I generally have my blog posts written in my head, ready to post on the 9's, but of course all our darn issues and medical complications here, always seem to sabotage my best writing intentions. I often send drafts to myself at the most unusual times, as I seem to have some of my most inspirational writing moments when I'm in the Horse Arena Picking Up Poop!!! ahaha :)) Or very late at night when brushing my teeth. Have you ever looked at the patterns of your toothpaste splatter in the sink as you brush your teeth? I see "messages" there all the time...
Sometimes, I think I should just post my raw, unedited thoughts, then I realize I am writing to World, and need to be careful what I put out there... but I love Authenticity and Spontaneity. I love to just write from the moment, from the gut, from the heart. Just letting it all spill out from what's circulating in my damaged brain.
So I think I will this time... but after this little "announcement"...
Today is "gradual" crash day from yesterday's "Monday Medication Madness Day", so I'm starting to feel kinda yucky... Yes still weekly treatments of 40mg Dex Steroids, 1 Velcade shot in the belly jelly, 8 Cytoxan Cyclophosphamide capsules at 400mg. I keep posting about this, as I'm always so INCREDULOUS how my body tolerates all this stuff injected in to me, ingested, digested in my tummy. And that I do this every single week, no breaks, no time off, every single frkin week. I think it's all so amazing I'm still here, and coming up on my 10 year Myeloma diagnosis Anniversary next month!!!
And speaking of Anniversaries and Birthdays... drum roll please... :))
This Friday, Nov 22 is my Big 6-0 Birthday! Yep, diagnosed at 50 and here I am, 10 years later, turning 60, against all the odds and "predictions"!! Never, ever thought that I would see 60. Many would "hide" this number from the world, but I'm super duper proud I am still here and able to do and be me still. 60 years on this earth! Incredible. Sounds so OLD, but I sure don't feel OLD on "good days", and sure don't feel like the stereotype of what 60 sounds like, or I used to associate with 60. Whoohoo, I'm OLD!! I'm a "senior citizen" ahaha... sure don't feel like it mentally! And on Dex steroid days, I don't feel like it either!
Be right back... with my raw and honest post from the horse poop... :)))
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Hoping to not offend any of you battling other cancers, or all the other awful life "illnesses" and challenges out there everyone is dealing with, but honestly, there's just something different about battling the Life Long "death sentence" of Myeloma. From day one of diagnosis, I was told THERE IS NO CURE FOR MYELOMA, BUT IT IS TREATABLE... ya ya I thought then, no BIG DEAL. Treat and Get on with life, I thought at the time. I really wasn't that scared or worried. Just take some meds, do the stem cell transplant, and get on with life, get back to work, get back to life, get back hobbies, etc... ya ya, Terminal, ha, it's Treatable, they said....
WHAT I REALLY DIDN'T AND COULDN'T PROCESS AT THAT TIME, WAS THE REALITY OF LIFE LONG TREATMENT IF I WANT TO STAY ALIVE...
What I really couldn't and didn't process was what it would be like to treat an Incurable Cancer FOR LIFE!
What I really couldn't process then was the Continual Cycle of Treatment and Side Effects... Every Single Day, Every Single Week, forever and ever and ever and ever, if I want to stay alive.
Can you even grasp the concept of doing chemo EVERY SINGLE WEEK, AND BEING SICK EVERY SINGLE WEEK, NO BREAKS, NO TIME OFF.
Can you even grasp the thought of ANTICIPATING doing chemo every single week, and anticipating and dealing with yucky side effects Every Single Week. I couldn't grasp or process it then, and I still wake up shocked every single day. Shocking writing this, as THIS. IS. MY. LIFE. This is my Reality.
I'm invited places all the time. I want to make plans all the time. I want my previous life back all the time. I want to work, play, do, go, be who I used to be, all the time. I want to go back to being "normal". I want to say Yes, to going places, doing things, playing, working, doing projects, having the energy and normalcy to do... but I just can't. The fatigue from myeloma and treatments and side effects is disabling. I feel more and more nauseated as I write this, as Monday's chemo side effects are hitting more and more each minute. I don't know if I'm hungry or nauseated. If my head hurts from thinking, or from the medications. I'm thirsty, but I don't want to swallow or drink anything, but I know I must. Everything is yucky today and tomorrow and the next day. Imagine a life of forcing most anything and everything. Of doing everything and anything because you HAVE TO, not because you want to, like BEFORE MYELOMA... My Halloween decorations are still sitting out, needing to be put away before Thanksgiving and Hanukkah and Christmas, and New Years comes. There are storage boxes to go through, years and years of stuff to go through... but myeloma always sabotages....
Everyone says get out there and do things. Live your life. Be happy. Go places. Ha! Ya right. And have near misses with GI issues. Force going places when you feel sick and dizzy and achy. People just can't grasp that I look as good as I do, but I feel so yucky. My personality is to "grin and bear it". "Fake it til you make it". And I'm a natural communicator. So I force energize myself and my conversations, when I really don't have much helium at all. But then there are days... when I just can't. And that will be tomorrow, Wednesday, my worst day... But I still have to pull myself together to be "boss lady" here, as I'm still in charge...
They say don't make cancer your life, or your identity... Oh really?
With treatment every frikn week.
Side effects every every frikn week, how can cancer NOT be my life?!
Live your life they say
Be happy they say
Get out and do things they say
Be happy they say
Yes to all of those, but how, when you feel so awful?
How "happy" would you be with a Terminal Cancer Death Sentence?
How "happy" would you be with a husband with Terminal Alzheimer's who used to do EVERYTHING and was MY CAREGIVER!
They say, get on with your life, don't make cancer your life, don't let cancer control you.
Really how is that possible when treating terminal cancer IS MY LIFE, every day, every week, forever and ever to my infinity.
Really, how can I not make cancer my life, when cancer crept in my life and made my life all about cancer, and illness, treatments, and sadness, and overwhelming challenges every day... This is not a choice. This is not something I opted for, or chose in my life. It's not a decision I made. It's a decision that my body made for me. Yes how I respond psychologically to all of this is a choice, but what happens to me physically, I have little control over...
Everyone says just be happy. Well I am very happy some days. I do feel ok some days. But my REALITY IS I AM A CANCER PATIENT FOR LIFE. NO OPTIONS IF I WANT TO STAY ALIVE. I must do chemo every week to stay alive. I must suffer with side effects if I want to stay alive. Cancer is my life, as Cancer invaded my life and became my life. It is my reality, and I cannot pretend differently.
Most other cancers can be treated, and the patient achieves remission, and moves on with life. Myeloma is different. Myeloma is incurable... myeloma is for life.
So cheers to surviving a decade after diagnosis. This makes me happy and proud! Cheers to being as "well" as I am, after 10 frkn years of treatment and my body trying to kill me. Cheers to turning 60 on November 22! I had plans to celebrate in many different ways, but reality is that can't, won't happen because of chemo side effects. This is not a poor me, pity party. It's my reality. No I am not depressed. No I am not angry. I am just explaining the Reality of my REALITY...
Go Team Mutts For Myeloma!
Aren't we all cute!
Look at all the cute doggies!!!
He's an 8 year survivor!
Me and my daughter Alissa and our darling "littles"
I'm pretty worn out here
But "fake it til you make it" right!
Thank you for reading and checking in, and caring about my life and story as you do. Hope all is good in your life, and if you're a myeloma patient or cancer patient, I hope your treatment road is as tolerable as possible.
I'll be back to edit this again, and again and again.
HaPpY BiRtHDaY!! Isn't 60 the new 40 now? So glad to hear that you are still fighting the fight!! I hope the side effects are gentle this week and you will get enough of a reprieve to celebrate in some way.
ReplyDeleteKris! Is this you, my MM girlfriend, now a BlackBelt!!! I just saw your update!!! I am soooooo proud of you, and I am honestly so "shocked" and THRILLED with your good health! You are doing so much! Teaching, Karate, your beautiful family! Wow, you sure did kick the lights out for myeloma!!! Let me know if this is you! I'm going to post this on your blog too. Thank you so much for checking in! Crazy how our myeloma journey is so different. You had such extreme side effects in the beginning, then 2 SCTs, and all your other side effects, but now you are doing fine for years, and out of treatment, and here I am in continuous treatment. But as you mentioned in your blog post, we are of the lucky few, to have survived as long as we have. Congrats on all your amazing live accomplishments! xoxo Julie :))
DeleteHappy birthday Julie!!! Great meeting you. I think you're doing great and handling this really well. This can all be so frustrating and unfair. fortunately we've made some great friends. Make it a great day
ReplyDeleteYes, I will never get over how thankful I am for our friendship Matt, your effort to come up for Bark for Life, and all the other Myeloma connections we have both made via our blogs. Hope you are feeling ok, and power on warrior buddy! xoxo :))
DeleteDear Julie, Happy 60th. I hope you had a good day in spite of all the recent challenges. I'm right behind you with my 60th coming up in a couple of weeks. We never thought we'd see these birthdays, yet here we are. So glad to see you getting out; wonderful photos and so nice you could meet up with Matt. Best wishes, Aurelie
ReplyDeleteHi Aurelie! So nice to hear from you, and Happy almost Big Birthday to you too :)) Too bad we can't get together and celebrate our Big 6-0, that as you said too, we didn't think we'd ever make! Whoo hoo go us!!! Send me an email with your treatment details and how you're doing. Wishing you a supper Happy 60th Bday! We're still just kids, right :)) xoxo
DeleteFrom my husband, a myeloma patient-
ReplyDeleteThank you for sharing your experience with velcade .I have had myeloma for 10 years - after 2 stem cell transplants brought my paraprotein down to 3 was maintained on revlimid until last year when I developed the extremely rare condition of revlimid induced interstitial pneumonitis and had to stop it and go on velcade . One injection subcutaneously per week, plus dexamethasone 20mg for 2 days per week plus cyclophosphamide as well as prophylactic antibiotics.
Apparently velcade has less side effects given subcutaneously and I have put up with it so far- only one month now. Good luck, Doug
Wow, Doug! Hello! Thank you for finding my blog and commenting and letting me know your situation! We are both 10 year miracle warriors! Go us! Amazing how long we have made it, right! And you! 2 SCTs! You are braver than me. But so many other long lasting MM warrior friends of mine have done the 2 SCTs. I just wasn't brave enough to go thru another one, so here I am, doing chemo weekly for life!
DeleteSo did I read correctly, that we are on the same protocol of Dex, Velcade, Cytoxan? and you are doing 20mg Dex for 2 days, so you are on 40mg like me? Sorry to hear about your Revlimid side effects. Rev gave me lovely lower GI side effects, that prevented me from leaving the bathroom for days lol. I have some pretty funny stories on my blog re Rev side effects and events I tried to do, including a car show with my Vintage VW. I'll link it here...
https://juliesmyelomamoments.blogspot.com/2015/03/when-abnormal-becomes-normal.html
Thank you for finding my blog, Chris and Doug, and please continue to let me know how you are doing on our twin treatment and years of survival! :))
Hi Julie! Happy belated 60th! That's a ginormous BFD! Hope you have MANY happy returns of the day and so glad to "see" you getting out for a little fun with your family (love that picture with your husband making kissy faces at your doggies). And meeting a blogging friend, Matt! How cool is that! Hope you had a great Thanksgiving and that you are able to enjoy more time with friends and family this holiday season. Be blessed and loved, Bernadette
ReplyDeleteAww Thank you so much sweet Bernadette! Yes, within all the challenges we are very lucky and blessed. I just updated my current post with more pics! Hope you are doing well, and had a wonderful holiday with your family xoxo Thank you for the Big Birthday wishes :)) xoxo
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