help

All posts tagged help

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

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.

FB_IMG_1515166030817.jpg

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.

Cancer Journey: Part 6

Published December 27, 2017 by lynn k scott

This is not the easiest post and it doesn’t have anything to do with the status of my diagnosis.

The last couple weeks have been tough.  I had to change my insurance plan, at work, and elected the “gold” versus the “silver” plan, in order to get rid of the annual deductible and bring down the usage fees when I see the doctor or get labs.  It also raised my weekly contribution costs, but it had to be done.

Unfortunately, with this plan change, came with a carrier change.  I joined the Sutter Health network and am sad to report they choose to charge patients a 20% copay for chemo medication, where other plans cover it 100% or charge a max of $50/prescription.  Hopefully, one day they realize how punitive this is and begin to cover oral chemotherapy pills as effectively as they do IV chemotherapy.

I left a plan where I was receiving negligent care and now I have a decent oncologist, but can’t afford an additional $300; every three weeks.  That includes the cost of the doctor visit, blood work and the expensive medication copays.  If I give up the ability to work (which eventually puts my job in jeopardy), submit to another surgery for a port, start IV medications, lose my independence, risk permanent side effects and not provide for my family, then the medication would be covered 100%.  Riddle me this…oral chemo is cheaper than IV treatment, but the insurance refuses to cover it 100.  Why?  Never mind; I digress.

After numerous breakdowns, I conceded I had to ask for help. I have had to resort to something I really hate doing.  I know fundraisers have helped many people and I have donated to those in need.  I was brought up that you work hard and support yourself.

I have followed the proper channels to ask for medication assistance.  It appears I was diagnosed at the wrong time of the year.  Nonprofit sources run out of money to help with prescriptions by the end of the year; that’s if they even acknowledge your disease.  Again, not all cancers are pink, but that’s where the funding is.

I have applied for part-time jobs.  I already work a full-time job, but need something to pay for my medication; even if it means working seven days a week.  I still am waiting for someone to hire me.  Problem is, I’m overqualified for the minimum wage jobs, even though I am willing to work weekends.

I have managed to get enough donations for another round of chemo.  However, I now have two weeks to raise enough money for the next round.  My pride is temporarily on a shelf and I have to post a link to my fundraiser.

If you are able to donate, even a $1.00, I would appreciate it.  If you are able to share either via blog or on your FaceBook page, that’s appreciated.  I plan on removing the fundraiser if I am hired or if some non-profit is available to help.

I apologize for having to post the link; but if I don’t raise the $300, in the next two weeks, my chemo treatment stops.  Please take a moment to read the fundraiser and if you don’t mind, share it where you can.

THANK YOU!

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.

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.

 

Could I ask a favor?

Published March 23, 2016 by lynn k scott

I typically don’t ask for favors, but I am now.

I have a talented friend, Tom, whom I met because of my sister.  He is a veteran and has entered a contest.  I would like to see his drawing get the most “likes”.  If you have Facebook, and it’s not too much trouble, could you please click on the link, “like” the drawing and feel free to say a few words in a comment if the moment moves you to do so.

Then, if you wouldn’t mind either sharing this blog or the link on your own Facebook wall, it would be a double dose of kindness.

So here’s the link, Jessie’s Warriors,

Thank you so much!

Anxiety The Bitch

The voice behind the silence.

The Novel: UnHoly Pursuit: Devil on my Trail

The UnHoly Pursuit Saga and other related series. Paranormoral romance, demons, saints, angels, Azazael, witches, warlords, fiction, fantasy, antichrist, harassment, devils, hell, spirituaity,

myra shoppz

A online store

In Dianes Kitchen

Recipes showing step by step directions with pictures and gadget reviews

"Windows From Heaven" A gift of Comfort, Inspiration,and Hope, for 2018 and beyond

The True Story of a simple man chosen to capture God's intentions,through his Photography

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 a diagnose 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!