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

Sunday, April 11, 2021

HOME and Big Challenges- Updated...

4.8 - Hospital Arrival- during the day, my chemo Nurse arranged Admission (8pm) and Private room for me in advance for my 2 bags of Platelets and 2 bags of Blood :))  Scott had to take me in and out, in a wheelchair. How sad is that. Pallative delivered one here a few weeks ago :((

4.9 - Hospital all night long, came home in the late morning exhausted. No Sleep. Wonderful Nurses, just too much monitoring all the time, but I understand why.

4.9 - Home, Shower, sleep, super weak legs, problems from that, etc. Taking Zarxio to raise WBC.        

4.11 - Pallative Home Health Nursing Team came and will come again 4.14 to set me up with more help. Get this! It's the same wonderful team we had for Jim. They cannot believe how fast I've gone down hill, and how Myeloma is totally eating me up alive. I'll arrange for a Remote bed, continue with the Phlebotomist coming here for weekly for labs. as I'm too weak to go anywhere. Will take more steroids for strength and functioning. Cannot believe the weakness I've been experiencing for weeks, months..., especially recently. Never appreciated the power and job of Red Blood cells. Used to always worry so much about my super Low Immune System. Now, I would be happy to completely completely completely Bubblize myself and not worry about my low WBC, if I could strengthen my Reds for mobility and functionality. Getting places in my house is a big challenge and a "catch 22", and scary. But I force myself every morning to get to the bathroom, then walk to the family room from our bedroom so I don't loose muscle and strength. I will not stay in bed all day, besides it's not comfortable, and the little doggies need outside in the morning. I'm also in such a "catch 22" where my stupid Extramedulary Alien Mass won't let me eat much, so I get more weak from not eating much, preventing me from strengthening my legs, arms, body, etc for mobility. So then my mobility and functionality is so super weak, I fear not being able to get off the pottie, or falling. So then I eat and drink less, so I am not challenged by bathroom event all the time. But that's not good either, as I'm so thirsty all the time, and my body needs hydration, or stupid Extramedularlly tumors are sucking up all my hydration... But often when I do eat... a few hours later... oh boy, move out of the way fast... I laugh, cry at my circumstances. Worst case, I will crawl to my bed or couch in our bedroom for stability getting up. How ridiculous is this, for me, used to be "cowgirl Julie. And of course, Nothing really tastes good anymore. I watch the travel cooking channels and dream of eating some of the things I see there. Oh well, next life... Doggies are getting lots of left over treats now lol, cuz I barely eat anything I prepare. It's all so CRAZY! And to think who I used to be :((


LOL Hospital blanket, not Spa robe lol

Lots to tell, be back later. Thanks for caring and reading as you do. This is the best way to let everyone know what's going on with me... xoxo 


4.12.21 UPDATE:
- Dr appt on Wed (4.14) for my eye status (side effect from Blenrep and Low Red Cells). Monthly meeting with my regular Dr.
- Since being on Blenrep, I have experienced (a week after infusion), low grade fever for a few days at night. Fortunately that has been gone for over a week. And did I mention previously, I had more 24hrs of nose blood hemorraging. Couldn't believe what few Platelets causes! That finally ended when I took steroids.  
- Blurry vision, especially Left eye, but that could be from the low Red Blood too
- Grew another weird Right side soft Hematoma tumor out of no where, fast, between my Collarbone and Neck. Has gone down a lot thankfully!
- Grew some weird black and blue bump, lump on my inside Right side, inside my mouth, cheek. Mostly gone, thankfully!
- Have become more weak and imobilized each day. Pain keeps increasing on my Right side leg. Trying not to eat Tylenol like candy. Main thing that helps always, with EVERYTHING for me is Steroids, as they are such a powerful anti inflamatory. Starting to take one 4mg before bed nightly, or first thing in the morning. I always told my Drs that when the "late stage" comes, Dexamethasone Steroids will be my Go To medication. All the other hard core drugs would probably affect my mental state and psychological processing, which I don't want.... But who knows, maybe I will. I don't need to relax, I don't have "anxiety", I just want to feel good and be painfree, with my mind intact and get back to mobility options. 

THANK YOU SO MUCH EVERYONE FOR ALL YOUR CARDS, CALLS, MESSAGES, ETC. Sorry I cannot always answer you always, as I am so beat up physically. Thank you for all your offers of help and assistance. My Adult kids come daily to help with all the outside animal chores. Can't believe all the critters have greater logevity that me and Jim! We used to talk about that... never expected it...

Nala Hanna Jack 

Kristin

Scott

Alissa

So thank you so much for your offers of HELP! At this time, only help I need, is too sporatic for an outsider to help LOL. You'd have to be 24 7 "on call", or I'd need an old fashion bell for help needed, like when I need help getting up from bed, getting up in the bathroom or other areas of the house, then doggies need letting out in the morning, the kitty liter box needs to be cleaned several times a day, as poor Luci has GI issues. Yes, so many of you would say donate the animals somewhere, but No, we made a lifetime commitment to them. Did I mention the Turtle, Tortoise, wild Birdies, Chickens, etc too? And it all used to be so routine and easy for me and Jim...
And all I want now, is to be out there with all of them... What happened? Why? I just don't understand. I am needed here, "not there"...

Thank you Everyone for Caring as YOU do xoxoxoxo

19 comments:

  1. I am grateful you are home where you want to be. But all of this is so very sad. You are so amazingly strong. Let those around you be strong now, and care for you, and you rest, cowgirl. Hugs Hugs, Tears, and Hugs. Jan

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  2. Dear Julie, You are extraordinary. Thank you for being willing to share your experiences and feelings at this difficult juncture of your journey. I can't adequately express how helpful your blog has been for me and I suspect for your many loyal fans and friends. You are a model of honesty; sharing the unvarnished truth in your chronicle is rarer than you might think and so important to all of us myeloma patients no matter where we are in our trek. You seem to have your hands firmly on the reins now, making sure you are guiding this trail ride. I'm glad you are home, in the surroundings that give you joy and seeking the help, care and peace of mind you so deserve. I know you might not like to hear it, but you are truly brave. With hugs and admiration, Aurelie

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  3. It is good to be back home, "just click your heels, Dorothy, it's there.." something like that from the Wizard. Oh if it were that easy. I watch for your updates, Julie and pray you along. The why is the big question we never get resolved this side of the clouds, I am convinced. It is good you can at least write here ,,,,if only, if only,,,,think of you a lot and send big hugs and smiles and prayers to warm and wrap you.

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  4. Thank you for sharing, Julie. Wishing with all my heart that things would be, could be different. Sending love and light your way.

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  5. Hi Julie,

    I signed off as "S" below on an earlier post and that obviously confused you but this is Steve, from Ohio. Yes, as you perhaps recall, we were both dx'd in December 2009. Been some rough years for sure! I'm not quite as bad off as you are as my MM has not been all that aggressive, still, it just ain't no fun having disabling neuropathy in my feet and the Sword of Damocles hanging over my head....I'm sure you know how that feels too. I hope some of these meds help you turn a corner and I'll be thinking of you.

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  6. I know you can’t respond but you have touched SO MANY lives through COC , NSP, and your blog. It’s evident that MM is taking over but you have been the conquerer for so long. Many years ago I worked hospice and those experiences and my own faith bears witness that the best is yet to come! God bless- your future is wonderful and you will be surrounded by love ones. 💖 Laurie Tilden

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  7. I know you can’t respond but you have touched SO MANY lives through COC , NSP, and your blog. It’s evident that MM is taking over but you have been the conquerer for so long. Many years ago I worked hospice and those experiences and my own faith bears witness that the best is yet to come! God bless- your future is wonderful and you will be surrounded by love ones. 💖 Laurie Tilden

    ReplyDelete
  8. I know you can’t respond but you have touched SO MANY lives through COC , NSP, and your blog. It’s evident that MM is taking over but you have been the conquerer for so long. Many years ago I worked hospice and those experiences and my own faith bears witness that the best is yet to come! God bless- your future is wonderful and you will be surrounded by love ones. 💖 Laurie Tilden

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  9. Julie,I cannot believe how strong you are.I do not know
    Laurie but assume you have been friends f0r along time
    with the reference to NSP.I agree GOD BLESS YOU and will
    keep you in my prayers.
    Ron

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  10. Dear Julie, I'm so sorry to hear everything you're going through. What a nightmare. I have two little doggies and two cats of my own and have the same need to outlive them. Such an extra worry on top of everything else. Is the Blenrep having any effect on your myeloma? How long do your doctors want to try it? I don't know if you are going to pursue more treatment, but if so, have you given more thought to Car-T now it's been approved and you could get it outside of a trial. The MMRF had a virtual patient summit on April 10th that included a talk by a patient who had gone through it and had only really experienced fever. The consensus seems that it's a lot better experience than an autologous stem cell transplant. It's a one and done, so you'd get a break from any chemotherapy after it. Maybe it would work for you and buy you more time to sit in the sun with your dogs and all the other animals on your wonderful ranch.
    Ruth

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  11. Dearest friend. I usually don't comment on your blog but I always read it. As you know, I comment on facebook. I wanted to let you know that Brian wrote a song for you and sent it to you via facebook messenger. We are all thinking of you and sending you much love. - Betty

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  12. Always ready to come down and sit in front of your barn with you. Text me or have Scott or Alissa text me whenever you are up for a tiny outside break. Love you.

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  13. You have amazing fortitude in the face of such MM adversity! I pray for a miracle for you, and hope that the doctors can come up with something that eases your pain and suffering, and you can at least enjoy eating a little. I know the animals are difficult for you to manage now, but accept help from whomever offers, and keep your little buddies around you. You need them now! Wish I lived in your neck of the woods. I would be happy to visit and help.......Sending virtual hugs and love.

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  14. WHAT A GREAT MIRACLE THAT I HAVE EVER SEE IN MY LIFE. My names are Clara David I’m a citizen of USA, My younger sister was sicking of breast cancer and her name is Sandra David I and my family have taking her to all kind of hospital in USA still yet no good result. I decided to search for cancer cure so that was how I found a lady called Peter Lizzy. She was testifying  to the world about the goodness of a herbal man who has the roots and herbs to cure all kinds of disease and the herbal man's email was there. So I decided to contact the herbal man @herbalist_sakura for my younger sister's help to cure her breast cancer. I contacted him and told him my problem he told me that I should not worry that my sister cancer will be cure, he told me that there is a medicine that he is going to give me that I will cook it and give it to my sister to drink for one week, so I ask how can I receive the cure that I am in USA, he told me That I will pay for the delivery service. The courier service can transport it to me so he told me the amount I will pay, so my dad paid for the delivery fee. two days later I receive the cure from the courier service so I used it as the herbal man instructed me to, before the week complete my sister cancer was healed and it was like a dream to me not knowing that it was physical I and my family were very happy about the miracle of Doctor so my dad wanted to pay him 5 million us dollars the herbal man did not accept the offer from my dad, but I don't know why he didn't accept the offer, he only say that I should tell the world about him and his miracle he perform so am now here to tell the world about him if you or your relative is having any kind of disease that you can't get from the hospital please contact dr.sakuraspellalter@gmail.com or WhatsApp him +2348110114739  you can follow him up on Instagram @herbalist_sakura visit his website     https://drsakurahealthclinic.wixsite.com/website https://sites.google.com/view/herbalistsakura                               https://drsakuraspellcentre.blogspot.com/                 https://drsakuraspellcentre.wordpress.com/         for the cure, he will help you out with the problem. And if you need more information about the doctor you can mail me    davidclara223@gmail.com

    ReplyDelete
  15. I’m giving a testimony about Dr. KOKOBI, the great Herbalist, he has the cure to all manner of diseases, he cured my  breast cancer, though II went through different websites and I saw different testimonies about different spell casters and herbalists. I was like: ‘Many people have the breast cancer remedy, So why are people still suffering from it?’ I thought of it, then I decided to contact kokobiherbalremedycentre@gmail.com , I didn’t believe him that much, I just wanted to give him a try, he replied my mail and Needed some Information about me, then I sent them to him, he prepared it(CURE) and sent it to Airfreight Online Courier Service for delivery, he gave my details to the Courier Office, they told me that 3-5 days I will receive the package and i took the medicine as prescribed by him and I went for a check-up 1 week after finishing the medicine, I was tested for breast cancer negative, if you are a breast cancer patient or any cancer patient at all. Do me a favor for you to contact him and I will try my possible best to make sure you get cured, when you contact him, make sure you tell him that I referenced you.. contact him via: kokobiherbalremedycentre@gmail.com You can also message him on WhatsApp +254746618873 you can also call him via +2348114448587 website:https://kokobiherbalremedycentre.weebly.com  email me for more info @ juliethilton80@gmail.com

    ReplyDelete
  16. WHAT A GREAT MIRACLE THAT I HAVE EVER SEE IN MY LIFE. My names are Clara David I’m a citizen of USA, My younger sister was sicking of breast cancer and her name is Sandra David I and my family have taking her to all kind of hospital in USA still yet no good result. I decided to search for cancer cure so that was how I found a lady called Peter Lizzy. She was testifying  to the world about the goodness of a herbal man who has the roots and herbs to cure all kinds of disease and the herbal man's email was there. So I decided to contact the herbal man @herbalist_sakura for my younger sister's help to cure her breast cancer. I contacted him and told him my problem he told me that I should not worry that my sister cancer will be cure, he told me that there is a medicine that he is going to give me that I will cook it and give it to my sister to drink for one week, so I ask how can I receive the cure that I am in USA, he told me That I will pay for the delivery service. The courier service can transport it to me so he told me the amount I will pay, so my dad paid for the delivery fee. two days later I receive the cure from the courier service so I used it as the herbal man instructed me to, before the week complete my sister cancer was healed and it was like a dream to me not knowing that it was physical I and my family were very happy about the miracle of Doctor so my dad wanted to pay him 5 million us dollars the herbal man did not accept the offer from my dad, but I don't know why he didn't accept the offer, he only say that I should tell the world about him and his miracle he perform so am now here to tell the world about him if you or your relative is having any kind of disease that you can't get from the hospital please contact dr.sakuraspellalter@gmail.com or WhatsApp him +2348110114739  you can follow him up on Instagram @herbalist_sakura visit his website     https://drsakurahealthclinic.wixsite.com/website https://sites.google.com/view/herbalistsakura                               https://drsakuraspellcentre.blogspot.com/                 https://drsakuraspellcentre.wordpress.com/         for the cure, he will help you out with the problem. And if you need more information about the doctor you can mail me    davidclara223@gmail.com

    ReplyDelete
  17. Hi there Julie, any updates??

    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.