These days my emotional state is so tied to my (very volatile) physical state, it can feel a little like a mood disorder. I was doing fine yesterday, tons of energy, optimistic as can be, when at suppertime I coughed and – POP! – the rib pain came searing back into my body and knocked me on my kiester.
Ah, pain. You exhausting and depressing thing. As if the reality of my illness and the difficulty I have breathing weren’t terrifying enough. As if I didn’t have enough going on with the coughing and headaches and auras and general weakness. No, we need to round it out with a little excruciating pain. Come on.
So I took one of the heavy painkillers I like to call Big Daddys last night so that I could sleep. I’m afraid of the Big Daddys because I know they’re highly addictive, and frankly I don’t need to add Pill Junkie to my current list of problems. And I also don’t want to be feeling so painless and groovy that I’m not able to connect to the people and world around me. So, until now, Big Daddy and I haven’t made each other’s acquaintance.
But the fact is I need sleep, and I need strength, and pain makes me frightened and depressed. So I called in Big Daddy. At bedtime, I popped one. And boy did it work! Blissful floaty pain-free sleep… for exactly 4 hours, at which point a coughing fit overtook me and I ended up in tears, sitting at the edge of the bed wheezing and shaking in the dark, while my husband rubbed my back and I tried to calm down enough to take another Big Daddy. And? Sweet sleep again… for a meagre 4 hours, when the coughing trauma was repeated, complete with tears and back-rub. And then, in the morning (this is the kicker) a hangover!! No, really, a bonafide fuzzy-headed hangover! Without the party! Like that’s fair. Obviously this whole pill-popping thing needs some fine-tuning. And Big Daddy may have the strength, but his stamina needs work.
Meanwhile, Dr. Detroit called with what should be amazingly fabulous news: it is possible that my spot in the study will open early and I could begin in a couple of weeks!
But before we go popping the champagne (or the Big Daddys) there is a catch. I felt renewed and improved following the vinorelbine last week, but 8 days later the symptoms have come crashing back – the coughing is worse, the pain has returned, the aura that shrank and shrank and shrank has begun to unshrink – and I am afraid that if I have to go 2 weeks without any treatment I will be back at the Brink. And nobody, least of all me, wants me going back to the Brink.
The idea of course is that the study would carry me far, far away from the Brink forever and happily ever after. But if I can’t make it to the study start day, there’s a flaw in the fairy tale. Even if I make it, I could be deemed too weak and thus rejected. I have no idea how bad things might get in two weeks, but if last night was scary, what shape will I be in 14 days from now? Or 21 days??
So, I want another vinorelbine treatment tomorrow. Even if it means waiting 3 weeks rather than 2 to begin the study. I reason that I went about 7 weeks without treatment and it did a lot of damage, so I need at least a couple of weeks of consecutive treatment to restore some strength before I do another chemo-fast in preparation for the clinical trial. But I actually have no idea if this is medically sound reasoning, so I’ve put it to Dr. Detroit via e-mail, and await her reply.
And, finally, as if that’s not enough drama for one post: my oncologist’s secretary called in some kind of massive favour and managed to get my brain MRI scheduled for tomorrow afternoon.
Well, at least it’s never dull around here.
Sorry to hear you are having a rough day, Leanne. I hope things look up again soon.
Thinking of you and admiring your spunk.
always with you, each day.
who would have thought that dull would be so desirable…every part of me is crossed for a lifetime of never ending dull moments coming your way, hang in there….remember “everything will be ok in the end and if its not ok its not the end”
SCxoxoxo
Dear Leanne: I truly hope that you will have a better night tonight, with or without Big Daddy, and that you will get through tomorrow OK. You should know that addiction is not an issue for people who need narcotics for pain control, if they take the meds as prescribed. The fuzzy, hungover feeling that sometimes accompanies their use, though, can be off-putting. I shall be thinking of you tomorrow as you go for your MRI, and, hopefully, for further vinorelbine.
Thinking of you and sending everything we’ve got!
Love Diane
Waiter, she’ll have the spaghetti (without meatballs) with a side order of vino (vinoelbine). A solid meal and and get you packing for Detroit. Stat!
lovelovelovelovelovelove
Ah ha, Nurse Gwen strikes again! So good to know I’m not on the road to addiction — although as my friend Franny said, eff it — rehab would be easy after all this. Nonetheless, it’s a comfort, esp as I took another BD this afternoon and felt MASSIVE relief, and was just astounded at how much more energy I have and optimism I’m capable of when I’m not in pain. Who knew?
Thanks so much everyone for checking in on me and sending the good vibes my way.
Oh — and a news flash: I got the OK from Dr. Detroit for chemo tomorrow! Hoorah! I’m raising that glass of “vino” in a toast to you all for the ongoing suport.
l.
Hello Leanne,
I’ll raise a glass with you and hope for the best. There’s a lot of love
around you. Sarah M.
My thoughts and strength are with you. Hope you have a good nights sleep. When I am awake at 3:00 am I will be thinking of you and sending you my good thoughts.
Come on, Motown, keep the good news coming!! I DO understand how absence of pain can make us even better people. In your case, you certainly deserve some relief, so enjoy it when you can. I, too, will continue to think of you throughout the night, and first thing in the morning, as I (and many) have been doing for weeks. Can’t wait for a positive MRI and a quicker approach to Detroit. Feel our collective hugs, Leanne.
Lucy K.
Never a dull moment is right. Good ghad, Leanne. The things you go through in the span of a few hours…
You’re on my mind constantly. I thank you for updating us all as frequently as you can. Tonight you’re in my prayers for a restful sleep. Love you so much. xoL
I STILL think you’re too tough to be taken down this easily!!!!
Who knew we’d all be cheering so hard for Detroit? Great news about the early spot and about the vino today.
Take care, Katie
Dear Leanne,
I have been reading your posts on and off since the day you started…You inspire me in so many ways…I lost my Mother to breast cancer 15 years ago at the age of 44. On Monday I found out my sister had a lump tested and it was confirmed that is was the dreaded “C” word. She goes in to remove on the 23rd…
Don’t know how to help, don’t know how to deal with it. How to support….
Your blog is what is helping me right now to see what the journey might bring forward.
Leanne, my love, you must be exhausted!!!!!!! I get exhausted just reading your blog and listening to friends describe your days and nights. I hate, hate, hate that you have to endure this nightmare. You will get through this! No one has fought a more courageous battle than you have! It is certainly a lesson to us all that you really do have to fight for your own recovery. Good luck tomorrow my sweet!
Hank XXXX
Hoping for restful nights and dull moments. Detroit is just around the corner.
Sending positive thoughts your way.
Gillian
Sending massive amounts of LOVE your way, Leanne, and affirming your perfect health every day. Your sense of humour is brilliant. I read this blog and get a laugh every time. That’s your gift to us.
This plan sounds good Leanne! I agree that another round of vinorelbine seems like the right thing to do, even if it means a bit later entry into the trial.
Despite all the hacking… things are looking up. Jennah wants to come and visit. Just say when!
Good wishes for a peaceful night, Leanne.
Leanne,
Sounds like a good plan. Can’t wait for you to get into that study!
Following your blog from Southern California and sending positive, warm thoughts your way.
Hi all – I thought I’d take the initiative to repost the details from Spawn of Doctors on the fundraising website again here, just to make sure the word is getting out:
There is a fundraising website ready to go. It will be updated with news of the fundraiser but already has a donation button set up and ready to go. Please visit:
http://www.canceriscrap.com
Please note that you do NOT need a PayPal account to donate. When you click donate, on the bottom of the page, it allows you to donate via credit card. Thanks for your support!!
You’ll make it to the trial Leanne. You have more strength than anyone I know. How you’ve managed to keep up your prolific posts through all of this is really remarkable. I’m thinking about you and sending lots of love and positive thoughts. Stacey xo