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

Sunday, November 2, 2014

Incurable?! Terminal?! Whaaaatt?? But you look so.. good...

Well I've been delaying writing this post, as my news is not great. Not horrible, but not good. Myeloma is still winning as my M-Protein/M-Spike is up again and so is my IgA, etc. (Stats later)

 I hate you Myeloma, 
but this depiction strikes me as rather cute

And dang it! My immune system (White Blood Count and ANC, etc) is down again. Scary low. My oncologist spoke of Neupogen shots if my Whites/ANC continue to plummet, and especially if we advance to 15mg Revlimid.

How do all my myeloma cancer pals travel as they do and make contact with the public like they do? Some have said there's not a minute to waste, so they go wherever they want, and deal with the consequences afterwards. I read blogs about myeloma people's travels and just cringe at where they go (nationally and internationally) and then read they are later hospitalized for flu, pneumonia, viruses, etc. I am happy to report that my isolationist, bubblized lifestyle is working... and (knock on wood), I haven't been really sick-sick (virus or bacterial type) for a while! I'm also happy to report that I haven't seen the inside of a hospital since my Auto-SCT process! So I must be doing something right :)  I know I am missing out, and limiting my already limited life as a result of not traveling, but then again... I just don't have the energy or stamina to do the things I would most want to do...

One day... I will do this again!
True enough, I hardly go anywhere... I don't shake hands at all. I don't hug much. Actually, I don't make much physical contact with anyone really (unless I spray them down with bleach and alcohol first! j/k!). I socialize at a distance (on the few days I leave the house) and give only "air hugs". I still actually make it into my office several days a week. Everyone generally, is really respectful of my situation... except for those that don't understand my cancer type (it's invisible to the outsider). Those that are just meeting me for the first time think I'm kidding, laugh and make a joke or two, and still try to shake hands or hug me. And then there are those that think I am just being crazy OCD clean.

Case in point the last few months. I've had a variety of weddings to attend, family gatherings, non-profit events, a VW car show, special social events at my college, etc. When the topic comes up, which invariably it ALWAYS does as I do NOT shake hands, hug, kiss, get close, etc, people laugh and say, "oh Julie, don't be so "frikn" paranoid". You look so good! How can you have cancer? Your energy level is so amazing. You do so many things. Just look at your hair. You look so good" blah blah blah!!! Well thank you for your sweet compliments everyone ... but I really am a sickie.  I just dust off my cowgirl boots, pump myself up mentally, smile a lot AND PLAN ALL MY SOCIAL EVENTS AROUND POWERFUL STEROIDS CALLED DEXAMETHASONE!!! And I DON'T EAT before I go anywhere... just in case...

Hello people! If only you saw me when I get up... without a make-up, with un-glued, un-fluffed hair, with dark circles under my eyes (lol just ask Jim). And just imagine if you really knew all the time I spend in the BATHROOM! Not to mention all my daily symptoms and medication side-effects. Then you would understand I really do have cancer. Perhaps "invisible to you, but all too "visible" to me. And by the way, I am not exaggerating: Myeloma really is incurable, and our clocks really are ticking rather fast, and the word "terminal" is relevant. I say these words over and over and over to make sure I am fully in touch with my situation, impressing the point to myself that I must "get my show on the road"... now!!! Did you know... I have already out-lived my statistics...

Been there, done that, a very long time ago... want to do this again!
So in light of all of this... (and I said to myself I wasn't going to be so wordy on my posts anymore, as I don't know who's reading, who cares, or if I am too boring, too deep, too blunt, too repetitive, too philosophical, not interesting to read anymore, or just too dang wordy)... I was just going to post some beautiful pictures (to me, that is) that represent (some, not all) places, ideas, dreams, goals I would like to see, do, accomplish before I die. There, I said it! Before I die! Tick, tick, tick, tick tock!!!

I've always dreamed of having pasture land!
Can you just imagine riding/driving down this road
Snow, sun, pasture, horses, fresh air... limitless views
And I always wanted a Red Barn!
Cute, small, in/out access and I just love white fencing like this


I don't know when, how or where, but I just want to swim in beautiful, crystal clear waters!
For those of you that swim in pools or oceans, travel to local or exotic beaches and take for granted doing so... I can't recall the last time I dove into a pool, or fully immersed myself in the ocean.

This pic reminds me of when I was stung by a "Man o War" on a Maui beach! 
Very-pre-myeloma days. Maybe that "caused" Myeloma?!

Maybe one day I will post a pic of me in one of those chairs...

Happy Trails everyone! Hello November!

I lost an incredibly beautiful, vibrant, myeloma-sister a week ago. We were diagnosed just days apart and had very similar myeloma treatments. My head is stunned, my heart broken for her and her family, and I am just so devastated to hear of her loss and myeloma's affect on her...
I will link her blog here when her family let's me know it's ok, after they post her final blog entry...
I have lost more than 6 myeloma peers since my Dec 30, 2009 diagnosis. We were all diagnosed around the same time, and have had most of the same treatments... 


And finally, my recent Stats:

IgA = 1200 (officially 3x the high end of normal) 70-400 scale

M-Protein, M-Spike = .94 (NO cancer = 0 zero)

ANC = 1.2 scary!  (1.8 to 7.7 scale) Cooties stay away!!!

WBC = 2.6  scary low immune system (4 - 11 scale)- Hazmat suit time!


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



16 comments:

  1. Julie, please keep writing. Like Keith said, I read your posts shortly after you post them. It is hard to know what to say when people ask how I am doing. I usually say "great" or "good!" because I feel pretty good, my hair has grown back and I don't look sick. But I am doing Velcade 3x a month, along with dex. And now 3 years post diagnosis with an incurable disease that people don't understand. So they don't know the shadow that is always lurking behind me. I try not to think about it all the time, but the truth is, I most likely won't live long enough to retire with my husband into our golden years. But, I also don't want to walk around with a sign that says "I have cancer" just to remind everyone. So I keep smiling, say I'm in treatment and doing well. And I keep dreaming of those beautiful places I want to travel to, and so should you. I hope we both have our dreams come true!

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    1. Hi Sheri, thank you so much for your spot on post representing "us". Do you have a blog I can follow? It's amazing how many of "us" are out there and are experiencing so many of the same things physically and psychologically! Yes, you stated it perfectly- with our hair back and us not "looking sick" and not wanting this MM monster to consume us daily, people don't "get it". And like you said, we don't want to dwell on our shortened clocks... but we know our realities... Please let me know if you have a blog Sheri, I would like to stay in contact with you and read of your treatments and dreams too :) Thank you for your insightful and inspiring comments. Julie

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  2. Julie, the news is not great, but you are and I am like a fucking stalker checking for updates good ,bad, in between or funny. THey are usually funny in your Julie "no filter" way. Keep writing, sharing, letting people like me that take for granted that I can get out everyday and not have to worry.. You change my life everyday in ways that you don't know. When I have fear, I think of you... When I say, I'll do that next Halloween, I think about you.. Live my life now!! Seriously, the more you post, I will keep reading and remembering how much I need to get off my ass and LIVE!!!! You are the reason I have bird shit all along my back fence now!! I bought a bird feeder and now we have about 20 birds that basically live in my back yard and I would have NEVER appreciated it before your "birdie saving".... I love to see them out there every morning... Makes me thing about you daily.. I fucking love you and I miss you... Let's get drunk, Love you Madonna

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    1. I love you Madonna! And I so appreciate you checking in and letting me know I still make a difference in your life! Let's have another "NO FILTER" meet up! hahaaa just love that saying and concept! Live now, do it now, don't wait... time is marching forward for all of us! And thank you for feeding my Birdie's relatives! Bird Power on!!! Did you see my Birdie blog too? And I agree, time to get "drunk" on life! Spiked Jamba asap! Thank you for checking in and letting me know I can still psychologically "kick your asset"! love you, miss you, more! Julie :)

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  3. Julie,Keep writing.Alot of us are reading.Alot more than you know.Your extra
    effort is appreciated.I still think your positive,caring outlook on life will prevail.Know many are praying and thinking positive thoughts for you.
    Ron

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    1. Thank you so much for checking in Ron and letting me know my posts are meaningful. It's an interesting thing to write so publicly and not know who is reading about my life. Often, I think I may put too much out there, but then again, I hope/know that my posts can help others as much as it helps me to write. Hoping all is great in your life, and your family is doing wonderful. I appreciate the positive thoughts and prayers! Julie

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  4. Hi Julie,

    I am sorry to read all your counts etc have come down again and up when they shouldn't. I can only imagine how you must feel, losing another friend.

    I love reading your blog. You are such an inspiration to me. My husband was diagnosed with Multiple Myeloma in April. They have stopped chemo now because it doesn't seem to be working anymore and we are hoping that he will be able to have a stem cell transplant and then some more chemo afterwards as Prof says there is a good chance his body will react better to the chemo post stem cell transplant. His M Spike is sitting on 19.

    Well enough about us. Stay positive and please keep blogging
    Vivienne
    xx

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    1. Hi Vivienne! Thank you so much for posting and letting me know you enjoy my blog posts. Means a lot to me to know there are people out there reading, appreciating and enjoying my musings. I am so sorry to hear of your husband's battle and I encourage him to do that SCT soon! I really do feel mine saved my life. There are so many new chemos/treatments out now, so hoping his Drs get going on this for him. Do you know what "type" of myeloma he has? IgG? IgA? Please let me know if you and/or your husband have a blog, so we can stay in touch. Best of luck to your hubby Vivienne, and please keep me updated on his status. Thank you, Julie

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  5. Hi Julie,
    This my 1st post ever so bare with me. I was diagnosis in Dec. 2008. I take Revlimid and Deximethizone. I have harvested my stem cells and am in remission as of now. I was like you at first, told everyone of my illness and wouldn't go out to have fun. I wouldn't shake hands or hug at church. I wasted 2 years of my numbered years. Now I live as I did before I knew. Well I get tired faster and I have more aches and pains but I keep keep'in on. I have a new employer and I don't want them to know. I want to be treated like everyone else and its working. I'm sure I will have to let them know sooner or later. But I'll cross that bridge then. The only thing I have done as a bucket list was to go deep sea fishing and had a blast. I have to say that I'm not worried or scared of what's to happen. That might piss a lot of people off. Like I said when I opened that I never talked about my condition outside of my family and this may be my only time talking about it. Something you said made me want to write. OH, one more thing. I don't know if horse poop causes cancer but it heals chapped lips. Well it doesn't heal them but it keeps you from licking them. Ha Ha

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    1. Hi Anonymous, thank you so much for your comment. I feel honored I am your "first post ever" ! :) We are a year apart on diagnosis, and I am thrilled to hear how well you are doing and feeling. I agree that we cannot let this myeloma-monster prevent us from living and doing things we want to do (while we can). I am just very careful to not contaminate myself, and like you, when I feel ok, I do things that are meaningful to me. Congrats on your new job and your deep sea fishing bucket list trip! Keep it up! I admire you for all your strength mentally and physically. Sounds like you have much more energy than me, so keep it up, and please stay in touch and let me know how you are doing. Thank you, Julie

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  6. Hi Julie. You are my inspiration. I know what it feels like to have people not understand when you don't feel well, but I'm not about to have a scarlet letter tattooed on me. It seems I cannot really predict how I will feel tomorrow (and sometimes have trouble with today). I want to travel, now that I've retired (a bit early, but none too soon), but then pay the consequences. I am still struggling to be positive, glad to celebrate birthdays and time with those I hold dear, and truly "live" while I can.

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    1. Hi Sandra, o boy did you say it ALL! If I wind up crazy enough on a Dex day lol... I like your idea of a "scarlet letter "M" hahahaa! with an explanation of this stupid, invisible cancer! So true about wanting to live, to feel well to travel, be with family and friends, be positive... but alas there is so much unpredictability of our symptoms and circumstances! Do you have a blog I can follow? Thank you so much for your spot on post Sandra! Julie

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  7. Hi Julie,
    I usually follow Vivienne’s blog about her husband, Jimmy, and saw the post that you made there.
    Just by reading that one post I realised what a brave, inspiring, STRONG person you are! You are such an awesome person. I also went through the whole cancer journey and say thank you every day for the wonderful people in my life that carried me when I could not go it alone.
    I would just like to say thank you for your straightforward writing on your blog as you just reminded me that life is just that short and we should live it to the fullest… at all times!!!

    Cheryl (South African Survivor)

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    1. Hi Cheryl! Thank you so much for your sweet words of support! Wow! I just love the international connection between us and Vivienne! But how tragic that it's stupid cancer that brings us together... Congrats on being a survivor! Do you have a blog I can follow? Yes, we must embrace everyday, every moment and LIVE! All this is so surreal to me, and I thank you for appreciating my writings and also reiterating we must LIVE life to the fullest all the time! Thank you, Julie :)

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  8. Hi Julie,
    I do not have a blog as of yet, but am seriously considering starting 1. Will let you know when it happens...
    Are you involved with the ACA there?
    Cheryl xxx

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    1. Keep me updated Cheryl! :) Julie

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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.