New Treatment Side Effect

Here I am years after cancer enduring yet another side effect.  I should have posted this a year ago, but I got busy and, to be completely honest, I forgot I had a blog.

While I am still a happy member of the lucky 9%, I am now a member of the long-term side effect catching up to me group.  I am now the lucky, still alive and living with Psoriatic Arthritis.  This is directly related to the immunotherapy from 2013-2014.  As long as I am still up and moving, I'm still calling it a win.  It is just a new sort of normal.  I've been battling for about a year now, I think.  looking back, the psoriasis began in 2021 or 2022.  At first, it was an awful skin condition that took a while to figure out.  I sort of felt like a snake/human hybrid.  The psoriasis on my face and scalp was terrible.  It wasn't easy to go anywhere because it felt like everyone was staring at my inflamed and flaking skin.  It did take a few years to spread over the rest of me, then the joints got involved after I had wrist surgery.  

I had surgery on my right wrist in August of 2024.  After years of being unable to do a proper pushup, it turns out my right ulna was 2cm too long and had been beating up my wrist bones for ages.  I still can't do a proper pushup, but now I know why.  I will not recover the mobility I had in that wrist, but it doesn't hurt like it did anymore.

So, today I have inflammation in some of my joints.  Oddly, the roughest joint is my left hand/wrist.  Currently it aches all of the time and it takes a good hour or two of warming it up in the morning to make it function properly.  Most of the affected joints are on my left side.  Left ankle, knee, hand, wrist and shoulder.  Sometimes the right hand/wrist gets involved and the right shoulder, but that is nowhere near as bad.  

I've been seeing a Rheumatologist.  I get bloodwork several times a year because the meds can mess with me.  I'm on my 3rd medication.  I take a Skyrizi injection every 90 days, daily anti-inflammatory and a weekly anti-inflammatory followed by a strong B supplement.  Anti-inflammatory drugs eat B vitamins, so I have to keep up with my B's, calcium, D and magnesium.  

I will eventually find an even keel.  Right now, work and studying are getting in the way.  I am trying to get walking on a consistent basis which should also help with the inflammation, I hope.  Also, the insurance company has my blood sugar is too well controlled so now I'm off of that medication until my bloodwork comes back out of whack.  It isn't as if it is controlled because I take my meds like a good little patient.  Insurance companies are the Devil!  Proffit mongering Sociopaths!

Right then, more to come.  I need to get home, cook dinner and play with my critters.  I need to remember to re-aim my bird feeder camera so I can see the birds better.  I should post some gratuitous squirrel but photos since they are bigger than my camera lens can focus on.  They look huge on that camera!

I will attempt to start a medical Journey Support Group at my Company.

I made the decision to start a Medical Journey Support Group at my office a few weeks ago.  I will be speaking with HR about it this afternoon.  I've downloaded a metric crap ton of information from the web.  The ACA is great and there is a book on starting your support groups for cancer.  We have over 2000 people at my company, and I thought it I could help just one person, that would be great.  

We already have an amazing PRIDE group, and I attended that meeting today.  I'm only an ally, but the goal is for everyone to be able to be comfortable at work.  My company is an excellent company to work for, and we all work hard to show compassion to our co-workers.  

My goal is to provide a resource for my co-workers going through a life changing medical event or supporting family or friends going through a medical, well anything.  I was clueless when I started my cancer journey.  I'll update this after my call.

My meeting with HR went great, but she asked that we open this up to other conditions as well.  We have a lot of people in the company who may have something other than cancer going on that they may have experience or questions.  I'm thinking Cancer, but others may have experience with Alzheimer's, Elder Care, Autism, MS, Diabetes, Disabilities, physical or learning, surviving losing someone to suicide, etc.  There is probably someone who has experience, who could be a resource to answer questions, listen to someone who just needs an ear, or can say, I know someone who has been through it, I can give an introduction.  Google only goes so far.  I do have some experience with Alzheimer's disease but hesitate as my experience may not be as helpful as I would like.  

I'm starting to get excited and terrified about putting a group together.  There will be a chat feature where a co-worker could post to the group, does anyone have experience with xyz?  The query goes to the teams' group, and anyone can be linked to someone with that experience.  We can publish a list of resources which will grow as the group matures.  We shall see how this may go.  My biggest worry though is that people respect everyone's privacy.  People who approach our group don't want everyone to know what is happening in their life.  Privacy must be respected.  

I think this is why I would like to limit the group to Cancer in the beginning.  If there are people interested in other issues, those can be added.  I think starting too big in the beginning would be extremely difficult to maintain.  

I am open to suggestions at this point.  Does anyone out there have any experience in starting something like this?

Wow, this was really old.  I just found it in my drafts.  Currently I am 13+ years cancer free.  I'll be 14 years Cancer free October 24th.

Old post:

It will be 4 years October 24th.  It feels really nice being that close to a milestone.  Only one more year until I get to be considered 'Cured' and can give blood again.  There is still that nagging in the back of my mind which occasionally worries about another re-occurrence of the disease. 

I even got Great News from my brother about Dad's cancer prognosis.  His Doctors have declared him done with cancer.  Dad is close to 80 and was lucky enough to have a very slow growing variety of pancreatic cancer.  His doctors believe it will be another 20 years or more before it becomes a problem again.  Dad really doesn't like doctors so I am quite sure that made him happy.  Now we just need to get him in to see a neurologist for an evaluation after last year's stroke. 

Mom has further declined.  Alzheimer's is a dastardly disease.  Lewy Body Dementia just makes it that much worse. 

Other than that I am back to my very bad habit of working too many hours again.  It is incredibly easy to fall back into that habit. 

Sorry all, I thought I posted this way back when.  I haven't logged into my blog in several years.  I'll just leave this here.

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 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.

EvilCompanyX 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.

Next!

I really should get on here more often, I don't have anything to say today about cancer other than I'm getting ready to shave my head again with St. Baldrick's.  March 25th is our  great green shearing day.  I can't wait!  I love being able to do something that makes a difference.  Since I have joined the skin head ranks, new treatments have been developed with the money raised.  When I started, there was no treatment for Neuroblastoma.  Now there is a treatment.  It is important to do something to help these kids.  

Resurecting an old post from the first year I joined St. Baldrick's:

"A very cheerful update today.  I got to go to the Church Hill Irish Festival with friends today.  My best friend, Mary, & I decided to join in the shaving fun.  We managed to raise almost $300 in about an hour, not bad for a last minute entry.  Then we let them shave our heads.  I have to say, it felt wonderful.  I think I'd like to start earlier next year and see if we can't raise some real money for St. Baldrick's Foundation. 

I even got to talk about my cancer & treatment a little. 

My best friend & I before, during, and after our shearing.  Photo courtesy of my friend Molly Blanton.

We had a wonderful time and I really want to do it again next year.  I think we look amazing!  We were cheered on by the crowd and even got a few hugs from complete strangers. 

This was the best Saturday I've had in 3 months!  The nausea was still present but managable.  I was sore, but didn't let that slow me down - too much.  It was so nice to get out of the house and have some fun on a beautiful day. 

Bonus: I won't have to worry about greasy hair, or buying shampoo, & it dries instantly.  Maybe I'll keep this style for a little longer than I had initially planned.

After a long and wonderful day, I'm off to bed.  May you dream of rainbows & unicorns!

Nameste!"

What a fun memory!  Now if only i were as small as I was in those photos.  What can I say, I am a work in progress.  If you would like to donate, please click on the link below.
https://www.stbaldricks.org/participants/mypage/889834/2017


On the employment front, I am looking for a change.  

I have my resume out and have 2 offers coming, I am told.  I spoke with another local company, but am not sure I am qualified enough for them.  They do hospitals and I know a lot more about lighting than I do power.    

I saw some former co-workers today who asked me to come back to the fold.  I just submitted my application there.  We shall see.  Now I just have to be patient and wait to see what the future brings.

Love and hugs for everyone!

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!