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!