I'm that movie character dangling off the cliff by my fingernails, with rescuers looking for me on the wrong side...
Revlimid behind and hooking up to Kyprolis... It. Never. Happened! No Joke! The Big Day, Monday Nov 2, fizzled out like helium suddenly let out of a giant balloon. My Chemo Was Cancelled!... Here's what happened:
So on THAT day... I really didn't know how my body would react to a new chemo coursing thru my veins, so I didn't eat much before leaving for my highly anticipated 1:00pm appointment. Earlier, I took my daily Acyclovir (anti-Shingles) and B12, D3 with a Vanilla Ensure, and that's all I had. I figured if I was going to get sick, that wouldn't be too bad coming back up lol. I packed my iPad, phone, charging chords, saltine crackers, water, and off we went. I wasn't feeling anxious at all at this point. Just curious and ready to see what the next chapter in this book of myeloma madness would be.
I checked in, and chit-chatted with the receptionists, as I pretty much know everyone in Oncology now. We share family and animal stories, and I updated them as to why I was back so soon. As I sat down, I shook my head in disbelief that I was not there this time for a "routine" check up, but there for a new chemo treatment. Seriously, I just still cannot wrap my head around being a cancer patient to begin with, and now readying for a new IV chemo. It just doesn't fit. It's still an out of body experience for me.
When my nurse called me in, I said, "Hey... Hi... do I really have to, can I leave now?" She laughed and the people in the waiting room did too. She said, "C'mon in Ms Julie, it's your time"... I said, "Nope, I'm leaving, I changed my mind", as I walked compliantly in. Ugh... play the game Julie, I thought to myself. Be smart. Be brave. Smile. Pretend. Suck it Up. You can Do This. But I wanted to Run.
So she took all my body stats, weight, blood pressure, temp, what's that finger oxygen thing? And then she asked me a few more detailed questions about levels of pain, numbness, neuropathy, nausea, diarrhea, headaches, swelling, etc etc etc. Then into a regular exam room we went. Awaiting my Doctor, ready to get this chemo party started.
Waiting... Blah. Ugh. No. What the Heck am I doing HERE. Oh just Shut Up Julie and Brave Up. Door opens. Hi Doctor... Nice to see you... here we go...
She logs in, and brings up my most recent blood tests taken just the day before, as directed. She wanted really recent, up to date info on me, which I liked.
AND THEN IT HAPPENED.
She said, "Well, I don't think it would be wise to begin Kyprolis today Julie. Your WBCs are lower... your ANC is lower... your... is lower... your... is lower..." she shows me my stats on the computer screen..
" aaaaaaaaaaawhhaaaaaaaaaat............ hhuuuhh??? " Wow, Really. Wow, Oh Wow. Seriously. Wow. I'm Trying to Process THIS totally UNANTICIPATED change of events! Jim's just sitting there with a totally confused look on his face.
I step closer to the computer screen.
My Whites are 2.0 (4 - 11 scale)
My ANC is 1.0 (1.8 -7.7 scale)
My other levels are low, low, low, high, high, high
And so my Dr says, "Let's Wait Another Week to See if Your Immune System Improves. Take your labs again next weekend, and Come Back Next Monday", she offers. DO WHAAAAAAAAAT? I'm screaming/whispering in my head. LEAVE NOW. COME BACK IN A WEEK. I must be misunderstanding. Wait, this wasn't the plan. I braved up for today. I'm READY TO DO THIS NOW, and now I'm being sent home! My body is sabotaging me again. Playing another cruel joke on me! This just can't be.
But it is to be. I'm sicker than I thought. Weaker than I knew. More immune compromised than anticipated.
And in a last ditched effort to BE OK, I slightly laughed and said, " But but but...are you sure Dr? I'm ready to do this TODAY. I psyched myself up for this TODAY. Really, I'm ok, let's do this, I'm ok, I'm ready"... I smile...
My nice, but steadfastly professional Dr said with a smile, "we need to wait. You're not strong enough, your immune system is too weak, too fragile. Let's wait and see how you are in a week. Maybe your blood levels will be stronger..." (these are not exact quotes, as my mind was swirling by this point).
"But, But, But.... Wow, Well, Wow, Really? Are you Sure? I feel ok. Are you sure"... I mumble, stumble, and shut up.
She said to be sure to take my Dex steroids asap. And do my labs, and see how I am, and "see you next week"...
See HOW I AM... HOW THE F AM I ... How am I. See how I am... I'm screaming in my head, this CANNOT BE. Wait... hook me up. Let's do this. I prepped myself mentally. I can't just leave now. I'm ready. I'm Supposed to Get a New Chemo Today! Kyprolis you're supposed to get in my veins and kill myeloma starting TODAY! Wait, I'm ready to do this... What just happened?
THIS is JUST so ANTICLIMACTIC! Being Sent Home! Being told I CAN'T do chemo... but then again... it's REALLY so DRAMATIC! It's really so telling.
I'M TOO SICK, WEAK, NOT WELL, NOT STRONG ENOUGH FOR CHEMO. I NEED CHEMO, BUT I CAN'T DO CHEMO. OMG.... MY HEAD IS GOING TO EXPLODE... This really cannot be happening. Hello world, this is Julie. Stop messing with me. The joke is over. I'm done. Let me OFF this CRAZY ride called CANCER. Stupid Myeloma. I want OUT of this of Myeloma Madness.
Jim's so shocked at this point, he can't even formulate sentences. Me, I'm so shocked and stunned, I just keep mumbling to myself.. OMG OMG OMG WTF WTF WTF just happened. I was "kicked out of chemo". I can't believe this. I was supposed to do chemo, but I can't do chemo. I'm being sent home! "Ok Jim, this is Nuts! F it- Let's Go Eat!!! I'm not even hungry, but let's go eat. I need to EAT!
I need to build up my immune system. I need to get strong for Chemo. What an oxymoron! Or... I'm a moron lol.
Yep I'm waltzing around in my life, thinking I'm more or less ok. Thinking I'm going to be ok. Well not really, not always. I'm too good faking I'm ok. Well if this isn't my reality check, I don't what is, right?
So stay tuned. Blood work this weekend. Chemo drill #2, Monday Nov 9. And if I'm not strong enough, if my WBCs and ANC, and all the other important immune system markers are not ok... well the plan is to shoot me up with my Best Friend Neupogen!
Seriously, can you believe this? I can't. I'm still reeling in shock.
What a beautiful end to a crazy day!
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!
What a story. I totally get hypeing yourself up to get the Kropolis. Such a turn of events. Well, the good news is you get another week to get ready. Anticlimactic for sure but it'll start soon enough. I maybe right behind you. Pomalyst just isn't bringing my numbers down and I get low anc as well. I'm thinking after the first of the year. Good luck with it next week. I'll be interested in how you tolerate it.ReplyDelete
Hi Christina! Thanks so much for checking in! So Pom isn't helping that much now? Sorry to hear that for you. That was another option I was considering. Sshheesh, we just can predict what will attack MM or not :(( Let me know if you try Kyprolis also. Have you tried Velcade? I hear it works, but read the Neuropathy is just so devastating and unbearable! Let me know how it goes for you, and thanks for checking in! xoxoDelete