oncologist

All posts tagged oncologist

Cancer Journey: Part 15

Published June 28, 2018 by lynn k scott

Tomorrow I meet a new oncologist.  I had to call to confirm my appointment, as I hadn’t received a reminder call.  The woman laughed it off that she hadn’t sent out any reminders.  That’s all well and good, however, I’m traveling 30 minutes out of my way and losing a half a day’s work, so I don’t have the luxury to hope everything is still on schedule.

I have been re-reading my previous oncologist’s visit comments.  They still have not fixed the part where my sister died of breast cancer at 37; not 47.  They have only been told three times now.  They make me seem like a bitch for refusing IV chemo because it’s the treatment they would have preferred.  My original oncologist said outright they could not confirm I did or didn’t still have cancer.  They were going to treat me as if I did; just in case.  Silly me for wanting a definitive answer and to have a somewhat normal life with such vague information from a “professional”.

They villianized me for refusing tests that exposed me to additional radiation without a legitimate cause.  I also had stated that tests need to be coordinated that required IVs.  My veins rolls and collapse, but they don’t consider that when they schedule tests.

I am not holding out much hope for tomorrow’s visit.  We will have to go through all the questions that have been already answered and are in my file.  It’s too much to ask for doctor’s to read before meeting a new patient.  Wasting time is the preferred interaction method.

I know she will order more blood work.  Let’s hope my veins cooperate.  Who knows if she will order the CT scan that I believe should have been done already.  A point my previous oncologist and I did not see eye to eye on.

My anxiety is messing with my sleep again.  I just need this appointment to be over.  Then I get to wait to see if my levels are elevated (which would indicate the cancer is still there).  Waiting games suck; moreso when your very existence is on the line.

No matter what happens, cancer still sucks!

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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.

.

 

 

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 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

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 8

Published January 19, 2018 by lynn k scott

I went to the oncologist yesterday and was told I can see her every six weeks verses three weeks.  I guess that’s progress.

A small victory is being overshadowed by a side-effect of being on oral chemotherapy.  While I have less issues than someone going through IV chemo, there are still side effects to endure.  No matter which chemo you are on, “chemo-brain” will invade your daily functioning; just like the cancer itself.

I recently said that I felt like a defective typewriter.  Now, if you’ve seen the movie, “Grease”, you know that line and who said it.  While I know I’m not pregnant (what it originally referred to), my mind does not work like it used to.  I feel like I’ve been crossed with someone who’s had a stroke and someone who has dementia.

What I mean by that is, I forget a lot of stuff now.  I originally was using the calendar and note features on my phone, however, it was a lot of data to keep typing in.  When you have your fingers drying out and splitting open (another side effect), a simple act like entering text becomes challenging on an entirely other level.

I have purchased a planner that I can write everything into.  It’s easier to make the entries (not as painful).  In addition to tracking my chemo treatments, the never-ending doctor appointments and blood draws, it reminds me of simple things I would never enter; my daughter’s sleepovers, church, bible study, pay a bill, a reminder to speak to someone, etc.

Aside from being forgetful, what I am thinking, doesn’t reach my mouth to be said the way I thought it or I can’t figure out what I need to do to make it happen.  Now, I’m guilty of saying things I shouldn’t. It’s hard to explain, as an example escapes me at the moment.  I’ll make several attempts to do or say something.  Sometimes, even writing something down, I use the wrong word.  I know it’s wrong and I have to rewrite it; sometimes multiple attempts to get it right.

I’m a very organized, thought-out, planning, A-type personality person.  While this chemo-brain can be amusing, to family and friends (esp. in the beginning), it’s extremely frustrating.  It’s bad enough dealing with cancer, but now your brain isn’t responding the way it used to.  It’s hard to be normal, when your mind won’t communicate with your body.  Knowing, you can’t fix it.  Knowing it’s going to stay with you while you’re being treated.  Knowing it’s going to get worse.  Praying it goes away when the medication consumption does.

I know change is a part of life.  I know bad things happen to good people.  I know this was my choice to consume this poison because Big Pharma is more interested in profits than a cure.  I know all of this and still I question if this is my new normal.  I’m not ready to accept that it is.  In fact, I pray it isn’t.

“Chemo-brain” makes us work twice as hard to do what we used to with ease.  It’s just one more way cancer robs us of independence and our former self.

Please take a moment to view/donate/share my fundraising link.

Chemo Medication Fundraiser 

 

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