Thursday, October 24, 2013

What Has To Be Done

Today, I start chemo again.

My insurance finally approved the cancer regimen I had for frontline chemo, and right now I am kicked back receiving pre- meds prior to starting carbo/taxol.

The pre-meds they give seem to make me cold. When I arrived, this room seemed to be the perfect temperature. An hour later, I've pulled out my blanket because I'm freezing. It's the meds - they're room temperature and it chills us.

The massive dose of Benedryl I was given is making me seriously sleepy. If I stop sounding coherent that's why.  They have just started the Taxol, which most likely will take 3 hours.  Since it has been so long since my last treatment, I'm supposed to pay attention to make sure I don't have a reaction to it. It's rare but it happens. I just had a hot flash and had to remind myself that those are normal.

I brought my Kindle, my phone and a book to occupy myself. But I have a feeling that I'm going to be asleep. Maybe not too long because I just started Shadow of the Hegemon and I really want to get it read.

Yup. I fell asleep for an hour and a half. I'm trying to wake up enough so when it's time to head home I can drive my car home instead of leaving it at my best friend's house overnight. no reaction which is a good think. 10 days from now my hair will start falling out again. I keep reminding myself to get a picture of my cute sassy do before it's gone.

Next up will be the carboplatin, which is what we're hoping I'm not resistant to. That will only take 30 minutes or so. I'm getting 80% of a normal dose in hopes it won't do such a number on my bone marrow.

So many have sent me support via Facebook today. To be honest, I'm always surprised and a bit humbled by what I read there. I understand in a way. Before I got sick, I never thought I'd handle it well. I hoped I would, but you never really know.  Once it happened, I just did what I had to do. And I just keep doing it. It's not anything special.  It's just doing what has to be done. Trust me - if it were you, you'd do the same. I discovered a long time ago that we're stronger than we think. I assure you - YOU are stronger than you think.  When the tough times come most of us just get 'er done.

We just started the carbo and I'm on the home stretch. I'll be home in an hour or so, and hoping that the nausea is being held off by both the pre-meds and the Zofran I'll be taking 3 times a day. I'm increasing my stool softener for the next few days so I don't get "bound up" as my grandmother used to say. It's the side effect of the pre-meds that no one talks about. The last thing I need is something turning into a partial bowel obstruction. TMI - I know. But I had to find out the hard way. I don't want that for anyone else.

So far, it's been pretty easy. It's so different than the first chemo of frontline treatment. Then I was in the hospital, after discovering I had blood clots in both lungs. This time comparatively speaking, is easy peasy.  I'm so much stronger. And just as determined to beat this crap.

Because that's what has to be done.

Tuesday, October 22, 2013

Not The Life I Expected

So here's the deal.

I'm definitely recurring - my CA-125 is up to 231.  Way outside of normal range.  Ascites is developing pretty severely.  Yesterday I had 3 liters drained off of my abdomen.  I am averaging about 90 mls a day in what we drain out of the space around my left lung.

Yet I have not yet started chemo.  Because of my insurance.

Look - I know they have to run a business.  And part of that is to have doctors on staff to review things like requests for approval for chemo regimens.  But they need to have doctors that are actually up on the latest developments in the various cancer treatments, and they sure as hell shouldn't be second-guessing on of the top researchers in the field.

They certainly shouldn't take nine days to deny that regimen.  And if they are going to deny that regimen, then they shouldn't take another week to approve the same regimen I was on the first time I had chemo - or request further clinical information.  Honestly folks - my doctor isn't requesting more chemo so that I can lose weight.  It's because my cancer is returning. 

That's where we are.  As of today, my insurance company still has not approved carbo/taxol for my treatment.  My CA-125 has been rising since September, and on October 2nd, nodules were felt during an exam.  Cancer is happily growing inside of me for going on two months now, and because of some random doctor at the insurance company, I don't know how much longer it will continue to run rampant.  My fear is that my most recent CT scan still didn't show any tumors, but just the ascites building, and that they will try to use that as an excuse to delay treatment.  My oncology nurse says I'm scheduled for chemo on Thursday.  I hope they approve it by then.  If it hasn't been approved by the end of business today, tomorrow I will get the name of the person they are dealing with and start calling every hour asking them what the hold up is.  Because folks - this is my life we're talking about here.

Now - before anyone tries to use this as a political issue - stop right now.  This is a health care issue, and there is no doubt in my mind that I would have had this same thing come up 6 months ago.  This is what happens when a business - such as insurance companies - decide to make health care decisions.  While I understand that they feel they are trying to control costs, they are doing so the wrong way.  I am convinced that these types of decisions cost LIVES.  There are people who will not fight with the insurance companies when this happens - I'm not one of them.  But how many people die because some general doctor makes this type of decision?  Health care decisions should be between the patient and doctor.  No one else.  NO ONE ELSE. 

It boggles my mind that this is my life now.  That I am literally going to be fighting an insurance company for my life.  How the hell did this happen?  This isn't the life I was supposed to have.  I'm supposed to be enjoying working my last four and a half years before I can retire from my job and start enjoying grandbabies.  I'm supposed to be getting my garden and flower beds ready for winter, not making sure that I'm walking around enough to prevent blood clots, and getting fluid drained off of my abdomen.   I should be still trying to convince my husband we should take a trip to Cancun, not hoping that I'll be able to go in the early spring depending on where I am with chemo treatment!

Seriously y'all - I've been had.

I can't change it.  Yet sometimes it still seems surreal.  It's hard to accept at times that I have cancer.  Cancer!  Yet I do.  Hmph.

So.  That's where we are.  I'm feeling much better since they drained the ascites off yesterday, a little sore (because ow - having a needle stuck in your side to drain fluid is ouchy even with lidocaine!).  I'm trying to not be too scared, and I'm relieved that nothing yet is showing on the scan.  But it's only a matter of time, so we need to get this show on the road.  Again - any thoughts, prayers, good vibes, etc are appreciated.    Y'all have no idea how much your love and support means to me. 

(And no - I haven't gotten any more senior citizen discounts.  Heh)

Monday, October 14, 2013

The Queen of Denial...

I've talked about my vanity before.  How I've struggled to accept the changes that cancer has brought to my appearance, my body, my self-image.  I might have mentioned once or a hundred times that my hair grew back in gray, and what isn't grey is nearly black.  And that I didn't care for it much at all.

I've enjoyed having thick hair.  Thick hair with a pretty good curl to it.  Yes - I finally got my chemo curls after all.  I just have had a hard time having gray hair.  I've gone back and forth for weeks about whether I was going to just get used to being gray-headed, or go ahead and dye my hair again.  On one hand, there's a lot to be said for growing old gracefully.  On the other hand - I'm only 48, and I'm not so sure I want to spend the rest of what life I have looking 10 years older than I really am. 

Last week I made an appointment with my hair dresser.  I wanted to get my wild locks under some kind of control - as my hair has grown back in, it has grown at different rates, leaving me with odd lengths around my head.  I intended on getting her to even things out, and let me rock a cute sassy spiky do - like I never had the guts to do back in the Before.  I still hadn't made up my mind whether or not I was going to get her to dye it for me.  After all - I'm starting back on chemo soon, and at the very least my hair will thin, if not all fall out completely. 

But then, at lunch last Friday, the cute little cashier at the local Rosa's Cantina gave me the senior citizen's discount.  On the one day when not only was I meeting my best friend for lunch, but at the next table were a couple of old friends from high school.

Seriously?  I'm FORTY-EIGHT.  I know I had a head of grey hair, but really? 

As I posted on Facebook, I was insulted that this kid (who obviously must think everyone over 40 is ancient) thought I qualified for a senior citizen discount, but not so insulted that I gave them their 79 cents back.  It's the least they could do after making me feel old.  In front of my friends!  Hmph.  (Not that my friends didn't enjoy it.  I'm pretty sure my humiliation made their day, if their laughter were anything to judge by.)

Needless to say, when I made it to the hair dressers' later that day, I most certainly did have her dye my hair.  Take that, 18 year old boy.  Not to mention former classmates and alleged best friend.

Was it an extravagance?  Absolutely.  But you know what?  I feel more like myself.  I see myself in the mirror and I no longer ask "who is that old woman?"  I don't know what grandma is doing in my house.  At a time when my belly is filling up more and more with ascites every day, I have no problem splurging a little to feel better about myself as I start a new chemo journey. 

So tonight as I sit here blogging while trying to drink my berry flavored contrast (which let's be honest here - tastes like liquid chalk with a couple of berries mixed in - blech), I'm happy with my dark brown hair with the blonde highlights and the spiky do.  When I go in to get my latest CT scan, and labs, and see my oncologist to discuss what our new treatment plan will be, I go in with the false confidence of a woman who has colored her hair.  A woman who is trying to fool herself into thinking that nothing has really changed.

Even though everything has. But I can live with that. 

Sure beats the alternative.

(And for all those who have already found the grace to accept their gray hair, I am so impressed by you.  One of these days I will join you.  Just...not yet.  Not quite yet.  I choose to live in the land of denial a wee bit longer)

Friday, October 11, 2013

The Next Step

October is a weird month for me now.

A year ago from this week, I was in the process of confirming what I already knew in my heart - that I had ovarian cancer.  I was getting ultrasounds, blood tests, CTs, and paracentesis.  My husband knew, and I told my boss so that I could explain why I was having to take so much time off all of sudden, but I didn't tell anyone else. 

Those were lonely, scary weeks.  I did my best to go on about my life as usual - I worked, went to football games, had lunch with my friends when I could, but didn't really tell them what was going on with me.  By about the middle of the month or so, I had been formally diagnosed with cancer, although the doctor couldn't tell me definitively it was ovarian until I had surgery.  But I knew. 

October is Breast Cancer Awareness Month.  It's a huge big to-do across the national.  I'm pretty sure we all aware that breast cancer exists, and that it kills a ridiculous amount of women each year.

I knew.

I also knew in my heart I had cancer.  Once I was officially diagnosed, I remember telling my friends.  Telling my sons.  Calling and telling my parents.  Then slowly letting people I work with know what was going on, and trying to get them prepared for my being out for a few weeks.

Each time I hear of a new pink activity, I wonder why there wasn't more awareness around for ovarian cancer.  Why I didn't hear anything about it for the entire month of September - which is Ovarian Cancer Awareness Month.  Maybe if I had, I might have gone to the doctor a little earlier.  I don't know - nor will I ever know - if a month made that much difference in my staging.  When I think about when I started getting short of breath, I think it might have.

This year, I made sure the folks in my small community heard about the most basic symptoms of ovarian cancer in September.  And even though it's October, I'll still be stashing symptom cards around town.

As I said previously, we're all pretty aware of breast cancer.  We're aware of how to do breast exams, to get our yearly mammogram after we hit 40.  If all those pink ribbons raised funds towards *research* into a cure and better treatments, I would be happier.  That's what is really needed.  Research. Awareness has been achieved for that type of cancer.  Now the funds need to be funneled towards research - not the foundation's CEO's $700K salary.  Just sayin'.

Because research into any type of cancer can lead to a cure - or treatment - for another type of cancer.  The taxol that I will most likely be starting again next week was discovered while doing breast cancer research.  So let the research abound!  Right now we have a bunch of over-paid polititians holding our government - and many cancer research projects - hostage over political ideology.  I don't care which side you're on - or if you're a middle-of-the-roader as I am.  But it is ridiculous that much needed research is being held up because someone isn't getting their way.  They all need to grow the flock up.

(and that concludes my political rant for the year)(well - at least for now)

Navigating October will be weird this year - as I said - it's the month of my diagnosis and surgery.  I'm flooded with memories of last year every day - made even more surreal as I am recurring this year.  Ascites is beginning to  build up again.  My belly is starting to distend, and be uncomfortable.  I'm short of breath again - not quite as bad as last year, but certainly not the freedom of breath I had even a month ago.  I'm constantly flooded with fear that I will revert to that person who was so ill last November - the one who couldn't go up stairs, or walk very far because she was so weak.  The one who literally had to spend the day after chemo in bed because she was so sick.  I don't want to go there again. 

I was enjoying feeling better, you know?

So far I've managed to keep the anxiety attacks to a manageable level.  I don't have to take anything for them, and other than distracting me from work sometimes, they haven't incapacitated me.  But they are there.  With every twinge, every new ache, they are there.  I keep praying that they'll go away - that I'll find a graceful way to deal with all this without freaking out.  This blog and talking to my husband have been the best ways to keep me calm and focused. But my calm now is nothing to compared to what calm used to mean to me.

Everything changed.  Everything.

I know my blogs aren't all that fun to read lately.  They are full of my fear and dread, and talk about my symptoms and what's ahead.  That's what fills the mind of someone having a recurrence apparently.  It doesn't mean that that's all my life is about.  I'm still doing what I can to enjoy life.  I'm not giving up by any means.  But I write not just for myself, but for any other ovarian cancer patient out there, or their caregivers, or their loved ones - so they know that what they feel is normal.  I wish (oh man - do I ever!) it could be a blog about an ovarian cancer patient in full remission for months on end.  Apparently that isn't the story I'm meant to tell.  So I tell the story I've been given. 

And look forward to the happy ending next year ;-)

Sunday, October 06, 2013

Finding Silver Linings

This is my 100th post.

It's only taken me over 6 years to get to 100!  Well - that and cancer.  Let's face it, I didn't start blogging on a regular basis again until I started fighting cancer. 

Last week, my husband and I went down to Houston for a consult at MD Anderson.  We were hoping that I might qualify for a clinical trial - we had always said if I recurred, we would go there.  So - we did.

To be honest, down deep, I hoped I would go down there, and the doctor would tell me "Don't worry!  We'll cure you!"  I know it wasn't a reasonable hope, but there it is.  Needless to say, that wasn't what he said.  He did tell us that all of their clinical trials at the moment required coming to MD Anderson weekly.  We are 9 hours away from Houston, so that wasn't an option for us.  So he told us about several different second line chemo options, and gave us his recommendation for which one he would put me on if I was being treated down there.  He is supposed to send that to my oncologist here, and I meet with him in a week or so.

I have very mixed feelings about going back on chemo.  On one hand, I'm ready to start doing something before the cancer gets any worse.  My ascites in my abdomen is starting back up, and the fluid around my left lung is increasing.  The doctor in Houston was able to actually feel nodules during my physical exam.  I don't like sitting here knowing that it's growing unchecked at the moment, gnawing away at my insides like a rat that's found its way into a bag of grain.

That doesn't mean that I'm excited about being on chemo again.  Although this new regimen is supposed to be less harsh on my body - not as much nausea, I might not even lose my hair although it may thin - fatigue is supposed to be a big side effect.  I don't feel like I have that much energy right now, so that's a worry.  And any nausea is going to suck.

I try to look for silver linings.  While nausea sucks, maybe then I'll lose some of this weight I've gained back since I was able to eat everything again.  My hair came in so thick that a little thinning will probably just make it look like it did before I lost it all.  One of the new chemo drugs is supposed to work well on ascites, so that should go away quickly, and maybe I'll even get to where I can get this last catheter out. 

Most of all, I can continue to fight this lousy disease off.  Maybe - because I'm Stage IV - I can't be cured.  But as long as I can fight, I can live with stable disease.  I can learn to live with cancer. 

On the home front, my youngest was nominated for homecoming court this year.  While he wasn't elected king, we still got a kick out of him being nominated.  He looked very handsome at the pep rally last week, and he managed to make his mama both cry and laugh within two minutes.  I'm so glad I'm still here to enjoy his senior year. I'm bummed however, that every. of the pictures I took of him at the pep rally were blurry.  My only hope is that the mom of the girl he was paired with will share her pictures!

The garden is winding down.  I'm happy to report that I indeed get 1st place in the biggest watermelon contest at the fair this year.  Our entry was 40 pounds, and I'm already plotting how to grow one even bigger next year.  But there is one goal met, eh?  We didn't get as many potatoes this year as we did last year, but we did get some.  The black eyed peas are just about dead, and the green beans are debating how much longer they're willing to put out.  Our cantaloupes, after producing a ridiculous amount of large tasty melons, suddenly died out in about 3 days...some sort of powdery mildew looking stuff wiped them out.  I almost ate so much cantaloupe that I got sick of it.  Almost.  I've always loved cantaloupe.  We did have to share with friends - when you are picking 7 or 8 large cantaloupe a day, there's no way you can eat it all. 

We still have a few watermelons we need to eat, and our peas and snow peas are growing quite well.  We noticed yesterday that the peas are blooming and making peas, so I'm really looking forward to having fresh peas in a few weeks.  If you've never had fresh peas from the garden, you have no idea what you're missing!

So - wish me luck as I start this whole crazy battle up again.  I'll take any prayers, good wishes, happy thoughts and positive energy you can spare.  Because I'm not ready to give up by any means.

I'm determined I'm going to live with cancer.  Whether cancer likes that or not.  Bring it, bitch. 

I ain't skeered.  (much)