support

All posts tagged support

Cancer Journey: Part 5

Published December 8, 2017 by lynn k scott

I met with a new oncologist yesterday.  Truth be told, I had several mini-meltdowns, at work no-less, trying to get an emergency referral to this new doctor.  I’m on my “off” week for my chemo-cycle and needed the referral, be seen and have the medication ordered and delivered, by today, in order to stay on track.

Prayers were definitely answered.  If you have followed up to now, you know I have received less-than-stellar care for my cancer.  To the point, the doctors should be sued.  Yea, it was that bad.

I walk into this new office; very apprehensive.  Very nice office staff.  They pointed out coffee and tea were available, if I wanted some.  Coffee?  That HAS to be a sign!  The computer system wasn’t cooperating, and the staff was apologizing to me for the wait and having to switch rooms.  Respect?  I’m not used that.  Such a simple thing, yet so many people no longer offer common courtesies.

Then I met the doctor.  She genuinely seemed concerned.  Part of the reason is because I’m technically too young to have colon cancer; without a family history of it.  I told her, what I have told a handful of doctors, there has been a lot of different cancer in my immediate family.  She took note of it.  Then mentioned something no one else has:  Lynch Syndrome.   She thinks I may have this.  From what I have read on the syndrome, it would explain the cancer in my paternal grandmother, my father and my 37-year old sister, and of course, now me.

I have previously declined genetic testing because two previous doctors were focusing on my risk of breast cancer.  They failed to elaborate when I didn’t see a need for it.  Based on other family member’s testing, I am almost certain I have an increased risk of breast cancer.  I didn’t need a test to confirm that.

My new oncologist pointed out, if I had Lynch syndrome, it’s more than just treating me; it could affect my children.  They would have a 50% chance of having the gene that causes the syndrome, thereby increasing their risk of certain cancers.

I am extremely grateful and blessed that I have been assigned to an empathetic, compassionate and caring physician.  This is how healthcare should be.  It shouldn’t be getting patients in and out in record time with minimal information.  Communication is so crucial, yet, often downplayed because too many doctors have their routine and expect patients to conform to it.

Toward the end of the appointment, she said, “you have five children and you need to live.”  That almost brought me to tears.  My chemo has been pushed out (more cycles added).  Extra testing has been ordered.  Vitamin D has been added to my daily dose of pill consumption.  There will be a PET scan and other testing once all the chemo has been concluded.

Overall, my prayers and those praying for me have been answered.  Prayers are still needed (and welcomed) as this battle is far from over.  At least now I feel like I have a fighting chance.

Advertisements

Cancer Journey – Part 4

Published December 1, 2017 by lynn k scott

This is the second week of the second chemo cycle.  I would say it was almost uneventful; well, up until last night.

I realized I had way too much medication left in one of the bottles.  I realized I hadn’t been taking enough.  Part of that is my error; part is on the doctor and pharmacy for how it was written.  It was written to where the dosage could be take 4 pills daily.  The reality is I was supposed to take 4 pills in the morning and 4 in the evening.  Add in, this new idea of putting all the dosages on the same label, only adds to the confusion.

I will get three and a half days of the correct dosage.  In addition to the poor writing of the prescription, it the oncologist is to blame for refusing to cover the actual dosage with me.  It really goes back to the on-going poor communication.

As I was discharged for the Cancer Center’s care, for lack of communication, I was going on my own these two weeks, with no medical supervision.  It’s proven not to be an issue where the medicine is concerned.

Currently, I’m still not having horrible side effects, which would require a medical professional’s intervention.  Thank heaven for small miracles.  Without having a doctor to consult, my only option would have been to go to the local emergency room.

It’s a sad day when such a serious medical issue is handled so carelessly.  Today, I’m officially registered with a new carrier and provider.  I meet my new Primary doctor next week.  I hope she can get the emergency oncology referral taken care of and I hope I can get my medication next week as well.

I put this as a status (on Facebook) yesterday.  I wish more doctors understood this concept.

If more doctors would realize there are patients in tune with their health and we use them as guidance and not God, healthcare could actually be about care and not maintaining someone.

Continued prayers would be appreciated as this battle is so up-in-the-air.

Cancer Journey: Part 3

Published November 20, 2017 by lynn k scott

The second cycle, of six, started today.  One cycle down?  Not really…and here’s why…

The doctor’s office never discussed the actual dosage that would be mailed to me.  Seeing as these are chemo pills, you can only get them from a specialty pharmacy, via couriered delivery.  The last pharmacy only sent one of two bottles; and the lower dosage of the two.

Then, I find out, my doctor’s office failed to verify which specialty pharmacy the insurance used.  This makes a difference because using the incorrect pharmacy could make the patient fully responsible for paying for otherwise covered medication.  Finally, the correct specialty pharmacy was able to send all the correct medication.

Moving on…I get my blood draw and then see the doctor the next day (like I’m supposed to).  The nurse walks up to me with someone else.  The first person continues on and I see someone standing near me, but not saying anything.  I am playing a game on my phone, passing the time until I am called.  Several minutes pass and she said, “whenever you are ready”.  Wow!  This office really has communication issues.  That being said, my patience for dealing with them was ‘running on fumes’.

I had convinced myself to just get through the appointment.  I could do it!

The office and its occupants had other ideas.  The nurse directed me into a room, never took vitals, told me to take a seat and the doctor came in.  They wanted to “talk”.  The conversation that took place was an already decided upon course of action under the guise of a mutually beneficial conversation.  You know, like when you’re boyfriend or girlfriend says they want to talk and then tells you it might be best if you both saw other people.  Wait!  Did you get the license plate of the bus that just ran over me?  Starting to get the picture of how this office operates?

Basically, I was supposed to sign a document regarding my treatment and they were going to continue letting me receive treatment.  Hmmm…..I already pay insurance premiums for that “right”.  I signed their document and added, “signed under duress”. This didn’t sit well with them.  My stating I was forced to sign their document, which is a prime example of duress, gave them just another reason to say they weren’t going to treat me.

I knew vitals are required after every cycle.  They made no attempt to take them.  They knew I had my next dose of medication.  They knew I mentioned working on getting into a another practice instead of dealing with them.  I don’t trust doctors to begin with and this office was a cancer to my treatment.  Yea….it was that detrimental.

Am I a difficult patient?  Yup!  Do I deserve to have the doctors and their staff treat me with professionalism?  Yup!  Do I deserve to receive clear communication so I can give informed consent for my treatment.  ABSOLUTELY!!!!

However, there is no law from preventing medical doctors from withholding treatment from a patient; even with a potential life-threatening disease.  They don’t need permission, a hearing to remove the patient, or even assist in transferring them to another provider.

What if there isn’t another provider in the area?  Oh well, that’s the patient’s issue; not theirs.  When a practice discharges a patient, as they just had, they won’t take your calls and tell you to go to the Emergency Room if any issues arise.

After all of that, perhaps it was a blessing.  Don’t get me wrong.  I uttered several choice words, shed a few tears, said some prayers and moved on.  I’m getting set-up with a new  provider, within a new network.  I’ve had some friends (online and at church) offer support.

I’ve already got an appointment with a new primary physician, so I can get an emergency oncology referral.  Hoping she can order the necessary blood work, get the next dose of chemo ordered and I can follow-up with my new oncologist.

The situation is less than ideal.  I was on the fence about switching to another carrier/provider.  Perhaps being kicked out of a less-than-healthy medical practice was what was needed.  The group I am switching to has a very good reputation for their oncology department.  Who knows….maybe they will even offer some cancer support groups that weren’t available with my other provider.

Treatment has its ups and downs.  This past week has been such an emotional roller coaster.  I’m looking forward to moving on and getting better.

 

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

 

 

 

 

Golden State Mopars!

Published March 9, 2017 by lynn k scott

challenger

I live in the “Golden State”, better known as California.  While I happen to reside midway between Sacramento and San Francisco, the Golden State Mopars, extend the length of the state.  20170309_150209.jpg

Who are the Golden State Mopars?  Simply put…they are a great group of men and women, who own Mopars and are part of a car club.  If you’ve ever seen this on your door or windshield, or maybe even been handed one it means, “you’ve been carded”.

20170309_112109.jpg

 

Most of the group hangs out on Facebook.  If you’d like to connect to the group, just click the GSM group page.

This was taken from their Facebook “About” section:

Bringing Mopar Enthusiasts Together, Turning Friends Into Family…

Golden State Mopars is a car club for you. We love Challengers, Chargers, 300’s, Magnums, Vipers, old school Mopar Muscle, Trucks, Darts and anything SRT. Stock or highly modified, we like them all… We do cruises, meets, mod days, BBQs and other family friendly events. All we ask is that you are respectful and participate.

20170309_150139.jpg

Facebook limits the invites we can send out to club members, so we can’t send invitations to everyone. However, ALL club members are welcome to any event hosted by Golden State Mopars. Our events are fun, relaxed and family friendly, come have fun and meet new friends.

I’m not a car person and I’m the first to admit it.  I’m the woman at a car show that walks past a car, says, “nice” and moves on.  My husband on the other hand, will get down on his hands and needs to check out the undercarriage, has to see the motor and might engage the owner in a conversation about the car.  Oh boy, when that happens, my eyes roll and look for someplace to buy a drink.  LOL

1489096645290.jpg

That being said, this car club has a lot of “meet-ups”.  If you’re available, you attend the events you’d like to go to; however, it’s not required.  While Mopar cars are the focus of the group and they are what brings everyone together initially, it can definitely be extended to a car family and support system.

1489096800195.jpg

We help each other with car issue recommendations (well, I don’t on those; you really don’t want me to either; trust me).  We celebrate engagements, births of the next generation of Mopar afficiondos, and well as the times that life presents challenges that may be a bit harder to handle.  We get together for car shows, BBQs and pool parties.

All in all, it’s a great car club.  Whether you have a Mopar daily driver, show car, or a “mom” (or “dad”) car, we’d be happy to have you!

1489093183249.jpg

Kathi Cares Program

Published March 4, 2017 by lynn k scott

I recently took the plunge and joined Twitter.  I can’t say I’m a huge fan and the majority of my “tweets” will just be my blog posts, but hey, it’s free advertising, right?

That being said, it’s time to bump the Kathi Cares Program again.  For those of you who may be new to this blog or why I even started it, you can read more about it here.

This coming June 12th, will mark the fifth anniversary when my younger sister lost her battle to breast cancer; she was only 37 years old.  In remembering her, the Program speaks to her generosity, caring and willingness to help others.

While a few people have graciously made donations, I am primarily funding this project myself.  The goal is to become a non-profit, so I can ask for donations and those who donate will be able to have a tax write-off.  I am content helping one or two people at a time.

I would ask that if you have Facebook, you take a moment to look at the Kathi Cares Program page and see what it’s about.  If you read or see anything there that moves you, I simply ask that you share the page (or this post) so others might also benefit.

While it’s currently set up to be a local program in Northern California, the goal, one day, is to become nationwide.  I know my sister would approve and if she were still here, she’d be right here with me helping this program grow.

Boots

Published August 10, 2016 by lynn k scott

Facebook was nice enough to remind me of a short poem I wrote five years ago.  I had forgotten about it; really.  It was a time when I was trying to keep busy; be normal.

It was my son’s first (and only, if i get my wish) deployment.  I was a mess and writing helped.  I wrote to those deployed, other military moms and even new Gold Star moms (hard to do with a deployed child).

I am passionate about supporting our military because I know how much it helps their morale; esp. when being so far from home.  I will be sharing more about that and how others can help, but for now…a simple poem that gave me something to look forward to…

 

I have a spot on the floor
Right near the front door
There’s supposed to be a pair of boots there
But I can’t find them anywhere
I know where they’ve gone
Hopefully, it won’t be too long
For them to be replaced
And I see my son’s smiling face!

20160810_151906.jpg

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

Fearless

Diagnosis of a Chronic Disease Turned My World Upside Down

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

The Purple Almond

Where food is medicine.

Wedbites

"The Most Important Part of the Most Important Day of Your Life"

Mommy Usage

Perfectly Imperfect. Always Working Toward Better.

But I Smile Anyway...

Musings and memories, words and wisdom... of a working family woman