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