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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

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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 

 

June is lurking

Published May 26, 2015 by lynn k scott

June will be arriving in a week.  It’s the one month I wish would be eradicated from the calendar.  I have to make sure to celebrate a birthday and have the lil one do something special for Father’s Day.  In the midst of that, I hope not to be too morbid with my blogging.  I can’t say for sure how much of an online presence I will have in June.  I will definitely have a post on the 13th and 25th, but not sure to what extent.

If you’ve been following the blog or if you’ve read the About section, then you will have an understanding about June.  Here is my breakdown of June:

  • 6/1 – Birthday (not mine)
  • 6/13 – My sister Kathi’s 3rd angel-versary of losing her battle with breast cancer at age 37
  • 6/16 – Regretting marry my ex (who still is a plague-like the locust in Egypt-in my life)
  • 6/16 – Angel-versary of my son’s namesake – killed on my 3rd wedding anniversary
  • 6/21 – Father’s Day
  • 6/25 – My mother’s 2nd angel-versay of her passing suddenly (less than 24 hours’ notice)

While I miss my mother, I’m able to accept her death much easier than losing my younger sister.  This past year, I have made achievements.  I started this blog, allowed a few people from my old Facebook page back into my life (where I previously excluded everyone), I returned to the Blue Star Moms (just last month), I became co-captain for my own Relay for Life Team and I’ve returned to church (found a very small one that I can go to).

I still haven’t managed to throw away a jar of Oil of Olay face lotion or cleanser my sister sent me over three years ago.  One stays in the corner of the shower, the other in a drawer in my dresser.  My sister’s phone number is still in my contact list.  I have kept all her emails.  I haven’t progressed enough to address these issues.  Perhaps in time; perhaps not.

I will say, losing a sister and mother in the course of two years really gives you a perspective on what’s important in life.  It also showed me who fragile and precious life is and how quickly it can be taken from you.  Always remember to cherish those who mean the most to you.  More importantly, let them know how important they are to you.  The gift of life is priceless.  Sadly, the cost can’t be measured until it’s gone.

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