Everything Must Come to an End

I know I haven’t posted in quite some time.  The beginning of 2019 only brought misery, heartache and misfortune.  It’s figuratively beat me like a mob enforcer collecting on a bad debt.  I am waiving the white flag and throwing in the towel.

I QUIT!

This blog is no longer therapeutic.  I’ll be saving my writing and once I’ve completed that this blog will be deleted.  I have deleted all Facebook and Instagram accounts too.

Taking a major step back and kicking social media to the curb.  I’m taking a step back from church (except enough my daughter to sell Girl Scout cookies as several people expressed interest).

So there you have it.  I’ve enjoyed the few years I have had here, but I find myself without strength or ambition to continue this venture further.

REBLOG: MeWe Review: Danger- Your Privacy Is at Risk- This Is a Facebook Alternative — Mostly Blogging

Quite a stir. That’s what the impending closure of Google+ caused. The announcement caused quite a stir twice: once when the site first initially announced it was closing due to a data breach, and then again when Google+ announced it was closing four months earlier than planned due to a second data breach. I came…

via MeWe Review: Danger- Your Privacy Is at Risk- This Is a Facebook Alternative — Mostly Blogging

Cancer Care Further Delayed

Friday, I was supposed to have an appointment with a new oncologist.  The insurance, without my consent, chose my doctor and told my primary doctor to have me call for an appointment.

I did and told them I don’t see male doctors (which of course, that’s who they selected because they can ignore my preference; by law).  I let the office know I needed a female oncologist.

After the new patient coordinator made a condescending remark about, “I should be able to understand her”, the appointment was booked.  I updated my phone number so they could call my cell phone if they needed to reach me.

Five minutes before I was to leave work for the appointment, a 45-minute drive from my job, I received an email cancelling the appointment.  They called the home number as my cell number was never updated (sigh + eye roll + not surprised).  They told me the staff wasn’t aware of the special conditions of my appointment.

After I called them unprofessional for pulling this stunt at the last minute, the Office Coordinator was nice enough to put in writing some clarification points.  Apparently, only one doctor agreed to see me.  It’s common practice all doctors in an office will see a patient and are backup to the primary oncologist.  Not in this case.  It would seem because of my ‘history’ only one doctor would agree to see me.

My ‘history’ turns out to be one of non-compliance.  I didn’t let that one go.  I am not non-compliant; it doesn’t exist.  What exists is a patient’s right to choose his/her treatment.  I have not completed several tests ordered because the doctor left out crucial information that negated my right to informed consent.

I couldn’t complete the CT scan that had been ordered because the facility, that is able to start an IV and add a contrast dye was unable (more like unwilling) to numb the arm before the IV was inserted.  It takes anywhere from two to four attempts to start an IV in either of my arms.  I will not be a pincushion because it’s easier for them not to inject an additional needle in my arm.

I still have no care.  I requested yet another oncologist to see me.  Now, I have to wait an additional 7 to 10 days for that approval to be reviewed.  Then I have to see if the oncologist I chose  (an hour away and a bridge toll) will see me.

Patient care, especially with a life-threatening disease, should be taken seriously and doctors should only receive the patients file with diagnosis and current treatment.  All other matters are completely subjective.  This subjective documentation has cause a lapse in care.

If you  have a moment, please click HERE, sign my petition and share it.  So many people are affected by cancer and we need to stop the health care industry from villainizing patients for choosing that best suits them.

Sutter Health Plus – Denying Proper Care

I’m still trying to get the care I deserve.

The latest update:

I am being forced to see a doctor, not of my choosing.  Heck, I didn’t even know I was being referred to this provider.  No one returns my calls.  Three different people were supposed to call me back; no one did.  The doctors and insurance are clueless as to what communication means.  I AM THE PATIENT!  I am to be consulted and I participate in my care – that is my right!!!

They originally set me up with a male doctor and I was told regardless of what I prefer, they aren’t mandated to accommodate me.  I finally got a to make an appointment with a non-English speaking oncologist.  I am not allowed to choose someone I would feel comfortable with.  My care cannot progress if I cannot trust my doctor.  At this point, care is functionary only.  I cannot heal properly if I am under duress at what will be added to my file because I don’t respond or act within preassigned and undisclosed parameters.  I am not allowed to give feedback or ask clarifying questions without repercussions.  Is that anyway to treat anyone, much less someone with a cancer diagnosis.

The insurance company refuses to allow me to see any other provider.  My care is being compromised.  I tried to ask the scheduling person a clarifying question (very nicely) and she loudly states, “Don’t you yell at me!”.  I hadn’t.  However, because of the derogatory notations in my account, this is the norm for every phone call.  I am accused of being rude every time I attempt to receive help.

Doctors should only be able to read medical charts.  The inaccuracies of my “dismissal” from the previous oncologist negate to mention the SEVEN requests to see other oncologists.

The blackballing of my care continues.  If there are any attorneys within N. California who can right this wrong, please contact me.

Please click HERE to sign, share and ask others to sign my petition.

 

Help Make My Voice Heard

I created a petition to alert the state of California to how cancer patients are being treated by Sutter Health.  If you could find it in your heart to sign and then reblog, share on Facebook, Twitter, or any other platform, I’d appreciate it.

It’s time we told insurance companies they can’t let doctors control who they do/don’t treat.  We are all people.  No one facing a life-threatening illness should have the stress of no treatment options because someone deemed a patient not worthy.

You can find the petition HERE.

Thank you for your support in this latest cancer development.

Kicked out of Sutter Oncology/Hematology

I just learned today, after following up, again, on an oncology referral, that I have been dismissed from Sutter Health Oncology/Hematology. I never received the original dismissal from my first oncologist. Apparently, after I saw my PCP for another referral, because my existing oncologist was bought out by John Muir (which they failed to advise), I was blackballed by Sutter.  I only learned of this today, over the phone that I am not allowed to see any doctor in oncology/hematolgy.

Sutter is refusing to treat a stage 3 colon cancer patient because I couldn’t understand my Russian-born oncologist. They are collecting premiums and denying care.  I went through the steps of seeing a PCP for a referral for an established disease that Sutter knew of for the previous 10-months.  Sutter told me I had to do this to see another oncologist and they knew full well I couldn’t be seen by anyone in Sutter who could treat my cancer.

My only option is to my PCP or go to urgent care; neither of which can treat my disease.  I can go to the Emergency Room but they can’t refer me to an oncologist, whom I’d have to see for follow-up care.  I am only allowed to see someone out of network and they have no one for me to see.

I am allowed to choose my doctor. It is not out of the norm for a female patient to want a female doctor. Based on the medical terminology, it is not out of the norm to insist on a doctor whom I can understand, without the aid of her staff.

Have I been challenging? Yes! Have I been rude and sworn? Yes. Why? Because I, ME, am in charge of my care. I, ALONE, determine my treatment!!!!

Doctors take an oath to treat patients. Yet, they pick and choose who they will care for. The ones who blindly go along with their godlike mentality are their preferred patients. How dare the patient question them? I am the one living and battling cancer – NOT THEM!

Please share this. Let the world know how cancer patients in Northern California are being treated.

 

Still waiting…

Today makes two weeks since the hoop-jumping commenced.  I did as I was required; saw my PCP to get an oncology referral (even though my insurance knows I have cancer).

My PCP claims they called me to say the referral was approved and to call the oncologist.  That was pure fabrication.  I only found out, because I called a week after the appointment since I hadn’t heard anything.

This past Monday, I called the oncologist’s office and was told they hadn’t even reviewed the file yet.  They couldn’t tell me how long it would take for the doctor to review the file to see if she could even treat me.  She only reviewed files in between seeing patients.

Now my PCP was told I was having anemia symptoms, yet she didn’t flag the file with any urgency.  She put it through as a basic referral.  This is the problem with using a PCP for conditions they don’t treat.  If they are to facilitate care, then listening to the patient would be a good place to start.  If the patient deems the situation as an issue, then the doctor has an obligation to process that information accordingly; especially if they are symptomatic.

My energy levels are falling.  Day to day life is becoming more and more challenging (again).  Yet, I sit and wait because the medical profession has no sense of urgency.  I’ve upped my caffeine intake and back to taking naps the second I get home from work.

When will doctors get a clue they are messing with people’s health by their lack of concern.  They aren’t battling a life-threatening disease.  They aren’t waiting in limbo to see if the cancer has spread or new cancer has emerged.  They have all the time in the world (at this point).

Yet, I and so many like me, are dependent on a broken system that doesn’t value life.  This is our reality.  We struggle, we worry, we pray and we just wait.

Home Educating and Working Full-Time

I am employed, full-time, outside the home.  I am also a home educator for my daughter. This post is to show working parents you can work (if need be) but still provide a quality education to your child(ren).

Home education, in general, is time consuming and hard work.  In addition to reviewing curriculum, reviewing coursework, grades (if you’re required by your state) and teaching your child.  Throw a full-time job into the mix and it’s downright tiring.

Yet, I wouldn’t change our educational journey for the world.  It’s time that I get to spend with my daughter.  Granted, she’d rather be watching BTS or whatever music group has caught her attention, but it’s precious to me.

So, how do we make it work?  When she was younger, I would send work with her that could be done independently, while at a sitter’s house.  Now that she’s older, we go over “homework” that she will do while I’m at work.  She also has daily chores and she has to clean whatever mess she makes in the kitchen.

In addition to the basics such as history, English, math and science, Bible, she practices her guitar.  Some nights we dance to YouTube videos, she practices skateboarding or uses the Xbox for physical education.  We read books aloud and discuss them.  Once I, or her father arrives home, she is allowed to get the laptop out and log in to do her Spanish lessons.

A typical Wednesday goes like this:

• I work
• She calls me to check in (and clarifies any homework problems)
• She practices guitar (daily)
• I leave work early to pick her up for guitar lessons
• Thirty minutes later we head home to prepare dinner
• Depending on what dinner is, we may have time to read a chapter or two from our current literature selection
• She helps prepare dinner and/or sets the table
• We eat as a family and then we clean up the kitchen
• Education resumes – time to review the day
• I look at each assignment.  If there were problems (say with math) they are addressed
• We cover new assignments
• Discuss her day

While this may seem like a lot, it’s not too bad.  No two days are the same.  We adjust as the schedule as life plays out.  When I had to have surgery, she brought her books to the hospital and yup, her education continued.  Flexibility is something you have when home educating.

While cooking dinner we discuss the food we are preparing.  Since my daughter has a huge cancer risk (my side of the family is riddled with various forms), knowing what foods offer and how a our bodies process varies nutrients is always forefront in our home.  I am on a special diet, so she learns what different herbs, spices and vegetables have to offer.

Above all, education is more than books.   I will not say it’s easy.  I will not say there are days I want to give up.  There are days my daughter is less than cooperative.  When all is said and done it boils down to learning how to have life skills, learning to communicate effectively and knowing the quality time is irreplaceable.

 

 

Sitting in Judgement

I reactivated my old Facebook account.  I knew better…but, I did it anyway.

I have a very hard time with Pinktober.  It has nothing to do with raising awareness for breast cancer.  It has to do with a large number of organizations and companies cashing in on cancer.  Losing my middle sister to breast cancer and knowing my younger sister is fighting the same strain has made me more vocal.  To some, I’m jaded.

People need to understand there is not equal medical treatment, insurance or affordability nationwide.  That being said, I DO NOT agree to universal health care.  I am merely pointing out what I know as fact in California.

I will not tolerate “breast cancer awareness cookies”.  Making cookies in the shapes of obnoxious looking boobs or making them looked squished (like a mammogram would do) is not ok in my book.

Now, I worked full-time through my chemo treatments.  I was out of work a total of two weeks and that was to have the tumor removed.  I still worked, every day; from the hospital and at home.  I could not afford to live on disability.  Reluctantly, I had to start a gofundme account to pay for chemo.  I couldn’t afford it on my own.  I deleted the account after my last chemo payment was made.  Oh wait…most people don’t know my husband was out of work for two months last winter; and was taken by ambulance and hospitalized.  Nothing like more financial strain….

As you know, I recently had to purchase another vehicle.  I chose a sports car.  I was upside down on my trade, I had horrible credit.  The fact I was financed was nothing more than a miracle.  My car looks nice, but in reality, it’s the same price as a Honda.  I figure, I’ve lost so much to such a horrible disease, have been through hell this last year, it’s time to live.  At this point, I do not know if I live to finish making the car payments.  That’s MY reality.

Yet, someone still felt the need to sit in judgement of me.  Saying my car is too nice.  Those mods I’ve done are expensive.  Well, my husband has a challenger five years older than mine.  He did a lot of the work and had spare parts.  He’s also been doing show cars for over 25 years and has a lot of industry friends.  We don’t pay full price for anything.  I also work two jobs.  That’s right.  I have had cancer for a year, been off chemo for six months and picked up my second job three months after finishing chemo.

I was basically called a scam artist for having two separate parts of my life judged as the same; chemo payments and car payments.  What gives anyone the right?!

Am I jaded about the medical industry – DAMN RIGHT I AM!  I also have good reason.  I have not been shy about what I have gone through.  I do not have great care.  I am not a good patient and have been punished for that.  I have been punished for demanding that doctors and their staff allow me to be in control of my body and treatment.

I can’t stop anyone from judging me, but I’ll be damned if I am to keep quiet on the medical world’s shortcomings or the scams of Pinktober.  Just because it’s pink or coming from a charity, does not mean their intentions are good or the true patients are receiving anywhere near what is being collected.

If you are God, you may judge me.  If not…a little empathy and allowing me to vent won’t kill you.  But by hell or high water, you are not entitled to judge me (or anyone else; for that matter)!

Regroup – Refocus

Last week was challenging for me in almost every aspect.  I chose to believe a little cheat on my diet wouldn’t do too much harm.  Add dealing with my mom’s (Heavenly) birthday, dealing with meeting a new PCP (primary care physician) just to get a referral (which is BS in general), exhaustion, choosing to try takeout instead of making food and had a couple alcoholic drinks, I was a mess.

Needless to say, I felt even worse for my stray to my old ways.  My mind, working overtime, took my better judgement and drop-kicked out of the window.  I managed to gluten myself, eat food I knew better to consume or just plain didn’t eat.

Being gluten-free and (mostly) vegan, it’s not easy to just grab a snack.  I need to carefully plan my meals and snacks.  I tried to pretend I didn’t need to.  I know better than to think like that.

Yesterday, we got out of town, for the day, and went to Roseville.  It’s a city past Sacramento and where we eventually want to move to.  We chose to let Yelp choose where we would eat lunch.

I found this little gastropub, called The Brickyard.  It offered a bit of everything.  However, I was super excited to see they offered Beyond the Meat (vegan) and had gluten-free buns.  I could have sworn a light from above was shining on me and I heard the angels singing.  I have yet to find a restaurant where I don’t have to modify the food or just stick to a salad.

After a bit of confusion on malt vs balsamic vinegar for my salad (had to explain why I couldn’t have the malt vinegar) one of the staff and I were talking.  She was a complete stranger who completely validated my health concerns, eating a vegan diet and homeopathic care as she personally had experience in this are.

She is controlling her own illness through diet.  It was what I needed; understanding when most people aren’t.   I wasn’t a “problem customer” to her.  She was  someone who hasn’t seen me struggle or was taking pity on me.

My husband, at one point said, “you’ve cheated before, just eat the dressing”.  I had to remind him how sick I was last week and I can’t continue that behavior.  He goes along with my eating habits for the most part.  Although, I will eat eggs now because he was worried about my protein levels.  It wasn’t worth the nutritional argument.  It was his way of showing concern.  A couple eggs won’t hurt my diet.

We went shopping last night.  I bought food to prepare and more veggies.  Prepped all my meals today.  I even broke out the juicer and made some (mostly) carrot and pineapple juice.  I drank several cups.  It was if my body was saying, “ahhhh….that’s the stuff!”

Needless to say, I’ve regrouped and now am refocused.  We all fall.  We all have challenges.  We can let them break us or we can get fortify our mind, bodies and souls.  We can use that fortitude to help others when they stumble.