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

Saturday, August 13, 2016

Better, Battling Forward

Hello 8/13/16
Surprise surprise I am posting 3 days early, as so many have asked how I am after my most recent awful fever bug. I thought 13 would be a lovely date to update my status :))  Thank you everyone for caring about my crazy myeloma life as you do! Deeply appreciated.


As yucky as I still felt this past Monday, I pushed myself to show up for chemo. I had already missed the previous week, due to being so sick and feverish. I kept thinking about the irony of missing chemo to get better from this awful fever bug, yet myeloma was probably diggin in deeper without the chemo. I knew I'd better not miss another chemo week, if I could manage to go. So I went. I was quite surprised when my nurse took my temp and I still had a slight fever. Good thing I didn't check before I left home, as I probably would not have gone. Turns out that they don't really consider a fever a fever until it's over 100.3(?), and mine was 99.7, so they were ok with going forward with my treatment. I was somewhat dehydrated too, as who drinks enough when you feel so lousy with a fever?! And to top things off, it wasn't easy finding a good infusion vein, so I had several "sticks", but my expert nurses finally succeeded. Fortunately, good ol Dex steroids propped me up a bit, so I finally felt better by Tuesday. Not great, but ok! Whew, 2 more chemo treatments down.

But here I go again, trying to figure out how to live life while in continuous treatment. I'm supposed to have my chemo "make up week" this coming week, but I also have my 35th anniversary recognition at my college. Previously, (prior to getting sick) it would have been my chemo break week, so no problem attending 2 events without having to worry about post chemo/steroid side effects. But now, as a result of being sick, and missing a treatment week, I will only have had 2 weeks of Kyprolis, rather than the regular protocol of 3 this month. I know I should do my 3rd treatment week, but seriously, it's not possible to attend "normal" events close after treatments and with yucky crashing side effects. Who wants to show up to be honored and celebrated, feeling half dead and sick! Ugh, the conflicts of Treatments vs Living Life. I just can't let cancer can't steal all of my life, so I opted out of my chemo "make up week". Yes my numbers will probably Not be good this month, (due to my illness and minimal chemo), but these are the choices we have to make having incurable cancer, being continually treated. Icing on my cupcake, this 35th recognition will be my "last big hurrah" at my college, as I've finally reckoned with accepting that myeloma has stolen my career, and disability/retirement is just around the corner...


So I last left off several posts ago, that I made the decision to cut my hair. My poor little pony tail was thin and lifeless and I knew it was time. Ironically, my hair grew full and fast on Revlimid and Dex steroids, but I guess there's something about Kyprolis that thins the hair, so I knew it was time to accept a change was needed. I always had fun with my short sassy styles after my stem cell transplant in 2010, so it really wasn't a big deal to me to go short again. A a matter of fact, it's exactly 6 years ago that my hair really really thinned from Cytoxan and Melphalan. I cut my pony tail off June 2010, prior to admission to the hospital, and then I fully buzzed late September 2010.

So here's a fun Then and Now:
Pony tail chop June 2010

Pony tail chop July 2016
It's so thin and tiny,
it's hard to see me holding it here

2016- It was really really thin and tiny

June 2010 make over

July 2016 make over

2010 full buzz!

2016 mini buzz

So I'm enjoying my new hair, and great timing too, as it's really been hot this summer. Interesting, as my hair now is not as thin, and not falling out as much, and some waves are developing. It's even longer now than this pic from a month ago. I don't have a current one, as it wasn't long after this I bit the dust with my fever illness. I sure have gotten beyond my "vanity", as I'm posting goofy, not so flattering pics of me. Oh well, my life now.

Right before I got sick, my daughter went with her friend to a local "Clear the Shelter Day". She wasn't "planning" to adopt, but this little gem "picked" her, and now we have another amazing rescue that has joined our pack. Poor lil girl had been a stray on the streets, and not treated well either in her previous home, or while a stray, as she was thin and scared and timid and showed signs of abuse. The lack of love and consideration of living beings by humans, will always mystify and anger me...
She is safe with us now, and it's been a delight to watch her darling personality emerge as she learns to trust and be a happy puppy. We doggie-sit while our daughter is at work, so she's been with us a lot these past few weeks :))

So here's our new little family member: Nala!
 At the shelter, meet and greet! 
What a lil darling she is!

About a week later with us
Poor lil girl, didn't even know about "treats"

This was just after our daughter left for work
and little Nala climbed into her bag! 
How adorable is that!

And here she is being fully introduced to "ranch life"!
Anyone living with dogs and horses knows 
you can't keep dogs from snacking on horse poop!
No matter how we try, they sneak "apples" like 
humans do chocolate. Look it up! 


And lastly, remember the lil chickies we raised? 
They're almost full grown chickens now,
and happy happy in their "grown up" coop!! 


Thank you for reading and caring about my crazy story and life. Hope all is well with all my fellow patients and you're winning the myeloma battle and enjoying life in all ways you can. Truly, it's one day at time, one treatment at a time, one blood test result at a time. Life is so unpredictable, but so grateful to still be here! Cross your fingers for me, myeloma hasn't marched forward too much this month, and I'll post my labs when I have the results after 8/22.




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



6 comments:

  1. Hi Julie,

    Love hearing more upbeat tone in your blogging and your hair looks amazing, the style really suits you.
    I also just wanted to take the time to say thank you for all your support and positive comments you always leave on my blog.
    :) xx

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    1. Thank you Viv! I read your blog faithfully and look forward to all your updates about Jimmy, you and your darling family! Hoping all continues to be well for all of you and I will check out your new post asap! xoxo

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  2. Hello friend! I just now caught up on your August blog. I'm so sorry that STUPID cancer is stealing from your life and your hopes and dreams. You are entitled to vent.......you have been SO positive from day one, but it's perfectly normal to grieve the loss of normalcy and the life you wish you could live. I wish I would have seen this post sooner about the COC 35 years recognition............I would have come to see your face and be there for you. Lots of love and prayers for you. I miss you and think about you a lot!! LOVE. Gay

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    Replies
    1. Thank you so much for all your continued support and encouragement Gay! We will have a date soon, as soon as I can find my "helium" :) I will email the link to the 35th pictures! Hope you're out and about playing and enjoying your retirement, as it was meant to be!! xoxo

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  3. Michael EhlAugust 23, 2016

    Hi Julie,
    I recently discovered your blog. It helps me a lot to go through my own myeloma-battle. Thanks a lot for the insight into your life and your struggle against the cells we didn't invite and that changed our life completely - unasked...
    I got my diagnosis in October 2014, the day before my 51st birthday, during holiday in Germany from my work in Egypt, IgG Kappa, 2 cm hole in my right upper arm bone already, some weakness in one of my thoracic vertebra, left Egypt for Germany, operation, radiotherapy, went through VCD-Chemo in the beginning of 2015, autologous stem transplant in April 2015, taking Revlimid/Dex since November 2015, "perfect" results, better than anything else until now. But the numbers that crushed in the beginning are going down more slowly since last two rounds, as slow as I fight my way up our staircase because of the respiratory problems I have with Rev/Dex. Fortunately we are now building our new house, bungalow, one storey only...
    I hope my english is okay... Didn't try to explain my medical details in english yet ;-)
    Always looking forward to your next entry! Cheers, Michael.

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    Replies
    1. Wow Michael! Thank you so much for taking the time to tell me your story and that you follow my blog! Means so much to me to know who's out there reading my life :) Your English is perfect and I am thrilled to know you are reading from across the globe! Sorry MM hit you as it did. We are similar that way, as I was Dx right after my 50th BD. I'm IgA and you're IgG. So sorry for all the bone issues you have. IgA hits me in the compromised immune system and extreme fatigue and low low blood counts. Sounds like your treatments are successful and so glad you are able to continue working, enjoying life and building a new house! Start a blog! All our stories are so important and I would love to see your international pictures! Thank you Michael for posting and saying hello! :)

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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.