never did finish my previous post, as I got sick AGAIN! Again with a stupid
FEVER BUG! Sick since late Wednesday afternoon, when my chemo nurses took my
pre chemo temp and reported I had a “little fever” of 98.9. That was mid
Wednesday, and it’s late Sunday now and I still feel lousy and still have a fever. I feel lousy physically and
mentally. This dumb annoying debilitating fever peaked as
high as 101 (Friday I think). Yes, I know... I should have gone to the Dr, but I just felt so awful. I did eventually call and chat with my amazing oncology team, and we cancelled chemo. Here’s the irony: while my body tries to heal from this fever bug, Myeloma surges forward. In trying to get “well”, I get “sicker”! Seriously life, the absurdities!
me to vent, my invisible friends. I really do appreciate “you” being out there… but
please don’t feel sorry for me. I’ll get past this current funk. This is my
reality, and the reality of so many with chronic illnesses.
up this morning still feeling feverish and so frustrated. Frustrated I am so
controlled by Myeloma and my sickly, immune compromised body. So frustrated and sad
with all that is involved with having a “chronic illness”. So frustrated and bewildered that
my body has failed me. Failed me for over 6, 7, 8 years. So frustrated that I
am in the circumstances I am in, at such at “young” and vital time in my life.
So frustrated and sad I can’t really live my life as I had “planned and worked so hard
for. Why Life? Why did you do this to me? Since December 2009, I’ve been
accepting, positive, optimistic, hopeful, grateful and a very cooperative
patient. I’ve lived thinking each treatment will make a difference. A real
difference, a BIG difference, not just a temporary difference. I really
thought I’d be among that lucky percentage that left Myeloma in the rear view
mirror. Dumb. I have an incurable cancer diagnosis, and dang it, I have to
accept I will never be “better” and I will never be the Julie before
Yet, I find
it impossible to accept my circumstances.
should be happy, but I’m feverish sad. I should be glad, but I’m feverish mad. I should be
grateful I am able to still “be here”, no matter what right. I am. Truly I am very grateful when I view my circumstances in “The Big
Picture”. I am very grateful for all the reasons I should be, especially for still being
here 6.7 years after a deadly cancer diagnosis. I know, I am one of the lucky ones who
did have a successful stem cell transplant. (Which by the way, July 29th
marked my 6th anniversary of being released from the hospital.) But
that doesn’t lessen the extreme sadness, frustration and anger, yes anger, I have for you
Myeloma. Why was my life edited at 50? Why am I doomed to suffer forever, until
Myeloma finally takes me? Why Myeloma Why? I had so much more to accomplish and
share with the world.
always been a “less is more” person. Living a simple life, helping humans and
animals fulfilled me. All I wanted for my “golden years” was some carefree fun
with family and friends, with nature and animals. Spontaneous living, embracing
the world’s beauty. Just having fun. Laughing. I really didn’t need much to
fulfill my “retirement” years, as I felt I had accomplished quite a bit in my
life already. I just wanted to continue to help humans and animals and be carefree. What throws me over the edge when I’m feverish and sick, is the
reality of my lack of ability to just live life. To just get up and go and do.
Not big things. Little things, normal things. Things everyone takes for granted
until they’re sick.
want to feel well enough to spontaneously run errands, spontaneously go places, spontaneously do normal mundane things and “feel normal” even though I am not. I’m so so tired of worrying
about germs and cross contamination all the time. All the precautions I take don’t seem to matter anyway. I want to be able to just get up and go. Meet up.
Laugh. Play. I want to have energy. I want to feel good, I want to play, and
say “yes” to family and friends when they want to meet up. I just want some semblance of my life back. I truly can’t believe how “abnormal” my life has become. I want
ownership of my body and life… but that’s an impossible illusion now. I’m so sad… feverish sad.
I’m feverish, there’s a lot I don’t like about me and my life:
don’t like how awful my body feels
don’t like that I feel sick the majority of my days, weeks, months
don’t like how controlled I am by cancer and treatments and side effects
don’t like how cancer and side effects have stolen my spontaneity
I don’t like how cancer has stolen my silliness and playfulness
Cancer makes you more serious, and I don’t like that
don’t like what I see when I look in the mirror. Who is this ragged unhealthy
person looking back at me
don’t like “the new normal”. I’m tired of constantly adapting to yuckiness.
don’t like how everyday normalcy has been stolen from me.
Body, Why did you let me down, take me down, sabotage my life?
I’m sick and feverish, I lose hope. I wonder what the “purpose” to all this is
anymore. Yes, I’m living and so very grateful for that… but I’m really not
really living. To others maybe yes, but to my standard, no. My days are all about just trying to feel ok to accomplish a thing or two. I often wonder what would happen
if I stopped treatments? How long would it take for Myeloma to take over? How
long would it be until I really felt really cancer-sick. How long would it be
until my demise?
I should stop looking at social media and all the reminders of what I am
watching Travel shows, HGTV, Nat Geo, and “Arial America”.
stop looking at anything that makes me miss my previous life, and my lost
get me wrong, I am thrilled for everyone else’s happiness, travels, events,
successes and spontaneous adventures, but more and more, I am slammed with the
reality of my forever limitations. I hate
limitations. I never accepted my limitations. I fought limitations in my other
life. I can’t fight now. There’s no point. Myeloma is what Myeloma is. It’s
chronic, disabling and forever and ever and ever.
can’t “JUST DO” anymore, and that’s what really frustrates me. I just want to
be “normal” and do normal little daily things. Do life spontaneously! Just get
up and go. Think a thought, go do it. Meet up. Accept invitations. Play. Work.
Help others. See others. Have energy. No planning, no worrying about the “what
if”. “Just go do things” you say. No, I really can’t: 2 days a week I do crazy making steroids and
Kyprolis chemo lab treatments. Those days are shot time–wise. I can‘t ever predict
how this will affect me, so I can’t plan much those days. Maybe eating and and
a minimal visit with family and animals.
next day… the crash can come any time. Fast or delayed onset. Totally
unpredictable, so I can’t plan anything day 3. Day 4, 5, ugh, here it comes…
the evil crash… the Dex steroids and chemo yuck crash. The fatigue, the GI
issues, the mental fuzziness exhaustion overload from trying to be strong. The
physical achiness. The dizziness. The neuropathy. The swelling. The crawling
skin. The headaches. Nausea. The wind is gone from my pitiful shredded sails. The
fatigue is totally debilitating.
7 I begin to rebound a bit. I’m teased with a bit of normalcy, but still have
all of the above, so I can’t JUST GO and DO THINGS. And then, repeat. Repeat
for 3 weeks in row. You ask, “what
about your chemo break week”? Well by that point my body is so worn
down, there’s not much left til mid-week, and then, everything is
still unpredictable. My energy is zapped. I’m still achy, my GI system still
surprises me with ridiculous surprises at the most inopportune time. The fatigue
is just so incredibly disabling. But I push forward. That’s just me. Push
forward. Accept. Don’t complain. Appreciate. Be grateful. Glass half full
always. It can always be worse I tell myself 24/7. Look at all the world’s suffering… shut up and
put up Julie. And when I do throw caution to the wind and push forward, trying
to be normal… I GET SICK!!! I get sick even with all my precautions and
carefulness. I hate you Myeloma.
here I am sick for the 3rd time this year thank you stupid
compromised immune system. Guess this is the IgA Myeloma curse. I know, I
know… my circumstances could be sooooooooooooooo much worse. I shouldn’t even
post this rant. Makes me sound ungrateful for my successful treatments and
length of survival, not to mention in comparison to so many, that suffer in so
many ways, that don’t have what I have. Shut up Julie. Just shut up! Shut up
and torture yourself with what you’re missing out on. Shut up and just be… just be grateful for the life you have…
On to the numbers reality game, recapping the month to month of my important Myeloma Markers, with my recent results last:
(Normal IgA = 70 – 400, Normal IgG = 700 – 1600, Normal IgM = 40 – 230)
Date IgA IgG IgM
240 < 18
BEGIN NEW KYPROLIS + DEX TREATMENT:
233 < 18
230 < 18
262 < 18
228 < 18
221 < 18
227 < 18
226 < 18
4/17/16 717 251 < 17
5/15/16 808 232 < 17
6/23/16 1140 267 < 17
7/21/16 1180 247 < 17
Yep! Up it went…
M Protein: PROTEIN ELECTROPHORESIS RESULT, SERUM
Normal = 0 … Zero
July = 1.26
Aug = 1.01
Oct = 1.58
BEGIN NEW KYPROLIS + DEX TREATMENT:
Nov = 1.12
Dec and Jan = Not Detectable! thank you Kyprolis + Dex
Feb = 0.62 Ugh! Quite a jump in a short period of time (Off Dex)
March = Abnormal, but no M-Protein number mentioned (On Dex)
April = Abnormal, but M Protein value not detectable (On Dex)
May = .75 That’s a BIG upward Trend in just one month!
June = 1.06
July = 1.01 WhooHoo.. down .05 lol
WBCs, RBCs, etc etc in the low ranges… so of course I can’t fight off all the cooties out there.
Sorry for my pitiful self absorbed whinny rant. I really do have so very much to be grateful for and I am. I truly am so very appreciative for all the years my medical team and I have outsmarted Myeloma. I am deeply grateful for every day, week, month, year I have survived when I should not have. Fevers just make me so sad and frustrated and that’s what I wrote.
Next post I will share my new hair and our sweet new little shelter rescue.
May your lives be filled with amazing accomplishments and adventures. If you are a well person, live every day never taking your health for granted. If you have Myeloma or another awful diagnosis, I wish you strength to carry on and enjoy what’s important to you. I will. I do. And I will get better.
live well, and make a difference somewhere, somehow, with someone or something
as often as you can!