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

Wednesday, March 16, 2016

Myeloma Myeloma Myeloma ~ Links Links Links

Hello loyal readers-

Perhaps you're weary of my philosophical musings of my ongoing suffering? (Me too LoL!) I noticed there weren't any comments on my previous post. Must have been the "Fungus" analogy :) I read a lot of blogs and don't always leave comments, so not to worry! Please know that I really appreciate all the visits from all over the world. I'm fascinated, amazed and appreciative when I view my blog Stats and see the visits from around the globe, and see who's reading my posts from where. Thank you for caring about my life, my situation, my status, my posts and my myeloma musings!


I do love when you leave me a note, letting me know you've stopped by to read about my life, as I care very much about you and your life and what brought you to my blog. I have readers email me that they have had difficulty posting, or the blog losing/deleting their comment after they click to post. Here's what I do when I respond to blogs: I make sure to copy my text before I click post, so just in case the blog deletes your post, you still have your comment saved in memory. This particular Google based blog requires an identity, so log in however you'd like, write your thoughts to me, copy your text, and click post. If it doesn't post first time round, you have your text saved to post again, now that you are signed in. Just a thought, in case you've had my blog delete your comment, after you've posted. I really do want to hear from you, hear your story and know where you are from!


If you're reading my blog you either know me personally and know this is the best way to know my status (physically and mentally) or you've stumbled upon it looking up info related to Multiple Myeloma. That's how I originally found all the wonderful blogs out there. I Googled in Myeloma, and boom! found a tremendous wealth of information related to everything myeloma! I continue to read and read and read about everything myeloma, as information about this cancer that invaded my life never ceases to fascinate me. So here are some great links I've found, that will help you interpret your blood tests, give you more detail about myeloma and some other general links I read often, such as the MMRF, IMF, Myeloma Beacon, Myeloma Crowd, etc. I also have quite a few blog links to the right of my blog, as well as at the very bottom of the blog page. So much information out there now! 

This is a great site that explains all the details of (all types) of lab work:  








Myeloma drugs and medications, news, support groups, etc:









Depending upon your life perspective, this TV article may comfort or offend you. Personally, when my life is done, and myeloma has COMPLETELY taken over my body and I have absolutely NO hope of survival, I personally do not want to needlessly suffer and just be a "live corpse". The idea of having NO control over my life, my body, my functions and being in excruciating pain, scares me. Perhaps I am more comfortable with death and passing-on than many, as I've had to make this decision more times than I can count for all our animals, who's life was essentially over, but their body would not yet let them go. It's just so awful and tragic to watch needless end of life suffering. I have experienced horrendous Colic situations with our horses, Cancer with our dogs, disabling Strokes with our dogs and cats, etc. When one is suffering and there is absolutely NO hope of recovery, and that life is suffering needlessly, it is time to let go and say good bye peacefully. Just my personal opinion, which of course may change when I get to that point. 

Here are a few links related to a person's right to make a MEDICAL end of life choice:



Today was my 6th Kyprolis infusion for the month. I think my veins are beginning to protest this treatment, and I fear the possibility of having to accept a Port or Picc. Why fear this? Check my 2010 Stem Cell Transplant complication, when my Hickman Catheter became septic and the sepsis nearly did me in... I just hate being sick, and try to be so very cautious, and having a Port or Picc invites cooties and germs to invade more easily. Yes having a needle stick several times each week has it's dangers too, but at least it's removed after each chemo infusion, and I can wash and wash and wash freely (especially considering my animal care-taking life style :)

Monday brought 2 needle sticks, trying to find a happy healthy vein. Tuesday brought 3 needle sticks. I appreciate all that the chemo nurses do to make the infusions painless, and I know they feel very bad when our veins aren't cooperating. My February Flu "Fungus" really affected me, and my body hasn't normalized quite yet. I'm trying to eat well and hydrate hydrate hydrate. But it's all such an effort for me. 

Such a lovely picture of me :( I have a bruise like this on both hands. My hands make me look so old and ancient. Myeloma has taken such a toll on me. But forward I march, one day at time, one infusion at a time, grateful for all the expert medical care I receive to keep myeloma suppressed. 

So thankful that I can tolerate Kyprolis 
as it is effectively attacking and targeting myeloma for me.
I've heard there are many patients that are not able to tolerate Kyprolis
for a variety of strong side effect issues

I think my good ol friend Dexamethasone is back to 
beating up myeloma too! I'll have my new stats after
my March 28th appointment. 


We've had heat then rain, then heat and rain. Just love the intense colors after the earth is refreshed after rain. I am very fortunate to feel well enough a few days a week, to be able to get outside and enjoy nature's beauty! 

When I feel up to it, I juice these fabulous tangerines. Delish! 

We're hoping when Mr Tortoise comes out of hibernation
he'll like this natural "salad" nature has suddenly grown in our garden! 




Thank you for reading and caring and being interested in my Myeloma story! 


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



22 comments:

  1. Use a hand/foot warmer before you have to have an IV inserted. They are pretty cheap, you just pinch or shake the small packet and it warms. Keep it on your hand for 15 minutes or so before the needle. Nurses used to always have at least three tries with me, after the warm, always on the first stick. Might be worth a try.
    I always read your blog. Admire your spirit.
    I was diagnosed with MM in 2007. In 2011 I became the owner of a horse, followed soon by a second one. Life long dream. They are my therapy. Being around them is essential, riding is magic.
    Jan

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    1. Hi Jan! Thanks for posting and letting me know you read my blog :) And thank you for the warming suggestion. My nurses have done that before, but now I will remind them to do this regularly! So happy to read your years of success! Go you, almost a 10 year survivor! And I sure smiled when I read about you being a horse lover too! I "joke" that all the fly sprays, mane and tail detanglers, etc, that I used over the years, "caused" Myeloma. Tell me about your horses! And I agree, they are our "therapy"!!! Thank you for posting Jan, and nice to meet you!

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  2. Hi Julie,
    Glad the Krypolis is working along with the dex. I read your comment about stopping the dex for a month a now back on. I'm pretty unsure I want to lower my dose of dex, but if he suggests it I'll give it a try. I just hate to have my numbers go up and feel like I'm starting back to get them down.
    I don't own a horse, but have had many pets over the years and it's always enjoyable, and they give so much to us. I agree, my pets that we've had to put to sleep have taught me a lot about death. I certainly don't want to linger if there's no hope.
    About getting IV's , the top of my hands haven't worked for IV's forever, so I get the IV either in my forearm or bottom side of wrist. Maybe they can start going in ,in a different area. .? Ask or see what the nurses say. They do this all day and I'm sure see tons of different scenarios.
    Glad you're feeling better, I go today to see my doctor. And to start round 5 of Velcade !!

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    1. Hi Christina, love your blog too! I'm amazed at your energy and things you can do. I am sooooo exhausted and fatigued, I barely do anything now :( And yes, our Pets have taught us invaluable lessons of life! Are you doing SubQ Velacade shots or IV? Yes, we will probably have to get more creative and try additional IV spots for me. Just want to avoid a permanent port at this time, if I can. I will check your blog for your Velcade update. How many years have you been battling MM? Thanks for checking in Christina! :)

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    1. Hi Priya! Thank you so much for checking in and letting me know you like my blog! Wow! India! (I clicked on your link and let Google lead me to your site). Thank you for letting me know where you are reading from! My current oncologist from India. She's wonderful and I love her! Such a small world. Thank you for posting, I really appreciate knowing where my readers are!

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  4. Julie, thank you for the sites and lovely pictures. You will probably have no problems with aBard Power Port inserted in your chest. There is just a tiny bump on your chest. I had mine for six and a half years - never a problem. It was removed a few months ago because blood could no longer be accessed from it (no problem with infusions), and M.D. Anderson has a rule that if blood can no longer be accessed the port must be removed. It was a wonderful friend for those years. When thw time comes that I must again have infusion chemo I will definitely have a port reinserted. Half an hour before the nurses would access it with a line I'd put Emla Cream over it (like frosting a cupcake)and never felt any pain.

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    1. Hi Lovey, thanks for checking in! Have you been battling myeloma for 6.5 years too? Wow, that's a looooooog time to have a port in! Congrats on all your success, and tell me more about your treatments and status. Thanks for the suggestion, and I will check in to that. I don't know how long I will be on Kyprolis. Nice to have a "pill" break from the Revlimid, but IV is a whole nother life. Ugh. Not sure which side effects I "prefer" lol. Thanks for posting Lovey and hoping you are feeling well! :)

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  5. Sheri from IdahoMarch 17, 2016

    Julie, I think a lot of us read everyone's blogs, but don't always post a comment. I never tire of hearing how others are coping and what they are going through. It is always a learning lesson for what I may experience when I have to try those drugs.
    And I know how you feel about your hands making you look old. I feel that way about my hands and face. I would like to blame it all on chemo, (not aging) and wonder how I would look at this age without 4 years of cancer treatments.

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    1. Hi Sheri, thanks for checking in! Yes, you're right. I read so many blogs and don't always leave a comment either. I wish blogs had a "like" button as FB does. Or a way we readers can just quickly acknowledge visiting and reading. I just never know which type of post my readers prefer. My mental musings or more factual and informational? After 6.5 years of the battling myeloma, I have more emotions about it now, as I still can't believe it lol. Me too, I wonder what I would be like in so many ways without 6, 7 years of cancer... Such a good point you make! Thanks for posting Sheri and I hope you are doing well! :)

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  6. Thanks for posting all the helpful links, and I like the Q & A's from the MMRF! Those tangerines look so delicious, and right on your property! Really glad to hear you are still tolerating Krypolis well, but sorry to read about all the "sticks" to your hands! EZ loved his port, and never had any trouble with it. Keep posting and thinking positive...Spring brings so much beauty doesn't it?!

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    1. Hi Linda, thanks for checking in! I am so happy EZ is doing so well and you 2 get out and about as you do. He's still on the Rev maint at 15mg? I will check your last post. Yes I love Spring, and all the fresh colors. One day at a time, and I am grateful for so much. Thanks for posting Linda! :)

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  7. Yes, Julie, Rev maintenance, but 10 mg, every day. No Dex. He also takes Valtrex every day. He got Shingles when he went off it, and that was no fun! Enjoy Springtime!

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  8. 10mg Rev maintenance is a great option. I did well on Rev 10mg for a few years. And thanks for the Shingles reminder... I will go take my pill now! Acyclovir gives me side effects at times, so I skip it. But I have heard of way too many of us myeloma patients getting Shingles, so thank you Linda for telling me about EZ, and for the great reminder! Happy Easter, and Happy Spring! xoxo

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  9. Hey Julie!! Just now catching up on your blog. Wow so much going on! I will speak for myself, but I like to hear all perspectives.......factual, medical, emotional, spiritual, inspiration, real life. I have said it all along, but will say it again........you are an amazing example of courage and positivity. Hopefully, the stars will align and I can see your face in the next month or so. Lots of love, Gay

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    1. Hi Gay! Thank you for being such a fan over the years and checking in as often as you do. And thank you for letting me know you enjoy all my various "types" of blog musings :) And thank you for your vote of confidence re my courage and positivity- most days, but not all days... when I feel lousy, life is challenging :( I will contact you asap! Thank you for your continuing friendship Gay, xoxo

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  10. Julie,
    I'm a volunteer for HiCaliber Horse Rescue. I just want to say you are an inspiration to us all. Thank you for supporting the rescue. I really did enjoy this post! Really informative.
    I will definitely be checking out your blog more often :)

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    1. Hi Tanaz! Awww so sweet of you to leave a comment that you checked out my blog. Horsey nuzzels of appreciation :) I love HCHR and wish I could visit and volunteer, but stupid myeloma prevents that, as you can see :( Say HI to everyone there that may know of me, and thank Leah for contacting me about naming "Jewels". I am so honored and appreciative of that! Poor sweet girl, let down by her humans :( Love all the rescue all of you do, saving so many lives! Thank you Tanaz!

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  11. Julie,
    Glad you are able to enjoy the outside so much!I know how much you enjoy doing it.Thanks for being so much
    of a inspiration to all of us!

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  12. Thank you Ron for always checking in and letting me know you appreciate my updates! :)

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  13. Thanks Julie - you made my day much better! My 50 yr old husband was just diagnosed on Valentine's Day with Multiple Myeloma and the reality of this cancer is just starting to sink in. My husband is a lot like you - always positive -and would rather laugh than cry! I'm so glad to read of your life with MM. It gives me strength! Thank you, Mary

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    1. Hi Mary, thank you for letting me know you enjoy my blog :) I'm so sorry your husband was just Dx with MM :( I was Dx at 50 too, so here I am 6+ years later and still kickn'!! :) Yes positivity certainly helps deal with stupid cancer. Read read read all the myeloma sites and you both will feel more empowered and know how to beat this stupid monster. I have a lot of MM sites linked to the right and bottom of this page, so please check those out. And don't hesitate emailing me with any questions you have Missy.Myeloma9@gmail.com
      Stay strong, find the best Drs and treatment center, and please stay in touch and let me know how he his! Thank you so much for your sweet post Mary!

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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 capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.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.