oncology

All posts tagged oncology

Cancer Journey: Part 16

Published July 2, 2018 by lynn k scott

I believe this will be the last cancer update for some time.

I met my new oncologist this past Friday.  While she seemed genuine and sincere, it was an effort in futility.   I had a complete breakdown when she asked why I was there.  I clearly stated it was because she was my last option for a doctor; based on what the insurance carrier would permit.   She didn’t didn’t take offense; esp. after I explained what I meant.

She wanted to order a PET scan.  Awesome…I can’t stay still, flat on my back for 30-minutes.  She asked if a particular drug would help relax me.  I have no idea as I haven’t had it in almost 30 years.  She said she could order a CT scan, but that might be inconclusive and it’s not as complete as a PET scan.  I still might need a PET scan after the CT scan.  That pretty much sums up the CT scan is not the way to go.  Each of these scans would cost me a $350 copay.  Let’s not even mention having to add an IV to do them.  My veins have been oh-so-cooperative (NOT).

She mentions how I didn’t receive enough chemo.  Gotta love my previous doctors  (I need a “NOT” button).  She went over another option, that wasn’t clearly explained to me by my first oncologist.  So there goes adequate informed consent.

Then, she had the “brilliant” idea of telling me I should see a counselor about my grief for 3/5 of my family being dead (mostly due to cancer).  How about addressing the issue of NO SUPPORT for cancer patients that are still alive and breathing?!  How about offering legitimate financial support.  People are struggling to pay their every day bills.  Add a 20% copay to all their medications (even if each one caps out at $200), that’s still a huge increase every few weeks.  Let’s not mention, the patient probably wouldn’t be working full-time either, so now there’s a loss of income but increase in expenses.  The working person falls through healthcare crack which is the size of the Grand Canyon.

We agreed to start off with more bloodwork after I told her I guess there was nothing she could do for me.  I asked the nurse who was going to talk to the lab about how I’m a hard stick.  She told me I could let them know.  Gee….that’s worked really well in the past…again…NOT!  They make no offer to warm my veins to see if that would help.  They do nothing different than a person who is able to give blood easily.  I drink tepid water already (which was her suggestion).  First, I’m not new to blood draws.  Second, it’s obvious she had no intention of doing anything additional for patient care.

I’m supposed to go back in six months.  The nurse really thought she was going to schedule that after my appointment.  I think not.  IF I were to go back, I would call in.  six months is in December.  I have my daughter’s birthday to deal with.  It would be January at the earliest that I would even consider going back in.

I walked out no further along than I have been these last few months.  I am officially done, at least for the immediate future, with doctors, blood draws, scans and anything else related to this effin diagnosis.

My survival is solely in God’s hands.  I am changing my diet and will be trying CBD oil for cancer patients.  While I will not go gently into that good night, I no longer have any faith in the medical world and their attempts to treat me.

Being the realist that I am, I am now officially putting my affairs in order (just in case).  I will be drawing up a living trust and making my husband add his information because he won’t do it on his own.  We don’t have may assets, but the few we do have need to go to my youngest (as most of it belongs to her dad).

I ask for continued prayers for my health and for the strength to prepare my daughter for the worst case scenario.

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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.

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.

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