treatment

All posts tagged treatment

Sitting in Judgement

Published October 4, 2018 by lynn k scott

I reactivated my old Facebook account.  I knew better…but, I did it anyway.

I have a very hard time with Pinktober.  It has nothing to do with raising awareness for breast cancer.  It has to do with a large number of organizations and companies cashing in on cancer.  Losing my middle sister to breast cancer and knowing my younger sister is fighting the same strain has made me more vocal.  To some, I’m jaded.

People need to understand there is not equal medical treatment, insurance or affordability nationwide.  That being said, I DO NOT agree to universal health care.  I am merely pointing out what I know as fact in California.

I will not tolerate “breast cancer awareness cookies”.  Making cookies in the shapes of obnoxious looking boobs or making them looked squished (like a mammogram would do) is not ok in my book.

Now, I worked full-time through my chemo treatments.  I was out of work a total of two weeks and that was to have the tumor removed.  I still worked, every day; from the hospital and at home.  I could not afford to live on disability.  Reluctantly, I had to start a gofundme account to pay for chemo.  I couldn’t afford it on my own.  I deleted the account after my last chemo payment was made.  Oh wait…most people don’t know my husband was out of work for two months last winter; and was taken by ambulance and hospitalized.  Nothing like more financial strain….

As you know, I recently had to purchase another vehicle.  I chose a sports car.  I was upside down on my trade, I had horrible credit.  The fact I was financed was nothing more than a miracle.  My car looks nice, but in reality, it’s the same price as a Honda.  I figure, I’ve lost so much to such a horrible disease, have been through hell this last year, it’s time to live.  At this point, I do not know if I live to finish making the car payments.  That’s MY reality.

Yet, someone still felt the need to sit in judgement of me.  Saying my car is too nice.  Those mods I’ve done are expensive.  Well, my husband has a challenger five years older than mine.  He did a lot of the work and had spare parts.  He’s also been doing show cars for over 25 years and has a lot of industry friends.  We don’t pay full price for anything.  I also work two jobs.  That’s right.  I have had cancer for a year, been off chemo for six months and picked up my second job three months after finishing chemo.

I was basically called a scam artist for having two separate parts of my life judged as the same; chemo payments and car payments.  What gives anyone the right?!

Am I jaded about the medical industry – DAMN RIGHT I AM!  I also have good reason.  I have not been shy about what I have gone through.  I do not have great care.  I am not a good patient and have been punished for that.  I have been punished for demanding that doctors and their staff allow me to be in control of my body and treatment.

I can’t stop anyone from judging me, but I’ll be damned if I am to keep quiet on the medical world’s shortcomings or the scams of Pinktober.  Just because it’s pink or coming from a charity, does not mean their intentions are good or the true patients are receiving anywhere near what is being collected.

If you are God, you may judge me.  If not…a little empathy and allowing me to vent won’t kill you.  But by hell or high water, you are not entitled to judge me (or anyone else; for that matter)!

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Cancer Journey: Part 11

Published April 6, 2018 by lynn k scott

It’s been a while since I’ve updated.  I haven’t been able to bring myself to do so.  I’m at the end of my treatment; or so I’m told.  I have 3 days left of meds and I won’t be taking them.  I’m OVER IT!

I’m over people asking me what I’ve done to my hands.  Depending on the person, I just say it’s a medication side effect or my chemo meds did this.  Funny, doctors couldn’t be bothered to tell me how my hands and feet would dry out.  How my skin would peel off in strips (off my feet).  How my hands would crack, bust open and make using my using my hands a luxury.  Can’t even open a bag of dog treats when my fingers have sores on them.  You truly have no idea how much you use your thumbs; until you can’t!

I’m tired of “that look” people give me.  They know I have cancer but the pity look sucks.  I haven’t changed but am now seen as my disease and not the person I was.  I’ve cancelled my upcoming oncology appointment.   Why go?  For her to ask me the same questions she’s asked for the last 6 months?  For her now to tell me to come back in 3 months?  For me to remain in limbo if the cancer is still there or if the poison of chemo actually worked?  I’d rather not waste my time or what little money I have left. I’ll go next month, if I feel up to it.

I have testing that still has to be done and I just don’t want to do it.  Let’s not mention I can’t afford it.  Sutter Health Plus is a joke of insurance.  There are no native-English speaking, female oncologists in my area.  If the insurance is offered for my area, I should have the ability to see a doctor who makes me feel somewhat comfortable.  I should be able to understand her.  I shouldn’t have to discuss very intimate details with a male doctor.  I can waste time traveling over 30-90 minutes away from my home, just to receive the proper care I should already be getting.

I have learned the medical profession has no empathy.  They see cancer patients, day in and day out.  It’s their routine.  They don’t live our lives or suffer our side effects.  A few looks of pity from nurses; maybe.  Doctors just don’t care.  They have a bunch of patients to see and you’re just one of them.

I am angry.  I know the medication has played a role in this.  My emotions are all over the map and I can’t keep them in check.  I have given in to the anger and just want to be left alone.  I have been here before.  It’s a scary place and hard to leave.  I’m pushing people away.  I have deactivated Facebook; for now.  I just don’t want to interact with anyone.

I am creating a bucket list.  I doubt any of it will ever happen. It’s truly the only thing I look forward to; regardless if the items are mostly pipe dreams.  I just continue to work, day in and day out, as if nothing is wrong with me.  I have taken one, half-day, since I started chemo.  The rest of the time, I have been at work.

I continue to pray and I know people are praying for me too.  Right now, it’s not any comfort.  So, it’s just another day in the life, of the average cancer patient.  So, I still exist, but I can’t say I’m living.

 

Treatment 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

I quit pooing

Published June 2, 2015 by lynn k scott

I quit pooing about six weeks ago.  Ok, ok, so “pooing” is short for shampooing.  I have read quite a bit about not using shampoo.  In my ever-increasing need to lessen the amount of chemicals used in my home, I gave up buying and using shampoo (and conditioner).

Depending what information you choose to believe, it definitely took more than two weeks for my hair to get passed the greasy, slick, “take a shower, will ya?” phase.  I can say it took a good month before my hair finally stopped freaking out over the fact that I wasn’t lathering up every other day.

If you have long hair, I highly recommend braiding it and no one will ever know you and your hair are on a new quest.  If you’re like me, and not a fan of hats, you get a really cute A-line cut, and tuck those locks behind your ear.  I admit it, my hair looked like I had a fight with the hair gel and the gel won.

When I first decided to stop “pooing”, I was going to use the baking soda method.  I can honestly say, it made my hair a bit brittle.  Then I happened on some homemade soap, all-natural and chemical free.  I really like it and used that for about three weeks.  Recently, I found Dr. Bonner’s Castile bar soap.  So far, I’m very pleased with the results the soap has had on my hair.  I like the soap has essential oils, is part of fair-trade, chemical free and GMO-free.

If you are up for a challenge, might I suggest you stop “pooing” too?  Be prepared for a good 2-6 week hair transition, but you will enjoy the freedom of not being dependent on chemical shampoos.  Should you require a conditioner, simply put a little coconut oil on your fingertips and massage through your hair (but not the roots).

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