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

Friday, February 26, 2016

Insidious Awful Worthless Germs

Seriously unbelievable! I am having the hardest time feeling better. Is it my WBCs that are not able to fight my fight for me? Is it something more insidious, deeper in my core that is really SICK sick. Sick beyond the "normal" sick? Sure, I've been sick since I've had Myeloma, but I can't recall the awfulness I feel this time. I've always recovered faster. This bug is sucking the life out of me. Taking forever to leave. I'm going to name it "THE CHRONIC FEVER FATIGUE FOREVER FLU"!

You know how in movies and books you're taken back to that incipient moment of what happened. That retrospective explanation that solves the why. I just want to know Who breathed on me, Touched me, Contaminated me! When did I pick this monster up? I wish with all my wishes, that I could look through the magical back in time telescope and see where I picked this thing up. I'm so darn careful about cross contamination, it just baffles me I could get this sick.

It started with the typical achiness of a fever and just continued to get worse from there. But it wasn't a horrible sinus or respiratory bug. It's manifested in a super high fever for days. Yes days and days and days and days of fever. Finally yes I've gotten better. I'm no longer stuck at 103, 102, 101. I don't ache as much. But I have this weird malaise. Just blah. Just no energy. No helium. Just achy all over. I find myself wanting to take my evil best friend Dexamethasone, just to see if that would make me feel better. Temporarily pump me up. Maybe this is the mystery? Maybe going off Dex has slowed my immune system to sluggish blah? I have my monthly oncology appointment on Monday, so I will ask.

In the meantime, I drag. I drag myself to do everything I try to do. I don't have the fire I used to. What is wrong with me. One day slips into another. I feel downright yucky. I feel no purpose. Just trying to get from one day to the next, to hopefully feel better the next. I can't get comfortable in my own skin. If Jim wasn't so sick too, I would think this was psychological. Yes we are slowly a little better each day. Just a little, not much, just a little bit each day. His settled more in his chest then me. He's on antibiotics, I'm not. Thankfully our chest xrays showed NO pneumonia. I am grateful. Very grateful! But I still feel awful. No pep. No motivation. One day falls into another. I question my life. My purpose. My reason here. Not feeling well makes one feel so awful. In so many ways.
I used to have so many events, goals, plans, challenges, etc to look forward to each day. Something to achieve daily and make me feel accomplished. That some-thing important that moves you forward. Some-thing that makes your body and mind feel good, productive, pleasant, happy, positive. You feel that good-tired feeling at the end of the day of doing some-thing that mattered. That, wow I can't wait to sit and relax feeling because your body "earned it" feeling. That delicious accomplished tired feeling, after you've lived a normal day, and you look forward to the next day's adventures and challenges. Not me, not now.

"Normal" people plan things. Normal people plan because they know they can do their plan. Plans are meant to be accomplished. I was planning to plan little things for my chemo break days. Little things. Drive my Bug. Groom a Horse. Take a walk in Nature. Go to lunch with friends. Maybe even try to visit my office one day. I was hoping we could begin to do a few things. Not much, just a few small fun things here and there. Now, I don't even feel like planning. What's the point. I don't feel well. Even if I plan, my body won't let me participate. I don't want to go anywhere. I can't get comfortable. My body hurts. No point in planning...


My days seem so meaningless now. Just existing. Just trying to get to something that makes me feel ok. Walk outside. No, it doesn't feel good like it used to. Pet the doggies. No, that's an effort. Pet the horses. No, that's an effort too. Sounds hurt my ears. Things give me headaches. Water, not refreshing. Juice, doesn't taste good. Toast, makes me feel stuffed. Soup, yuk, not satisfying. Nothing appeals or satisfies. I try to go outside and sit in the sun. It stings. The neighbor's gardener is blowing incessantly. It hurts my head. Makes my chest feel heavy. I feel sabotaged. I long for that sense of luxuriating on a lounge chair, feeling the sun's rays permeate my being, regenerating my battery. No, it doesn't feel good today, the day before or before. My skin hurts. My body feels restless. Achy. Discontent in any position. I take my temperature. Some days it's 99+. Some days 98+. Haven't seen a normal 98.6 since Feb 14. I know I am better. It's not in the 100's. I'm grateful for that.

This is not me. Not having the energy to do. I'm the eternal optimist. I'm supposed to be seeing the glass always half full. I've been thinking about all this, each day for weeks. I've been sick for 2 weeks now. What is my life now. What is my purpose. What is this getting up, to then get to the couch. To try and accomplish a few necessary chores saps me. To then flop back on the couch. That doesn't even feel good. My hindquarters are sore from sitting. From sleeping. NO I AM NOT DEPRESSED. This is physical. My body is not allowing me to feel good. I am so tired. I have a weird ache all over. I don't have an appetite, but I force myself to eat and drink. It doesn't refresh me. It doesn't make me feel good. It weights me down.

I feel terrible writing like this. There are so many suffering on such a larger scale than me. All over the world. There's so much sickness and suffering. Humans and animals. Cancer patients are dying every day. I follow a lot of myeloma discussion groups online. There's a lot of myeloma suffering out there. Myeloma is so insidious, so vicious. Treatments have stopped working suddenly for so many. Some have little hope. Treatments too invasive and organ-devastating, devour lives. Options have run out. I've been really sick, but at least my chemo treatments are having an impact, keeping my myeloma numbers stable. Years ago, like so many in the myeloma world, Pat Killingsworth was my first go to guy when I was diagnosed. He recently lost his battle. I, like everyone else, overwhelmed and shocked. Devastated he's gone. He blogged for us everyday. Sharing his life, his story, his treatments, his journey. Just devastated to read what happened to him. If you have myeloma, you know Pat. If you don't, please get to know him. His legacy will live on forever. What an amazing, insightful, intelligent man. Such a deep loss. The myeloma community has lost a "giant" and I am whining here about my fever flu awfulness. I am still here. He and so many others are not.

I'm sad I feel so awful. Sad for me, sad for others. I try so many things to make myself feel better. I compel myself. The weather has been spectacular here. That generally picks me up, invigorates me. My family, my animals usually invigorate me. Spring has come early. Beautiful fresh green everywhere, new colors of 2016. I want to feel good! But everything feels like a painful chore. I cancel plans made weeks ago. We just don't feel well. It's insidious. I don't understand why I am sick all the time. Cancer sick. Chemo sick. Flu sick. Sick of being sick.


But I push forward. I know moving helps. I go outside. I try to do some horse chores. I'm exhausted. I hurt. I feel like I'm going to pass out. I walk in my tack room. I'm sad. I waited too long. My life is passing me by. I'm not feeling sorry for myself. I'm a realist. My body failed me. I don't have the helium to do what I've dreamed of, waited too long for. The reality of being sick for over 6 years hits me. 6 years, more than 6 years, I've been sick. I haven't felt good for over 6 years. Tomorrow's another day I tell myself. I will get better. This is temporary. It has to be... It just has to be...

 My happy place ~
So many beautiful memories and miles

Can it really be? I've had this saddle for 35 years. 
So many happy miles. Dusty now, from lack of use...

It's a beautiful day outside. It can't be possible that I can feel bad much longer. It just can't. Monday starts chemo again. I missed 2 treatments this month due to being sick. I wonder how that has affected my status. My IgA was up last labs. Did I mention that? My IgA was up more than 100 points. I need to take monthly blood tests. I can't stand the idea of going over to the lab. So much sickness everywhere at all the clinics and hospitals. Sickness everywhere. I hate germs. I hate sickness. I don't have patience for it. What is their purpose. I hate suffering. I don't understand everyone's suffering. There's too much sickness suffering in the world... Sickness is suffocating. Ok, Enough...

Ok, so I will end with a couple funny stories. There's always that fine line between tragedy and humor, at least in my life. Last week, at the beginning of being so sick, Alissa was here helping us out. At some point she realized a pigeon had fallen down our chimney. We have a lot of pigeons Jim feeds regularly, so they often roost on the roof, but we've never had one visit us inside. I think the pigeon fell down the chimney late afternoon, so we decided to leave it there over night, hoping it might flutter back up by morning. I felt so sick, but I knew I had to help the poor guy. As sick as I felt, it was funny. It made us laugh. The irony of a pigeon falling down our chimney, especially when we felt so awful was just funny. I didn't need one more challenge. But it was funny. A wild pigeon randomly roosting (by mistake) in our fireplace. I'm not sure how in my feverish state I managed to gently grab the pigeon without much fuss, and hold on to him, but I did, and released him outside before I collapsed from laughing and physical exhaustion. 


A few days after the pigeon incident, Jim accidentally let one of the rescued baby sparrows out. For those that don't remember I rescued and raised a single female baby sparrow in 2013 and then in 2014, three more newborn babies fell from the nest. Not my intention to have a household of sparrows, but I didn't have a choice. Anyway, "First Birdie" gets to fly around our house periodically, as she goes right back in her cage. The "Triplets" are another story. They remain in their huge aviary, happy but way too "busy". Well Jim accidentally let one of the females out the other day, and she's not "trained" to fly back into her cage like "First Birdie". Long story short, while Jim and I are feeling feverish and awful, we're trying all kinds of gymnastics to catch the little birdie. She stays close by us and her buddies, but we can't get her back in the aviary without letting the others out. Can you imagine the comedy. First the pigeon in the fireplace last week, now a sparrow lose in the house. Fortunately, she finally flew into our food pantry late in the evening and I secured her there, trying to figure out how I was going to actually capture her and get her back in the aviary. Looking back, as awful as I felt, it was pretty hilarious. I'm climbing around the pantry, Jim finally slipping a step stool ladder in there for me as "girl birdie" flits here and there, swooping in my face, taunting me that I can't catch her. She finally exhausted herself and I managed to catch her behind the condiments and return her squawking and pecking to her aviary. Truly, my life is that fine line of comedy and tragedy. And that's only 2 recent examples our crazy adventures in Myelomaville.

First Birdie trying to cheer me up ~
What a lovely view of me... NOT :( but Birdie's very cute here!




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


8 comments:

  1. Hi Julie,
    I'm Wendy from Maine and have posted here before. Enjoy your posts so much, but am sad that you're not feeling well. My husband has MM, hence the connection.
    Your birdie story made me laugh a lot. Last year, we had a bat fly into our house, no idea how. I was too naive to realize how dangerous it was until my husband informed
    me. We got him out after a lot of laughing and screaming, mostly me.

    Feel better.

    Warm Regards,
    Wendy



    ReplyDelete
    Replies
    1. Hi Wendy! Thank you so much for letting me know you enjoy my posts. I write spontaneously and never know who's reading, so I really appreciate knowing you follow my blog! Hoping your hubby is doing ok, and glad the bat got out and no one was hurt. Yes, all these funny animal "calamities" are certainly good for a laugh! Take care Wendy, and thank you again for letting me know you enjoy my blog! xoxo

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  2. Hey Julie, it takes longer to recover from EVERYTHING
    when you have myeloma. Great news that your fever broke. Just keep on and drinking what you can even if you don't feel like it and resting. Go outside in the sun even if you don't feel like it, as well. Do you take vitamin D? If you are not getting out enough, you are certainly deficient, and that can cause many problems. I'm sure you will be better soon. If you had the flu or a virus like the flu it can take a few weeks to feel better. Recovering from a prolonged fever can take awhile. Give yourself some time. I am the same way when I am sick....super impatient!

    I love your blog. Keep writing.....

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    Replies
    1. Hi Ellen! Thank you so much for posting and letting me know you follow my blog and enjoy my silly posts. You are so right about everything you say above. I hate being sick beyond cancer sick, and do get impatient and just want to feel well. I did slack off with hydration and my Vitamins, so again, you are so right. They had a hard time finding a vein for me yesterday for chemo, as I wasn't my usual well hydrated self. Thank you so much Ellen for stopping by and letting me know you enjoy my posts! I really appreciate hearing from my readers! xoxo

      Delete
  3. Theresa WashburnFebruary 28, 2016

    WOW Julie, my long time friend so moved by your tone, sadness yet irresistible humor and the birds. REALLY? Tyler had a duck in the bathroom tub for 3 days before I noticed it and understood why the cat wanted in his room. Anyhow...just crawling out of your skin, looking forward right now is only 10 min. away instead of planning a week away. My friend, this is not you. Julie your spirits need to be lifted and your saying "no shit" how? Start by taking a deep breath of spring air outside, pick a flower, look around you. Ok so now you've had enough and your body hurts. At least for that moment Julie you were busy focusing on something else other than your body and illness. Don't give up my friend. Of course, I don't truly understand or feel what you are going through but maybe it's time to slow down and smell the roses. Really miss you and love you my friend we've know each other 25+ yrs. now. I guess its hard for me to read the words you wrote but...just know it's ok. You are an amazing woman that has been through the ringer and back yet you still share the crappiest days of your life and end with a laugh and not a tear. You are not in the rat race anymore, enjoy that. Slow down and set one or two goals (if we must use that word) a day for yourself that make you feel at ease and give you peace. Give yourself time to heal, give time for patience, give time for peace and don't give up. Take care and I'll check back in a few days.

    ReplyDelete
    Replies
    1. Hi sweet Theresa! So happy to know you follow my blog. Yes we've had a great friendship for so many many years, and I just wish I felt better to be able to get together. Hopefully, when I recover from this stupid bug, we can go for a Jamba or something refreshing in the sun! I hope your family is doing well, and we can catch up via email too. Thank you so much for checking in, and letting me know you read my blog! xoxo

      Delete
  4. Julie,Sorry you are not feeling better! I am sure flu
    and colds are much worse for you.I know you will be up
    and enjoying the weather and life like always soon.Thanks for sharing your feelings!

    ReplyDelete
    Replies
    1. Hi Ron, thanks for being so loyal and checking in. Yes you are correct, my immune system is so weak, getting better from anything takes double, triple time. Hoping all is well with you and your family, and you will be able to enjoy another trip soon! Thank you Ron.

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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.