Cancer Journey: Part 1

Published October 20, 2017 by lynn k scott

I am the first to admit that I am not the ideal patient.  Heck, I’m a barely tolerable patient.  Regardless of my good/bad patient status, effective communication between the doctors/staff and the patient is top priority.  It’s the foundation of a trustful, working relationship between the two.

I admit, I’m extremely direct.  I become irritated very quickly when I have stated expectations and they are either ignored or downplayed.  Add in ill-mannered office staff and a stressful situation turns downright ugly.

Now, we are talking about a cancer center.  A place where emotions run high; especially after patients go and they have been newly diagnosed.  You would think a medical assistant, walking into the waiting room, would have the faintest inkling you don’t try to get the patient’s attention by saying, “hey”.

Sorry, I don’t answer to that.

I was playing a game on my phone when the first “hey” was said.  My husband happened to look up, but didn’t say anything.  As I was non-responsive, this person thought saying, “HEY!” was the next course of action.  This time I did look up.  She stated the doctor’s name and that I needed to come with her.

STRIKE 1

We walk into the room, where she informs me she will take my vitals.  Hmmm….last I knew, I had the right to consent to any and all treatment; even vitals.  Based on this poor medical assistant’s communication skills in the lobby and now telling me what she will be doing; I think not.

My New York personality emerged to take center stage.  I told her she would not be taking vitals.  She thought putting her hand on her hip, telling me she needed those vitals and whatever blah blah blah she uttered after (I stopped listening) only reinforced my stubborn nature and I promptly dismissed her.

STRIKE 2

She didn’t take kindly to that.  Arguing with me wasn’t going to work.  If nothing, I’m a stubborn, Irish New Yorker and I’m pictured in the dictionary next to “Stubborn” (ok not really, but I should be).  I still have the right to say no and apparently, she wasn’t taught that patients give consent.  I have a personal issue with being told what I will and won’t do by people who are not in charge.  I didn’t deem vitals necessary for a consultation appointment.  Not to mention, tell me you are taking vitals instead of asking if it’s ok to vitals will get them declined EVERY TIME!

The medical assistant walks through another office door where she proceeds to loudly complain about me.  Well, my first oncology visit is off to a great start.  I’m TICKED off and an unsuspecting doctor is going to walk through the door and he and I will be having words about his medical assistant.

Needless to say, the appointment did not go well.  He kept pushing IV chemotherapy when the benefits are barely above oral chemotherapy and have a lot more side effects.  I don’t know how many times I told him no to IV chemo, but it was obvious that was his preferred method of treatment.  I actually had to tell him not to mention it again.

My husband and I left the appointment and went to a bar.  Wishful thinking the alcohol would kill the cancer.  Oh well, the drink was needed and went down smooth.

Now, after more poor communication with the oncology office, we can’t find a location where I can get a blood draw to take a bunch of poison that will or won’t cure this cancer.  Apparently, the medical profession thinks everyone sits home all day and no one works.  They must think that because no blood draws after 4:00 p.m.

Now I could go to the cancer center.  However, their poor treatment of me and lack of communication skills raises my anxiety 10-fold.  I don’t even want to go there for the necessary appointments.

The situation is so bad, I’m looking at driving 20 minutes out of my way, and maybe incurring bridge toll, in order to go to a better facility because I’m not receiving proper care where I am.

My positive mood about getting through this has changed into being angry about having cancer.  I don’t want to see doctors, nurses and anyone associated with the medical profession.  I hate the cancer center.  It just reminds me of the family I lost.  It reminds me how this disease has made strong people weak before it took their lives.

Needless to say, my mood is less an amicable at the moment.  I deactivated my Facebook account because I am having trouble just interacting with online friends.  I will probably reactivate it again, but saying that I’m overwhelmed is an understatement.

 

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Visiting the 1950s

Published October 17, 2017 by lynn k scott

Last night, for music and history, we used our smart TV and did a time-warp to the 1950s.  Since we have the technology, why not use it right?  In addition to the music, we discussed the clothing of the era and segregation.  She hadn’t heard the term before.  Once I explained what it was, she responds with, “That’s racism!”  She also picked up on the fact, that if her father and I had met in the 1950s, we probably wouldn’t have been together; being I am white and he is Filipino.  We have done our best to teach our daughter color doesn’t define a person; their actions do.

First up, Elvis Presley.  We discussed “Elvis the Pelvis”, the Ed Sullivan Show and how he was only filmed from the waist up.  We watched a clip from “Jailhouse Rock“.  My daughter giggled.  She’s been exposed to Elvis before because he is the King of Rock ‘n Roll and I’m a huge fan.  We can also thank reruns of “Full House” and “Uncle Jesse” for her Elvis knowledge.

From Elvis, we headed over to watch Bill Haley and the Comments.  When it was time to “Rock Around The Clock“, the lil miss jumped up off the couch and shouted, “dance with me!”  She was having a blast.  That last until my dog decided my daughter was getting far too much attention he was going to cut in on our fun.

From there we discussed a variety of musical artists and jumped over to watch Ritchie Valens in action.  We discussed his, Buddy Holly’s and the Big Bopper’s untimely deaths.  While I showed her pictures of the real Ritchie, we watched the clip of Lou Diamond Phillips portraying Ritchie and singing La Bamba.   We discussed how his name was changed to a more “mainstream” name for the times.

Our last music clips were courtesy of the Everly Brothers.  “All I Have To Do Is Dream” and “Cathy’s Clown” were the two selections we watched.  Of the clips my daughter watched, surprisingly, “All I Have To Do Is Dream” was her favorite.

I know “Cathy’s Clown” was from 1960, but it was my sister’s Kathi’s favorite song when she was young (because it had her name in it) and it’s a great segway to our next trip through the ages…

Get ready for the British invasion, the beginning of “boy bands” (thanks to the Beatles), add a little peace, love and hippies and we’re all set to discuss the 1960s.

 

 

 

A Musical Trip Through the Decades

Published October 15, 2017 by lynn k scott

Last night, we chose to go to Mel’s Diner for dinner.  If you’re unfamiliar with this restaurant, it’s reminiscent of a 1950s diner.  Many tables have small jukeboxes you can request songs on.  Then the songs play throughout the restaurant.  While the food is just on the average side, the atmosphere is fun.  The music played, either by patrons or the establishment, always provides good conversation topics and some memories.

I made a comment to my daughter how I received my first record player when I was 13 years old.  That I received my first record album and that’s the only one I had until I could buy more.  Her response, “what’s a record player?”   Oh!  What? Did the generation gap just come full circle?!

Break out the phone, look up, ‘record player’, and show here what I was talking about.  Then, being the homeschool mom I am, I have decided this upcoming week, we will have a musical trip through the decades.  That was after a Beatles’ song came on and she made a face and said there were better boy bands available.  Had to break it to my preteen that the Beatles were THE boy band, of that time.  She seems to forget her boy band, One Direction, wouldn’t be the teen idols they are today, without the Beatles paving the way for them.

Starting Monday, we will visit the 1950s.  Talk about the artists of that era.  Discuss issues going on during that time.  I get to “visit” Elvis again.  Ok, so I might have been born in the wrong generation.  Then we will move onto the 60s, 70s, 80s and finally the 90s; by week end.

It should be a fun way to incorporate some modern history via music.  After all, music plays such a huge role in marking important milestones in our lives and in making memories:  childhood memories, songs your parents liked (and you laughed at), first song danced to, wedding songs, songs your kids would stop crying to, break-up songs, etc.

I completely expect eye-rolling and “are we done yet” responses.  I do hope my lil miss can take away something as we dance our way through the ages.

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.

Diagnosis: The Big “C”

Published October 12, 2017 by lynn k scott

My blogging isn’t up to par as I have slacked off considerably with making sure I post at least once a day.

I grew tired of primary care physicians passing the buck, their staff refusing to schedule appointments (while in severe pain) because I wasn’t ‘nice enough’, being ignored when discussing symptoms or just regurgitating a previous ailment.  I took myself to the emergency room (at an expensive cost; considering my copay).

Well, I was right!  There was something wrong; seriously wrong.  When all the testing was said and done…a mass about five inches long, blocking 80% of my colon was discovered.  Major surgery was in my immediate future.

After a scheduling fiasco with the hospital, the surgery was finally completed.  The mass sent to pathology for testing.  A week later, the report was in:  Stage 3 colon cancer.  I had managed to convince myself the mass would be benign.  I recovered so quickly from surgery.  All was well again…silly me…I knew better than that!

Let’s recap (if you don’t follow my blog)….

  • Father:  Stomach cancer – Stage 4 (passes within 3 weeks of diagnosis)
  • Mother:  Non-Hodgkins Lymphoma (beats it – but passes for another reason)
  • Younger Sister:  Breast cancer – Stage 4 (passes within 9 months of diagnosis)

I now have joined the rest of my family.  There are only two of us left, out of the original five members in our immediate family.   Four out of five people in one family being diagnosed with cancer…what are the odds?  Don’t answer that!

If my faith wasn’t so strong, I’d be a complete basket case.  Have I shed a tear or two?  Of course!  You’d have to have a heart cold as ice not to have such a diagnosis elicit some type of emotion when learning you have cancer and stage 3; at that.  Truth be told, this is the calmest I’ve been about a major life event.  I know that’s God’s grace.

I know He has a plan for me.  I wish it didn’t involve this disease.  However, I have many friends and family praying for me.   I have found an amazing church that has been incredible in supporting me.  As it stands, I have a 57% chance, without any further treatment, the cancer is gone.  Treatment will increase those odds, as there isn’t a test to say I still have the cancer.

What hit me hardest?  Telling my older children, who watched their grandparents and aunt pass away, that their mom was now sick.  Then, telling my youngest, who only knew a little of what claimed her aunt, at the tender age of 37, her mom had a similar disease.

Most days I’m good.  Very tired as I am extremely anemic at this point.  Other days, I’m angry.  I’ve dealt with so much already.  I didn’t, “why me?” the issue.  It is what it is.  I am doing my best to stay positive, especially for my youngest; the only child at home.

My perspective has sharpened a bit.  I’ve jotted down some details should the worst case scenario come full circle.  Not being a stranger to cancer and what it can ultimately do, I am capable of making decisions that I don’t want to leave to family.  It’s unfair to make them have to make decisions on my behalf.

I will go through the motions.  I’ll probably be in debt trying to pay for medications, increased insurance premiums and everything else that goes with having to say, “I have cancer”.

I will not be pitied.  I will accept prayers, visits, bonding with family and friends and knowing making memories is extra special now.  I am also continuing to work on the Kathi Cares Program, which supports local cancer warriors.

ribbon

 

 

 

 

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.

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