, but so sad.

During my awake hours I try to get things done. I feel like I have a huge boat anchor ball and chain attached to every part of me. The Fatigue is just disabling. I have a headache today. Hope that doesn't mean something. Perhaps I'm a bit dehydrated, as I'm so very tired of hydrating. Nothing really tastes good, and I find myself snacking more than I used to, just to get the metallic taste out of my mouth. Doesn't do much good tho. Some days I eat "well", some days I just don't "care". My Not eating well would be most people's "good" days, as I'm not a junk food eater, but I certainly don't get every nutrient on the food pyrimid everyday. I care, don't care, anymore. I often wonder if I am feeding, nourishing, powering my immune system, or if I'm actually empowering the myeloma cells trying to kill me. When I eat well, take the vitimins I do (B12, D3, Multi, etc), I wonder if the myeloma cells are laughing and gobbling it all up and gaining strength against me. It's just so weird to live with your body sabotaging you, and trying to kill you, every second of every day, 24 7.

Honestly I just can't wrap my head around all that has happened to me. In many ways, I so carefully planned my life, was super cautious with most everything I did, I didn't take a lot of "risks", and then I am rewarded with terminal, incurable cancer. Where the F did Myeloma come from? How did it find me? I'm always asking WHY, How Come, Why Me, Why the Torture, What Did I Do To Deserve This? I just want Peace, Serenity, Calm, Happiness, No Challenges any more, No Pain. I want to Laugh and have Fun. I want to have Energy to help myself and others. I was a helper all my life. I gave and gave and gave. I did little specifically for me. Why Life, Why, Did This Happen To Me... I know,... I'll probably Never Know the Why... 

So I carry on. One labored step at a time. Sad, Angry, yet Grateful. Shocked and Amazed. Always wondering, always shaking my head that This Can't Be. This Cannot Be My Life. 11 years Fighting is a long time. 11 years taking super strong chemo meds is a long time. 11 years in continual treatment is a long time. 11 years processing having cancer and being sick, is a long time. 11 years being sick. Grateful for 11 years, But it's become so Awful, yet I am very Fortunate in so many ways. 

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Well look at these lovely test results that just came in. From the time I started this post, I did go outside as my kids and their significant others came over to help with chores. Was super nice to be outside, and feel a bit of normalcy with them. When they left, I did too, and went to take my Monday pre-chemo status labs... I probably should not be driving as I am so weak and dizzy, but I am very careful. They always offer to drive me, but the Independent spirit in me, insists I'm ok... 

So whatcha think my Dr will decide re doing Kyprolis and continuing Dex, after seeing these wonderful levels:

Oh Boy...
Not Good...

And that Platelet level
Oh Boy...

And my ANC is super Low too... Neutropenic Low at-

NEUTROPHILS, ABSOLUTE COUNT (ANC)

Me = 0.85 x1000/mcL   (1.80 - 7.70 x1000/mcL (normal range)

Ok, I'm done for today. So sad, so disheartened. I feel I am fighting so hard to be ok, and I am only getting worse. Is it Kyprolis not effective any more? The high dose steroids backfiring? Is Myeloma just too powerful for my weak body? Will I be able to receive treatment tomorrow? Did you see the note about the "critical WBC result". The on-call Dr called me around 10pm last night...  wow, WBC of 1.0... Stay away cooties, as I'm super immune compromised... ugh... 

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Thanks for reading and caring everyone, and if I don't post again before the holidays, I hope you have a happy time with your families, whatever you are able to do, in these crazy crazy times. I'll post when I receive my Myeloma status labs, and also after my end of the month, last Dr appt of the year, Dec 29... Thank you for caring and commenting as you do, your virtual friendships mean a lot to me :))


LOL LOL 


Posted by

10 comments:

  1. Mary GallinaDecember 21, 2020

    Julie - now is a good time to let someone drive you to labs and appointments. My husband was just like you - so strong and independent. But I now wish he had let me take more care of him especially when his bloodwork numbers got so low. Let friends and family help you - you are carrying a huge burden. You are doing great though and I'm pulling for you!

    ReplyDelete
    Replies
    1. JulieDecember 23, 2020

      Hi Mary, yes you are right, and I should ask for more help. My adult kids, and close friends offer all the time, but I just want to feel "normal" lol, so I just keep being silly Independent. I am very safe with what I do, but I do need more help like I haven't over the years. Just so hard to accept my decline, and of course the Dex steroids fake me out lol. Thank you so much for your sweet comments, and following my crazy life story. Tell me your husband's story, if you are ok with that. Knowing what my MM warrior buddies have gone thru is very helpful to me. Thank you for writing! xoxo

      Delete
  2. ellen goldsteinDecember 21, 2020

    Julie,

    Do you qualify for any drug trials? I am thinking of the Car-T trials, specifically. They seem to get some really good results for people who have had many lines of treatment. Also, that new drug, the one that pairs your own enhanced T-cells with a targeted chemo - Blenmab? Maybe ask your dr. about it. I say a prayer for you everyday. Please explore whatever new treatments are available. There's so much new stuff. What about Isatuxamab or Selenexor? I think they are new too. Hang in there, Julie, my myeloma sister! I hope you can get some enjoyment with your family during the holidays. I say we should all get an extra year because 2020 was such a disaster!

    You are brave and wonderful. Keep us posted.

    Xoxo, Ellen

    Perhaps you need neupogen or procrit to boost your reds and whites.

    ReplyDelete
    Replies
    1. JulieDecember 23, 2020

      Hi Ellen, thank you so much for following my story, commenting and suggesting. Please don't take offense, but what you write and suggest is exactly what I will "not do" and am "afraid" to do. I know of several who have passed from doing the CarT, as it so mutated their myeloma and system. I am afraid of Trials, as the Patient just doesn't have much control of what they are receiving. And the new meds you mention, are good, but for me, the side effects outweigh the "good results", and I have MM friends on them, that have had the "bad side effects". Buttttt, I may get to a point where I will try the new ones, once I go thru all the combos of the oldies.
      How are you and yours doing? Such a crazy crazy 2020! xoxo

      Delete
  3. PattieDecember 21, 2020

    Julie so sorry your sad my hope for you this holiday season is you find some relief and comfort in family and your pets. You’re like me we need to take one day at a time I find that helps me cope. Merry Christmas

    ReplyDelete
    Replies
    1. JulieDecember 23, 2020

      Hi Pattie, thank you so much for following my story and commenting. Yes, this MM roller coaster is nuts, but I do get relief on steroid days, but the crash is awful. So one day at time, and hoping that something I am doing is pummeling my IGA myeloma and the mutated Extramedullary myeloma. I'm headed for labs now, so I'll know in a few days my status... hoping your hubby is doing ok, and I will email you back asap xoxo

      Delete
  4. Bonnie PankhurstDecember 22, 2020

    💗🙏

    ReplyDelete
    Replies
    1. JulieDecember 23, 2020

      Thank you Bonnie for continuing to follow my story even after your tragic loss. 2020 sure threw us some major challenges, even beyond Covid Corona! My heart is always with you, and I will email you asap xoxo

      Delete
  5. Obnoxious JimDecember 27, 2020

    Julie, each time I read your newest post, I try to take some of your suffering onto my own shoulders. "You pick the flower on Earth and you move the farthest star." Not just philosophy...

    ReplyDelete
    Replies
    1. JulieDecember 30, 2020

      Thank you Jim. Very sweet of you! I appreciate that you continue to read my blog of raw thoughts and realities, but please don't take on my suffering along with yours. We both will pick beautiful flowers, and for me when I am outside at night, I too pick stars and talk to the Universe, and ask WTF happened to my life LOL. It's a beautiful Earth and Universe, and I'm not ready to leave yet... Take care of you, and I hope 2021 is a good year for you!

      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.