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Medical World = STRESS!!!

Published May 18, 2018 by lynn k scott

I have been patiently waiting for my medical insurance to decide whether they would allow a referral to a provider outside the network I am currently enrolled in.  They had 30 days in which to do so.  That’s the equivalent of molasses going uphill, on a glacier, during a blizzard.  I mean really, oncology referrals should take as long as possible because we’re only speaking of a human life.  Shoot…that sarcasm reared its truthful head again.

Even though I have completed chemo, I had no follow-up with my oncologist because she refuses to answer my questions without an appointment.  There wouldn’t be messaging capabilities if we had to make an appointment every time we needed to ask a simple question.  No wonder it takes weeks to make appointments these days.  Sorry, I digress.

It’s been very peaceful with the new job and not having any contact with anyone in the medical industry.  Yet, today, that peace was shattered.  I answered an 800 number.  The good thing is I didn’t have to go through their carrier’s horrendous hell of a voicemail system to return their call.  The unfortunate aspect was I had to deal with someone who doesn’t understand the proverbial, “you”.

While I am far from the best or even compliant patient, customer service representatives need to understand the tone of frustration compared to yelling.  It’s one thing to be sympathetic to someone’s plight of an insurance nightmare.  It’s a completely different to truly be empathetic.  Then, to add insult to injury, tell me I am yelling when I am merely expressing frustration.  There is no doubt when I truly begin to yell.  As my daughter puts it, “New York Mommy” shows up at that point.

It never ceases to amaze me how shocked people are when I say, “you have no idea” and then try to argue the fact with me that they do.  Unless the person that I am speaking with has filed multiple grievances, prepped their children for the “worst case scenario”, begged for help and to see a provider they can actually understand, DO  NOT tell me, “I understand”!!!  It’s unprofessional; to say the least.  Learn the difference between empathy and sympathy; they are not the same.

Am I overly “touchy” where my health care is concerned?  Absolutely!  Having been neglected after surgery, passed around to provider after provider and generally ignored when I insist on being in charge of my care and letting doctors only advise has me extremely “jaded” to most people.

Healthcare is non-existent.  Health profits is what drives today’s medical profession.  Patients die every day.  I truly believe insurance carriers AND providers are facilitators of this because if the patient doesn’t fit in the “acceptable” boundaries, they are discarded; regardless of how much assistance and/or treatment they need.  Nice to know it’s reached the call centers.  The entire system needs a course in compassion!

So ends another medical rant.  Off to pray for tolerance and healing.

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Cancer Journey: Part 13

Published April 20, 2018 by lynn k scott

I logged in to post another update.  I realized my last update was still in the “draft” stage.  I could have sworn I posted it.  Oh well, it’s up now, so there will be back to back posts for you to read.

As you may have noticed, I have changed the Featured Image because my fundraising link contains my sister’s battle too.  I’m sending her current donations as she is still out of work from her surgery.  Chemo has yet to start for her, but I’m know she’ll have more expenses when that starts.

As for me, my latest oncology referral was rejected.  The insurance allowed me to see someone in their network, but she’s technically not in my network.  Only problem, they neglected to find out her specialty and she only treats breast cancer patients.  Lovely, another oncologist referral bites the dust.

The nurse at my current oncologist knows I want to transfer and I know my oncologist wants the same.  Her suggestion?  Seeing the other female doctor in the same practice.  Ummm….NO!  I didn’t tell her I want a native English-speaking doctor.  I shouldn’t have to figure out what the doctor said because I can’t understand her.  This new doctor isn’t a native English-speaker either.  Not to mention, I know doctors speak to each other, especially in the same practice, and I can’t guarantee quality treatment because of this.

I have no option but to stay with the same provider.  I have asked for my CT scan just to be scheduled as I can’t do so with a new doctor; which was the plan.  I had to tell them the reason I told them of my sister’s cancer was not for sympathy, so I could get scanned for breast cancer too.  I really shouldn’t have to point that out.  They are in the cancer business.  It’s their job to know that if two sisters have/had the same strain of cancer, then I am at greater risk.

Has my scan been requested yet?  Nope!  After all, why should they have a sense of urgency?  Their life isn’t hanging in the balance.

I know my cancer updates aren’t cheery.  They are filled with sarcasm and are a bit jaded.  This is reality.  The medical world has lost its empathy.  Those facing life-threatening diseases aren’t supposed to be angry.  We’re not allowed emotions.  We’re supposed to blindly follow whatever our medical “professional” says.  WRONG!  I’m now fighting back and I’m not just talking about the cancer.

I have been researching alkaline diets.  Shocking to those who know me, but I’ve even cut back on my coffee.  I’ve switched half my intake to green tea instead.  I will never give up my coffee, but I know changes are needed.   Except for today, I my diet has been at least 70% alkaline foods.  I plan on continuing this path.  Oncologists don’t want to hear there are homeopathic options.  Why?  Because they would lose stock money that Big Pharma pays them to push their poison.  Sorry….I digress.

In addition to learning my sister had cancer, another tragedy has struck my family.  I will not go into details.  However, I will ask for every prayer you can spare.  It’s a horrible situation.  I have inactivated my FaceBook account and have no plans of reactivating it any time soon.  People are ruthless and forget they are condemning someone without facts, knowledge of the incident or that family reads the same thing they do.  That’s all I’m going to say.

I’ve been praying daily for myself, my sister, my family, guidance and countless other issues.  There’s a purpose to all this.  I just wish the reasoning would manifest sooner than later.

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Cancer Journey: Part 5

Published December 8, 2017 by lynn k scott

I met with a new oncologist yesterday.  Truth be told, I had several mini-meltdowns, at work no-less, trying to get an emergency referral to this new doctor.  I’m on my “off” week for my chemo-cycle and needed the referral, be seen and have the medication ordered and delivered, by today, in order to stay on track.

Prayers were definitely answered.  If you have followed up to now, you know I have received less-than-stellar care for my cancer.  To the point, the doctors should be sued.  Yea, it was that bad.

I walk into this new office; very apprehensive.  Very nice office staff.  They pointed out coffee and tea were available, if I wanted some.  Coffee?  That HAS to be a sign!  The computer system wasn’t cooperating, and the staff was apologizing to me for the wait and having to switch rooms.  Respect?  I’m not used that.  Such a simple thing, yet so many people no longer offer common courtesies.

Then I met the doctor.  She genuinely seemed concerned.  Part of the reason is because I’m technically too young to have colon cancer; without a family history of it.  I told her, what I have told a handful of doctors, there has been a lot of different cancer in my immediate family.  She took note of it.  Then mentioned something no one else has:  Lynch Syndrome.   She thinks I may have this.  From what I have read on the syndrome, it would explain the cancer in my paternal grandmother, my father and my 37-year old sister, and of course, now me.

I have previously declined genetic testing because two previous doctors were focusing on my risk of breast cancer.  They failed to elaborate when I didn’t see a need for it.  Based on other family member’s testing, I am almost certain I have an increased risk of breast cancer.  I didn’t need a test to confirm that.

My new oncologist pointed out, if I had Lynch syndrome, it’s more than just treating me; it could affect my children.  They would have a 50% chance of having the gene that causes the syndrome, thereby increasing their risk of certain cancers.

I am extremely grateful and blessed that I have been assigned to an empathetic, compassionate and caring physician.  This is how healthcare should be.  It shouldn’t be getting patients in and out in record time with minimal information.  Communication is so crucial, yet, often downplayed because too many doctors have their routine and expect patients to conform to it.

Toward the end of the appointment, she said, “you have five children and you need to live.”  That almost brought me to tears.  My chemo has been pushed out (more cycles added).  Extra testing has been ordered.  Vitamin D has been added to my daily dose of pill consumption.  There will be a PET scan and other testing once all the chemo has been concluded.

Overall, my prayers and those praying for me have been answered.  Prayers are still needed (and welcomed) as this battle is far from over.  At least now I feel like I have a fighting chance.

Cancer Journey – Part 4

Published December 1, 2017 by lynn k scott

This is the second week of the second chemo cycle.  I would say it was almost uneventful; well, up until last night.

I realized I had way too much medication left in one of the bottles.  I realized I hadn’t been taking enough.  Part of that is my error; part is on the doctor and pharmacy for how it was written.  It was written to where the dosage could be take 4 pills daily.  The reality is I was supposed to take 4 pills in the morning and 4 in the evening.  Add in, this new idea of putting all the dosages on the same label, only adds to the confusion.

I will get three and a half days of the correct dosage.  In addition to the poor writing of the prescription, it the oncologist is to blame for refusing to cover the actual dosage with me.  It really goes back to the on-going poor communication.

As I was discharged for the Cancer Center’s care, for lack of communication, I was going on my own these two weeks, with no medical supervision.  It’s proven not to be an issue where the medicine is concerned.

Currently, I’m still not having horrible side effects, which would require a medical professional’s intervention.  Thank heaven for small miracles.  Without having a doctor to consult, my only option would have been to go to the local emergency room.

It’s a sad day when such a serious medical issue is handled so carelessly.  Today, I’m officially registered with a new carrier and provider.  I meet my new Primary doctor next week.  I hope she can get the emergency oncology referral taken care of and I hope I can get my medication next week as well.

I put this as a status (on Facebook) yesterday.  I wish more doctors understood this concept.

If more doctors would realize there are patients in tune with their health and we use them as guidance and not God, healthcare could actually be about care and not maintaining someone.

Continued prayers would be appreciated as this battle is so up-in-the-air.

Diagnosis: The Big “C”

Published October 12, 2017 by lynn k scott

My blogging isn’t up to par as I have slacked off considerably with making sure I post at least once a day.

I grew tired of primary care physicians passing the buck, their staff refusing to schedule appointments (while in severe pain) because I wasn’t ‘nice enough’, being ignored when discussing symptoms or just regurgitating a previous ailment.  I took myself to the emergency room (at an expensive cost; considering my copay).

Well, I was right!  There was something wrong; seriously wrong.  When all the testing was said and done…a mass about five inches long, blocking 80% of my colon was discovered.  Major surgery was in my immediate future.

After a scheduling fiasco with the hospital, the surgery was finally completed.  The mass sent to pathology for testing.  A week later, the report was in:  Stage 3 colon cancer.  I had managed to convince myself the mass would be benign.  I recovered so quickly from surgery.  All was well again…silly me…I knew better than that!

Let’s recap (if you don’t follow my blog)….

  • Father:  Stomach cancer – Stage 4 (passes within 3 weeks of diagnosis)
  • Mother:  Non-Hodgkins Lymphoma (beats it – but passes for another reason)
  • Younger Sister:  Breast cancer – Stage 4 (passes within 9 months of diagnosis)

I now have joined the rest of my family.  There are only two of us left, out of the original five members in our immediate family.   Four out of five people in one family being diagnosed with cancer…what are the odds?  Don’t answer that!

If my faith wasn’t so strong, I’d be a complete basket case.  Have I shed a tear or two?  Of course!  You’d have to have a heart cold as ice not to have such a diagnosis elicit some type of emotion when learning you have cancer and stage 3; at that.  Truth be told, this is the calmest I’ve been about a major life event.  I know that’s God’s grace.

I know He has a plan for me.  I wish it didn’t involve this disease.  However, I have many friends and family praying for me.   I have found an amazing church that has been incredible in supporting me.  As it stands, I have a 57% chance, without any further treatment, the cancer is gone.  Treatment will increase those odds, as there isn’t a test to say I still have the cancer.

What hit me hardest?  Telling my older children, who watched their grandparents and aunt pass away, that their mom was now sick.  Then, telling my youngest, who only knew a little of what claimed her aunt, at the tender age of 37, her mom had a similar disease.

Most days I’m good.  Very tired as I am extremely anemic at this point.  Other days, I’m angry.  I’ve dealt with so much already.  I didn’t, “why me?” the issue.  It is what it is.  I am doing my best to stay positive, especially for my youngest; the only child at home.

My perspective has sharpened a bit.  I’ve jotted down some details should the worst case scenario come full circle.  Not being a stranger to cancer and what it can ultimately do, I am capable of making decisions that I don’t want to leave to family.  It’s unfair to make them have to make decisions on my behalf.

I will go through the motions.  I’ll probably be in debt trying to pay for medications, increased insurance premiums and everything else that goes with having to say, “I have cancer”.

I will not be pitied.  I will accept prayers, visits, bonding with family and friends and knowing making memories is extra special now.  I am also continuing to work on the Kathi Cares Program, which supports local cancer warriors.

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