I just keep thinking that my myeloma numbers will magically change for the better and my medications will suddenly kick in and totally eliminate myeloma's power over me. Seriously, this must all be a bad dream (make that a nightmare)! As much as I have always (tried to be) a total realist, I shake my head in disbelief that my "perceived" reality is not real reality.
What am I trying to say here... I (stupidly) thought that taking only 1/2 my weekly dose of Dexamethasone and even missing, (smugly deciding not to take), several doses of Dex in May, wouldn't be a big deal at all. I stupidly thought, eehh, I'll be just fine, it won't make a difference, I'm Julie and I'm not supposed to have cancer, so whatever, it won't matter if I don't follow what I'm supposed to do. And besides.... I'M JUST SO DARN SICK OF FEELING SICK, SO TIRED OF BEING TIRED, AND SO OVER HAVING CANCER, (hhmmm... haven't I written that multiple times before!), that I just don't want to take these GI crazy making meds, so take that myeloma, I won't take my meds! DUMB!!!
Here I am, living in my fantasyland of unicorns and magical thinking
So I'll confess... I'm still in denial about having incurable cancer. It must be a mistake. Even though feeling yucky most of the time is my constant reminder, I still can't believe I have cancer and I have to take all these crazy chemo meds forever and ever and ever until lights out. I still think, oh it really won't matter if I cheat on my med schedule occasionally, because it will just magically be ok, because I really don't have cancer. And honestly, I still can't believe 5 years of treatments, including a stem cell transplant, hasn't "fixed me up", and made me "normal" again. I know... dream world...
This probably makes no sense at all, because it really doesn't make any sense at all, because me having cancer makes no sense at all...
So anyway.... this is what happened:
I was supposed to see my COH/SCT/transplant, hematologist oncologist this past Monday, but because I had so much frikn GI lava, I didn't dare get on the freeway to go downtown. Even a dose or 2 of my friend Imodium wasn't calming the raging lava. So I emailed my Dr (and kinda confessed about my cheating) and asked him to let me know the results of my recent labs. Ha! be careful what you ask for, right?!
The results actually shocked me. And good they did, cuz that was just the wake up call I needed.
M-protein up from .88 to 1.13
IgA up from 1320 to 1570
WBCs still in the middle 2's
ETC!!!
So I'm an idiot. I got my slap around, wake up call. I have cancer. I have to take all these meds. My situation is only getting worse. I'll probably have to add to my chemo cocktail and that scares me a lot!
And these results are not even reflective of my new test cycle of 2 weeks of 15mg Rev only (no more alternating 10mg), with 2 weeks off. I see my local hematologist/oncologist on the 19th, and I'll take my labs about 5 days prior... so we'll see. But ok, I've learned. There's something about Dexamethasone that punches myeloma in the cellular gut. As much as I absolutely hate the crash, I do enjoy the short buzzing serenity Dex gives me for about 24 hrs. Time to focus on that, and just accept my relationship with "Porcelain John".
So why did I cheat in May? There were a lot of things going on. A lot of events I was supposed to attend. C'mon cancer, you're gettin in the way of my life! Trying to work, live life, be there for others, enjoy family and friends, and trying participate in activities without having to worry about surprise volcanic eruptions. That's why I cheated a bit. But you know what... I still felt sick. I still had to starve myself if I left the house. I still had a lot of shocking GI reactions. So I learned. Shut up and take my meds.
Here's what I did on a few of the days I cheated:
Celebrated Claudia
at her beautiful memorial service
Hung out with these Gems
Pretended to be normal at a Battle of the Bands car show
Played in the dirt a bit
And breathed in my favorite scents
Attended my 30th commencement ceremony
celebrating students, with wonderful colleagues
And when I couldn't leave the house,
I watched a lot of TV with my daughter and hubby
between never ending visits with "Porcelain John"
I watched a lot of TV with my daughter and hubby
between never ending visits with "Porcelain John"
Ugh, such a small fraction of what I used to do stupid cancer...
And I am...
And I do...
But I just can't
accept that I have cancer
Why June 10, 2015? 5+5=10 :)
Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!
That is a great post. And I am with you all the way. I'm still in some denial after 10 years. What?? I have what??? I had terrible GI issues too with rev. Then after I stopped for one cycle they weirdly got better. I still take immodium when I go out but I don't have the urgent call as before. I'm waiting on my new labs( in about 10 days. ), but the way I feel I think probably my neutrophils are tanking again.
ReplyDeleteOh the joys of this thing called cancer.
Hi Christina- thanks so much for checking in and letting me know your status too. We sound like twins in this stupid myeloma battle! Thanks for appreciating my twisted blog writing and I will check your blog out, if you are still updating. I wish you the very best with your battle, and please let me know how your labs went too. Amazing how we can "feel" when our ANC and immune system "tanks"... ugh :( Thank you for checking in! xoxo
DeleteOh Julie how I wish there was something I could say to encourage you. I am so sorry for the side effects you deal with every day and can understand why you just wanted to be able to go to a few key events in May ~ your pictures were so wonderful. The memorial service for Claudia looks so touching...the red dresses, the doves, the sunny day...wow what a way to honor her life. And your 30th commencement ceremony...now that is something to be proud of! Daily activities in the dirt...gotta love it! Now to attack that myeloma again and beat it back into submission. EZ and I were so encouraged at the recent IMF workshop we attended about the new monoclonal antibody therapies for relapsed MM. Paired with rev/dex they are showing great results, and they are very close to being approved by the FDA! Do you read Bill O'Halloran's blog, My Myeloma Journey? He also stated:
ReplyDelete"Promising results were presented for two of the leading monoclonal antibodies, elotuzomab and datatumumab. These two immunotherapies, both of which target the protein CD38, which appears on many MM cancer cells, are both headed for early approval by the FDA. These two drugs could become potential front line MM immunotherapies in the near future."
EZ and I also participated separately yesterday in video interviews for an unnamed pharmacutical company to give our opinions on various printed ads for one of the new immunotherapies they had labeled as Brand X...hopefully it is daratumumab and FDA approval is real close. The experts we heard definitely think anyone who has relapsed should participate in clinical trials. The science of myeloma now holds the key to individualizing treatment.
Hang in there, stay hopeful, and keep fighting...the future of treatment looks good! Love to you from Big EZ and I!
Hi sweet Linda! Thanks so much for being such a loyal blog follower and commenting as you do! And I see you updated yours too! So happy to see that, and I will go read your updates after commenting here :) I appreciate your positive comments above, and I sure do hope the brilliant researchers and medical professionals can get a handle on this stupid cancer... I'm just feeling so drained and would love the "magic pill" asap. I think EZ's magic was that he never went off of Rev maintenance, right? I wish him the very best and continued remission forever, so you two can enjoy your beautiful family for another 100 years! Glad you had a chance to take part in studies and interviews. I've done that too with some MM pals. So interesting what they ask and hopefully soon, we'll know what it's for. Happy summer, and love and hugs to you and EZ!!! xoxo
DeleteJulie, I'm sympathetic and empathetic about the lava flow GI issues and hate that it is curtailing and narrowing your life to such a degree. I know you've tried every remedy under the sun. Have you tried eating two or three Archway coconut macaroon cookies each day? I found this helped me tremendously. Evidently, a few years ago somebody on the People's Pharmacy website talked about it. A chemo nurse passed the suggestion on to me a couple of years ago when I was at wit's end. I eat three coconut macaroons vigilantly each day. When I travel they travel with me - they've been around the world and back. Best Wishes, Lovey
ReplyDeleteHi Lovey, yes our "lava GI club" here... ugh!!! Sometimes so predictable, other times not. And I love your macaroon suggestion as I love coconut!!!! My hubby went out and got me some macaroons after I read this, and I think I had seen this suggestion elsewhere too. What a tasty remedy this is, if in fact it works. I have gotten better about not delaying taking Imodium when I realize the volcano is not stopping ;) Cheers to coconut macaroons, and I wish you the very best in your battle too! xoxo
DeleteOk….June 10th? Now I get it!!!!!!!
ReplyDeleteI checked your blog on the 15th. I do seem to always know when it is a 5 day. My friend Julie might present an update. Have to admit that I didn't check on the 10th…..
Glad to hear you are doing ok…. But I do have a question. You are surrounded with your numbers. Can you actually tell that your numbers are way too high or way too low by the way you feel? Did you know before they told you that the numbers had "caught up" with you?????
The reason I ask…..
My mom has Alzheimer's as I have told you. She is 88 years old and seems to be in perfect health. The doctor comes to her and gives her that quick "home" checkup and I hear she is just fine. She takes no medication. She is great…except for her brain that is. But, she is completely covered with skin cancer. Has huge welts all down her arms and legs. Very nasty looking stuff. She is white, blue eyes, very blonde and she LOVES the sun. She spent her entire life in the sun, with the baby oil dripping, burning and pealing thousands and thousands of times. She used to spend eight hours a day in the 110 plus degree heat of Palm Desert for 15 years. People told her constantly to get out of the sun, and she went in more. So, the result is out of control skin cancer. I can't stop it. They always want me to take her to a dermatologist. What can be done with hundreds of welts? Nothing. It doesn't seem to bother her. I have them put lotion on to sooth it, and really she seems just fine. I don't know exactly the type of skin cancer. Many spots look very different, so I'm guessing a combination of several. It has gotten worse over the years. I try to keep her comfortable, happy, and pain free at 88 years old. I can't see starting treatment that will make her ill, or in pain, etc.
My point to all of this is that we really just don't know what it truly is. Is it on the skin surface? Has it gone inside? WHAT ARE THE NUMBERS????? She is happy. I see no harm at 88 years old.
So, here is my question to you. AND I DO REALIZE YOU ARE NOT 88 YEARS OLD!!!!! Have you ever considered just not worrying about the numbers for a month or two. Just forget the meds and just go about life and really enjoy it. Go on some amazing vacation and eat and eat and eat and run from that bathroom, not toward it. Just have the time of your life on some amazing fantasy. Or perhaps just enjoy going out to eat with family and friends. Enjoy whatever it is you want to for that day or week or month and just forget all about meds, doctors, etc. Just have fun and worry about it next month.
How would you feel as your numbers changed? Would you actually feel better without the meds, etc? Would it be the most amazing month of your life?
I never worry about my mom's numbers and it all seems fine. If we were to actually take a serious look at things, I'm positive we wouldn't like the results.
I guess I would love to see you just have the most glorious time this summer you have ever dreamed about. Have fun and forget those numbers that are so, so, negative in your life.
What would happen the next month when you really looked at them again? I obviously have no idea what I'm talking about. I just want to see you have a much deserved rest from it all. I just want…….. it to all go away…….. for you…..
Well, that is what I want for my bucket wish for this month. I want you to be happy!!!!! Ok…now I have said it. THAT IS WHAT I WANT.
DO YOU HEAR ME UNIVERSE?????
OK…getting off my soap box now.
Truly, I do hope you have a glorious summer. Have fun. Live each day to the fullest… and stay out of the bathroom…….
Happy Summer my dear friend!
Love,
Susan