"Life's challenges are not supposed to paralyze you; they're gifts given to help you discover who you are."

Thursday, June 12, 2014

Change in attitude

Since my last post was a real downer, I wanted to share some more upbeat thoughts on this lovely summer day.
Shortly after I whined about feeling alone, my extended family (my wonderful sisters, beautiful nieces, favorite nephew and family, my mom and dad, etc) surprised me by showing up at my door on a holiday weekend--snacks, beverages and lunch in hand. I was so happy to see them all, I quickly forgave them for the lack of warning (they knew I would cook and clean had I known they were coming). Many of them drove 4+ hours one way and back that day; what a gift.

I've made a conscious decision to stop comparing my story to other cancer stories on the distorted world of the internet.  Duh.  What was I thinking?

Many other good things going on around me as well:
  • My little great nephew (son of #1 nephew above) came out of chemo for medulloblastoma with a clear scan, after an initial terrifying read.  So happy for them! What a horrible road for a young family.
  • My teenager is now legal to drive, and has hit the road. Scary, but less hauling her around for me.  And I'm so grateful for every milestone I get to participate in.  
  • The hubby may finally be able to walk again soon, finally! after a long period of healing a broken leg. Looking forward to having him mobile again :)
  • My latest scan came back with reduced SUV numbers/activity levels with no spread to other areas.  So even thought I felt like crap and was sure the cancer was all over in my back and stomach, turns out I'm not dying anytime soon.
    • Bad news is that current chemo routine continues.  Suck.
  • Summer has finally come to the midwest.  The skies are a beautiful shade of blue with a brilliant white fluffy contrast.  It's warm and wonderful after a ridiculously ugly winter. I'm grilling pork chops and eating watermelon and root beer floats. Life is good!
Cheers,
~D.

Monday, May 19, 2014

Gut reaction

Cisplatin and navelbine are kicking my ass--via my guts.
As usual, the body being sick kicks the brain into overdrive.
My head is spinning. I don't know how to carry on my 'normal' life feeling this shitty.
I don't know how to say 'enough already' when I have a little girl begging me to stay.
I don't know how to deal with a spouse having his own medical issues.
I need help, but there is no one is this bucket of crap with me.  I feel alone with no one to turn to.
I read the happy stories of cancer patients surrounded by support and I get angry.  Where is my support?  Why do I have to do this alone? 
Pity, party of one...

Thursday, April 3, 2014

Too good to be true

So Avastin was cool...virtually no side effects--none worthy of complaining about anyway.
But alas, my good fortune was not to be. Turns out the patient friendly chemo was allowing the tumors in my liver to grow and venture off into new areas.
Kind of a kick in the teeth.  I had gotten to the point of thinking "hey, I can do this forever..."  and now I'm right back to dreading the whole scene again.  So sick of this.  So sick of cancer. I must go on. Ugh.
Anyone know anything about navelbine?  My next great adventure.

Monday, February 17, 2014

Thankful

After several months of doing the insurance company shuffle: attempting to get approval, being denied, and following multiple levels of appeal, my health insurance company (with a little encouragement from an external medical review board) has finally approved the use of a new chemo drug for me.  Avastin is of a different drug 'family' so to speak; I'll spare you the medical/scientific details because I would no doubt get it wrong anyway.

Suffice to say that I was so looking forward to getting on this drug for several reasons.  First and foremost:  the side effects are virtually non-existent.  No more chest/esophogeal issues, no nausea, no body aches, no rock bottom white blood counts, no shots to boost WBC, no steroids, no more anti- nausea drugs and thus no violent swings from constipation to crapping constantly.  Perhaps I'll even begin to feel my feet again.  Sad to admit that at this point, the little tendril of hope that this drug may actually stop the growth of the cancer is a distant second reason I'm glad to be going down a new path. 

So for now I'll just be thankful that I caught this break.  At least what I perceive to be a break at this point anyway.  Just when I thought I couldn't go on, I have a light in my tunnel again. Thanks, big guy, for looking out for me.

Tuesday, January 14, 2014

Update, schmupdate

I get the occasional request for "updates", and I'm not sure how to respond. 
I really can't think of a standard answer....where to start?
I could go into detail about how shitty I feel for days after chemo; could talk about the weird pressure in my throat and chest that is begging me to stop the madness. 
I could talk about how this whole pain in the ass routine is going to be with me for the rest of my life, or at least until I throw up the STOP sign.
I could talk about the latest scan results, or the latest battle with the insurance company.

But I really don't want to.  The whole business gives me a bad taste in my mouth. Why would I want to savor it? I don't want to go over it again, because you see, these "updates" are not really news--they are just the new normal of my life. 
I have nothing more interesting to say than the dopey people who post about how best to clean your hardwood floors or make your windows shine.
This cancer crap is just boring, routine stuff that I'd rather not repeat.  Rather not talk about.  Rather not write about. Guess that makes me worthless as a cancer blogger, eh?  Might be time to hang it up entirely since I spend so much time avoiding it.

So instead I answer with all the bluntness I can muster.  There is no update. My disease is terminal.  We all deal with it as needed, when we're forced to. It's just so much easier to avoid it entirely.  I'm too damn busy living day to day to come up with anything profound.

Tuesday, November 19, 2013

Sweet Dreams

So it seems I have this love/hate relationship with my bed lately.  I'm often dead tired by the end of the day, and sleep seems like a blessed escape, but the minute I crawl into bed and get ready to sleep some switch flips in my brain and I'm mentally wide awake.  There are few things in life more frustrating than not being able to get to sleep even when you're tired.  Laying there watching the minutes tick by on the alarm clock, all I can think about is how tired I'm going to be the next day if I don't get some damn sleep soon. And of course, there are lots of thoughts that creep to the surface in the wee hours that I normally thump down in the light of day. So I've started dreading going to bed.

The preceding sentences have been nothing short of a justification for abusing my new nighttime drug combo of choice:  Advil PM and Lorazepam. 
I admit that because I think it's contributing to the wealth of dreams that finally come when I now fall asleep--deep and drugged.  They are always pleasant dreams.  Maybe this is a blessing sent to cancer patients everywhere....your life is chaos, you feel like crap, but your nights will be full of laughter and flouncing around on rolling green hills in the sunshine.
My daughter is there--smiling and laughing and looking like she is about seven or eight again.  No teenage moodiness, no arguments.  My husband is there--helpful and happy and looking like we're on the best vacation ever.  My job is there, but there is meaning and purpose to having a career again.

Life is good in my dreams.  I feel light and carefree; cancer doesn't cloud the horizon at all.  When I wake up, that feeling stays for just a fleeting minute before being replaced by my reality.

Sunday, September 15, 2013

Here we go again

This week brought with it a visit to a new gynecologic cancer clinic --this time at the U of M.  After my last, somewhat confrontational appt with my own oncologist, she encouraged me to get a second opinion at the Mayo or at the U to "satisfy myself and/or my family that there aren't options we're not pursuing".  I didn't bother to remind her that I had already been to the Mayo....shouldn't she know this?
So I forced myself to march into yet another medical setting and start over with my story
(in 3 minutes or less) with a medical resident who would in turn relate it to the doctor (in 2 minutes or less), only to have both of them return to the room and basically ask me why I was there.  What questions did I have for them? Uh, gee--well, can you do SOMETHING to save my life?  What about pelvic exenteration?  No?  Well ok then, how about just removing the damn "source area"?  If you can remove a cervix, why not the vaginal cuff?  No?  Well, ok then, how about more precise radiation?  No?  Can you do some kind of dance to the warrior gods that will make this little problem I have go away?  No? Ok, well how about you just kick me in the teeth and tell me to go home and die? OK, sure.  On my way out, the good doc looked at me with this overwhelming look of PITY and told me to have a good day.  None for me, thanks.
In all fairness, he seemed like a nice enough guy....actually answered all my questions in English as opposed to medi-speak. Explained how the body "remembers" radiation, so it's not like starting over, it's cumulative--and the pelvic tissue can only take so much before the damage itself becomes life threatening to other organs. Explained that there was reason for optimism re: length of life in that I had a relatively long period of time before recurrence. Explained how no oncologist would recommend surgery that wasn't going to HEAL the patient. And I am beyond healing. Maybe if I hear it enough times, from enough different doctors, it will eventually sink in.

It made me wonder if they often have to deal with desperate people, such as myself...not really ready to die, not really able to grasp or accept the facts because I feel perfectly healthy, excepting some chemo side effects occasionally kicking my ass.
Speaking of which, my upper lip has decided to randomly swell up to the size of a basketball.  Interesting the weird impact of chemo drugs on the body's immune system.  I very closely resemble Daffy Duck. We've named it The Duck Bill. Funny, although it's hard to breathe with your upper lip blocking your nostrils. Nothing more steroids can't resolve... but I digress.

I feel somewhat helpless. I want to find people in my same situation, but I don't know where to find them.  I wonder if there are others in this same state of limbo, trying to figure out how to deal with the terminal diagnosis while still living a "normal" life.

I also feel strangely vulnerable, which I hate. I want to go back to being strong and independent, not sucked into this medical vortex of insecurity that I never wanted to be a part of.  Fucking cancer.