life

All posts tagged life

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.

 

Advertisements

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.

New Word: 2018

Published December 12, 2017 by lynn k scott

Years ago, a friend told me about a practice of picking a new word to represent you through the upcoming year.  Face it, resolutions are great for a few weeks and then our true nature breaks through and we revert back to our old habits.  Ok, a few people stick with them, but the majority doesn’t.

I was one of those people.  State your resolution, post how great you’re doing and then the topic suddenly stops coming up.  That’s why I love picking a word to represent me.  I honestly reflect on previous years.  What has happened, how I handled things, who came into or left my life, etc.

  • 2015:  Perseverance
  • 2016: Genesis
  • 2017:  Influence

All these words turned out to be extremely relative for the year they represent.  With the new year only a few weeks away, it’s time to make the word selection that I will take into 2018.  After careful consideration, the word I choose is,

SIMPLE

Why Simple?

In 2017, there have been new influences on how I view life.  I have met some AMAZING people this year.  I have received tremendous support.  I have reflected on my life, up to this point and time.  What does it come down to?  Living a simple life.  I have everything I need (except a cure).

Life really doesn’t need to be as complicated as we make it.  I am as guilty of this as the next person.  Simplifying how I choose to live will help declutter my mind and my life.  A better devotion to Christ, realizing how important family is, having friends that support you are simple ways to have a very rich life.

There you have it:  A SIMPLE recipe for the upcoming year.

Will you join me in selecting a word instead of making a resolution that you may or may not see through?  Please comment with your word if this inspires you to follow suit.

 

Homeschooling: Life Skills

Published October 12, 2017 by lynn k scott

This year, our homeschooling journey has landed in the 6th grade.  In addition to my daughter learning how to take detailed notes, beginning to independent research, math, grammar, science, etc., she participates in Life Skills.

If we were in a brick and mortar school, the skills she is learning might be classified as home economics.  However, it’s more than just that.  She is learning to make grocery shopping lists, assisting with pet care, cooking for herself as well as her family, doing laundry, etc.

In our home, my husband doesn’t cook.  It’s a fact; he doesn’t know how.  I, on the other hand, have a catering and hospitality background, so I am passing my cooking and baking knowledge to her.chicken adobo

Since school began in August, she has learned to and can make grilled cheese, fried hot dogs, fried eggs, chicken adobo with rice and ramen.  She has been exposed to making pot roast, pan-seared pork chops (finished in the oven) and baked chicken and chicken wings.

rice

Now, to be be fair, the chicken adobo and rice shown are actually for a church event, but it’s the same food she proudly makes for her family ever week now.  She won’t even let me make it any more and gives ME tips on what I should be doing in the kitchen.  If she only knew, I’ve been at this about 30+ years longer than her.  It’s a cute sentiment though.

In addition on learning important cooking skills, when she has to follow a recipe and using measuring cups and/or spoons, she is reinforcing her fractions.

Lastly, spending time in the kitchen will create memories that one day, she will remember as she stands in her kitchen, showing her children, what I taught her.  Life skills….so important….not just in a technical sense.

A Little Bit of Planning

Published September 18, 2017 by lynn k scott

It’s no secret that I am planning on my own funeral.  It’s really not that morbid and it allows my A-type personality to see myself through to the end.

Having personally planned three funerals, I really wouldn’t wish that upon anyone.  It’s not that it’s difficult, but death brings up feelings that people probably aren’t prepared to deal with or don’t deal well with, in general.

Why shouldn’t I lesson their burden?  I know what I want:  A Celebration of Life.

I have already chosen:

  • The person I want to officiate the service
  • The music to be played and sung
  • The location
  • The food
  • Cremation because I don’t like people looking at me.  Plus, if people were staring at me, I wouldn’t be able to tell them to stop (well without scaring them to no-end lol)

Being a native New Yorker, who transplanted to Northern California, I can’t have a generic gathering after the service, right?  So, I’ve planned on using a local, little pizza joint (fellow NYers, of course), to provide pizza, calzones, submarine sandwiches and Buffalo wings.  Then, there will have to be bagels and cream cheese.  Lastly, we’ll add some cheesecake for good measure.  No diets will be observed at this Celebration of Life.

People should embrace my Irish heritage and eat, have coffee (my life blood right now) and share humorous stories of how I despised the Evil Empire, acclimated Californians to how NYers spoke and their expectations.  They can share the memory of the poor guy who chose to tell me I was only in Mets gear because they were in the playoffs one year.  A decision he would come to regret when he realized I was truly a NYer.

Either way, thought I would share.  Perhaps someone else may take this as a sign to start thinking about the inevitable.  One day, I’ll have eternal life and I want those I leave behind to remember my time here on Earth; the good and the bad.

Now for the curve ball…

Published September 15, 2017 by lynn k scott

I haven’t posted in awhile; longer than it should have been.  I’ve been struggling with my health.  For those of you who follow this blog, you’re aware I am less than a fan of the medical profession.   Ok, ok, I actually loathe it and view dealing with doctors and health facilities as a necessary evil.

I’ve had multiple issues trying to be seen for an ongoing issue.  First specialists were only working when I had to pick my daughter up from school.  Perish the thought they work past 3 o’clock.  Then, I couldn’t find a native English-speaking doctor.  Hold up…hop off that train of thought you are beginning to process.  I had a non-native doctor dismiss my symptoms because she didn’t take me seriously.  When she finds it appropriate to recommend a banana and drinking more water (without knowing my dietary habits), yup, it justifies walking out and asking for a US-born physician.  Heaven-forbid wanting an English-speaking doctor is the sin the medical practice made it out to be.  How dare I? Sorry, hiring native Spanish-speaking, Farsi-speaking, Chinese-speaking doctors, for the comfort of the patient is no different than what I was asking.  All in all, I ended up being banned for my instance on seeing a female doctor; whose first language was English.

Onto waiting for the first of the month to be seen by another practice.  Oh, I’m a new patient and haven’t been “established”.  That means my necessary appointment can wait an additional two weeks while the insurance carrier and practitioner discriminate new and established patients and refuse to give them the next available appointment.

Finally!  I see a doctor.  She regurgitates a peptic ulcer that I was treated for a year ago and I’m there to see her about the same issue as the treatment was effective.  She cannot understand my not wanting a scope stuck down my throat to test for an ulcer that I tell her I am not suffering from; that something else is wrong.  She tells me I have insurance and can’t see the big deal in my refusal.  Ummm…invasive and a 20% copay AFTER a $1500 deductible.  Welcome to the real world, Doc.  I refill the ulcer meds anyway. I message her for three days in a row:  medicine is not working.

I gave up.  She was ignoring me because I refused an unnecessary procedure.  I chose to look the other way regarding my copays and headed to the Emergency Room (ER).  The ER thanked me for coming in.  I apparently have Intussusception.   That’s being caused by Tubulovillous of the colon.

Needless to say, I am already sick of dealing with the G.I. dept, the oncology dept, as well as constant communication with my surgeon.  Yup, next week I go under the knife for a few hours to have a good section of my colon removed.  The ulcer, that two doctors said I have was actually a polyp that grew to be 10-15 cm and is blocking 80% of my colon. I paid copay after copay, because I was in PAIN.  Let me tell you, the pain is nothing short of being in second to third stage labor, for weeks at a time.  I have been trying to resolve this, actively, for over a year.  Doctors:  LISTEN TO YOUR PATIENTS!!!

I’m glad to have a diagnosis and treatment plan.  I’m not happy with knowing, every doctor I have spoken with, while telling me we will have to wait for pathology, believes I have cancer.  We have to wait for the mass to be removed and tested.

I can deal with having cancer, if that’s what the test shows.  Telling my kids, esp. my older children who watched both my parents get diagnosed and ultimately watched my father and sister lose their cancer battles is scary.  Telling my 11-year old, who is basically being raised as an only child is terrifying.  She is already emotional with my first hospital stay and my upcoming surgery and longer hospital adventure. She has heard the word, ‘cancer’, but has no idea what it truly means. Children shouldn’t feel afraid for their parents.

While my family, friends and church have been extremely supportive, whenever you are forced to face your mortality, your brain goes into overdrive.  I have given this to God.  I know he has a plan for me; even if I don’t understand it.  I am used to being independent. I don’t want those who depend on me to worry.  I just pray for strength for my family.

Take a Moment; Make a Memory

Published July 12, 2017 by lynn k scott

I found myself, on two separate occasions, talking about memories.  The first time I mentioned memories was on a Facebook link that was in response to a woman who said she was glad women had evolved and didn’t do things like grind their own meat or coffee, can food, prepare homemade meals, etc.

I was mildly offended by that.  While I was born in the early 70s, I take great pride in working a full time job, coming home to cook a homemade dinner (six to seven nights a week), and sitting at the table, with my family, to enjoy it.

I still hang clothes out on the line and I can a lot of different foods throughout the year. To me, I am making memories with my daughter.  Years from now, she will see a jar of preserves and think of my “armageddon shelf” that was always stocked with a variety of jams, soups, stock and vegetables.

Tonight, I was speaking with my Pastor and I used that exact example.  It got me to thinking, “that’s a blog post”.  All to often, especially in today’s society, it’s a “now” or “me” mindset.  While I am guilty of having the same thought pattern on occasion, I don’t seem to do it as often as some people.

It takes hours to make bread from scratch.  I enjoy mixing some flour, yeast and water and getting bread when all is said and done.  I teach my daughter how to measure, mix and make food from ingredients instead of a box.

She and I will go for a walk in a local park.  We might stop and watch the dogs play in the dog park.  We will hunt for pinecones for crafting projects.  Finding a bench and listening to the birds’ melodies as they communicate with each other.

So, I encourage you to spend quality time with those who matter most.  It doesn’t have to cost you anything.  Go to the beach, sit on the sand together and watch the waves crash against the shoreline.  Spend time in the kitchen making culinary creations.  Go to sporting events.  Rock your child in chair.  Go the library and cultivate a love for reading.

When I am finally called Home, I want my family to have memories that will make them smile when they think of me.  That they will feel the love I had for them, when I can no longer physically wrap my arms around them to offer comfort.  Now is the time to take a moment and make a memory.

anotheronewiththecancer

Yes I am the Cancer Curmudgeon

Renew or redo

Home refurbish projects. Decorating, Design,AndGeneral Life Activities

cancer killing recipe

Just another WordPress.com site

Reclaiming HOPE

Learning to Live Well With Fibromyalgia

Wish to Dish

Celebrating food and all the joy that comes from creating and eating it.

Skipping Stones

Musings of a Mindful Disciple

Jo Ann Maxwell

How I lost then found fearlessness after a diagnosis of Multiple Sclerosis

XP NUGGETS

Your daily source of positivity, motivation and inspiration: Available for you in a charming consumable nugget!

Fact Based Truth

Truth based on facts

The Recipe Hunter

Cook and Enjoy