Allow 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.
I woke 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 Myeloma.
Yet, I find it impossible to accept my circumstances.
I 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.
I’ve 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.
I just 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.
When I’m feverish, there’s a lot I don’t like about me and my life:
I don’t like how awful my body feels
I don’t like that I feel sick the majority of my days, weeks, months
I don’t like how controlled I am by cancer and treatments and side effects
I 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
I don’t like what I see when I look in the mirror. Who is this ragged unhealthy person looking back at me
I don’t like “the new normal”. I’m tired of constantly adapting to yuckiness.
I don’t like how everyday normalcy has been stolen from me.
Why, Body, Why did you let me down, take me down, sabotage my life?
When 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?
Maybe I should stop looking at social media and all the reminders of what I am missing.
Stop watching Travel shows, HGTV, Nat Geo, and “Arial America”.
Maybe stop looking at anything that makes me miss my previous life, and my lost future.
Don’t 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.
I 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.
The 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.
Day 6, 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.
So 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
10/18/15 1890 240 < 18
BEGIN NEW KYPROLIS + DEX TREATMENT:
4/17/16 717 251 < 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.