Cancer

All posts tagged Cancer

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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Transformation

Published May 4, 2018 by lynn k scott

Since giving up Facebook, I have gotten more into InstaGram.  Looking through all the pictures, I stumbled upon pictures of me before I got sick and before all the weight loss.  Every time I see those old photos.  I was my heaviest in 2013 (when my mother suddenly passed away).  It was around that time I had just begun a gluten-free diet. IMG_20180504_111055_175.jpg

I walk as my primary form of exercise and it’s not as often as I would like.  Now that chemo is done, I will resume walking.  I do not want to put on all the weight I have lost.

While diet change and walking do count toward a bit of the weight loss, mostly illness has been the primary factor.  I went through a lot with the Celiac’s and a then the tumor that grew for two years before I could get the medical world to believe it wasn’t an ulcer and finally treated me.

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If I had to have cancer, at least a massive weight loss was the silver lining.  I don’t often share photos of myself (and I rarely smile in them).  Here are some that show my transformation.  I did cut my hair to a pixie cut when I was diagnosed.  It was the only thing in my life I could control.  I’m actually happy with it.  Super easy to maintain and color (because I will not go gracefully into that grey night).

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Buh-Bye (Facebook)

Published April 30, 2018 by lynn k scott

I have made the decision to inactivate my Facebook account.  While I have made some amazing friends and have a dozen (or so) friends from church on my page, the ultra-liberalism and negativity of Facebook has become overwhelming.

My life is extremely chaotic and full of serious issues that I have no choice but to deal with.  From dealing with my own cancer diagnosis, my sister’s cancer diagnosis, and some legal issues my a couple of my sons are dealing with, Facebook doesn’t offer the support I need.

I did trial runs, if you will, by shutting off the account for a week or even just a weekend.  I proved to myself, I didn’t need that social platform.  True friends have multiple ways to keep in touch with me.  I started posting more to InstaGram.  I still can see pics of my friends and their children.  I can get spiritual memes from K-Love radio as well.

In my opinion, Facebook has grown too big for it’s britches and I can’t in good conscious support that particular platform any longer.  I have more time for my family and friends, in real life; not online.  It also allows me for more writing here and focusing on what’s important in my life.

I appreciate those who continue to follow me on this crazy journey.  There is definitely more to come….just bear with me.

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 12

Published April 20, 2018 by lynn k scott

My oncologist was nice enough to respond to a message I sent her office yesterday with, “what happened to the oncologist we referred you to”?   While I am not a fan of this doctor, there are literally no other doctors in the area that won’t cause me to lose at least half a day, if not a whole day from work, for each appointment.  She might as well have asked, “why are still part of my practice”?

Seems cancer wasn’t done messing with my life.  The other day, I received a message from my youngest sister’s best friend.  She found me through Facebook and sent me a private message.  I haven’t spoken to my sister in over four years.  Seems my sister was diagnosed with Stage 2 breast cancer.  It’s the same strain that took my other sister’s life.  The same sister this page honors (or tries to).

I’m not sure where our relationship is headed.  I was beyond hurt by her actions several years ago and firmly believe she was in the wrong.  I may not have been right, but I wasn’t allowed to see if I was or not.

That being said, we exchanged some messages.  She learned of my cancer.  I never told anyone who wasn’t in my life.  I didn’t want pity and I didn’t want them to care out of obligation.  I’m lucky I didn’t wear make up when I found out, because I did shed some tears.

I then thought I still have a chance of still getting breast cancer.  Having done battle with my current diagnosis, I’m not sure I could handle another one.  Then, my thoughts moved to that of my 12-year old daughter and granddaughter.  They would need to be tested in their 20s because of the family history.  I pray a cure is found before that needs to happen.  Am I holding my breath for that to happen?  Absolutely not.  I know cancer is a money maker for Big Pharma and the doctors who treat it.  They don’t want a cure because then they will lose billions of dollars with their poisonous drugs; all in the name of “treatment”.

While I keep saying I’m going to drink, I probably won’t.  Don’t need a hangover and try to get up for work.  I’m emotionally numb to this latest cancer revelation.   On the flip side, I have no tolerance for the medical world now.  I am done being nice.  I will not be placated.  I advised my oncologist’s office of my sister’s diagnosis.  Silly me thought they would know ‘kid gloves’ were now needed in dealing with me.  They are truly clueless.

As my youngest daughter has dubbed me, “NY Mommy” when I deal with anyone in the medical profession, I have chosen to embrace that term.  I no longer feel obligated to put up with medical nonsense.  I am in charge.  They either will understand this the easy way, or they will kick me out of the practice because they chose the hard way.  At this point in my life, I really don’t care either way.

I realize this isn’t Christ-like behavior.  However, I’m so overwhelmed lately, this is all I can manage.  I pray for grace and the ability to handle this situation better.  If it comes to pass, then it’s His will.  Til then, NY Mommy is in the house!

This is the reality of a cancer patient.  Pretty ribbons are nice, they have meaning, but it’s not the true showing of what cancer patients go through.  That’s what these blog posts are about.

I’m still adding my fundraiser link because I have still have expensive testing/scans that need to take place.  Any monies above that, I will donate to my sister because she’s feeling the crushing expenses of having a cancer diagnosis.

Cancer Journey: Part 11

Published April 6, 2018 by lynn k scott

It’s been a while since I’ve updated.  I haven’t been able to bring myself to do so.  I’m at the end of my treatment; or so I’m told.  I have 3 days left of meds and I won’t be taking them.  I’m OVER IT!

I’m over people asking me what I’ve done to my hands.  Depending on the person, I just say it’s a medication side effect or my chemo meds did this.  Funny, doctors couldn’t be bothered to tell me how my hands and feet would dry out.  How my skin would peel off in strips (off my feet).  How my hands would crack, bust open and make using my using my hands a luxury.  Can’t even open a bag of dog treats when my fingers have sores on them.  You truly have no idea how much you use your thumbs; until you can’t!

I’m tired of “that look” people give me.  They know I have cancer but the pity look sucks.  I haven’t changed but am now seen as my disease and not the person I was.  I’ve cancelled my upcoming oncology appointment.   Why go?  For her to ask me the same questions she’s asked for the last 6 months?  For her now to tell me to come back in 3 months?  For me to remain in limbo if the cancer is still there or if the poison of chemo actually worked?  I’d rather not waste my time or what little money I have left. I’ll go next month, if I feel up to it.

I have testing that still has to be done and I just don’t want to do it.  Let’s not mention I can’t afford it.  Sutter Health Plus is a joke of insurance.  There are no native-English speaking, female oncologists in my area.  If the insurance is offered for my area, I should have the ability to see a doctor who makes me feel somewhat comfortable.  I should be able to understand her.  I shouldn’t have to discuss very intimate details with a male doctor.  I can waste time traveling over 30-90 minutes away from my home, just to receive the proper care I should already be getting.

I have learned the medical profession has no empathy.  They see cancer patients, day in and day out.  It’s their routine.  They don’t live our lives or suffer our side effects.  A few looks of pity from nurses; maybe.  Doctors just don’t care.  They have a bunch of patients to see and you’re just one of them.

I am angry.  I know the medication has played a role in this.  My emotions are all over the map and I can’t keep them in check.  I have given in to the anger and just want to be left alone.  I have been here before.  It’s a scary place and hard to leave.  I’m pushing people away.  I have deactivated Facebook; for now.  I just don’t want to interact with anyone.

I am creating a bucket list.  I doubt any of it will ever happen. It’s truly the only thing I look forward to; regardless if the items are mostly pipe dreams.  I just continue to work, day in and day out, as if nothing is wrong with me.  I have taken one, half-day, since I started chemo.  The rest of the time, I have been at work.

I continue to pray and I know people are praying for me too.  Right now, it’s not any comfort.  So, it’s just another day in the life, of the average cancer patient.  So, I still exist, but I can’t say I’m living.

 

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Cancer Journey: Part 10

Published March 16, 2018 by lynn k scott

It’s been a bit since my last update.  Life’s been challenging.  I thought I had a handle on things and I really don’t.  I should resign myself to Murphy’s Law and that my house is its headquarters.

Overall, exhaustion has been my new BFF.  Every weekend, I am taking extra naps just to stay functional.  I had another drawn out insurance/specialty pharmacy/doctor’s office issue.  Someone, which no one will own up to, put a notation for pre-authorization on an existing prescription (with one refill left).  This meant, I had to wait for all the different parties to do their job.  After much yelling, crying, sarcasm and general disdain, the issue has finally been resolved.  I had to constant follow-ups for anyone to do their job.  We’re not talking aspirin here, folks.  It’s chemo-medication that costs a small fortune.  You would think those in the medical field would have some compassion and a sense of urgency.  Please don’t hold your breath on that; you’ll end up dead waiting for that to happen.

I have come to the conclusion that once I receive my meds, I will be asking for a referral to a new oncologist.  It’s clear this current office isn’t working out.  I’m sure everyone there will have a small celebration to see me leave.   If you advocate for yourself, it seems you are not the correct type of patient for many of today’s doctors.

It’s sad there are more doctors who care less about working with informed patients, who are in charge in making decisions about their care.  They shouldn’t be made to feel bad about their decisions.  Have snide comments thrown at them, such as “well, you chose not to do IV chemo”.  You’re right, I chose to live my life, not be dependent on everyone, continue working, supporting my family and raising my daughter.  It’s funny, they know how expensive medication and treatment costs, but they chastise you for not giving up your job, going on disability (which doesn’t support much) and losing quality of life.  That’s what going on IV chemo would have done for me.

I working on simplifying areas of my life.  It’s definitely a work in progress.  I know the value of time, family and friends.  Right now, I’m in limbo as to if treatment is working, if I will need more, if I will find out it’s spread.  There are lots of things one can think about while being in such a limbo.  I try to focus on today and accomplish what I can.  Making memories is a top priority, should something change; not for the better.

Either way, ups and downs continue.  It’s a daily battle that I still plan on winning.  I appreciate all who have said prayers, made donations for my care, or can relate to this ongoing struggle.

 

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