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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 

 

Cancer Journey: Part 7

Published January 12, 2018 by lynn k scott

We’ve all seen the “helpful” pamphlets in the doctor’s office.  They cover a multitude of topics.  My oncologist’s office has a variety; none on colon cancer though.  Regardless of the topic, there is real life information missing from those little brochures.

Things like, how your relationships change with a cancer diagnosis.  It’s hard enough dealing with your own feelings.  You spouse/partner, family members, children all are now thrown in the mix.  It makes it difficult when you look “normal”, but your body makes doing simple things like watching a long movie or cleaning the kitchen a burden.  Let me tell you, my poor house is nothing like it used to be.  I have to give in and admit, I cannot do it all.  I wonder if my family will ever realize that?  I’m not knocking them.  I know they see me as fine, regardless of the endless pills I swallow for two straight weeks.

Another thing missing is what happens if your spouse can’t work; even temporarily?  Does it prepare you to have to surrender a vehicle because you simply don’t have the money to pay for it?  Does the state disability workers care they haven’t processed your claim in over two weeks?  Nope, they don’t; especially because you can’t reach a live person!

Let’s add just a bit of icing to this pamphlet cake of missing information.  Let’s have a clinic director call and “empathize” with you about how horrible cancer is.  Let’s have her say how much she wants me to be able to deal with this, but she cannot produce ONE local support group.  Then let’s have her reference how I work and since my schedule doesn’t accommodate the only group 30 miles away and starts before I could get there, I’m not being flexible.  To add a cherry on this frosted bunch of glossed-over, “we’re here for you” information, that she will compare “if there’s a cure 50-miles away, would it be too far to reach”.

Let’s put this in perspective.  A cure is not a support group.  A cure would negate the need for a support group.  I bet she can’t tell the difference between apples and oranges, either.  To say I’m angry is a true statement.  These medical “professionals” have either been abusive, negligent or completely not interested in hearing me and/or acknowledging me and my need for LOCAL (as in within my own city – not clear across the county) support.

I have found a group of ladies, online, who are fitting my support bill.  They are or have been through the trials and tribulations of the Big C.  I can vent and I’m not called, “inflexible”.  I can ask questions without reaching a never-ending, button pushing, automated system before reaching a nurse with an attitude who simply relays messages to/from my doctor.  Speaking to your doctor on the phone these days is a mortal sin.  You can’t possibly express yourself without the aid of a nurse misinterpreting the reason for your call.

The fundraiser is going ok, but it could be better.  I am only $40 short of being able to afford two more rounds of chemo.  I appreciate all who have, and continue to share my fundraising link.  You really have no idea how much it means to me.

These weekly cancer journey updates are to make those who watch cancer from the sidelines get a front row seat of the reality of what it’s like to deal with cancer.  It’s not about ribbons, even though I use one for this series.  Life isn’t a marketing campaign.  It’s tough, emotional, draining and those who have cancer live with an uncertainty as to what their life will be like, become and how long it will last.

 

Angels Walk Among Us

Published January 5, 2018 by lynn k scott

I honestly believe that angels walk among us and they take the form of friends.

A few weeks ago, I was lost.  I was having daily meltdowns regarding how I am going to pay for my cancer treatment and medications.  I was shutting down and beginning to withdraw.

I had a long-time friend invite me over to her home after church.  I was such in a bad place, I didn’t want to go.  I told her I would think about it.  She tempted me with seeing their Siberian Husky.  I have unofficially adopted him…well adopted him in the sense he is my main focus when I get to visit him; and his owners.

I relented and asked when we should be at her house.  I grabbed a toy for Kona (the Siberian).  I love that dog; even if he’s not mine.  I get through church, take a much-needed nap (thanks to my meds) and woke up in time to leave.

Standard greetings took place and then it was time to see Kona; who is normally outside – he loves it outside.  I walk out, hear a guy’s voice, who I just assumed was my friend’s boyfriend.  When I say, I go to see the dog, I’m not kidding.  I was so dog-focused, I failed to realize my son was the one holding onto the dog’s leash.  Right next to him, was my daughter-in-law and granddaughter.          20171231_165213.jpg

It’s been six years since I’ve seen my son.   He’s in the Army, so visits are few and far between and he’s stationed across the country.  Another one of my friends used air miles that would expire before she could use them and flew them all out to see me.  I had yet to meet my daughter-in-law or meet my (now) eight-month old granddaughter.

To say tears were flowing would be an understatement.  I was beyond surprised.  Several people were in on it.  They kept me going til the surprise took place.  They knew how difficult life had become and brought a beacon of light to brighten up my world.

I have had the pleasure of having my oldest and youngest together for three weeks.  We did a few low-key tourist things, but mostly stayed near home.  I still have had to work while they have been here.

Walking through my front door and to be greeted by my smiling grandbaby brings joy like nothing else.  Cooking dinner every night has been great.  My daughter-in-law LOVES mashed potatoes!  It may seem trivial, but my husband is Asian and we eat a lot of rice.  I had another person in my corner for side dishes.  My son did good marrying her.  LOL

My granddaughter celebrated her first Christmas in my home.  My daughter and son were able to celebrate their birthdays together (New Year’s Eve and New Year’s Day).  I was able to bring the “kids” to church and introduce them to my church family.  My son isn’t big on attending church, but he did so for his mom.

I will be sad when I have to take them to the airport tomorrow.  Tonight will be the last night that I will sit on the sofa, holding the baby, and giving her a bottle.  She can hold it herself, but each evening, we’ve had our little bonding time.  I will miss it greatly!

I am blessed that I have angels walking among us and I get the privilege of calling them friends.

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Leave a Link and I’ll Reblog Your Page!

Published January 4, 2018 by lynn k scott

Head over to Dream Big Dream Often. Lots of great reading material there!

Dream Big, Dream Often

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The are only 2 simple rules to get your post reblogged on my page:

Leave me a link in the comments 

And

Reblog this post in return.

.  I’m not sure it gets much simpler.  You can leave as many links as you want in the comments and I’ll reblog your post.

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A Reason

Published January 3, 2018 by lynn k scott

I can’t imagine what it must be like to tell someone, ‘you have cancer’.  I know what it’s like to find out a family member has it.  I also know what it’s like to hear those words spoken directly to you.

Cancer seems to be dominating my family.  I’m the latest recipient its chosen to challenge.  I refuse to let it remove me from this Earth.  This is a battle I WILL win!  I have started a program for local cancer warriors; in my sister’s name.  With fighting my own battle, I admit, I haven’t done a lot with the program lately.

However, I believe my own battle with colon cancer has shown me a reason for my fight.  It is utterly amazing how horrible insurance co-payments are in regards to paying for medications, doctor visits and tests.  The apathy is overwhelming.  It’s not like medical professionals know what patients are dealing with.  Non-profit foundations, that advertise co-payment assistance are nothing short of laughable.  They either refuse to assist if you have commercial insurance or funding just isn’t available.  Many will only cover Medicare or the uninsured.  Other programs are drug-specific and if you have a unpopular cancer, then your chances for assistance decline even further.

I have decided, once I beat my cancer, I will be diligently working on making the Kathi Cares Program a nonprofit.  The focus will still be supporting local cancer warriors.  However, the primary focus will shift to aiding those who need monetary assistance with prescription (and care) co-payments.

I want the assistance to be available almost immediately versus putting the applicant through weeks’ worth of waiting and worry on how they are going to cover the necessary medication or office visits.

If this is the reason I was destined to go through my own cancer battle, then challenge accepted.  I struggle with the ability to afford my own treatment.  I do have a fundraiser to aid in that.  I am too young for my cancer (as I am repeatedly told), but I have yet to find funding to assist me.  This is my only option, until I can get another job to help me pay for my treatment.

I will beat this and then I will help those who are experiencing what I am dealing with.  Together, we can make a difference.  Together we are a community.

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