support

All posts tagged support

Updated: God in my life

Published May 31, 2018 by lynn k scott

I’ve been reviewing some of my previous writings.  I thought with June looming around the corner, it would be a good time to reflect on God in my life.  I wrote the original, “God In My Life” a year ago.  Since then, I have been diagnosed with Stage-3 colon cancer and my youngest sister, whom I’ve somewhat reconnected with, has been diagnosed with Stage-2 breast cancer.  While I am fighting cancer with everything I’ve got, I never went through the “why me” phase.  I truly trust God has a plan for me.

I am still with Simple Church and they have been beyond supportive.  I know I was led there before my cancer diagnosis was brought to light. For that, I am eternally grateful!  I am thankful for everyone who has prayed, and continues to pray for me.  Prayer really does work.

 

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Cancer Journey: Part 13

Published April 20, 2018 by lynn k scott

I logged in to post another update.  I realized my last update was still in the “draft” stage.  I could have sworn I posted it.  Oh well, it’s up now, so there will be back to back posts for you to read.

As you may have noticed, I have changed the Featured Image because my fundraising link contains my sister’s battle too.  I’m sending her current donations as she is still out of work from her surgery.  Chemo has yet to start for her, but I’m know she’ll have more expenses when that starts.

As for me, my latest oncology referral was rejected.  The insurance allowed me to see someone in their network, but she’s technically not in my network.  Only problem, they neglected to find out her specialty and she only treats breast cancer patients.  Lovely, another oncologist referral bites the dust.

The nurse at my current oncologist knows I want to transfer and I know my oncologist wants the same.  Her suggestion?  Seeing the other female doctor in the same practice.  Ummm….NO!  I didn’t tell her I want a native English-speaking doctor.  I shouldn’t have to figure out what the doctor said because I can’t understand her.  This new doctor isn’t a native English-speaker either.  Not to mention, I know doctors speak to each other, especially in the same practice, and I can’t guarantee quality treatment because of this.

I have no option but to stay with the same provider.  I have asked for my CT scan just to be scheduled as I can’t do so with a new doctor; which was the plan.  I had to tell them the reason I told them of my sister’s cancer was not for sympathy, so I could get scanned for breast cancer too.  I really shouldn’t have to point that out.  They are in the cancer business.  It’s their job to know that if two sisters have/had the same strain of cancer, then I am at greater risk.

Has my scan been requested yet?  Nope!  After all, why should they have a sense of urgency?  Their life isn’t hanging in the balance.

I know my cancer updates aren’t cheery.  They are filled with sarcasm and are a bit jaded.  This is reality.  The medical world has lost its empathy.  Those facing life-threatening diseases aren’t supposed to be angry.  We’re not allowed emotions.  We’re supposed to blindly follow whatever our medical “professional” says.  WRONG!  I’m now fighting back and I’m not just talking about the cancer.

I have been researching alkaline diets.  Shocking to those who know me, but I’ve even cut back on my coffee.  I’ve switched half my intake to green tea instead.  I will never give up my coffee, but I know changes are needed.   Except for today, I my diet has been at least 70% alkaline foods.  I plan on continuing this path.  Oncologists don’t want to hear there are homeopathic options.  Why?  Because they would lose stock money that Big Pharma pays them to push their poison.  Sorry….I digress.

In addition to learning my sister had cancer, another tragedy has struck my family.  I will not go into details.  However, I will ask for every prayer you can spare.  It’s a horrible situation.  I have inactivated my FaceBook account and have no plans of reactivating it any time soon.  People are ruthless and forget they are condemning someone without facts, knowledge of the incident or that family reads the same thing they do.  That’s all I’m going to say.

I’ve been praying daily for myself, my sister, my family, guidance and countless other issues.  There’s a purpose to all this.  I just wish the reasoning would manifest sooner than later.

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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.

 

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 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.

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