Sutter Health

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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.

 

My Chemo Fundraiser

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Cancer Journey: Part 9

Published January 30, 2018 by lynn k scott

I know I’m a few days late posting the next installment of my cancer journey.  I almost laugh now because in one of my support groups, they posted this….   1517344294492.jpg

Now I covered up a word (use your imagination), but it’s still funny.  In fact, my response to this was, “I’m small enough to be a hobbit”.  So…onward with my journey…

I logged into Sutter Health’s system yesterday to pay for my labs and doctor visits.  In addition to chemo meds, these charges are always waiting to be paid.  I started exploring their system and found my visit summaries from my oncologist.

Whether it was lack of sleep, a chemical imbalance because of the medication, or the fact fighting cancer is mentally (in addition to physically) exhausting, I became an emotional wreck.  First, I was very angry at what was noted and then I cried all the way home from work.

I am more than aware these notations are not for communication with the patient.  However, if doctors are going to note conversations or their interactions with their patients, they need to stop the one-sided comments.

For example, one of the notations state that I “refused IV chemo”.  First, let’s use the appropriate words.  I was given information, made an informed choice about MY health and “declined” IV chemo.  It was my choice.  Using “refused” sounds like I was an obstinate child who didn’t do as her parents ordered.  They think “informed consent” is a punchline of a joke instead of a patient’s right.

Several observations use the word, “denied”.  Denied symptoms, denied having this or that, etc.  In my opinion, that’s another word that shouldn’t be used in this area.  I was asked a question and I answered that it didn’t happen or didn’t apply to me.  How about “negative” and “positive” when correlating responses to symptoms, side effects, etc.  Using the word “denied” implies the patient isn’t being truthful.

My doctor was nice enough to notate how I am generally unhappy with my treatment.  Yes, I can say that’s a fair statement.  What isn’t accurate is she neglected to mention how her nurse verbally attacked me for refusing the preferred IV chemo when I asked for another medication because I am having trouble paying $232.68. every three weeks.  Or I’m unhappy Sutter Health chooses to only provide cancer support groups for one area of the county, during the day and it’s not accessible to all patients.

Now, testing showed up in the notes.  I refused a few suggested tests.  Why?  One again, was over 20 miles away and would cost me a day of work.  They have an imaging center close to where I am, but refuse to offer all testing there.  I don’t think it’s out of the question to provide genetic testing in all locations; esp. when it’s just meeting with a doctor and taking a DNA swab.  Silly me for being practical (and cynical; at this point).  Oh, she also left off that I mentioned I couldn’t afford the $350 for another one of the tests she suggested.

I am fully convinced healhcare doesn’t exist.  There is no caring on behalf of these desensitized doctors and nurses.  A health system is in place to offer treatment; if you can afford it.  If you can’t, they don’t want to hear it.  They will give you referrals, but most don’t work out (make too much money, not enough grant money, not old enough, not the right cancer, etc.).

So, going forward, to protect my sanity, answers will only be “yes” or “no” or “fine”; unless some further explanation is needed.  This is not the first time my character has been accosted by those who are supposed to be helping me.  I neither can fight this notation battle, nor do I care to.

I read another cancer blog today where the writer received some negative feedback because she wasn’t upbeat enough.  That’s how I feel sharing this with my friends and church family.  I feel negative.  Yet, the reality is, this battle is far from easy.  The trials we have to go through aren’t perky, happy, or fun.  In reality, battling cancer SUCKS!  It’s horrible.  Doctors only care about treating the body; to hell with the mind or soul.  The purpose of my documenting this is to give a realistic guide to what I am having to deal with.  This is a real-life, first-hand accounting.  I know it’s hard for some people to deal with; but I’m not sorry for sharing what gets covered up with mainstream accounts.

It’s almost depressing to feel so alone, while trying to retain your dignity, sanity and carry on in your daily life and battling a life-threatening disease.  I take longer showers now so I can cry uninterrupted and it won’t be visible.  My 12-year old doesn’t need to see my worries, insecurities and breakdowns.  Being strong has never been harder.

I am eternally grateful to those who have been able to donate, which allows me to continue treatment.

Chemo & Medication Fundraiser

Cancer Journey: Part 6

Published December 27, 2017 by lynn k scott

This is not the easiest post and it doesn’t have anything to do with the status of my diagnosis.

The last couple weeks have been tough.  I had to change my insurance plan, at work, and elected the “gold” versus the “silver” plan, in order to get rid of the annual deductible and bring down the usage fees when I see the doctor or get labs.  It also raised my weekly contribution costs, but it had to be done.

Unfortunately, with this plan change, came with a carrier change.  I joined the Sutter Health network and am sad to report they choose to charge patients a 20% copay for chemo medication, where other plans cover it 100% or charge a max of $50/prescription.  Hopefully, one day they realize how punitive this is and begin to cover oral chemotherapy pills as effectively as they do IV chemotherapy.

I left a plan where I was receiving negligent care and now I have a decent oncologist, but can’t afford an additional $300; every three weeks.  That includes the cost of the doctor visit, blood work and the expensive medication copays.  If I give up the ability to work (which eventually puts my job in jeopardy), submit to another surgery for a port, start IV medications, lose my independence, risk permanent side effects and not provide for my family, then the medication would be covered 100%.  Riddle me this…oral chemo is cheaper than IV treatment, but the insurance refuses to cover it 100.  Why?  Never mind; I digress.

After numerous breakdowns, I conceded I had to ask for help. I have had to resort to something I really hate doing.  I know fundraisers have helped many people and I have donated to those in need.  I was brought up that you work hard and support yourself.

I have followed the proper channels to ask for medication assistance.  It appears I was diagnosed at the wrong time of the year.  Nonprofit sources run out of money to help with prescriptions by the end of the year; that’s if they even acknowledge your disease.  Again, not all cancers are pink, but that’s where the funding is.

I have applied for part-time jobs.  I already work a full-time job, but need something to pay for my medication; even if it means working seven days a week.  I still am waiting for someone to hire me.  Problem is, I’m overqualified for the minimum wage jobs, even though I am willing to work weekends.

I have managed to get enough donations for another round of chemo.  However, I now have two weeks to raise enough money for the next round.  My pride is temporarily on a shelf and I have to post a link to my fundraiser.

If you are able to donate, even a $1.00, I would appreciate it.  If you are able to share either via blog or on your FaceBook page, that’s appreciated.  I plan on removing the fundraiser if I am hired or if some non-profit is available to help.

I apologize for having to post the link; but if I don’t raise the $300, in the next two weeks, my chemo treatment stops.  Please take a moment to read the fundraiser and if you don’t mind, share it where you can.

THANK YOU!

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