APRIL 9, 2014

Psychiatric Consult

Based on the downward emotional spiral I have been on for the past, let's say, 2 weeks, I knew that I needed help in getting ME back.  I spoke about this in my last post, which did help me to clarify things in my mind, and helped me to make some realizations.

As I've said in the past, blogging/journaling helps me enormously.  It allows me to get thoughts, ideas, concerns, fears, worries, etc. out of my head, and helps me to process them.  I actually went back yesterday and re-read my last post.  Believe it or not, I didn't remember writing a lot of it, which was kind of scary.  But, reading it again helped me to figure out what I needed to do.

I need professional help.  Therefore, I called CTCA to start the process.  They now have a psychiatrist on staff, and I was able to get in to see her yesterday for a consult.

Accepting that you need help and going in for it, talking about it with a stranger, trying to make sure you are honest but don't sound crazy.....it is tough.  But, I desperately need help.

I guess I'll start with what I've been noticing, and what prompted the phone call.

Lately, I have been feeling like I am not myself.  I can't concentrate on anything for more than a few minutes.  I got several books from the library.  Haven't been able to finish most of them.

I have been having the worst case of chemo brain I've ever experienced.  I will be talking with Levi or someone else, and the word or thought that I just had is gone.  Completely gone.  Or, I can feel the word, but it's just out of reach and I can't quite tell you exactly what it is I'm trying to convey.  I feel utterly stupid so much of the time right now.

I am completely overreacting to things; case in point...I generally don't get too upset when the kids spill something, or break something, or do some other kid-thing that is a mistake.  Sunday night, Julia broke a candle container in the bathroom.  It was maybe a $5 glass jar, and with the stones and candle, the entire thing may have been $12.  I completely, utterly lost my shit.  And, as it was happening, I had this part of me that was almost outside of myself, gawking at what I was saying and doing, wondering why the hell I was making such a big deal out of something so small.  I am also finding myself snapping at the kids, at Levi, for things that I usually wouldn't even blink an eye at.  And, again, at these times, I can't stop myself, but I also have this part of me that is just dumbstruck at my overreaction.

I haven't been sleeping well, at all, for several weeks.  Some nights, it takes me forever to fall asleep.  Last night, I didn't fall asleep until well after midnight.  Other nights, I'll fall asleep but wake up several times for no reason.  Sometimes, when I'm laying in bed trying to get to sleep, my brain is running in a hundred different directions.  The thoughts are not productive, either.  One night, I had a 45 minute conversation in my head about wanting to pain the walls in the house, and went on and on about color, texture, why I should try that color, wouldn't grey be nice, should I try a blue-grey, wouldn't that match Julia's eyes, maybe I should go with more of a green-grey, maybe I could do alternating wall colors, would that go with the couch, maybe I should recover the couch, how about it I painted the ceiling.....ARGH!  I haven't had a good, restful sleep in too many weeks to count.  That isn't healthy.

So, I went to the consult yesterday.  I am so glad that I did.  She and I talked about how much I have been through, what my concerns are, etc.  It was good to have someone validate what I'm feeling and experiencing, and to tell me that it's normal.  There was such a sense of relief when she said that.

I'll try to convey what she told me yesterday.  In laymen's terms, she explained that the brain has a finite amount of neuron receptors (I think that's what she said) to work with, and they need chemicals to work properly (seratonin, etc.).  With the amount of shit I have been through over the past, well, 2+ years, she said that my brain is basically running on empty, and it's scraping the bottom of the barrel to find fuel to work with.  She likened my brain to a race car....if you have an Indy 500 race car that is used to running on racing fuel to keep going fast all the time (i.e., to make my brain function normally in spite of all the crap going on), it's eventually going to run out.  Right now, my brain is like that race car, but now, it's running on old, leaded fuel.  It can work, for a short time, but in the long run, it's unhealthy and unsafe.

So, how to fix it?  We talked about several options, and decided to start with an SSIR called Celexa.  Here is some information about that - it's just a starting point, and we are going to try it out for a few weeks to see if I see a difference.  If not, there are other things we can try.  I haven't looked at the side effects, or the reasons why it will or won't work.  I'm leaving this up to her.  I don't want to clog my brain up with useless information and more things to worry about.

She did give me some information about short and long-term side effects.  Short term - some mild nausea at first, but that should go away.  I may feel slightly tired, but again, that should go away.  Long term - there may be some sexual side effects (I won't go into those too much, especially because I know some folks from work read this....).  Once my brain chemicals restabilize, there may also be a sense of emotional numbness....I may not feel down and depressed anymore, but I may also not be able to feel joy.  She mentioned them only because she wanted me to be aware that, if I start to see these things occur 6-8n months down the road, I should bring them to her attention.  Other than that, it seemed to be the right decision.

She also put me on a drug to help me sleep calledTemazepam (name brand Restoril).  I tried taking one pill last night (dosing is for 1-2 per night).  It didn't help.  Well, let me rephrase that.  I felt like I wanted to sleep, but was on the edge of falling asleep but needed a push to get there.  It sucked.  I'm going to try two tonight, and if that doesn't help, I'm to call her tomorrow to get on something else.

I feel some relief knowing that I have a medical professional helping me get through this.  I explained to her yesterday that I feel like, for so long, I have been like a quilt.  There are all of these pieces of me that I've been able to sew together, strongly, tightly bound together, making up who I am.  Lately, though, I feel like those bonds are gone, and I am trying to hold my life together my short, weak threads.  It's terrifying.

I just don't feel like me.  I've noticed that my kids have seen it - they've actually asked if I'm okay.  That, to me, is the worst part.  So, I will gladly take these pills, and pray to the pharmaceutical gods that this kicks in quickly and helps me get back to being the me that I so desperately miss.

Comments:

Joan B said...

i am so glad you are comfortable seeking help and blogging about it. it must be incredibly hard to fight and fight just to feel well and you finally get a break and bam, your brain goes into high drive. I hope you feel better soon as really, you have been through more than most do in a lifetime and deserve a break!!

ps. curious to see if the drugs help sleeping. I pretty much get no more than 4 hours a night on average and it sucks!!

April 9, 2014 at 4:49 PM

 Laura Loe said...

Michelle...
I am so glad that you sought help when you saw the signs that you needed help. I saw Dr Hygebeli (sp) for a long time while I was at CTCA and I do not know what I would have done without him and Marcia. I really hope the meds she gave you will help you. I was on Restoril at one time and really did not like it...it gave me headaches. Dr Hygebeli had me on Trazidone and that stuff woorks great... it knocks me out. If I am at the computer and it is kicking in I will start dropping the mouse. I cannot force myself to stay awake. If the restoril doesn't work you might want to mention Trazidone.

I wish for you a good nights sleep and much happiness ahead.

Laura

April 10, 2014 at 10:44 AM

APRIL 4, 2014

I try not to complain much, but....

...this new treatment for the Erbitux rash is taking me down.  Well, it's taking my skin down.  I'm not sure how much more of it I can handle.

Bear with me if this doesn't make sense.  I am hoping that, if I get these thoughts out of my head, I'll be able to sleep better.  I haven't been able to get to sleep on time lately, at all, and I think a good brain dump is going to help.  There may be many posts in the next few days as I try to work through things.  Please don't feel obligated to read my blabbering....this may not make much sense.  Sorry in advance.  If you do stick with me, I'll try to make it make sense, as if we were sitting on a beach, with a warm breeze gently sweeping by us, and as if we both had a delicious adult beverage in hand, watching the sunset over a gorgeous body of water.  I'm not picky - you can pick the location.  :)

As you may remember, when I first went on the Erbitux back in December, my docs put me on a routine of an antibiotic (Doxycycline) to help offeset the outbreak, a topical hydrocortisone cream to help cut down on the redness and swelling, and a homeopathic lotion (calendula cream) to help combat the dryness.  I was also using gentle soaps to clean my face and body, and lots of lotions.

It worked, but at this last appointment, the team recommended that it might be time to switch things up a bit.  Apparently, the body can become tolerant and used to the meds if you're on them for a long while.  So, we figured we would shock the system (gently) and try an acne medication called Epiduo.  It's a fairly new medication, meant to target acne with two medications.  It's fairly strong, and was recommended that I try to use it once daily. every other day at first.

From the Epiduo website:
Typical side effects associated with short-term and long-term use of Epiduo Gel are redness, scaling, dryness, stinging and burning where applied.

Yup.  I've got them all.

Redness - check.  I was instructed to put this med on wherever there is a rash...my focus is on my face, neck, upper torso, upper back and shoulders.  I keep getting asked where I was on vacation, since it looks like I have a sunburn, particularly on my neck.

Scaling - I don't have scaling, like the Little Mermaid does.  :)  I do have flaking....a ridiculous amount of flaking, around my mouth and on my neck.  My poor neck is so dry and flaky that it looks like I'm 115 years old.  Very disturbing.

Dryness - Yup.  All over.  I know I live in a desert, but I am pretty sure I would win in a dryness competition.  And, it hasn't rained here in many months.  Still....winner!

Stinging and burning - I can't describe to you the amount of pain and burning this causes.  I dread nighttime, and to a lesser extent, the morning.  My nightly ablutions include wiping the makeup off, washing my face, then applying a mixture of this Epiduo and aloe vera gel (50/50%, to help ease my skin into the regiment) to my face and neck.  Right now, I am applying the Epiduo full-force on my shoulders, torso, and back.  They don't seem to be as badly effected as my neck and face....here's hoping that doesn't change.

I don't know if I can properly describe to you the level of stinging and burning and pain that my poor face is going through right now.  Here's what I think it happening.

In normal people, someone using this who's only complication is the acne they are trying to get rid of, these side effects might be tolerable, welcome even.  I had acne as a kid.  Pretty bad.  I remember using some OTC stuff to try to get rid of it, and they stung.  Sometimes, it hurt enough to being tears to your eyes momentarily.  But, in a few moments, it was over, and you could go on with your day.

My poor skin is already pissed off.  Not at me, I hope.  After all, this is all for a good cause, and I'm sure my skin wants to live as much as I do.  My skin has been on quite a roller coaster...this Erbitux is an "easy" chemo, in that it doesn't cause much fatigue, no nausea, and very few other side effects; this is the good part.  The bad part is that this rash happens....and, there is some research that shows that the rash is a physical sign that the chemotherapy is working.  Well, on me?  It must be kicking cancer's ass all over the place.  My poor skin, from top to middle, is angry.  Just angry.  Red, irritated, swollen in parts.  It's tender to the touch - taking a shower can, at times, bring me to tears (usually when it's pounding against my upper back for a long time, like when I shave my legs...).  But, I am willing to go through it.  I WANT to go through it.  We'll find out next week (CT scan on Thursday) if it's working, but the tumor markers all seem to indicate that we may have stabilized things.  So, is all of this worth it?

You bet your sweet ass.

Anyways, back to my complaining.  My skin is mad at me.  Now, after 4 months of a routine that was bearable, we switched it up.  And, my already vulnerable skin now has this barrage of medicines being thrown at it, and I think the normal side effects of this Epiduo are magnified.  In addition to the side effects of the medication, my Erbitux rash is on the increase, due to peak today or tomorrow.  Generally, what happens is that I get the chemo last Friday, and then the rash starts to kick in Wednesday or Thursday after, peaking over the weekend.  Meaning today, tomorrow and Sunday.

Yeah.  You can imagine how things look.

I am going to bite the bullet and post a no-makeup picture.  This is difficult for me to do, but since I know there are people who look to my blog for help with their own treatment, I feel like honesty is the best policy.  So, here's a picture of me, this morning, as I sit here.  It's not pretty.  And, I apologize.  But, this is as real as it gets, people.

What isn't showing here is the redness, the dryness.  The area around my mouth is dry and flaking.  My poor neck is as red as anything.  It's just awful.

So, what's the point of this complaining?  Nothing.  I needed to get it off my chest, and I think my poor husband is sick of hearing me talk about it.  He isn't here to hear me in the morning, when cursing is the best way I've found to deal with the burning and stinging.  He has to listen to me moan at night, when I'm trying to clean my face, then put meds on it, then try to find something moisturizing enough that doesn't sting.  I have found one thing that works.  I need to order more.  Everything else?  I literally have to talk myself into using anything.  Even my homeopathic stuff hurts.

I think my skin is in such a state of transition (apparently, the new med helps your skin regenerate itself quickly, thus being able to clear up the acne from the inside and the outside), and this is all normal.  I talked with my pharmacist, and she said that between the Erbitux rash and the Epiduo, my skin will be like this for a while.  So, I have to just stick it out.

But, I'll be honest.  At night, when I have to brace myself to put stuff on my face, and I'm laying in bed and my face and neck are still stinging and burning....it gets real hard to want to do it again the next day.

I am going to give this a few more weeks.  If I don't see a change in the rash, and this doesn't ease up at all, I am going to ask for another solution.

I want to look and feel pretty.  Remember the CA trip we were supposed to go on back on October that got postponed because I went into the hospital?  Well, it's been rescheduled and is coming up soon.  I want to be pretty for that.  I want to look pretty, and more importantly, I want to FEEL pretty.  I'm hoping we are on that road.

I guess the old adage is true - beauty is pain.

Man....I hate that.
**********************************
I also wanted to talk about assumptions that people make when they see me.  It takes some inherent strength to not kill some of the people who ask me about my skin, or who presume to know what's happening and then make sure they tell me all about what worked for them, and they could help me get it because they sell it....

Grrrr.

Here's what I teach my kids, and what I want others to remember.

Looks are important.  Anyone who tells you differently is wrong.  People absolutely judge you based on how you look.  It may not be fair, and it may not be right, but facts are facts.  Whether you like it or not, people's first impression of you is based solely on how you look.  If you choose to go into, say, Walmart dressed in pajama bottoms, slippers, your hair in a mess, tank top (sans bra) on top, and makeup that has clearly been on since yesterday - yeah, I'm going to judge you.  Not fair, but there you go.

I am seeing a lot of different reactions to my "new look" as I'm out and about.  Some give me the "poor you" look, which I'm assuming means that it's sad to see a 30-something lady with acne.  Some ask me what the sunburn is from.  I have even had women approach me in stores, telling me that they have products for that "adult acne" that they could sell me, which works much better because it has the root of some tree from Mars or something, and it worked wonders on a friend of a friend who had the world's worst case of documented acne, and now she's working as a model in Hollywood.  (Bullshit.)

I will talk with these folks.  I usually gauge my response to the person on how they approach me.  Anyone looking to sell me something - I'm on chemotherapy and I can't use anything that isn't approved by my doctors.  I've had that conversation continue, to where the person asks (again and again) to get the name of my doctor so we (yes, we) can go in together to make him allow me to use that.  I then tell her, sometimes politely, no, and walk away.  I've had others just stare....I will ask them if something is wrong.  They often look away ashamed at being caught gawking, and that's the end of it.  I've also had people genuinely ask me if I needed some aloe for my sunburn.  That time, I gave her a 30-second spiel about what I'm going through, and thank her for her concern.

I guess what I'm trying to say is that it's super important not to judge someone based on looks.  We are going to - that's human nature.  But, please don't stare.  Teach your children not to stare.  If you have a question, ask.  For me, I use those moments as a teaching tool.

I try to look as normal as possible.  I do not go out into public without my makeup on.  I'm just not comfortable going out without my cover, and that's okay.  I'm trying to come to terms with the acne on my shoulders and back, which is becoming more and more visible as the warm weather hits here.  My shopping has been mostly looking for clothes that cover those areas, both for vanity reasons and to keep my skin covered from the sun.

I think the point of this blabbering is to try to come to terms with how I feel about what's happening, and to see if I can get it out of my head and then process it better.  This is hard.  Your looks are your signature to the world, especially for women...we want to look good.  I know I do.  I want to look pretty for me.  I want to look good for my kids and my husband.

The Erbitux is ease to deal with.  Mostly.  I keep reminding myself that this one awful side effect is much easier to deal with than the constant fatigue and nausea.  And, it is.  But, emotionally, this skin stuff is hard on the psyche.

Back when I shaved my head two years ago, I lost my sense of self, but I was able to redefine who I was by using makeup and earrings to look more like me.  I am trying to do that, but it's really hard this time around.  I don't know why.  I have days where it seems like this is nothing but a minor blip.  Lately, with this new medication, it feels like this is a huge hurdle, and I just don't know if I can get over it.

I'm not stopping the Erbitux.  It's working - we think.  Confirmation next week after the CT scan may help my emotional stability.  I hope so.  This is pretty draining.

But, I'll keep going.  I have to.  No choice.

Now, here's hoping that getting this all out of my head will make today better.  Jules is off to Girl Scout camp, and Kevin has a Spring Fair at school tonight that I volunteered for.  I want to look and feel pretty.  I am going to jump onto youtube, look at some makeup tips, and see if I can put them to good use.

Thanks for sticking with me during this useless complaint session.  I'll try to be much more upbeat next time.  :)

Comments:

JeanaChurch said...

You are beautiful! Don't think for one moment that you aren't. The people who can't see that don't matter anyway. Keep your head up Sunshine!

April 4, 2014 at 9:32 AM

 Joan Bardee said...

I'm sorry! Complain away, you deserve it. In all honesty, I thought your picture would be worse. But it doesn't matter what I see, all that matters is how you feel. AACK. Hope relief comes soon. Oh, and you need to develop some zingers for these unbelievably rude people.

Try making believe you cannot hear them. :)

April 4, 2014 at 10:15 AM

 Carol Pack Urban said...

Michelle, you are still a beautiful woman who is loved by so many. I am sorry this acne rash is happening and especially that it's so painful! I hope it goes away soon.

April 4, 2014 at 11:20 AM

 Kristi H said...

Michelle ~ No need to apologize for a rant ~ I can soooo relate to everything you said. I am a "looks" fiend, always have been... my Momma made me that way. When I was 13 yrs old, she had me in the bathroom, teaching/making me learn how to curl and fix my hair & make-up... because, "You have to look pretty when you go out". As an adult, I have loosened up a little bit, going out every now and then with just lipstick and a ponytail... but you're right, the world does use Looks as a means of judging you. Sad, but very true. It's true, the pretty girl gets all the free drinks and the good looking guy gets Prom King... But as I've grown older I learned that what other people think doesn't matter. You know why your face is messed up right now, you know it's because of the medicine... Overlook the stares and comments from strangers. They are ignorant to what you're gong through. You are beautiful... I know it sucks, but I know you will get though it - without choking a random stranger in the grocery store *grin*...Tie a big red Lucille Ball bow around your head and go anywhere you want to with a big "screw 'em" smile on your face!!! (and think of what a beautiful lesson you are teaching your daughter, on how to deal with rude people). You are on a mission, you are smart and you are beautiful... Keep your eyes on the prize, don't get distracted by glances from onlookers.

BIG HUGS from far away,
Kristi

April 4, 2014 at 9:59 PM

 drj said...

I'm on Erbitux right now and I feel your pain. The new acne medicine sounds like hell. My doctor has me applying a topical antibiotic lotion twice a day (in addition to the doxy) and it really works wonders - I know because I have the rash all over my scalp and can't get the lotion there! Its called clindamycin. Maybe you can try that instead? I also found a very very gentle makeup remover that manages not to burn or sting my skin. Its called caudalie cleansing water. I bought it at nordstrom's. Hang in there!

April 5, 2014 at 8:17 AM

 awarebear said...

Hi there,

The rash is a GOOD thing as it does indicate that the Erbitux is working. Docs are actually worried when they don't see rash. Over the course of the past 10 weeks I have had two bad reactions post Erbitux infusion, First one on week 3 was horrible, entire top of my head felt like crown of thorns. Frozen washclothes straight from freezer would be hot to the touch after just 5 minutes on the top of my head. Quick action by my doc (on Pres day) got me on a prednisone pack, (24 mg first day, then 20,16, 12 etc. Major help!! Now staying at 10mg day for maintenance.

Craziest thing is now the rash (two weeks from the last final treatment) just showed up on the insides of both arms and cruising down my stomach.

But read about Erbitux and it's a fascinating drug. It's helping us. Really it is!

Been using Aveena Oatmeal soap daily to help.

April 12, 2014 at 9:53 AM

MARCH 31, 2014

Stable is my new favorite word

I had another lab draw on Thursday.  This one was meant to determine if I needed the blasted Neupogen shot (which I did).  It was also my sort-of-monthly CEA check.  Needless to say, I was nervous.

I've gotten to the point where I look at the results of the lab work online before I go into the meeting with the care team.  It helps me to process the results prior to the appointment, and that way, I am not focused on a number....I am, instead, focused on what they are saying.  It also helps me to feel like I have some semblence of control in a situation that is decidedly out of my control.

My CEA came back at 7.8.  I was ecstatic.  I was sitting in the main hallway (I think they call it the Gallery at CTCA), talking with my friend Stephanie, and got the good news.  My CEA has been stable (within 1 point) for three months now.

I was over the moon.  Absolutely over the moon.  Shaking, crying, laughing....it was an amazing moment, and I am so glad she was there to share it with me.

Going in to see the care team was easier, too.  I knew what I was facing, and I could focus on them and their thoughts, rather than worrying about when they were going to hand me the lab work results so I could find out where I was headed.

Good news.  Good news indeed.  We decided to change up my arsenal for combating the rash this week.  There may be a bit of medicine fatigue happening, and so they took me off of my antibiotic and hydrocortisone stuff and put me on Epiduo, which is actually an acne cream.  I will let you know how it works - right now, it is definitely having some effect, because it is causing some dryness, some sensitivity, and some tenderness on my skin.  I held off on using it last night (they said I could start out using it every other day)....and, I am hoping to give my skin a break.  I expect tonight will suck when I put it on, but hey - if it works....I am all for it.

What else?  I had chemo on Friday.  No big deal.  I am actually driving myself to and from chemo now, if you can believe that.  It's crazy when I think about it, but in a good way.

I went to the gym for the first time in too long today.  I didn't do much - 22 minutes at a slow pace on the stationary bike.  I want to try to work and build up my stamina.  In addition to that, I have also been having issues with sleeping the past few nights.  I am hoping that I can wear my body down and force it to sleep.  I am certainly tired enough.  I just haven't been able to shut my brain down.  It was on a roll last night, just jumping from random topic to random topic.  It was driving me nuts. I took an Ambien.  Didn't help.  I then resorted to taking an Ativan (which finally helped), but it made me so tired this morning I almost missed getting the kids to school.  *sigh*  We'll see how this progresses.

I think that's about it.  We scheduled my CT scan for next Thursday, with results on Friday, unless they post them online and I look at them first.  I think I am going to hold off and wait until Friday's appointment to get results.  I can look into things too much and misinterpret what is said, and thus, freak myself out.  I am not as concerned (today) as I could be.  I may get super nervous next week, but it helps knowing that my CEA has stabilized.  Admittedly, I would prefer it stabilize under 3 (which would put me in the normal range), but I'll take this.

For now.  :)

Comments:

Carol Pack Urban said...

Awesome news!

March 31, 2014 at 3:21 PM

 Joan B said...

excellent!!!!!!

April 1, 2014 at 1:57 AM

MARCH 25, 2014

Insurance Issues, and my 2 yr anniversary of being a stage 4 survivor

I'm lucky.  In almost 6 years of fighting this disease, I have had very few issues with my insurance companies.  For the most part, they have covered procedures, medications, and doctor's visits with little or no complaints.

Until now.

Over the past few weeks, as I have been refilling my myriad of medications, I have noticed a few wonky things happening with my co-pays.  It finally came to a head on Friday, when I refilled two medications that I have been taking for well over a year.  Based on previous (say, last month's) refills, I knew what the co-pays should be.  When I picked the scripts up at the CTCA pharmacy, the prices came out to $110 for one, and $190.40 for another drug.

My co-pay should have been, at the most, $40 for both.  And, based on previous refills, they should have been $0.  Totally covered.

I am so lucky, though.  I have an amazing team of pharmacy specialists and techs at CTCA, all of whom a) know me by name, b) know my meds better than I do, and c) are willing to spend the time and energy with me to walk me through how things work, what I need to tell the insurance company when I call them, and are happy to give me copies of the paperwork I needed to prove my case.

Yesterday morning, I spent well over an hour on the phone with my insurance company (I will not stoop to naming the company, for reasons I'll disclose in a moment).  The first lady I spoke with (who, by the way, sounded like she was about 15) wasn't very helpful at all.  She listened to me for a moment, interrupted me, spoke to me condescendingly, then told me that the only thing she could do for me was create a ticket and they would get back to me within 7 business days.  When I asked what I was supposed to do about the $300.40 script bill, I was told that I needed to pay it, and that if I was right (which she clearly didn't think I was...), they would reimburse me.  Eventually.

That didn't sit well with me.  I explained to her that I needed these meds.  She continued her (likely) scripted response.  I let her give me the *bleeping* ticket number, then I asked for a manager.  15 minutes later, I was connected to Laura.

Laura continued with the scripted responses, until I started yelling.  I tried to tell them quietly, but they wouldn't listen.  I basically told her to shut up and hear me out.  I think I shocked her, but I didn't really care.  I explained to her that I knew I had reached my first, 100% out of pocket limit, and I was pretty sure that I had already reached my secondary, $5,000 secondary out-of-pocket limit.  Her response, which I understand could certainly be the case for another patient, was this:  a large medical claim was submitted, and processed originally as counting towards my out-of-pocket deductibles.  After, though, the insurance company negotiated the cost of said medical procedure down, and therefore the out-of-pocket amount was renegotiated.  She even referenced a bill in January for $39,000 (likely an infusion) and said that this was the cause of the confusion.  Based on the information I had, and what she was seeing, they had negotiated my bills down to $703.09.

*sigh*

This was when I got angry and started yelling.  I explained (once I got her to shut up and I calmed down) that I have been going through chemotherapy since the beginning of January.  I explained that this is a bi-weekly process.  I told her that, in addition, my son had broken his arm and required x-rays and a cast.  I also told her to look at my medications list, which includes Xeloda (quite expensive....I think it's like a $400 co-pay for a single round) and several expensive pain medications.

Thanks to the information given to me by my amazing friends in my pharmacy, I was able to give her specific meds and dates of refills to look at.  She was finally able to see what I was seeing, and her demeanor went from lots of sighing and many attempts to placate me, to an understanding, peer-to-peer conversation where we were able to finally come to some agreements.

She was able to put a release on the two meds that I needed, to give them to me for a $0 co-pay, so I was able to pick them up from CTCA yesterday afternoon.  In addition to that, the audit that the first girl referenced was put in as a rush.

I got a call this morning.  I was right.  They were wrong.  Somehow, my deductible (both of them) were completely reset, and the system was incorrectly showing that I owed my entire out-of-pocket again.  They have revised the system, and I am now back to where I thought I was.

Thank goodness.

I wanted to put this on here, as I know that many other people have many more issues with insurance than I have had.  I have been lucky - I will openly admit it.  I have a team of people at CTCA that work the issues for me, and don't make me do the work of fighting with the insurance company.  This was the first time an issue came up that I had to deal with.  And I have been with CTCA for two years, next month.

I think what I want to make sure I tell you all is that it is so important to go into a conversation like that armed with knowledge.  I had gone to the insurance company's website and saw that, based on my profile, I had reached my max out-of-pocket, and the amount they were asking me to pay for my scripts was reflecting as an overage on my part.  I was able to go to them with the information from my pharmacy, so I could reference specifics to show them what I was talking about.  I was able to give them dates of infusions and other procedures, so that they could understand why I was calling in the first place.

Making these calls isn't easy.  As I said, I am lucky.  I had the knowledge, but I also had the strength to make these calls.  It breaks my heart to think about the patients who are sick, tired, and physically unable to make these calls to fight for what they are entitled to.  I can only hope that those people have caregivers who are willing to put on the gloves and go into the ring for them.  (Is that a mixed metaphor?  Oh well...)

I am really pleased with the speed at which my insurance company resolved this issue, and I am grateful to them for moving this along.  All in all, I have to say that this wasn't nearly as painful as it could have been.

************************
I just realized that I let my 2-year stage 4 diagnosisanniversary go by without acknowledging it.  I did so on facebook last week, but I didn't say anything about it here.  I'm not sure what I am supposed to say or do on days like this.  It seems like a paradox, to be happy to celebrate something so awful and life-changing.  And yet, it is a happy celebration.  I am alive to celebrate it.  I am proud to be a stage 4 survivor.  I'll admit that I wish I didn't have to be here, and I would be much happier if I was looking towards this year as my 5-year anniversary of completing treatment the first time, and looking at being cured.

That won't ever happen with me.  And, that's okay.

Well, not okay.  It's not okay that I won't ever be in remission again (likely), or that I will never be cured.  It is not okay that there aren't more options for people like me, and that there isn't a possibility of a cure.  But, it's okay that I am here.

It's my lot in life.  It's who I am, and it's made me the person I am today.

Cancer hasn't defined me.  It has refined me.  I am who I am, but cancer has shown me who I can be.  Who I want to be.

Cancer hasn't given me anything except tumors and cancerous lymph nodes and a need to take medications for the rest of my life.

I want to say that it has given me a myriad of things.  But, in hindsight, it hasn't.  I have used this experience, and how I respond to it, to make myself a better version of Michelle.  Does that make sense?

This experience (the journey, mind you...not the cancer) has given me many things.  It has shown me that I have strength beyond reason.  It has shown me where I want to spend my time and energy.  It has given me new appreciation of basic things, like the beauty in a sunset, or the laughter of my children.  It has taken away relationships that maybe, in hindsight, didn't give me what I needed.  It has also led me to people that enhance my life, and provide me with the things I need to show me the way.

I have heard a lot of people say that the cancer has made them a better person.  I used to be one of them.  But, as I sit here typing this, I realize that, by saying that, I am giving the cancer some control, some gratitude, some power.  I don't want that.  The cancer is a powerless thing that is using my body as a host, trying to grow and become bigger and stronger and greater than me.  I won't let that happen.  The experiences that I have had, as a result of dealing with this monster, have been what has made me into this version of myself.

So, I will honor the fact that, 24 months ago, I was diagnosed with stage 4 colon cancer.  It started me on a path that I dread, but that I walk proudly and with my head held high.  I am proud of the woman I am today.  I am proud of the wife I am, the mother I am, the sister, daughter, aunt, and friend that I've become.  I have a lot more growing to do, many improvements that can be made to make me into a more refined version of me.  Each infusion I go through, each doctor's visit I have, each day I wake up.....they make me better.

It isn't the cancer that has made me a better person.  It's the journey.

And I am so grateful that you all are on it with me.  Here's to many, many more years on this path.  

Comments:

john said...

Hi Michelle. I'm John from the Netherlands. I followed your blog because my lovely wife of more than 40 years has been struggling with this disease for years. I'm sorry to hear about your problems with the insurance. I my country you only pay a first small amount out of your own pocket. It's a shame you have to worry about your bills being paid.
Never give up hope to deal with this illness for good.
In August 2010 the doctor discovered a tumor in my wife's rectum. Radiotherapy and xeloda followed. Dec 2010 surgery and a colostoma.July 2011 after loss of blood a small tumor in the vagina was found. An operation, doctors said was impossible. Further investigation showed that there were problems in the lungs too.A second opinion gave the same outcome and they told us there was no hope. Then Xeloda and Oxyplatin started for a period of 6 months which became 8 because of her condition. CEA level dropped first but increased at the end and there was already talk of new chemo after a rest period of a couple of months. But miraculously CEA dropped again and continued, all without chemo. In the spring of 2013 doctors found out that there were no inseminations any more in the lungs. And we found an other surgeon who could do the job. Not an easy operation. It's called total exenteration. During an operation of nine hours all female parts were removed and now there was a second stoma. At first she was very weak but things are going a lot better now. Cea dropped to only 1. In the end of April there will be new scans..

March 30, 2014 at 1:13 PM

 Drea Tyrell said...

That situation was badly handled by the insurance company, for sure. It’s a good thing your pharmacists are really good at what they do, and have probably had the same problem with another client before, so they know how to deal with these kinds of situation. Going in with those information at hand certainly helped you to get a faster response from the call, instead of being put off for days, if not weeks. Thank you for sharing your experience. At least now, people with the same problem would know what to do before making that call.

Drea Tyrell | Anaheim Hills

June 27, 2014 at 2:01 PM

MARCH 24, 2014

Busy Couple of Weeks!

As you probably guessed, based on my lack of updates, my last couple of weeks have been SUPER busy!  I apologize for not getting to this, but I suppose, in some way, it's a good thing that I haven't had anything major to update you all on!  :)

So, I'll kind of start with the activities that have kept me away from here.

Two weekend ago, I was asked to take part in the Home Run For Life at a Spring Training game.  Phoenix has the Cactus League for the MLB, which means that many of the major league teams do their Spring Training here.  We have several stadiums all over the valley, and CTCA has partnered up with the one in Goodyear, AZ.  During many of the games, CTCA features a patient to walk or run the bases in an event called the "Home Run For Life."  And, I was asked to take part in it - again.  I did it last year, but I am pretty sure that I forgot to post about it.  Woops!

Anyways, we (my family, my parents, and some good friends) all got to go to the game, and between 2nd and 3rd innings, my family and parents and I walked down to the field.  I stood at home plate, and the announcer read a quick bio of me, which I had written while I was in infusion the day prior.  The crowd was super supportive, cheering me on as the announcer sent me on my way.  Along the first base line, the Oakland A's stood, cheering me on and high-five-ing me as I walked to first base.  I ran from first to second and then to third, waving to my friends and family up in the outfield, and then met up with the Cincinnati Reds on the third base line, where they cheered me along to home plate.  At home plate, my family and my parents met me, along with some folks from CTCA.  It was awesome.  At the end, the manager from the Reds presented me with a certificate, indicating that I was an honorary Red for the day.

As I walked off the field, the crowd cheered me on and as I walked up the stairs from the field, a lady asked me to sign her A's hat (she had many of the players signatures on there)....it was so weird and yet, so cool!  As we walked back to the pavilion where the CTCA crowd stood, another lady asked for a picture with me.  It was definitely a unique experience.  The kids loved it - and, it meant so much to me to have them go through this wonderful experience with me.

The rest of the day was spent enjoying good food and America's pasttime, and lots of chatting with friends.  We were exhausted, in the best way possible, by Sunday night.

What else have I been doing?  Quite a bit with CTCA.  I was asked to take part in a stakeholder symposium on colon cancer, and to talk about my experience as a patient.  As they introduced me, they pulled up a picture of my kids on the projector, which started the waterworks, and really defined how my short talk went.  Overall, I think it had a positive impact and will hopefully (and most importantly) influence stakeholders and their families to get tested for colon cancer.

I also took part in an amazing event at CTCA called "Celebrate Life,"  Each year, the hospitals hold a spectacular event honoring those patients (active treatment, remission, cured...everyone!) that have been treating with them for five years.  As this was CTCA's 5th year of being open, the number of celebrants got much bigger.  This year, they had 35 patients to celebrate with!  I was asked to be an ambassador for two celebrants, which was truly an honor.  I was there to help make sure they were at events on time, and to help them out in any way I could.  In all honesty, it was a humbling experience, and truly, truly my honor.

This weekend, I took part in a Survivorship Symposium, put on by the local AZ chapter of the Colon Cancer Alliance.  I learned a lot, got to see some friends who I have been missing, and made some new connections.  They hope to make this an annual event, and I know it will be a success each year.  They did a great job with bringing in speakers who had a passion for the cause, who spoke from the heart and who brought a wonderful perspective to the symposium.

Goodness....my fingers are tired just from all of that. You can imagine how tired I was, in a wonderful way, after each event.  This month, being Colon Cancer Awareness Month, has been busy, but I am so proud of the work being done and so excited to see how this movement has grown.  There has been a ton of activity all over the country, and people are becoming less afraid to talk about this disease.  Such a change from almost 6 years ago, when I was first diagnosed.  I think back to how afraid I was, how alone I was.  And now?  I have an amazing network of survivors and professionals that I can ask questions, talk with, and just feel that sense of community that is so essential to survivorship.

I am still on treatment, Xeloda (week on, week off) and Erbitux every two weeks.  The rash is still there, and has extended almost completely down my back now.  My care manager was talking about potentially holding off chemo for a week, to give my body (and my skin) time to heal a bit more.  We'll see how that plays out.  Meanwhile, I am continuing to go on with life, and to pursue some exciting things that I can't speak of yet, but have potential to be amazing.  :)

Comments:

Laura Loe said...

Michelle, It is so wonderful to see you glowing while keeping so busy!! You are Celebrating Life my friend and I love it!

March 25, 2014 at 2:03 PM