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

Sunday, October 25, 2015

Changes are Coming, Lots of Stats, and a Funny Story!

10.25.15
So in my quest for NORMALCY, and “quality of life”, I've been sabotaging myself. For a while now.

I’ve officially joined the “smart stupid” club. Yes I’m smart, and analytical. But in my quest to be NORMAL, combined with my FEAR of side effects, I have MASKED (ha! good Halloween pun there), that I am worse off than I thought. Numerically worse now than I was right before my 2010 Stem Cell Transplant. Yep, Stupid is me!

What? How can this be? Well, a few appointments ago, I asked my oncologist to release my unreleased (online) myeloma stats. Kaiser’s policy allows patients to see all their “good” stuff automatically. The “bad” stuff is not released automatically. Yes, I have stacks and stacks of paper results from each appointment. But looking at all my results historically on paper would be unwieldy, as they would spread the length of my house and back! Besides, seeing my life in stats, neatly charted chronologically online, tells "the" story. So before my wonderful doctor left on her unexpected leave, she released (for my viewing), all my previously unreleased results. I now have online access to the full retrospective view of all my myeloma stats- Oct 2009 to present. Wow!

I’ve looked at them, reviewed them, charted them, studied them, analyzed them, printed them, reviewed them over and over, but "IT" didn’t fully sink in until just recently. My early 2010 treatment stats, compared to my current stats, FINALLY impacted me! See, previously I was looking at my INITIAL DIAGNOSIS numbers, NOT my numbers AFTER several months of Revlimid and high dose Dexamethasone treatment, prior to SCT!

This may not sound like much, but it is. My IgA and M-Protein is higher now than mid-initial treatment 2010! Whoa! What?! I’m no where near ok now and haven’t been for a while. I’m worse. And each month I get worse. Myeloma has been slyly creeping back since mid 2013, and I’m in LaLaLand thinking I’m not near as bad as I was in 2009/2010, BECAUSE I was comparing my CURRENT status to my INITIAL diagnosis status. 

Calm down! Yes my Oncology team has been watching my #s carefully, and have been after me all year to switch from Revlimid to another chemo. No one was really "panicked" about my stats, as they were gradually moving up, not not hugely spiking. My regular Hematologist/Oncologist and my SCT Hematologist/Oncologist ENCOURAGED me (each time we met) to switch chemos, so please don't critique them. It's me. Scaredy Cat me. I had enough ok days to convince myself I was doing ok. My upward IgA and M-Protein was somewhat "gradual", not high triple digit jumps each month. I really didn’t think I was “that bad”. Not to mention how my current GI side effects etc, and my overall side effect FEAR FACTOR prevented me from trying a new chemo. Well, I get it now!
I'm a v/isual learner. So after I really studied my stats online, I printed my IgA and M Protein chart stats. I can't describe the impact... just WOW! Oh Boy Wow!! Oh No Wow! Yikes Wow! Here's what I saw. Sorry, it's a lot of numbers here, and it's taken me hours and hours to get this to post correctly here! Look at my IgA from Dec 2009 to June 2010. Then look below from June 2013 to now:




Name
Standard range
IGA
70 - 400 mg/dL
IGG
700 - 1600 mg/dL
IGM
40 - 230 mg/dL
12/11/09
5630
323
< 20
12/14/09
5060
328
< 20
12/30/09
BEGIN
1/14/10
DIAGNOSIS           
REVLIMID     +
4910
 MYELOMA
DEXAMETHASONE
316


< 20
1/29/10
3820
302
   20
2/4/10
2990
272
   27
2/24/10
1090
321
   38
3/9/10
1010
313
   46
3/22/10
621
274
   36
4/5/10
593
270  
   34
4/21/10
636
317
   32
5/21/10
677
276
   24
6/4/10
747
300
   2
AUGUST
9/21/10
FULL
< 25
REMISSION
341
  
 < 20
BEGIN
10/18/10
REVLIMID
< 25
MAINT
362

< 20
10/31/10
< 25
341
< 20
12/2/10
< 25
475
< 20


1/3/11

IGA
< 25

IGG
551

IGM
< 20
2/1/11
< 25
587
< 20
3/3/11
< 25
593
< 20
3/17/11
32
670
< 20
4/4/11
29
617
< 20
5/24/11
34
736
< 20
6/20/11
30
660
< 20
7/21/11
41
676
< 20
8/16/11
44
727
< 20
9/20/11
53
704
< 20
10/16/11
56
647
< 20
11/27/11
100
625
   29
11/27/11
76
618
   25
12/27/11
97
636
< 20
Name
Standard range
IGA
70 - 400 mg/dL
IGG
700 - 1600 mg/dL
IGM
40 - 230 mg/dL
2/23/12
94
620
< 20
3/24/12
93
601
< 20
5/2/12
103
596
< 20
5/30/12
107
613
< 20
JUNE
7/16/12
BEGIN
87
break  from
508
REVLIMID
< 20
8/28/12
89
538
< 20
10/22/12
101
693
< 20
12/10/12
125
635
< 20
Name
Standard range
IGA
70 - 400 mg/dL
IGG
700 - 1600 mg/dL
IGM
40 - 230 mg/dL
1/31/13
173
624
< 20
4/3/13
305
595
< 20
*6/6/13
487
583
< 20 
HERE WE GO-
THAT
7/26/13
 OUT    OF
WAS
927
 REMISSION
 FAST
501


< 20
9/3/13
1110
469
< 20
9/13/13
1270
456
< 20
OCTOBER
11/7/13
BACK        to
1430
TREATMENTS
392
 REV + DEX
< 16
12/3/13
1890
397
< 16
1/30/14
1190
301
< 16
3/31/14
1390
309
< 16
4/29/14
1150
333
< 16
5/29/14
1110
296
< 16
6/20/14
780
267
< 17
7/25/14
1110
335
< 17
8/25/14
979
279
< 17
9/22/14
1140
287
< 17
10/22/14
1200
306
< 17
11/19/14
1180
317
< 17
12/21/14
1070
264
< 17
Name
Standard range
IGA
70 - 400 mg/dL
IGG
700 - 1600 mg/dL
IGM
40 - 230 mg/dL
1/13/15
1340
299
< 18
2/23/15
1250
269
< 18
3/25/15
1360
328
< 17
4/20/15
1080
257
< 17
5/18/15
1320
254
< 17
6/2/15
1570
262
< 17
6/16/15
1630
291
< 17
7/20/15
1620
300
< 18
8/20/15
1530
258
< 18
9/13/15
1770
268
< 18
10/18/15
1890
240
< 18











My current IgA of 1890 is the highest it’s been since mid Feb 2010 (before SCT) and Dec 2013 when I was fully out of Remission.

And here’s my M-Protein stats, which tells the same story with a different variable:

M-PROTEIN, SERUM
0.00 - 0.0g/Dl

12/11/09         4.30
12/30/09         MYELOMA DIAGNOSIS
JANUARY     BEGIN REVLIMID AND DEXAMETHASONE (+ others)
01/29/10         3.03
02/04/10         3.06
02/24/10         0.80
05/21/10         0.48

JUNE             CYTOXAN IV
JUNE             NEUPOGEN INJECTIONS

JULY             MELPHALAN IV
JULY 5          AUTOLOGOUS STEM CELL TRANSPLANT

08/18/10        0.00 (ZERO)
AUGUST 2010 = FULL REMISSION! YIPPEE!

2010 - 2012 I remained on Rev chemo for almost 2 years...
2012 - 2013 Break from myeloma meds
Shortly after taking a break from meds, myeloma comes back
------------
OUT OF REMISSION, HERE I COME

07/26/13         0.72 
08/22/13         0.68
09/13/13         0.96
10/14/13         1.05
11/07/13         1.10
12/03/13         1.40

01/02/14         0.84
01/30/14         0.86
03/02/14         0.79
03/22/14         0.97
03/31/14         0.99
04/29/14         0.81
05/29/14         0.90
06/20/14         0.78
07/25/14         0.85
08/25/14         0.70
09/18/14         0.82
09/22/14         0.82
10/22/14         0.94
11/19/14         0.91
12/21/14         1.14

01/13/15         0.98
01/26/15         1.25
02/23/15         1.20
03/25/15         0.96
04/20/15         1.14
05/18/15         0.88
06/02/15         1.13
06/16/15         1.42
07/06/15         1.19
07/20/15         1.26
08/20/15         1.01
09/13/15         1.37
10/18/15         1.58

Same story. Higher now then early stages of initial treatment, and back in Dec 2013.

As I’ve ranted on previously, I’m not the bravest filly in the herd and I haven’t wanted to deal with new and yuckier side effects. But it’s time now and I know it. So when my Oncologist suggested switching meds, I agreed. Cowgirl up Julie.

We discussed Velcade, and I suggested Kyprolis, as I’ve heard so many awful stories about so many suffering with debilitating Neuropathy from Velcade. So I said let’s skip right past Velcade and go directly to Kyprolis. I’m very fortunate with my insurance that I have choices, and if I can, I pick the most effective treatments, with the least awful side effects. And I have GREAT Doctors, who analyze all my options with me. 

So Revlimid, you’ve been a loyal ally, battling Myeloma for me since January 2010, and I thank you for saving my life. For me though, you’ve grown battle-weary and your myeloma killing power and strength has waned. So good-bye Revlimid, hello Kyprolis. I’m scheduled to begin IV infusions on Nov 2. Yes I’m worried about how the new treatment will affect me, but I know what I have to do to suppress Myeloma, before it’s “too late”. Hello chemo lab, scaredy cat is limping in ...

Ok, as promised… a funny story each post: 

So 6 YEARS ago this month I had my normal, annual “well check” blood tests. Well that “well check” turned out results that I wasn’t so “well” after all. My GP sounded the alarm via voicemail messages that I needed to come back for additional blood work. Whatcha think I did? Yep, put it off, actually “ignoring” the messages at first (stupid!). Not worried, thinking it’s all a mistake, that the lab technician read my results wrong, or it was just something MINOR amiss. But with Jim’s “nagging” (loving insistence), I went back and did more blood tests. My GP called quite concerned again… and again. And each time, I didn’t respond exactly immediately. You know all those “adult excuses”: too busy, too tired, too much to do, too much going on, too many students to help, too many animals to take care of, too much FUN to have, too much of "this and that" to worry about something that I thought would be “nothing”. Ya, I was DUMB!!! But honestly, I really didn’t think much was up. Call me SMART-STUPID!

So what was all this my GP urgently wanted to discuss with me? Yep, my WBC’s were alarmingly low, high, abnormal, unusual, flagged, etc, and I was VERY ANEMIC! Dangerously anemic. What? No! Not me! So anemic he mentioned the word TRANSFUSION. A trans-what? And I needed Platelets too. Plate of what? I scoffed at all of this, and again, really thought someone was reading my results wrong. But I do remember that I did start to review all my unusual body behavior in those last 2 years, as I did have A LOT of crazy bleeding, and weird side effects I would come to know as "Hypercalcalcemia"!

If you are squeamish about body details and physiology… STOP reading here!! especially men…

Actually the Anemia made sense. A lot of sense, as I had been “bleeding out” for quite some time. And by bleeding out, I'm referring to female plumbing.. and my nose. A lot of nose bleeds!

I thought I was having severe nasal allergies as I would get random nose bleeds all the time. And I mean nose bleed rivers that just wouldn’t stop! Some days I couldn’t even go into work, or anywhere, I was bleeding so much, "north and south". Many times I would be in my office, and think my nose was just doing what noses do, and I’d grab a Kleenex, and boom, BLOOD! Or my students would tell me I was bleeding. Well one day, one appointment I was meeting with a young man and his dad. They were new to the USA, so there was a bit of language difference. So when the young man motioned for me to wipe my nose, I got it. I reached over to my Kleenex box, wiped my nose, and yep, bright red. And whenever this happened, no matter how much pressure I put on my nose arteries, I bled and bled. Can you even picture me still trying to conduct counseling appointments holding Kleenex up to my nose? Yikes, what a piece of work I am. SMART STUPID! Well the story gets worse. 

Back then, for about 2 years or so, I thought “mid life” had hit me early as I had crazy erratic female bleeding. (Sorry if TMI (Too Much Information lol). So I only wore black pants back then. Well when this young man and his father and I were done consulting about his upcoming transfer to a prestigious University, they stood up to leave and I did the same to walk them out. Well when I stood up, I HEMORRHAGED! OMG I thought, I can’t move, or I’ll create a mess in my office and beyond! I was so shocked, but didn’t of course want to let on what was happening! I sat back down (ugh, squish), and pretended that I needed to print another document for them. I remained sitting, told them how wonderful it was to meet them and shook their hands good-bye while remaining seated. So awkward! Guess what color chair pad I had… I’m laughing writing this, reflecting on how ridiculous I’ve been in my life… just trying to be NORMAL! 

Well, needless to say, I was beginning to accept something must be up. I had lost a lot of blood 2008-2009. But I rationalized it away as nasal allergies and mid-life women’s issues. Stupidly, I thought I could solve it by making a few dietary changes lol. I told my Dr I would eat BEEF for iron and drink more RED juices to replace my blood loss and blood issues. Sheesshh what goofball I was….or does that spell DENIAL? And STUPID.

Yep, I’m a premier member of the SMART STUPID CLUB.

And so... back to now. Honestly, I’m kinda scared about my new journey. But trying to be brave. I’m probably over reacting, and hopefully my side effect fears are unfounded. Have I confessed what I am most scared of? I can handle most anything except throwing up. It’s just so awful to me. I’ve read there’s nausea with Kyprolis… ugh… Yes, I will ask for all kinds of anti-nausea meds, like I did for Cytoxan, and Melphalan and during my Stem Cell Transplant.

Wish me luck, and I’ll report in on Nov 5, if I’m not hugging “Porcelain John” 24/7 …

Happy Halloween Everyone!


















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














5 comments:

  1. Oh my goodness what a story Julie! I just learned a whole bunch about you from this post. The numbers...wow, my brain would be so scrambled analyzing all of that! And...so much of your story shows how we can explain things away when the C words is nowhere in the realm of our wildest imagination! Hindsight is always 20/20 isn't it? I'm just thankful you have agreed to move on to one of the other good drug choices available to you, and hopefully you will be surprised and actually feel fewer side effects than with Rev! I pray Kyprolis works for you, and that you can have more freedom from Porcelain John. Time to go to battle and get those numbers back down again! In the meantime, stay smart, trust in the doctors you have chosen...thel experts who are in your corner fighting. I will be anxiously awaiting your next post after having your first Kyprolis infusion. I don't blame you for being scared but obviously you are a VERY STRONG woman who has made it through ALOT! EZ and I send you our love and prayers!

    ReplyDelete
    Replies
    1. Hi Linda! Thank you so much for all your kind words of appreciation and support! Yes, it's a lot of overwhelming #s, but writing it all out here, and posting it as I did, has really helped me wrap my head around my situation. Plus it's a great place to refer back to for me to see my stats all in one place. No, I am not that strong, just doing what I have to do, but thank you for seeing me that way :))
      And, it's crazy what happened after all my anticipation...
      Ugh... we'll see what this coming Monday brings. Thank you for all your support, and my best to you and EZ! love and hugs!!!! xoxo

      Delete
  2. I'm praying for you my friend🙏 Just remember how strong and courageous you are just by taking this step. I'm here for you ALWAYS. I will come sit with you during infusions:)
    Love Suzanne Weltig 🌻

    ReplyDelete
  3. One more thing... I MISS YOU TONS!!!!

    ReplyDelete
    Replies
    1. Awwww thank you so much sweet Suzanne for checking in and supporting me as you do! I appreciate your offer so much, and I miss you so much too. Hopefully things will turn around for me, and we can plan a date asap! Hoping all is going ok for you and yours :)) ttyl asap! love and hugs, 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.