4 Years Cancer Free and counting!

As of Monday October 24th, I am 4 years cancer free. 

Wow!

How amazing is that?

I spent half of this week in Philadelphia, PA and a Society of Women Engineers Conference.  What an empowering week it has been. 

I got to meet another Integral Group engineer from our Vancouver office.  What an amazing young woman!  Meeting people like her makes me feel so much better about our future.  She is incredibly intelligent and inspiring.  I hope to live up to her example some day. 

We attended some incredible talks and walked the job fair floor speaking with the young people we met.  It was a truly uplifting experience.  I am definitely going to recommend we recruit from SWE next year. 

I stayed pretty low key until last night when I finally went out to dinner.  I had 4 amazing young women with me.  We talked about engineering and how much adventure they had ahead of them.  We spoke about their respective engineering majors and what the wanted to do after college.  I told them what I do and what my company is about.  It was a fabulous evening.  I gave them my card and asked them to feel free to contact me with questions about anything. 

So back to the topic of being Cancer Free!

I almost can't believe it has been 4 years.  I remember at the end of September in 2012 I was competing on my office Innsbrook Corporate Games team and found a lump in my upper right arm very near the original site of my mole that proved to be Melanoma 2.5 years prior.  I made a panicky call to my surgical oncologist's office for an appointment but they couldn't get me in right away.  I cried on his secretary's shoulder until she got me in the day he got back from vacation.  He took one look at my arm, felt the lump and said, "don't leave until the pathology folks come down to get a sample,"  then he left.  Just 2 hours later I got the call from Dr. Neifeld confirming my worst fear.  I remember calling Mom and Dad to tell them.  Mom got off of the phone and looked up flights and was in Richmond within 2 days.  We went round and round with the insurance company.  Dr. Neifeld argued with them multiple times.  I cried and Mom finally said to get the damn scan, the best one for my kind of cancer and we would deal with the cost later.  Mom and I had a great month and a half together before my surgery.  God I loved having her with me.  I picked her up at the airport with Abby, my Great Dane, in tow.  We drove north to Maryland to see some friends of mine.  That was one of the best weekends we could have asked for.  Mom got to meet some new friends and we had an amazing time.  Mom got to eat the first baguette in years that weekend.  My friend Laura is also gluten intolerant and had gone to a gluten free bakery in Alexandria where they have mastered really good bread.  Mom was in heaven!  (Laura - My mother always loved you for that leftover baguette.  She stretched it out for 3 more meals.) 

For those who don't know my Mom, she is my very favorite person in the world.  I miss her terribly.  I can't wait to see her and Dad in a few weeks.  Sadly Mom may not know me when I get there.  you see she has Alzheimer's with Lewey Body Dementia.  A most insidious disease combination.  Alzheimer's is bad enough, but toss in the other and it takes the mind so quickly.  Just 4 years ago Mom was great.  She worried about memory loss but she wasn't diagnosed yet and was fully functional.  She hasn't been in a home for more than 2 years and her mind and body are failing at an alarming rate. 

So, back to having my mom with me for more than a month.  She got me through surgery like a champion.  She made me chicken soup after the surgery.  I love my mother's soup.  We cooked and laughed together.  We took day trips and had an amazing time.  I miss her so much.  I hated to see her go back home but I know she missed Dad and he missed her too.  Another thing I really love is that they have always had such a strong relationship.  Dad didn't like to travel like mom did.  He had no problem letting her travel when she wanted to.  His trust in her was complete, as was hers for him.  I wish I could find something like what they have.  Their Love is beautiful to behold.

So, back to being cancer free.  I know I am all over the place here, but you'll just have to forgive me for it. 

January after my surgery I joined a study at the Medical College of Virginia.  Mom was against it as it was more than a year long and she wanted me to live a full life and just move on from the cancer.  Unfortunately I couldn't move on without doing something preventative.  This was round two for me and once you have round two, you really want to do something to make sure it doesn't come back.  Also the tumor was in a lymph node so the chance of yet another reoccurrence was quite high.  I was terrified of doing nothing.  After all I had done nothing for 2.5 years, look what that got me?

I met Dr. Poklepovic his nurse, Maria Quigley around the first of January of 2013.  just a few tests later and I was accepted into the study.  I was randomized into the into the high dose of interferon

I went into my first treatment January 14th, 2013.  If you look back to my first posts in this blog, you can see how things went.  Treatment was an adventure to say the least.  I also firmly believe it was the best thing I could have done for myself. 

While immunotherapy wasn't a picnic, I made it through and I am so glad I did it.  I met some amazing people along the way.  I learned a lot about my limits and I feel stronger than I have ever felt in my life.  I am still working to get my endurance back up to where it was before treatment though.  There is always room to improve.

this time next year I will be having a party to celebrate being cured.  I'll be able to donate blood for the first time since 2009.  I plan on making an appointment to donate October 24th next year.  I can't wait!

Love and hugs for everyone!
Brenda

I know, I know.  I haven't posted in many long months.  I am a terrible person, sue me.  Life has kind of gotten in the way, I've been worried about my folks, and my brothers, my brother's wife and kids, and aunts, and uncles, and cousins, and friends.  The list really does go on.  Plus there is a small amount of depression associated with all of that worry and the overwhelming feeling that I can't get it all done.  I feel a bit disconnected from my family.  I live so far away and I miss them all.  I am working on it.  I'm getting back in contact with my therapist.  I am slowly learning that I don't have to handle everything on my own.  It is a surprisingly difficult lesson to learn.

To anyone out there dealing with health or medical crisis and having to simultaneously deal with insurance;

GET A CASE MANAGER!  I can not stress this enough.  Usually these people come from a nursing background so they have a pretty good idea of what you are going through.  They understand the medical jargon and have been in the insurance industry long enough to know who to call to get things resolved.

Since I changed companies in 2014 I’ve had a different insurance company.  No kidding, change companies = change in insurance.  Who knew?

For those new to this blog, feel free to cruise back through to see what it is like to walk blindly through cancer treatment with the best medical staff in the free world.  Seriously, these folks are amazing! 

O.K. back on target.

I spent the better part of the last few weeks trying to get my insurance company to stop fucking up my CT scans.  You'd think it wouldn't be so difficult as they happen every 6 months like clockwork.  I get 5 scans each time.  They consist of neck, chest, abdomen, pelvis, and upper right extremity - read right arm.

 

Pok orders the same scans he has been ordering for the past 4+ years.  Since I've been with Integral Group, I love my company and the work we do, I've had United Healthcare Insurance.  They have failed to approve all of my scans by the scan date.  There is always one damn scan that gets hung up in the system.  Twice I've had to return for that last scan the following week.  This means 4 hours in the hospital waiting for the barium solution to be absorbed, get an IV installed, ride the CT machine with contrast pumped into my veins.  The whole thing takes around 4 hours give or take half an hour.  It really depends on how backed up they are. 

 

You can imagine having to take off half a day in the midst of a busy schedule full of deadlines.  Everyone has deadlines, everyone needs to work to pay the bills.  I am lucky in that my bosses are cool with me having to take off twice-yearly to get checked out.  This would be so much worse if I didn't work with cool and understanding people.  Yeah, I get it.  Not everyone is as awesomely lucky like me.  I know you all wish you were, but I've got to say I am blessed in that way.

 

The last series of scans I had was mid-July.  I get there and was informed that my upper right extremity had not yet been approved.  I could stay and get the other scans and they would try to get the insurance company on the line to get that last order approved.  This has happened for my last 4 appointments.  Two years running it has been the same problem.  So I got a bit frustrated and called the insurance company with no result other than added frustration. 

 

I then called my HR department who got me in touch with another insurance person who asked me some really stupid questions  and after being transferred a few times, getting really ticked off and yelling at the trees behind the building and generally being a Grumpy Gus, and probably irritating a few insurance customer service reps, I was finally assigned a Nurse Case Manager.  Thank you Marissa for getting me hooked up!  Again, I have to give a shout out to my HR Maven.  She pulled out her special cocktail and got me my first ever Nurse Case Manager!  I finally feel like this could actually be fixed. 

 

I should have had a case manager when dealing with Anthem on the PET Scan debacle of 2012.  Had I only known then what I know now! 

 

She called me last week and we chatted.  I told her how long this has been going on and she asked a few not so stupid questions and said she would call me back today. 

 

My case manager is named Robin and she is really nice by the way.

Today we spent the morning speaking with a variety of people with UHC, who then finally transferred us to CareCore.  (If you go to their website they are really part of Evi-L-Core)  We were then passed around a time or two to get high enough up the food chain to find out what was what.  Sadly their computer disconnected me and Robin had to call me back after she got some more information out of them.  A few things are happening to the CT orders on their end.

 

1.  They don't have my full record, so they have no idea why my Dr. wants these scans.  They are subcontracted to handle the approvals for scans without full knowledge of the patient's medical history.  Seems kind of dumb to have someone review orders for scans without knowing why, doesn't it? 

2.  My Dr. needs to call, or have someone from his office call with additional information in lieu of faxing it in.  Apparently Fax's sit on the fax machine and go nowhere.  Why even have a fax machine then?  They can't use E-mail as private patient information is being sent.  So now my Dr. has to sit on the phone waiting in a que for a rep to pick up his call to take down information and give it to whoever is reviewing his request. 

 

It really is a wonder that anything gets done at all with all of the bureaucracy imposed by insurance companies is murky to say the least.  Equally troubling is that every insurance company does things differently.  Hey, lets see if we can screw the medical world by requiring this information a little differently this week?  Oh, hey, those guys are doing this too?  Lets really screw with them by adding this step!

 

Robin asked me to do 2 things before our call next week;

The first of which is to find out what information is being requested for the unapproved scan, and then call the benefits folks for my insurance company and let them know that I am part of a clinical trial.  Sweet, I can do that. 

 

I sent an e-mail to my Dr. and his Nurse, see below for excerpts from said e-mail.  I've removed the information that could be stolen and used by people with nefarious intent, I hope.  (I hope no people with nefarious intent read this blog.  This blog is meant for nice people to get a look at what I went through with that Bitch Melanoma.  Maybe I can help someone with what they are going through, or at the very least let them know that they are not alone.)

back on target Brenda.  Right!

Dear Pok & Faith,

When you send in a request for a CT scan, they usually don’t approve the upper extremity which means they ask for more information and a peer-to-peer with POK.  This is a pain in POK’s derrière so I have been trying to get them to get their shit together so POK doesn’t have to do this anymore. 

Here is the gist of what they said.

1.       Don’t fax additional information in.  Have someone call it in.  Faxing the additional information will cause a delay.  No one knows why, this is just what happens.  Apparently if you call, they’ll handle it immediately?  Just deducing here, I have no actual fact to back that last statement up.

2.       Figure out what they are asking for each time and see if it is the same, then just include it in the initial request for future scans.  Maybe this will mean you can avoid having to deal with these insurance morons in the future.

Robin also asked to add the clinical trial info with the benefits folks.  I called and tried to do so but was informed that POK would have to do that.  Their clinical folks don’t speak with low life patients.  We are, apparently, filthy and they are definitely Germaphobic Ass-Hats with severe anal blockage.  Or maybe the insurance people just have a huge crush on POK and are dying to hear his voice over the phone.  I am sure they would faint if they actually laid eyes on your visage Sir. 

I am quite positive Faith, that you are just as amazing and wonderful as Pok and can do this for him since he lacks the gene to multi-task with the appropriate amount of sarcasm to make it Oh-So-Much-Fun.  You’ll have to add the sarcasm and have fun on his behalf. 

It is my sincere hope that they learn how to toe the line and stop bothering you for more information on future scans.  You should only have to do one peer-to-peer.  After that it should be easy sailing.  Sadly insurance companies don’t ever do anything the easy way.  Their profits come from making life difficult for providers and their patients.  They are filthy bastards and need to be put into Permanent-Corporate Time-Out!

Whew, I don’t know about you, but I feel so damn much better now.

Peace, Love and Reiki Hugs for everyone!

 

Remember, you don't have to do this alone.  Request a Case Manager!