So in my
quest for NORMALCY, and “quality of life”, I’ve been sabotaging
myself. For a while now.
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!
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!
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.
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!
look below from June 2013 to now:
|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
my M-Protein stats, which tells the same story with a different variable:
0.00 – 0.0g/Dl
12/30/09 MYELOMA DIAGNOSIS
JANUARY BEGIN REVLIMID AND DEXAMETHASONE (+ others)
JUNE CYTOXAN IV
JULY MELPHALAN IV
08/18/10 0.00 (ZERO)
OUT OF REMISSION, HERE I COME
Higher now then early stages of initial treatment, and back in Dec 2013.
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.
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.
Ok, as promised… a funny story each
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
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
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.
luck, and I’ll report in on Nov 5, if I’m not hugging “Porcelain John” 24/7 …
Happy Halloween Everyone!
live well, and make a difference somewhere, somehow, with someone or something
as often as you can!