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

Tuesday, December 15, 2015

Numbers Don't Lie and Other Shocking News!

*Warning* Post Written on Steroids lol!
Ok Ok, I confess. I'm a numbers freak! I just can't get enough of seeing my blood test stats. It's such a precise window into how Myeloma is winning or being pummeled! I drive the nursing staff nuts with my requests to print print print, release release release my stats! When I meet with my Doctor, I hover over the computer screen with her, asking, nodding, inquiring, questioning, pointing, comparing. I've never been the silent complacent type, and I'm even more obsessively analytical and inquisitive now.


So now that I'm hooking up to Kyprolis 2x a week, for 3 weeks in a row, I get to obsess over my labs weekly! My Doctor has requested I do blood work 24 hours or less before my infusions to confirm if I am doing ok, and strong enough to handle this new Kyprolis regimen. (Initial first dose was lower in Nov, now increased in Dec). With profuse apologies for being so "high maintenance", I always ask my kind Nurses to print my most recent lab reports.

And good thing I do, as my December results have been down right shocking and mind bending. I keep thinking they're misprints. They must have my blood mixed up with someone else's. All this, the polar opposite of what I was hearing and seeing exactly 6 years ago December 2009, when I was seeing horrible, pre-diagnosis, scary you have something really wrong with you type results! Again, the crazy ironies in my life.

I just couldn't believe my eyes the last time I met with my Doctor. I kept looking at the screen with her, and saying, "Really?! No Way! Am I seeing that correctly? Has my IgA REALLY come DOWN? And my WBC's! Whaaat??? They haven't been that high in I can't remember when!" And all my subsequent tests keep getting a little better each time. There must be a mistake! How can this treatment "fix" me up so FAST? (Ok, maybe it is the horse poop factor ;)


I know, I know, you're all thinking what a crazy stubborn idiot I was to not abandon Revlimid sooner, and why didn't my Doctors push me harder to switch? But back then, we agreed that it wasn't quite time to "panic" as my IgA and M Protein was a somewhat "stable" (albeit upward) roller coaster. I do reflect more now on how my oncologists offered, nudged, encouraged me to switch chemos during 2015. Seriously, it was me, being a scardy cat of new yucky side effects. (So far, Kyprolis side effects are quite similar to Revlimid side effects.)

So here's the fun facts:

My IgA for 2015
Standard range = 70 - 400 mg/dL
1/13/15
  1340
1/26/15
  1450
2/23/15
  1250
3/25/15
  1360
4/20/15
  1080
5/18/15
  1320
6/2/15
  1570
6/16/15
  1630
7/20/15
  1620
8/20/15
  1530
9/13/15
  1770
10/18/15
  1890
11/18/15
  1440 (after 4 Kyprolis infusions)
12/2/15
    862 (after 6 Kyprolis infusions)
 OMGeeeezzzz look at that beautiful December number!!! It's only 3 digits!


M-PROTEIN, SERUM
Standard range = 0.00 - 0.00 g/dL

1/26/15     1.25
2/23/15     1.20
3/25/15     0.96
4/20/15     1.14
5/18/15     0.88
6/2/15       1.13
6/16/15     1.42
7/6/15       1.19
7/20/15     1.26
8/20/15     1.01
9/13/15     1.37
10/18/15   1.58
11/18/15   1.12 (after 4 Kyprolis infusions)
12/2/15     "See comment/no comment/no result"
... "Protein of restricted mobility detected in the gamma region. Immunofixation was not performed on this sample because the elctropherogram remains unchanged from the previous report which was....
"IgA Lambda monoclonal gammopathy". Hey I had forgotten which sorority my myeloma was in ;)
 And:
"Quantitation of M Protein may not be accurate due to coelution with beta" (maybe I have Betta fish growing inside me ;)
Saaaay whaaaaat???!!!

And to further shock me-
My WBC's are now hovering in the 3's!!! Whereas I couldn't get out of the 2's forever previously. Normal Range = 4 - 7

And to further shock me-
My ANC was previously hovering at 1.0 or below, and I was becoming "Neutropenic" and almost put on regular Neupogen shots!  My ANC is now hovering @ 1.8 Normal Range = 1.8 - 7.7

I loooooooooooooooove you Kyprolis + Dex! You ARE my magic elixir!

 Love these chemo transport bags!
But they are "too contaminated" to keep they say.
I guess us patients ask about them all the time lol.

Note the "J" station I was assigned!

I have plenty more Stats, but you get the point :) Kyprolis + Dex is pummeling Myeloma! Well, let me temper that just a bit: My IgA is still over 2 times the HIGH end of normal, but hey, I'll take the 3 digit category any day over the creeping up 4 digits just a month ago. Remember just a month ago, I was even SENT AWAY from doing chemo, as I was so immune compromised and NOT strong enough for treatments! (See November 5, 2015 blog post for that crazy story!) 
 LOL Myeloma's running scared now!

When I saw my improved numbers, I just wanted to SCREAM! (Steroids of course having a HUGE impact on my hyper-excitement.) But I zipped my trap, and kept reviewing and reviewing my paperwork, as I whispered to my IV infusion nurses what was going on, and why I was so electric! I felt so bad with all my good news, as there were some pretty sick patients in the chairs just adjoining me. New patients, scared patients, hairless patients, sick (looking and feeling) people... and here I am, all buzzzzzed up on Dex Roids with rosy cheeks, still with hair, and of course, I always have make up on, so I don't look like "death warmed over"!

It turns out, as it always does in my life, I met a man in the chemo lab who lives in my area. We're both in education as he was a high school teacher, and we have tons of local people in common and (of course!) we have the same oncologist. He's pretty off the wall and even more chatty-jokey than me, so when he overhead my nurses talking about my good news, he said to them, "Hey, can I get what she's getting! Just move her IV over here to me, and gimme some of that magical serum!" He has AML, not Myeloma, but I bet he'll ask "our" Doctor if Kyprolis would work for him.
Who ever thought I could be so in love with a chemical!
 After my infusion, the lovely Dex steroids buzzzzz had even more kicked in. I've never been a drinker, but I'm guessing what I feel, is what party-ers feel after a few "good" drinks or shots. I just wanted to run and jump and scream my good news throughout the clinic hallways! Jim's following me out, not able to keep up with my animation and antics! It's really so crazy how one day I can hardly get out of bed, and the next day on Dex, I feel like my ol hyper crazy fun self. I sure know "bi-poloar". 

 Dex Buzz!

I stopped by the Oncology Pharmacist's office to mention my surprising news, and confirm I was seeing my reports accurately. He smiled and said, "I know. I've been following your results." So I asked with run-on sentences, "What does this really mean? Will I be able to reduce the dose, maybe come only once a week, or only twice or once a month now?" He smiled and said, "Well, not so quick Julie. You realize if we change your regimen too soon, or reduce the dose too soon".... he went on to say... "What we have you on is standard protocol"... "You don't want to change what is currently working and reducing your levels of Myeloma"... "It will just come back"...

Oh yah, that's right I acknowledge. What a crazy Dexed-up nut I am. Of course, stupid me! If I stop this magic poison going into me, successfully killing off myeloma, boom! myeloma comes roaring back! Ha, I laugh at myself. Calm down blondie. Reminder to self: I haven't even been doing this for 2 full months yet. I'm only on month #2, infusion week #2. Next week is infusion #3 week, completing month 2. Ha! My steroid buzz got me a little too animated and unrealistic. We did conclude the conversation, that in the future, when my numbers stabilize (if they do), after following the RECOMMENDED PROTOCOL, if I am doing well, perhaps I can be reduced to a "maintenance" dose! Lest I forget, Myeloma is INCURABLE, and I will be on chemo for LIFE!

Hahahahaa! Me!

So driving home, I'm just repeating OMG over and over. I can't believe my good fortune and how wonderfully my body is responding. I am just so blessed and so lucky, and this is all so incredible and surreal. I just love you Kyprolis and Dex! You are my magic! I celebrated with gulping bottles of hydrating water, visualizing dead cancer cells flushing out of me. And when I got home, I couldn't wait to get outside and feel my aliveness, even though it's been super bitter cold recently. Thank you Dex-energy-fake-high for letting me pretend to be normal and celebrate by feeding my horses, raking their "apples" and just breathing in LIFE!!!

All this so incredibly ironic compared to what I was hearing and experiencing EXACTLY 6 years ago to the month. 2009 Death sentence vs 2015 extended Life hope. I have waaaaaay too much life left in me. Way too many things still to accomplish. Way too many people and creatures to impact. And way too many Bucket List items left to accomplish!

Thank you Amber (Wild Horse Diaries) for this awesome picture! 

Another beautiful sunset as I was walking out from my best lab tests ever!

And I almost forgot to mention, today I had an EKG/ECG in Cardiology, then a full Skeletal/Bone Scan prior to my Kyprolis infusion. I'm also scheduled for my 6th, yes SIXTH for 2016, Bone Marrow Biopsy right after New Years, on January 4, 2016.

Thankfully I was loaded up for 2 days on 10mg Dex to get me through all this exhilarating news, tests and tests and infusions. Tomorrow, and for 2-3 days, I crash. And do I crash, ugh... My wake up call reminder of how sick I still really am. But today, I'm a Happy Camper!


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


12 comments:

  1. So exciting for you!!! Yeah!!! I'm sure you are so happy.

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    1. Thank you for all your supportive comments Christina! I'll check in with your blog too. Happy New Year 2016, and let's hope we totally bash MM this coming year!!! :) xoxo

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  2. Wendy WallisDecember 17, 2015

    News like that is the best. Still enjoying your blog. My husband has MM is still doing quite well. So happy for your news. Here's to a great new year for us all!!! Happy holidays.
    Regards,
    Wendy

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    Replies
    1. Thank you for checking in Wendy and for all your support and comments!! I wish the very best for your husband, and hope all goes great for him in 2016! Thank you for all your sweet comments here! :) xoxo

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  3. Julie, FUCK YES!! I was reading this... was getting more and more excited!!! I am really happy for you and your numbers! You are such a nut and sound so much like your crazy self. I love you and looking forward to 2016 and the 6's add 862=16 just saying love ya Madonna

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    1. Best compliment ever! Thank you so much Madonna for appreciating my crazy whacky self and steroid writings! Your math puzzle stumps me! Remember, I'm blonde :) Thank you for all your love and support and craziness! Let's celebrate in 2016 xoxo :) <3

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  4. Hey Julie!! This is REALLY exciting news! I'm so happy that you got this good news, you finished up the regimen, and are home for the holidays!! Have a blessed Christmas. Let's try for a visit sometime in February or March - I think I've already made a note on my calendar. Much love and prayer, Gay

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    1. Thank you Gay for all your love and support and encouragement always! And yes, a visit in 2016 sounds great between chemo and steroids and crash time lol. And thank you for being such a loyal blog follower! xoxo :)

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  5. Julie, I am so happy for you!!! What good news! Renewed energy and renewed hope-What a great Christmas present!

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    1. Ah, sooooo great to hear from you Kristine/Kris! Thank you for all your support over the years and I hope you update your blog soon too, but I'm guessing "no news, is good news for you!" All the best for you in 2016, and thank you for your MM blog friendship over the years! xoxo :)

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  6. Catching up on blogs and what wonderful news to read! Congratulations Julie on your new lease on life. So happy to imagine you shouting with glee! Happy New Year!

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  7. Thank you Linda! And so happy you updated your beautiful blog too! Happy New Year to you and EZ :) xoxo

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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.