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Thursday, November 5, 2015

This Really Happened... No Chemo Happened

My life seems like a (bad) comedy show right now. Crazy challenges and situations that leave me shaking my head in total disbelief.
I'm that movie character dangling off the cliff by my fingernails, with rescuers looking for me on the wrong side...
After all my anticipation of changing chemos, after all my reading, writing, talking, thinking, analyzing, braving up, psyching myself up for leaving Revlimid behind and hooking up to Kyprolis... It. Never. Happened! No Joke! The Big Day, Monday Nov 2, fizzled out like helium suddenly let out of a giant balloon. My Chemo Was Cancelled!... Here's what happened:

So on THAT day... I really didn't know how my body would react to a new chemo coursing thru my veins, so I didn't eat much before leaving for my highly anticipated 1:00pm appointment. Earlier, I took my daily Acyclovir (anti-Shingles) and B12, D3 with a Vanilla Ensure, and that's all I had. I figured if I was going to get sick, that wouldn't be too bad coming back up lol. I packed my iPad, phone, charging chords, saltine crackers, water, and off we went. I wasn't feeling anxious at all at this point. Just curious and ready to see what the next chapter in this book of myeloma madness would be.


I checked in, and chit-chatted with the receptionists, as I pretty much know everyone in Oncology now. We share family and animal stories, and I updated them as to why I was back so soon. As I sat down, I shook my head in disbelief that I was not there this time for a "routine" check up, but there for a new chemo treatment. Seriously, I just still cannot wrap my head around being a cancer patient to begin with, and now readying for a new IV chemo. It just doesn't fit. It's still an out of body experience for me.


When my nurse called me in, I said, "Hey... Hi... do I really have to, can I leave now?" She laughed and the people in the waiting room did too. She said, "C'mon in Ms Julie, it's your time"... I said, "Nope, I'm leaving, I changed my mind", as I walked compliantly in. Ugh... play the game Julie, I thought to myself. Be smart. Be brave. Smile. Pretend. Suck it Up. You can Do This. But I wanted to Run.

So she took all my body stats, weight, blood pressure, temp, what's that finger oxygen thing? And then she asked me a few more detailed questions about levels of pain, numbness, neuropathy, nausea, diarrhea, headaches, swelling, etc etc etc. Then into a regular exam room we went. Awaiting my Doctor, ready to get this chemo party started.

Waiting... Blah. Ugh. No. What the Heck am I doing HERE. Oh just Shut Up Julie and Brave Up. Door opens. Hi Doctor... Nice to see you...  here we go...

She logs in, and brings up my most recent blood tests taken just the day before, as directed. She wanted really recent, up to date info on me, which I liked.
AND THEN IT HAPPENED.
She said, "Well, I don't think it would be wise to begin Kyprolis today Julie. Your WBCs are lower... your ANC is lower... your... is lower... your... is lower..." she shows me my stats on the computer screen..

" aaaaaaaaaaawhhaaaaaaaaaat............ hhuuuhh??? " Wow, Really. Wow, Oh Wow. Seriously. Wow. I'm Trying to Process THIS totally UNANTICIPATED change of events! Jim's just sitting there with a totally confused look on his face.

I step closer to the computer screen.
My Whites are 2.0 (4 - 11 scale)
My ANC is 1.0 (1.8 -7.7 scale)
My other levels are low, low, low, high, high, high

And so my Dr says, "Let's Wait Another Week to See if Your Immune System Improves. Take your labs again next weekend, and Come Back Next Monday", she offers. DO WHAAAAAAAAAT? I'm screaming/whispering in my head. LEAVE NOW. COME BACK IN A WEEK. I must be misunderstanding. Wait, this wasn't the plan. I braved up for today. I'm READY TO DO THIS NOW, and now I'm being sent home! My body is sabotaging me again. Playing another cruel joke on me! This just can't be.

But it is to be. I'm sicker than I thought. Weaker than I knew. More immune compromised than anticipated.

And in a last ditched effort to BE OK, I slightly laughed and said, " But but but...are you sure Dr? I'm ready to do this TODAY. I psyched myself up for this TODAY. Really, I'm ok, let's do this, I'm ok, I'm ready"... I smile...

My nice, but steadfastly professional Dr said with a smile, "we need to wait. You're not strong enough, your immune system is too weak, too fragile. Let's wait and see how you are in a week. Maybe your blood levels will be stronger..." (these are not exact quotes, as my mind was swirling by this point).

"But, But, But.... Wow, Well, Wow, Really? Are you Sure? I feel ok. Are you sure"... I mumble, stumble, and shut up.

She said to be sure to take my Dex steroids asap. And do my labs, and see how I am, and "see you next week"...

See HOW I AM... HOW THE F AM I ... How am I. See how I am... I'm screaming in my head, this CANNOT BE. Wait... hook me up. Let's do this. I prepped myself mentally. I can't just leave now. I'm ready. I'm Supposed to Get a New Chemo Today! Kyprolis you're supposed to get in my veins and kill myeloma starting TODAY! Wait, I'm ready to do this... What just happened?

THIS is JUST so ANTICLIMACTIC! Being Sent Home! Being told I CAN'T do chemo... but then again... it's REALLY so DRAMATIC! It's really so telling.

I'M TOO SICK, WEAK, NOT WELL, NOT STRONG ENOUGH FOR CHEMO. I NEED CHEMO, BUT I CAN'T DO CHEMO. OMG.... MY HEAD IS GOING TO EXPLODE... This really cannot be happening. Hello world, this is Julie. Stop messing with me. The joke is over. I'm done. Let me OFF this CRAZY ride called CANCER. Stupid Myeloma. I want OUT of this of Myeloma Madness.


Jim's so shocked at this point, he can't even formulate sentences. Me, I'm so shocked and stunned, I just keep mumbling to myself.. OMG OMG OMG WTF WTF WTF just happened. I was "kicked out of chemo". I can't believe this. I was supposed to do chemo, but I can't do chemo. I'm being sent home! "Ok Jim, this is Nuts! F it- Let's Go Eat!!! I'm not even hungry, but let's go eat. I need to EAT!
I need to build up my immune system. I need to get strong for Chemo. What an oxymoron! Or... I'm a moron lol.

Yep I'm waltzing around in my life, thinking I'm more or less ok. Thinking I'm going to be ok. Well not really, not always. I'm too good faking I'm ok. Well if this isn't my reality check, I don't what is, right?

So stay tuned. Blood work this weekend. Chemo drill #2, Monday Nov 9. And if I'm not strong enough, if my WBCs and ANC, and all the other important immune system markers are not ok... well the plan is to shoot me up with my Best Friend Neupogen!

Seriously, can you believe this? I can't. I'm still reeling in shock.

This is Charlene's look of disbelief too!

And Then This
What a beautiful end to a crazy day!


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



2 comments:

  1. What a story. I totally get hypeing yourself up to get the Kropolis. Such a turn of events. Well, the good news is you get another week to get ready. Anticlimactic for sure but it'll start soon enough. I maybe right behind you. Pomalyst just isn't bringing my numbers down and I get low anc as well. I'm thinking after the first of the year. Good luck with it next week. I'll be interested in how you tolerate it.

    ReplyDelete
    Replies
    1. Hi Christina! Thanks so much for checking in! So Pom isn't helping that much now? Sorry to hear that for you. That was another option I was considering. Sshheesh, we just can predict what will attack MM or not :(( Let me know if you try Kyprolis also. Have you tried Velcade? I hear it works, but read the Neuropathy is just so devastating and unbearable! Let me know how it goes for you, and thanks for checking in! xoxo

      Delete

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.