Cancer

All posts tagged Cancer

Cancer Journey: Part 2

Published November 6, 2017 by lynn k scott

I’ve been on oral chemotherapy for a week now.  I have been lucky not to experience many side effects.  The worst, so far, has been nausea and fatigue.  Those who know me, know I am always on the go or doing something.  Friends ask me if I know what the word relax means.

My anger has subsided a bit.  I am still less than pleased with my oncology team.  However, I am doing my best to see the positives in all this.  Positives with cancer?  Seriously?  Yup!

I truly believe God has a plan for me; for all of us, really.  I have known so much suffering, loss and tragedy.  What’s a stage 3 cancer diagnosis added to all that, right?

I was speaking to our pastor’s wife yesterday and shared how I recently thought of a positive to having cancer:  it’s brought my oldest and I closer.  One could say we’ve had a tumultuous relationship.  We were having a rough patch prior to my diagnosis.  We had only recently started speaking again.

Once I told him about the diagnosis, our relationship improved.  It reaffirmed how precious life is and how it’s not promised to anyone.  So, if cancer brought us closer together, than I am grateful.

Another positive is, as a friend pointed out when she heard the news, this disease would bring me closer to God.  She was right.  This struggle is not mine alone.  He is with me through this.  It’s my job to trust in Him and give Him control of the situation.  He has guided me to a church with very supportive and caring people.  He will stay beside me on this journey.

I am also learning to rest and pay attention to my health.  Currently, I have energy for about half a day.  I am still working a full-time job, homeschooling my daughter every evening and running a household.  Is my house as clean as I want it?  Heaven’s no!  Truth be told, it’s driving me nuts to have clutter and not having certain areas spotless.  Will we survive?  Yup!

My daughter and husband have taken on a few of “mom’s chores”.  They are aware I just can’t do it all or that it might be postponed if i need to take care of it.  I am taking time to spend a extra hour or two in bed on the weekends.  I am going to sleep hours before the clock approaches midnight.

Today was the first day I had to wear a mask at work, as my immune system becomes more compromised.  I was NOT happy having to do this.  Yet, a friend suggested having my artist daughter (who’s 11), draw happy faces and butterflies on my masks for me.  I’m going to give her a few to try out.  She’ll get to be expressive, I get to count this as art for homeschool and I should have some “designer” masks to make this journey a bit more bearable.

So as much as I hashtag, #cancersucks, there are silver linings to be seen.  You just need to know where to look.

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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.

 

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

 

 

 

 

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.

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.

“Pinktober”

Published October 5, 2016 by lynn k scott

October is once again upon us.  While everything pumpkin is back, which I LOVE, I’m sure you’ve noticed all the pink that has suddenly taken over the internet and stores.

October is Breast Cancer Awareness month.  It’s nice that a horrible cancer is being acknowledged.  However, in this awesome capitalistic society we live in, the vultures circle and wait for this month to arrive.

I often tell people, “think before you pink”.  What’s that mean?  It means, with everyone jumping on the pink bandwagon, they do so more for increased sales and profits than they do for donations to cancer research and support of those who are fighting their battles with cancer.

for sis

I encourage everyone to look into the organizations and stores that have pink items for sale and promise to make donations if those items are purchased.  Do they take in hundreds of thousands of dollars?  Does 10% or more go to breast cancer victims and/or research?   Or do they rely on pulling on heart stings to loosen purse strings in order to pad their pockets and give a very minimal amount.

I won’t name names, but check out some of the organizations sponsor walks to raise funds in the name of patients and research.  See how much their CEOs are making.  See what actual percentage are being donated versus how much is being paid to overhead costs.  I’m sure if you haven’t done it already, you’ll be quite dismayed at the misappropriation of funds that occurs, based on the color pink, in the name of breast cancer.

For me, October isn’t the only day I think about breast cancer.  It’s a thought that I live with daily.  I will never forget what breast cancer has stolen from me.  The hurt and pain it’s caused.

frontIf you’re so inclined, please feel free to share this blog post so others may think before they choose to pink.

I invite you stop by the KathiCaresProgram page and follow the our progress in giving back to local cancer patients.

 

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