I'm rapidly approaching 10 years cancer free!

It looks like I forgot to post this from March 8th 2022.  Go figure.

It still boggles my mind when I think about it.  I just doesn't seem like it has been long enough for me to be almost 10 years cancer free.  I think I need to plan a party or something for that day or do something to mark that date.  I'll think about it.

So lets recap the fall of 2012.  It was a beautiful fall day on Saturday September 29th.  I was with my co-workers at the Innsbrook Corporate Games and we were kicking some corporate ass in goofy races.  It wa a lot of fun, but I digress, I had just lost quite a bit of weight and I could feel a fair sized lump in my right arm.  This lump was just above where I had a previous Melanoma removed about 2.5 years earlier.  

I had a friend and co-worker check it to make sure I wasn't just imagining it.  The look in her eyes said it all.  The following Monday I called the office of my Surgical Oncologist.  He was on vacation.  They gave me an appointment 3 weeks out.  I basically cried on his secretaries ear until she got me in as soon as he got back.  

I was shoehorned between patients October 3rd.  He took one look at my arm and said I couldn't leave until the pathology folks came down to get a sample.  At this point we both knew what it was.  It took Pathology about 45 minutes, I think, to come see me.  This was a fine needle aspiration, which means they take a needle attached to a syringe and they try to pull back on the syringe with a little gun while stabbing you in the arm 100 times.  It wasn't bad until they poked all the way through the tumor.  That hurt like hell.  They take the tissue and smear it on a slide and dye it to see what it looks like.  I am still kicking myself that I didn't ask to take a look in the microscope.  So I went back to work and waited for the call.  My arm was producing quite the impressive bruise and it hadn't even been an hour.

About two hours after I got back to the office, I got the call from Dr. Neifeld.  It was in fact, melanoma.  This time it was a tumor about 1" in diameter.  He wanted me to come in the following week to get scans  scheduled.

I got off of the phone with my Dr. and called home.  Mom said she would be on the next plane out.  I tried to argue that we didn't know enough as my Dr. wanted a scan before scheduling surgery.  Dad told me to shut up and that Mom would see me Friday.  

True to my parents word, I picked up Mom at the airport late Friday afternoon.  I packed her and my dog Abby up and we headed north to Maryland to see some friends.  It was a nice break before things got real and Cancery.  You can look back at my first post from 2013 for further review.

Today the folks from Massey Cancer center came to my office to interview me as a former clinical trial participant who is still kicking ass and doing really quite well.  It was not the most comfortable thing to have a camera pointed at me while recounting my cancer journey.  I'm just not an in front of a camera kind of person.  Anyway, we had a very nice chat with me stuttering the whole time, (what can I say, I get nervous, I stutter,) then they took a few pictures with me at my computer working and grabbing drawings from the printer.  They took video of some paintings.  I hope the edit out the bulk of my stuttering.  The camera man was tickled to see my Fuck Cancer Cross stitch framed on my cube wall.  Thank you Gabriella!  I still get a warm feeling every time I look at it.   Then I say "Fuck Cancer!," and laugh.  It is still my mantra.

Bad Gallbladder! You have been evicted!

I forgot to post this last year.  Given that it has been almost a year, I thought I would catch you up.  October 19th 2021 I started feeling nauseated.  It got worse.  I ended up in the hospital and it was one cluster after another.  I ended up having to write a letter to make sure this didn't happen to anyone else.  While Massey Cancer Center is attached to the Medical College of Virginia, the quality of care is significantly different.  My time at Massey was exceptional.  Everyone I dealt with was a gift.  Everyone was compassionate and the standard of care is remarkably high.  This was not the case when my gallbladder decided it hated me and tried to kill me.  Below is my letter to the PTB at MCV.  Items enclosed by (parentheses) have been added for clarity. 

To whom it may concern,

Following is a timeline of my ER visit and stay with VCU Health due to the death of my Gallbladder.  (A moment of silence please.)

Tuesday evening October 19^th, 2021 I started feeling queasy.  My stomach was upset so I went to bed thinking it would get better.  At about 3:30 Wednesday morning I started vomiting.  I thought this would be the end of it but I was wrong.  The Nausea did not abate.  I was still vomiting at 1 in the afternoon.  I texted my PA and called my GP to see if I should to go the ER.  Both recommended I seek medical help at the ER.  I drove to MCV and ended up having to go to Valet parking as the parking deck was full.  I walked to the ER and checked in at around 1:45pm.  I was still nauseated I sat for about 45 minutes before I got called back for triage.  Basically, the nurse asked questions on my condition, took BP, Temp and blood O2 levels, put me in a wheelchair and sat me back in the waiting room.  By 2:30 I was asking for a blanket as I was so cold, I was shivering.  At some time in here I needed to visit the lady’s room as I am not comfortable vomiting in front of people.  When I got back, my wheelchair had been confiscated by some woman who thought she was better deserving of said wheeled device.  By 3:00 I informed the front desk that I wasn’t sure I’d be able to remain conscious.  They informed me that I would just have to try.  I may have requested another blanket at this time as well.  (I was in and out and my memory is fuzzy.)

Somewhere in here I asked if I should try another ER.  I was informed that every ER in the city was backed up.  I later found out this was not the least bit correct and was in fact bordering on a bald-faced lie.  Most other ERs in the city had a maximum 10–15-minute wait time.  I know this because I had two friends who went to various ERs in town and were in, treated, and out in about an hour.  VCU just didn’t want to get dinged by my leaving without being seen.  Apparently, this is really bad for an Emergency Room’s rating.

Around 5:30 or 6:00 I think, I may have been called back to the ER.  ER summary says 5:25 so I’m in the ballpark.  I was sort of in and out by this time.  I asked for more blankets because I was still freaking cold.  They started an IV, as I was severely dehydrated, and took blood for labs. 

I think it was probably around 7:00 or so and I tried to give a urine sample but dropped the cup.  I wasn’t terribly steady but better than when I initially came in.  After another bag of fluids, I was finally successful at giving a urine sample without dropping it.

My white count was apparently quite high so they sent me back for a CT scan around 8:30 or 9:00, (I think.)  After I got back from the scan, I laid around in my cubby for a while, then I was told sometime around 10:00 I’d be getting a sonagram as the Surgeons wanted a clearer image of my gallbladder.  I believe this was the first time I recall hearing my gallbladder was the culprit of my illness. 

The sonagram person showed up immediately and took pictures of my gut.  She wasn’t allowed to discuss anything so I told her what I could read from her face.   She kept her mask up pretty well. 

I think I was again in and out for a while.  I was informed that that part of the ER closed at 11:00 and I would be taken back to the other part of the ER that remains open.  I was wheeled back to a fishbowl type room with curtains.  It was delightfully quiet and they turned the lights off.  I think I dosed for a bit.  What bliss.  Zofran is my friend.

It was once I was back there that the surgery residents came in to speak with me about removing my gallbladder.  They discussed laparoscopic surgery and the slight possibility it’ll require cutting me open further if things aren’t great.  I was thinking with my luck, it’ll be the latter option.  I think I dosed a bit more as folks continued to monitor my BP and vitals.

Somewhere around 12:30 or 1:00am I was told a bed had opened up and that I would be staying until my surgery. 

I do have to say that once I was back in the ER being evaluated and hydrated everyone was exceptional.  The ER wait time however, was beyond ridiculous.  While I understand that the policy is to take everyone no matter what and that it was considered fair to see everyone in the order they came in, I was severely infected and dehydrated at this point.  The wait time is unacceptable.  I will not in future be going back to the ER at MCV unless I’m in an ambulance and unconscious.  If I have to drive an additional 40 minutes to get to a hospital with a more reasonable wait time, I will.  Triage should be used as a way to determine who is in the worst shape to be seen.  This doesn’t appear to be terribly effective.  After an hour or so, someone should have rechecked people to make sure they hadn’t gotten worse.

If a patient isn’t screaming in pain no appears to care much.

Main 9 – Rm 246

I was interred in Rm 246 sometime after 1am I think.  I never met my roommate but she was quite broken and in a very bad way.  I was told she had been in a car accident and had broken back and ribs.  She had the TV on all night and day, I’m not sure if she noticed it was on.  If my IV went off creating an alarm she complained.  Thursday, they removed her trachea tube.  Thursday evening, she was taking a turn for the worse.  It sounded like she was aspirating in her sleep.  I called the nurse and asked her to look in on my roommate as she was didn’t sound good.  They had a peak and didn’t stay very long.  A while later I again ended up having to call the nurse as my roommate was aspirating worse than before.  They came in and worked on her for about half an hour and ended up taking her to a critical care ward.  They even thanked me for alerting them to her condition.  That poor woman could have died.  I really felt bad for her. 

I waited all day Thursday for surgery but they couldn’t fit me in.  I was scheduled Friday morning but as soon as they were getting ready to wheel me down, they got a call and I got bumped.  I think I managed to get in for surgery around 11:00 Friday?  I was informed that they would try laparoscopic surgery first.  My suspicion was this was a pipe dream since I’d been so horribly infected this whole time.  I’m pretty sure I put a big damn dent in their bags of IV antibiotics.  After waiting several days, I think my gallbladder was toast.  As expected, it was worse than they thought.  The surgeon later informed me that he had not seen a gallbladder this bad before.  They weren’t able to take it all as there wasn’t clear delineation between the gallbladder and liver, and they didn’t want to cut the wrong thing and kill me. 

It must be said I felt significantly better once the bulk of the diseased tissue was gone.  Once I was back in my room I got better fairly quickly.  They kept me on IV antibiotics to be sure all of the infection was gone.  I think it took a few days for my bloodwork to come back clear of infection.  Once I had to get up and go to the bathroom, I started walking the ward.  The first few times I was pretty pathetic, but I kept it up.  I had a love/hate relationship with the spirometer.  I was always easier after a walk.

Mary came to see me Saturday.  I managed to get a bed swab down which wasn’t as good as a real shower but it did help me feel a bit better.  I was finally awake enough to look around a bit.  Mary and I noted that my room was quite a mess.  The room hadn’t been cleaned since I arrived other than changing out tenants on the other side of the curtain.  Once I was up and about, I began to see just how filthy the floors were.  (I wish I had taken photos, there were dust critters floating around the corners and spots of dirt stuck to the floor.  Mary changed the linens while I went to the bathroom and set the dirty sheets in the chair as the linen bin was overflowing.)  We found a previous tenants’ personal items in the drawers in the bedside table.  There were bits of plastic flotsam on the floor to include an old straw, two bottles of protein shakes and all of the plastic detritus that gets ripped off of IV’s and related pieces and parts.  I asked for a broom so I could at least sweep up a bit.  They sent someone in to clean up but they still only did a marginal job.  The linens & trash hadn’t been taken out since I had gotten there.  The nurse aid came in and emptied them when we asked Saturday.  The floors had not been mopped at all in the time I was there.  The bathroom was not cleaned while I was there either.  You could see where drops of water had fallen to the floor, collected dirt and dried on the floor.  It was truly disgusting.  

(Mary came back Sunday to visit.  The dirty linens were still sitting in the chair.  We had a chat with the charge nurse.  She came in to see how bad it was.  The dirty linens were removed as was the overflowing trash can.  Someone came in to sweep but the floors were still not clean.  I was still walking around the ward.  I walked with another patient a few times.  I waved at my car in the parking lot.)

They continued monitoring me through Sunday and released me Monday afternoon.  I did strip the bed before I left.  I also cleared out the bedside table and drawers.  I tossed everything that I wouldn’t be taking home.  I figured that is the only way to be sure the room didn’t have unwanted stuff hidden somewhere when a new patient came in.

While there are a lot of talented people working at MCV, it should never get dirty enough that people can see all of the yuck on the floor.  Linen bags and trash should be removed daily.  Floors and surfaces should be cleaned daily.  Bathrooms should be cleaned daily.  I’m not sure what is going on, but patients should not be staying in rooms where dirt and detritus can be seen on the floors.  I saw one man cleaning the corridor floor with a scrubbing machine on Saturday.  I have no idea if he did the whole corridor as I didn’t hear him come down my end of the hallway. 

No hospital ward should ever get this dirty.

Thank you for your time,

Brenda L Kliesen

CC: Aetna Insurance, VCU Health Patient Advocate, Chief Executive Officer Ralph R, Clark, III, MD.  Survey Processing Company Press Ganey.

Yeah, I pretty much copied this and sent it to everyone I could think of.  It did get some attention.  The patient advocate called me a day or two later and we had a nice chat.  I'm pretty sure there was a meeting with the ER staff, the head nurse on the ward, and the cleaning company.  I suspect strong words were used.  My bill disappeared.  It is my hope that no other patient has this experience in this hospital.  

Since all of this occurred, my gut has been unhappy.  Not nauseated or anything like that.  I can no longer process certain foods which flow through my system at a speed hitherto unknown.  I had no idea things could move so quickly.  One cannot blissfully ignore the gastric system as an unfortunate even could occur without much notice.  I now take my headphones on a walk to the restroom during conference calls while muted.  They'll just have to wait for me to unmute when I get back to my desk.  I can still listen.  If I am driving, I have to know where the restrooms are and how far away they are.  If on the highway, I take an emergency bathroom kit.  I also don't eat before driving long distance.  Fluids are not a problem.  I just try to avoid overly glutenous or fatty foods as much as possible.  

Take good care of  your gallbladders folks!  They can really mess up your day.

#WhyIDidntReport

This has nothing to do with cancer.  Or maybe it does because violence against women is a social cancer in the world today. 

This is not a happy blog post so be warned.  It is ugly, it is humiliating, it is sad, and it is angry!  I am ANGRY!


I am sickened by what is happening in America today.  Women are called names if they call out their abuser a day, a week, or even 30 years after the fact.  Time and again women are told to shut up and just live with it.  I'm here to tell you that is complete BULLSHIT!  Men and boys, (and some few women,) should not get a pass for having been abusive to anyone - Ever!  

The Pseudo-Christian political right calls Women whores and liars, and shames them for being a victim while giving the men who commit the crime a get a free pass.  Women are vilified in the media.  They are scrutinized by everyone and thought of as seeking their spotlight moment.  Trust me, no woman would want that kind of attention.    

"Rape is a severely under-reported crime with surveys showing dark figures of up to 91.6% of rapes going unreported.  Prevalence of reasons for not reporting rape differ across countries. They may include fear of retaliation, uncertainty about whether a crime was committed or if the offender intended harm, not wanting others to know about the rape, not wanting the offender to get in trouble, fear of prosecution (e.g. due to laws against premarital sex), and doubt in local law enforcement."  Let us not forget humiliation, fear, and public ridicule and shaming here either.

Here are a few quotes from republicans on rape.

Todd Aiken (R-MO) - "If its a legitimate rape, the female body has ways to try to shut that whole think down." or "You say you got pregnant from a rape?  That just means you enjoyed it."

Rick Santorum (R-PA) - "Rape victims should just make the best of a bad situation."

Richard Murdock (R-IN) - "Even when life begins in that horrible situation of rape it is something that God intended to happen."

Lawrence Lockman (R-ME) - "If a woman has (the right to an abortion), why shouldn’t a man be free to use his superior strength to force himself on a woman? At least the rapist’s pursuit of sexual freedom doesn’t (in most cases) result in anyone’s death."

Paul Ryan (R-WI) - Rape as an "alternative form of conception."

Let us not forget this oldy but goody;  Clayton Williams (R-TX) - "Rape is kinda like the weather.  If its inevitable, relax and enjoy it."


Are you Fucking Kidding me?!?


As if rape or even attempted rape is the woman's fault, as if it is a woman's problem.  Violence against women is not a Woman's issue.  It is a men's issue because it is men who commit the crime.  We have to stop giving men a pass for bad behavior.  We have to stop blaming women for being attacked.  It is men holding power over someone they perceive as weak.  It is men using women to make themselves feel strong.  

Brock Turner rapes a young unconscious woman on the ground outside of a party, is caught, tried, and convicted but gets only 6 months in jail and only 3 years probation.  Yes, he has to register as a sex offender.  Big fucking deal.  The poor woman he raped will have nightmares and trust issues for the rest of her life!

Lets look at a few other facts:

1. The Centers for Disease Control and Prevention estimates that nearly 1.3 million American women were victims of rape or attempted rape every year.

2. Half of all attempted rapes will result in an actual rape being completed.

3. RAINN statistics show that 64,000 women per year are raped, citing data from the Justice Department.

4. Up to 6 in 10 rape attempts will not be reported to law enforcement officials, which may account for the large disparity in numbers.

5. A 1996 study found a national rape-related pregnancy rate of 5% per rape among victims between the ages of 12 and 45.  When study samples are expanded to the entire population, it is estimated that between 3,200 to 50,000 rape related pregnancies occur every year.  The figures about women becoming pregnant from rape are all about 20 years old, but there isn’t any new data that has been published since.

6. 1 out of 6 women will have been the victim of a rape or rape attempt at some point in her lifetime.  17.7 million. That’s the number of women who are survivors of rape right now.

7. 90% of rape victims are women.  Yes folks, it can happen to men too.  Mostly though it is women who are raped.  

When I was in middle school and high school, I was picked on by one boy in class.  It went on for years and got progressively worse.  This was a daily occurrence.  It was one humiliation after another.  

When I told my parents or a teacher, it was always, "oh, he likes you," take it as a compliment.  I was told 'Boys will be boys.'  All I could think of was, how could being called really bad names mean 'he likes me?'  Why should he get a pass for being an ass?  If I was that mean to someone, I'd be in big trouble.  It was awful, so I quit telling anyone.  I only have ugly memories of that period of my life.  How can he get a pass for telling me that the world would be better if I just died.

What started out as teasing progressed to being called horrible names, to being pinched, punched, and stabbed with pins or needles.  Finally I got hit in the face at a football game as he and his friends laughed at me while shouting what a loser I was, and how ugly I was.  How I would never be worth anything, and that I should never have been born.

This went on for nearly 6 years.  A cousin finally saw me crying after being hit in the face and faced off with this person.  I was terrified that I would go to school the next day and would be beaten worse than before.  I was humiliated.  I was terrified.  Worse, no adult believed me.  No one listened to me.  I felt like somehow it was my fault.

Years later, in college I was raped.  No, I didn't report it.  Experience taught me by this point that this humiliation would only get worse if I told anyone.  I saw how other girls had reported their attacker and been further humiliated by his friends, the police, and the public.  Women were vilified for being attacked whether by a friend or a stranger.  We are told that we asked for it by drinking, by wearing sexy clothing, or by being out alone at night.  (I was wearing jeans, a sweater, scarf, and coat when I was attacked by a stranger.  I was with friends but walked out to my car to leave.) 

I had a roommate in college who had survived being gang raped by 5 men.  They had knives and as each man mounted her, they told her she was going to die.  She was stabbed, she was sliced, she was beaten.  She was extremely lucky to have survived.  She was a virgin up until the attack.  She later found out she was pregnant due to that attack.  She is emotionally scarred to this day.  That is something that will never really be behind her.  The men were never caught.  How many others did they rape or kill?  

Another time I wasn't feeling well so I walked down to the convenience store for some stomach medicine.  I was wearing jeans and an oversized sweatshirt.  Several men drove by calling me a whore and telling me what they would do with me.  I approached a police officer to tell him what happened as they drove by and did it again.  He said it wasn't his problem and that I should just live with it - obviously I did something to deserve it.  These guys drove by three more times and then followed me as I walked back home.  It was frightening, it was humiliating, I didn't feel safe.  If you can't report feeling afraid to a police officer, who also witnesses the intimidation and harassment, what else is there to do?  I went home and locked my door.

Several years later, I answered my door to a young woman crying.  She had stumbled away from a frat party where she had awoken in a room with her underwear missing and no idea what happened.  She ran and ended up at my apartment.  I brought her in and calmed her down.  She just wanted to go back to get her purse but was afraid.  I took her, and stayed with her to get her purse.  I asked her if she wanted to go to the police.  She looked terrified of that thought and just asked me to take her home.  I reported the fraternity to the Greek council and was told that since I wasn't a member of a Greek house my word held no sway.  Boys will be boys after all.  It was all in fun.  I assured them that the young lady I helped home was not having fun.

Why am I posting this now?  Because I am older, wiser, and I'm fucking angry!  I have spent my entire life in fear because of men who abused me, hurt me, and harassed me.  I am angry that people blamed me for it.  I am angry that I was not taken seriously.  I am angry that I am still afraid of men.  I am angry that I still am afraid to trust people.  I am angry that I still have nightmares about a boy telling me the world would be a better place if I were dead.

Yup, Grief sucks.

Right then confession time;

I cant get motivated to get out of bed on the weekends.  I sleep, I binge watch Netflix, I cuddle with Zoe.  It has been almost a year since Daddy Passed and a little less since we lost Mom.  If I am to be completely honest, I'd have to admit that I'm not coping so well with their loss.  Sometimes I cry, mostly I try not to.

My house is a wreck, granted there have been some maintenance and repair setbacks in the way but it is a mess and may be contributing to my inability to drag myself out of bed on the weekends.  It is a bit overwhelming.  I have one room which is mostly clean at the moment.  I removed everything so i could rip out the wall to wall carpeting.  I was planning on priming the ceiling and walls, but wasn't able to drag myself out of bed today.  I feel guilty, but it is like I have no will.  I'm weak.  I'm incredibly overweight, and I'm yeah, kind of really sad.  Mom and Daddy would be so pissed if they were here right now.

Yeah, kind of needing a kick in the ass right about now.

I just realized I never blogged about losing Daddy then Mom. 

Last year about this time I went out to NM to visit Mom and Daddy.  I flew into Santa Fe, Daddy picked me up from the airport.  It was wonderful to see him.  I had absolutely no idea the week would spiral out of control.  I was going to get to spend time with Mom and Daddy, and my brother Brian and his family. 

About my second day in, I got a call from Dad, he said he wasn't able to get up and he couldn't feel his leg.  I ran over from feeding mom and ordered an ambulance to take him to the hospital.  The emergency room doctor wasn't great.  He honestly seem not terribly concerned and ordered a lidacane patch and called it sciatica.  Long story short, Dad got worse.  We ended up back at the ER and a new Dr. said he had a clot blocking flow to his right leg.  The sent him to the Heart Hospital in Albuquerque, I followed the ambulance and spoke to the doctors there.  They tried to save Dad's leg with an angiogram.  It wasn't successful.  Dad was 80 years old and he was tired of watching Mom fade a little more each day.  His heart was broken watching her lose her memories. 

Brian got there shortly after Dad came out of surgery.  The surgeon was very kind but Dad refused amputation.  I completely understand.  He was ready to go. I know this in my head, but my heart still hurts.  We respected his decision.  The surgeon agreed as Dad may not have survived the amputation and it would have been a painful way to go. 

Brian, Joel and I  stayed with him, his sisters came down, as did Jamie & Jeff, our cousins.  A couple of guys who worked for Dad came down so say Goodbye.  Even got a chuckle out of Dad while they were there.

We stayed until Dad was gone, then the Aunts and cousins left.  Brian, Joel and I stayed to make arrangements. 

40 days later Brian called to let me know that Mom passed quietly in her sleep. 

So, that was almost a year ago and I'm still grieving. 

Yeah, grief sucks.

In a fit of Pique; Second Verse

I called the insurance company back to check the status of my complaint.  No record was found of Thursday's call.  So I put in a request to have a supervisor call me back. 

My scans are still not all approved. The soft tissue of the neck, code 70491, is the hold up this time.  it is generally a crap shoot as to which scan will be the problem child.  Sometimes it is the upper extremity, where the cancer originated, sometimes the neck, (because we all know there are no lymph nodes in the neck.) 

Dr. Pok still needs to find time to do another Peer-to-Peer review.  He just needs to record his discussion and play it back for the reviewers every 6 months.  

My plan does not include the rider for a case manager.  This time when I spoke with the customer service person, they were very understanding and, seemingly, helpful.  We'll see what the next supervisor says.  I need to keep a notebook on all of these conversations so I can remember who said what.  

There will be more to come I am sure so stay tuned.  

In Another fit of Pique!

In dealing with trying to get another series of scans approved for my bi-annual CT's below is a letter to my company's insurance broker.  Company names have been removed to keep my ass out of court, I hope.  If I missed one, let me know and I'll remove it.

Insurance companies treat patients like we are trying to get something for free.  Seriously it isn't as if cancer is fun in any way.  It is scary as hell.  It sucks.  Even after you've made it to the other side, you get nervous with every scan wondering if it will show up again.  

Dear sir,

I hope your week is going well.  I hope you are healthy and happy and enjoying the sunshine.

Just remember, you asked.  Also please know that I am venting here.  This has absolutely nothing to do with you personally.  This is the kind of thing My medical team and I have had to deal with every 6 months for the last 4+ years.  It is a pain in everyone’s ass. 

I have been part of a clinical trial since January 2013.  It will be ongoing for some time yet.  I get bi-annual CT scans for this trial, it is also nice to have bi-annual proof that the cancer has not returned.  Nearly every time I go in for my appointment, one scan has not been approved.  This means I need to reschedule to get the other scan on another day, taking time out of work to go in.  Sometimes I’ll get the scans that have been approved and my Dr. will have to call in for a Peer-to-Peer to get it approved while I am drinking the barium solution as I wait.  Sometimes I end up having to reschedule the scans or come back for the scans which were not previously approved.

eviCompanyX is the management company that does the approvals for Insurance Company A.  They do the approvals for most of the scans for nearly all of the insurance companies.  They have been the hold up for 95% of the scans I have had over the last 4.5 years. 

Here are the steps my medical team has to go through to get approval.

Scans are scheduled 6 months in advance.

1.       Dr. office requests approval by faxing in the information for each appointment 2 weeks in advance.

2.       Get denied because the request is sent in too soon.

3.       Request approval by faxing in the information again 1.5 weeks prior to my appointment.

4.       Information sits on the fax machine for a week.

5.       Dr. office calls to ask about the scans approval.  

6.       eviCompanyX says they have no request.

7.       Dr. office sends the fax again and starts making calls.

8.       Monday: I get a call from Radiology saying my scans have not been approved. 

9.       I get on the phone with the insurance company and start asking questions.  They are not able to give any answers.  I ask for a nurse case manager.  They transfer me to their nurse call line, she and I chat for a bit so she can get an idea of what is going on.  She indicates that according to her screen I should qualify for a case manager.  She has me listed as having Insurance Company ITC & BH Cond Mgt.  She calls Insurance Company back to see about getting me into these programs.  Insurance Company says they don’t see that on their end.  They hang up and she asks me to check with my HR person to verify if we have access to ITC as it would be very helpful for me.

10.   Tuesday: I call insurance company asking more questions about scan approvals. They conference in eviCompanyX who can’t tell me anything because I am only the patient.  They only speak with medical professionals.

11.   I ask to speak with the supervisor.

12.   After another transfer I am told that they only got the request for approval Monday.  I know for a fact this is not accurate as my Nurse has informed me that they have requested approval 2-3 times by now.  They say it may be approved and I should check back with the imaging center in the morning.

13.   Wednesday: I call Radiology, they have not received approval.

14.   I call my Clinical Trial Nurse and she starts making phone calls.

15.   I get a call at noon from my clinical trial nurse who called someone in radiology who says they finally have approval. 

16.   I leave work at 2:30 to head to MCV for my scans.

17.   I leave my car with the parking guru’s and head down to imaging only to find out they still don’t have approval.

18.   I call the insurance company and start asking questions again.

19.   While I am on the phone I text my Clinical Nurse about the approval.  So she calls Radiology asking questions.  It turns out that someone up in the radiology office was reading from the wrong date on my chart.

20.   Meanwhile I am still on hold with Insurance Company.  They are trying to call my Nurse to get information from her.

21.   My nurse has her assistant call me to let me know she is on hold with the insurance company waiting to get through, she doesn’t want me to think she has forgotten about me.

22.   I let the insurance company know she is on hold with her people waiting to get through.  I end up being the go between until they finally get connected. 

23.   The insurance company person finally gets both of us on the line then attempts to conference in someone from eviCompanyX.  That takes about 17 minutes, (they have the worst Muzak btw.)

24.   We speak with someone with eviCompanyX who has to transfer us to a medical review secretary.  We give my patient information and find that the neck scan is the hold up.  Again, they say they only received the request a few days before but that they need more information before they can approve the final scan. 

25.   I chime in to let them know they have been the hold up with my scans on many occasions.  It is always the same one or two scans they refuse to approve.  I mention that my Dr. administers all of the clinical trials in a major teaching hospital that handles thousands of patients.  I then mention that this happens about 95% of the time.  Most clinical trials require regular scans. 

26.   My nurse mentions that this is correct.  Dr. Awesome ends up going toe to toe over and over on scans that occur regularly.  At this point the problem is equivalent to a corporate cancer of wasted time, effort ,and money for everyone.  

27.   Today I had to reschedule my scans for July 31^st as that was the next opening they had in their schedule.  This also required me to reschedule my appointment with my oncologist, I don’t have that appointment date yet. 

So, I have spent approximately 8 hours on the phone with the insurance company over the last week.  I left work early to make my appointment, had to pay $5 for parking to find out I can’t have my scans unless I sign a wavier which the insurance company could use to make me pay for the whole thing. 

Don’t shake your head.  This happened in 2012 when I need a PET scan to determine how far the cancer had spread prior to surgery.  I’ve been fighting this crap for almost 5 years by now.  That PET scan cost me $10k because the insurance company refused to approve it after the fact.  My surgical oncologist was livid.  He ended up doing 3 Peer-to-Peer’s trying to get it approved.  I could go on, but who has the damn time?  I do have that cluster fuck written down for posterity.  I actually blogged about it during my treatment.  If you are interested go here for my blog post on that cluster from hell: https://blkliesen.blogspot.com/2013/02/  (Trivia:  my oncologist uses my blog to educate patients on the immunotherapy for melanoma.  Yeah, if it happened it went in the blog.  I'm educational and shit.)

Now, I am out the 8 hours pay spent on the phone, 2 hours at MCV, $5 for parking, and I still don’t have approval for said scans.  I have also spent about half an hour on the phone today trying to get rescheduled.  Since they couldn’t get me in until the 31^st, now I worry that the approvals I do finally have will be void and we will have to start the process over again.

My patience has gone the way of the dinosaur.  Insurance companies are making record profits because they couldn’t give a rats colon about the people who buy in to their policies.  They refuse to be strait with Doctors, Nurses and patients because they think we enjoy drinking barium which bloats the hell out of you, getting poked with needles to insert an IV to ride a machine to see if the cancer is back.  Then I get to spend the rest of the day in the toilet because nothing messes up my gastric system like the chemicals used in CT scans.  This is not like Disney land!  There is nothing that is actually fun about CT scans.  Now, I know I make it sound like fun, but really, it isn’t.

I am now waiting to see what comes of this.  Wish me luck!

Update:

After a long conversation and requests to speak with a supervisor, I finally got through.  I am not terribly confident that anything will come of it, and will have to check back but at least something is on record and they promised to push it up the chain.  Here's hoping I can get some relief for my medical team.  Heard from my Dr. today that he was on the phone for more than one peer-to-peer today.  Insurance companies exhaust him.

Anticipation

I haven't been around much I know but life has a way of well, getting in the way.

Thus far this spring/summer I've been gardening like a crazy woman.  I've been landscaping the slope along the fence between the garage and the alley.  This spot has been a great killer of lawn mowers in the past.  Digging it up and landscaping it then mulching has been my job every spare moment away from the office. 

I am calling it my 'Mom" garden.  My mother is my gardening inspiration for that slope.  Mom always loved flowers and as she isn't able to garden anymore I've taken up the task at my house to remind me of her every time I look at the flowers.  I still have a tiny bit left to plant then mulch.  I have daisies, yarrow, philox, roses, lavender, daylilies, and thyme planted there so far.  I did manage to put in some lantana last weekend when it wasn't too hot.  Hopefully I'll find time to finish it up soon. 

I picked up this amazing ceramic planter and filled it with hibiscus and a lovely variegated vine.

Day lily Bela Legosi

 

My first boquet from the garden.

New rose bush, one of 5 I have added to this slope.

My little day lily patch.  I have more to put in but it will probably be a few years before it fills in.  

I really should buy stock in sunscreen since I practically bathe in it before I go anywhere.  I have also planted peppers, tomato's, cucumbers and zucchini in the back yard.  I have even had my first tomato from the garden.  It was incredibly delicious.  I have some peppers that should be ready soon as well.  I can't wait to harvest the squash and cucumbers too.  Yum!

My biannual scans are coming up next week.  I tried to send my insurance information to my DR. & Nurse but haven't heard back from them yet.  I wonder if I should call the radiology department to see if they have the correct information instead?  Oh well, I am sure someone will let me know eventually.

I would hate to get there only to be told that the insurance hadn't approved anything.  This has been a problem on occasion and it isn't pleasant.  I've had to go back the next week for 1 scan which means drinking 2 bottles of the vile stuff.  Then my stomach is all messed up for another week.  


Beyond that I have been working an insane number of hours as I have 4 deadlines in 5 days.  Yes, you read that right.  One is an addendum so that isn't too bad.  I am really hoping to have some time to go see Mom & Dad soon.  I just need to earn enough vacation days and save up the money to go.  I miss Mom & Dad so very much.  They are in New Mexico near Brian now which is grand.  It'll be nice to see everyone.  I can fix dinner for Brian, DJ and the kids.  Maybe I can even get some things prepared and frozen for them.  I know both Brian and DJ are super busy so it would be nice to have some freezer meals ready for them to toss in the oven or in a crock pot, easy peasy.