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Tuesday, December 6, 2016

Stop with the Challenges Myeloma! Enough is Enough!

12.6.16

And I thought I would have NOTHING "significant" to write about for this "on the "6's" post. Ha! Remember I laughed on my last post that I often muse that "not much could happen between the "6's" to post about"? WELL WAS I WRONG AGAIN! Seriously wrong! Myeloma NEVER gives me a break.

I was so challenged on 12.6.16, that originally this post was just a mini Hello and Thank You to my loyal followers for reading and checking in on the "6's". I could barely type, sit or move, to post my absurd story details, so I just gave you my headlines.

I am a bit better today, still quite challenged, but able to tell my torrid tale. No where near healed, physically or mentally, as this bug and injury (I will detail below), has really taken a huge toll on me. Disability on multiple levels is so very humbling...

Every month becomes face-first rude reality of my incurable status. I'm just so sick of being sick all the time. So sick of knowing I will be "sick" each week, no matter what, whether from the chemo meds, the myeloma side effects, the med crashes. I'm just so so burned out. Strong and brave is not my middle name this week... 7 years of challenges is really doing me in. Ok, on to the story... 

Sadly my immune system stats are not good. My WBCs, RBCs, ANC, etc, are quite below normal. My immune system is weak and fragile, and the evil head-cold cooties snuck their way in. I suspect it was my Dad on Thanksgiving, who didn't know he was incubating a sore throat, head-cold. So a week later, late Thursday night Dec 1, I woke up in the middle of the night with a raging sore throat and I just knew I was headed in the wrong direction. Friday, Saturday, Sunday was the sore throat pain, overall malaise, yucky head cold yuck. Yep, I'm a sickie... Cancel, Cancel, Cancel went all the plans..
Then Monday morning, when I woke up, I felt a tad better, as I un-dramatically got out of bed. You know the morning routine, head for the bathroom, etc. Well I felt that first morning cough coming on, so I slightly leaned on my bathroom counter, crossed my left leg over my right so I wouldn't pee in my pants lol, and I coughed, what I presumed would be an uneventful cough. Then Snap, Crackle Pop! IT HAPPENED!!

A searing, immobilizing, burning, ripping, cracking, tearing, paralyzing pain seized my lower back. Brought me to the floor. I absolutely couldn't believe what just happened! I "crawled" back to my bed, hoping I could lay flat and stretch the nerves and muscles back to where they belonged, and start my day all over again. I laid there for some time, processing what just happened, and hoped it would just go away. After about 30 minutes, I slowly, very slowly rolled to my side to get out of bed, and zing, boom, bang, the pain was so incredibly intense I really thought I had broken my spine. I HAVE NEVER EVER EVER FELT PAIN THIS INTENSE. I knew, I REALLY knew, I was messed up. Tears flowing, I got up very gingerly, tried to do my bathroom routine, but was just so immobilized by excruciating pain. Crazy, tight, pinching, aching, searing, burning, tense, you can't move- PAIN!

I'm thinking this is what my back would have looked like on a scan-
and what the angry fire I felt, burning, seizing my lower left side, would look like! 


NEVER IN MY LIFE HAVE I EVER EXPERIENCED ANYTHING LIKE THIS DISABLING IMMOBILIZING PAIN. I've fallen and been bucked off horses. Had ski injuries, bike injuries, tennis injuries, etc. I've had 2 children with long labors, with eventual C-sections, and have had other physical (sports) injuries over years, and even had quite a bit of "pulled, pinched" muscles in my back over the years. But This, This was different. This pain intensity was off the chart!

This was Monday Dec 15. The pain brought me to the floor, nothing helped, no one could help. I cried out for mercy and relief like I've never done before. My family begged me to go to ER, but I refused. I couldn't bear the thought of dealing with that process, besides I was basically crawling about my house, or immobilized on the couch, chair or bed. I was truly totally dysfunctional. I alternated Heat and Ice. I lost count of how many fast-melt Tylenols and Advils I downed. I tried to sit, I tried to lay flat, I tried to walk, I tried to crawl, I tried NOT to sneeze or cough. I tried NOT to think "this was the beginning of end". I truly wondered if this is how Myeloma patients begin down that dark, dark road of damaged broken bones. I was in a very painful, dark place, physically and mentally. My family tried to help, they begged me to get help. Truly, I was not capable of getting in a vehicle and going to ER. I said the only way I would seek medical advice would be if a Dr made a house call with an Xray machine.
I chewed more fast-melts.

And then, around 7:00pm, I had a thought: DEXAMETHASONE, my beloved, hated steroid friend is an ANTI-INFLAMMATORY! Omg, who cares if it's now night time, and I usually take Dex in the mornings. Who cares if I can't sleep, IF I CAN GET RELIEF, and send those nervy displaced nerves back to where they belong and Dex can "fix" this nightmare! Omg, Hallelujah! Helllllloooo Dex, I'm coming for you! Do your thing powerful steroids, like you've never done before! 


I was due to take my regular dose of Dex this week anyway, but I never take it at night, so that speaks to how incredibly desperate I was. With my new Pomalyst/Dex routine, I am taking 40mg of Dex per week, so I knew I could split the dose up, to get the most "mileage" of it's anti-inflammatory powers! Down the hatch went the 3 little green 4mg pills. Figured I would do 12mg (Mon night) to get those nervy nerves moving back to where they belong, then follow with 8mg Tues morning (to get back to the normal morning routine), then do another 12mg Wed morning, and the final 8mg dose of the total 40mg on Thurs morning. Creative Dex dosing math, right?!

I went to bed around 10:30pm, after doing more Ben-Gay, Heat, Ice, etc, and begging the "Universe" for relief, like I've never begged before. Well hours later, somewhere in the middle of Mon night, early Tues morning I awoke feeling the loosening of my back nerves in the middle of night! I dared not think it was actually true. I adjusted myself ever so carefully again, and went back to sleep. I was shocked when I woke up around 9:30am to some RELIEF and some MOBILITY Tuesday morning! I was so incredibly shocked at the RELIEF, I feared moving, feared doing anything. Could this be? Is this for real? Am I dreaming? I feared doing anything that might change my reality. But I slowly, carefully headed straight for the kitchen, for those "magical" next dose Dex pills, and my sudden realization that Tuesday was livable!! Shock, utter shock, flabbergasted, amazed, astonished, just cannot adequately describe my Relief and Disbelief of how quick Dexamethasone steroids got in there and UN-inflamed my disaster.

I decided to take a selfie Tuesday morning, showing how "awful" I looked after this horrendous Monday ordeal. Didn't know if I would have the "nerve" to post it (no make up indeed!), as I really am quite vain about my declining appearance. But everyone is always so kind, saying, "but wow Julie, you look so good, you don't look like you're sick or have cancer!" Well yea, I NEVER leave my house without spiffing up. But Monday's pain was so incredibly awful, I saw this horrendous pain reflected in the mirror every time I crawled to the bathroom... My family knew I was really really bad, as I looked as awful as I felt on Monday, and they told me so. That Monday selfie (to externally illustrate my extreme pain), would never happen. I couldn't take it or post it. I was suffering waay too much.

But here's me being "brave" and posting my "morning after" raw selfie, after steroids to the rescue, before I carefully took a warm, luxurious shower! Yippeee! I'm vertical! I can stand up without passing out from excruciating pain!

Hello, from Julie the cancer patient, with no patience for pain

So here it is, late Wed Dec 7. I have been walking on egg shells, SCARED TO DEATH what's coming for me next. Are the steroids just a fake prop-up? Have they only reduced the inflammation temporarily? Will my back seize again when their magical powers wane and wear off Friday, Saturday, Sunday? What kind of awful crash am I in for, from not only the Dex, but my pinched nerves? I'm scared... I have my last 8mg Dex dose Thurs morning, to complete the weekly 40mg, that I "creatively" stretched out for 4 days. I've been so cautious, so careful to walk carefully, bend carefully, cough carefully in a balanced way, AND NO MORE CROSSING MY LEGS. Who cares if I pee a bit when I sneeze or cough! Lesson too well learned this time. I'm scared for Fri, Sat, Sun...

As a result of this agonizing, excruciating experience, I have all the more painful insight about my Myeloma peers that suffer so much with Myeloma-created bone pain and damage. I cannot even imagine what you go through! I'm learning I just can't handle as much as I used to. Almost 7 years of this crazy cancer journey, has worn me down, beat me up, and weakened my once flippant, "Myeloma doesn't stand a chance with me attitude". I am feeling defeated. This has been one horribly humbling experience...  

Yet despite all this awfulness, look what suddenly bloomed and actually turned and grew towards my main window view, during this challenging ordeal. A bird or squirrel must have dropped this one seed, the stalk grew last week, and this giant, singular sunflower burst open, turning it's beautiful yellow face, completely towards my direction this week! Seriously!

It really did adjust from facing East
to facing West, towards our house!
No matter how awful I felt, this gave me hope and joy

And here I am, looking like a disproportionate goof,
just after I took the sunflower picture-
I couldn't resist capturing the spontaneous angle of the shimmery sunshine 


And finally, an exuberant, joyful buck, a spontaneous mini spook, 
taken the day after Thanksgiving, before I got sick.
They make me smile, and remind me of the life I once had,
but still fortunate to partake in, in a very limited way.

Myeloma, you humble me, scare me, anger me, sadden me, amaze me, defeat me and terrify me. But somehow I rally, I bounce back, I gain hope back, I keep perspective and I know I just can't let you win. I am so blessed and so lucky in so many ways, that no matter how down I get, no matter how defeated and scared I am, I will always have hope and always take one day at time, knowing each new day, is a new possibility, with renewed hope.

Thank you for caring and following my ridiculous myeloma adventures.


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



8 comments:

  1. Sending­čĺťHugs and many prayers.

    ReplyDelete
    Replies
    1. Thank you so much for your friendship and support Suzanne! I truly appreciate all your offers of help! One day... yes, I will "need" Nurse Suzanne! Thank you! xoxo love you!

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  2. If you say it was the worst pain you ever felt then I can't imagine how terrible it was since you have become an expert in the last several years. After the worst pain I ever felt they handed me a new
    baby...
    I glad the dex gave you relief.
    I hope I made you smile! xo
    Fern

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    Replies
    1. Hi Fern! Thank you so much for checking in and letting me know you've read my crazy adventures. Yes, you definitely made me smile with your comment :)) It's been a challenging time for me, and I'll take all the smiles and laughs that come my way!! Thank you for all your support Fern! love you! xoxo

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  3. Oh Julie, my heart is aching for you right now. I am so sad that you have to suffer so much with this STUPID CANCER! I appreciate your raw honesty and how you, somehow, manage to get back up on the horse so to speak. You have an amazing spirit. I am so happy God sent you that beautiful sunflower to give you some sense of joy and hope. I love you. Gay

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    Replies
    1. Thank you so much for your kind support Gay! Yes, great analogy of "getting back on the horse"! Wish I could do that literally lol! Thank you for appreciating my "rawness". All my challenges have really pushed all my "raw" buttons, and the longer I am challenged, the more "raw" I become, cuz myeloma's challenges are really getting to me, especially coming up on my 7 year anniversary! And yes! The sunflower continues to grow larger and even more amazing! Thank you for all your support Gay! love you! xoxo

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  4. Julie:

    I have been reading your blog now for about a year, and am always excited when a "6" comes around. Your honest descriptions of your frustrations and challenges with myeloma are refreshing, and your ability to find the good and wonder in life inspirational. I understand your love of horses, and how they help with your outlook. We have an American Oldenberg (Rocky), who just makes me smile with his mere presence. Him along with my 3 dogs and 3 cats help me through some of my toughest times. I am sorry you had to go through the back pain, it can be quite excruciating. Unfortunately bone and back pain are a large part of my myeloma experience, and I usually have to resort to taking an oxy for relief. Please keep writing, and I hope you feel better soon.

    Kathleen

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  5. So sorry for that horrible experience. that is exactly the pain I had when my T 10 collapsed. I couldn't stand up. I'd literally fall over. Of course, I was too stupid to go get X-rays to know what was up so It was 1 1/2 years later till I was diagnosed. You really need to get an X-ray and see if you've got a compression fracture. They may be able to do Kyphoplasty(sp) if it is. I hope it's not ....

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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.