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Cancer Journey: Part 16

Published July 2, 2018 by lynn k scott

I believe this will be the last cancer update for some time.

I met my new oncologist this past Friday.  While she seemed genuine and sincere, it was an effort in futility.   I had a complete breakdown when she asked why I was there.  I clearly stated it was because she was my last option for a doctor; based on what the insurance carrier would permit.   She didn’t didn’t take offense; esp. after I explained what I meant.

She wanted to order a PET scan.  Awesome…I can’t stay still, flat on my back for 30-minutes.  She asked if a particular drug would help relax me.  I have no idea as I haven’t had it in almost 30 years.  She said she could order a CT scan, but that might be inconclusive and it’s not as complete as a PET scan.  I still might need a PET scan after the CT scan.  That pretty much sums up the CT scan is not the way to go.  Each of these scans would cost me a $350 copay.  Let’s not even mention having to add an IV to do them.  My veins have been oh-so-cooperative (NOT).

She mentions how I didn’t receive enough chemo.  Gotta love my previous doctors  (I need a “NOT” button).  She went over another option, that wasn’t clearly explained to me by my first oncologist.  So there goes adequate informed consent.

Then, she had the “brilliant” idea of telling me I should see a counselor about my grief for 3/5 of my family being dead (mostly due to cancer).  How about addressing the issue of NO SUPPORT for cancer patients that are still alive and breathing?!  How about offering legitimate financial support.  People are struggling to pay their every day bills.  Add a 20% copay to all their medications (even if each one caps out at $200), that’s still a huge increase every few weeks.  Let’s not mention, the patient probably wouldn’t be working full-time either, so now there’s a loss of income but increase in expenses.  The working person falls through healthcare crack which is the size of the Grand Canyon.

We agreed to start off with more bloodwork after I told her I guess there was nothing she could do for me.  I asked the nurse who was going to talk to the lab about how I’m a hard stick.  She told me I could let them know.  Gee….that’s worked really well in the past…again…NOT!  They make no offer to warm my veins to see if that would help.  They do nothing different than a person who is able to give blood easily.  I drink tepid water already (which was her suggestion).  First, I’m not new to blood draws.  Second, it’s obvious she had no intention of doing anything additional for patient care.

I’m supposed to go back in six months.  The nurse really thought she was going to schedule that after my appointment.  I think not.  IF I were to go back, I would call in.  six months is in December.  I have my daughter’s birthday to deal with.  It would be January at the earliest that I would even consider going back in.

I walked out no further along than I have been these last few months.  I am officially done, at least for the immediate future, with doctors, blood draws, scans and anything else related to this effin diagnosis.

My survival is solely in God’s hands.  I am changing my diet and will be trying CBD oil for cancer patients.  While I will not go gently into that good night, I no longer have any faith in the medical world and their attempts to treat me.

Being the realist that I am, I am now officially putting my affairs in order (just in case).  I will be drawing up a living trust and making my husband add his information because he won’t do it on his own.  We don’t have may assets, but the few we do have need to go to my youngest (as most of it belongs to her dad).

I ask for continued prayers for my health and for the strength to prepare my daughter for the worst case scenario.

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Cancer Journey: Part 15

Published June 28, 2018 by lynn k scott

Tomorrow I meet a new oncologist.  I had to call to confirm my appointment, as I hadn’t received a reminder call.  The woman laughed it off that she hadn’t sent out any reminders.  That’s all well and good, however, I’m traveling 30 minutes out of my way and losing a half a day’s work, so I don’t have the luxury to hope everything is still on schedule.

I have been re-reading my previous oncologist’s visit comments.  They still have not fixed the part where my sister died of breast cancer at 37; not 47.  They have only been told three times now.  They make me seem like a bitch for refusing IV chemo because it’s the treatment they would have preferred.  My original oncologist said outright they could not confirm I did or didn’t still have cancer.  They were going to treat me as if I did; just in case.  Silly me for wanting a definitive answer and to have a somewhat normal life with such vague information from a “professional”.

They villianized me for refusing tests that exposed me to additional radiation without a legitimate cause.  I also had stated that tests need to be coordinated that required IVs.  My veins rolls and collapse, but they don’t consider that when they schedule tests.

I am not holding out much hope for tomorrow’s visit.  We will have to go through all the questions that have been already answered and are in my file.  It’s too much to ask for doctor’s to read before meeting a new patient.  Wasting time is the preferred interaction method.

I know she will order more blood work.  Let’s hope my veins cooperate.  Who knows if she will order the CT scan that I believe should have been done already.  A point my previous oncologist and I did not see eye to eye on.

My anxiety is messing with my sleep again.  I just need this appointment to be over.  Then I get to wait to see if my levels are elevated (which would indicate the cancer is still there).  Waiting games suck; moreso when your very existence is on the line.

No matter what happens, cancer still sucks!

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.

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.

Sponge Mom

Published March 31, 2015 by lynn k scott

My precocious 9 – year old is at it  again.  Recently,  she has dubbed me,  “the fun sponge”.

If I have to say no, “ruin” play time with school,  say anything remotely intelligent, she breaks out the “fun sponge” name.

According to my precious babe, I suck the life out of the fun.  Wow!   Ok, I can own that.  After all, my job is to make sure what needs getting done,  gets done.

Last night,  she upgraded me to the official,  “Sponge Mom” title.  It’s too close to the irritating, little yellow sponge cartoon, that makes me wanna to be tortured with hearing nails on a chalkboard, than hear his laugh, but I got this.

I cannot share that fact with my daughter.   I just smile,  let her know she is still to do as instructed because life isn’t fun all the time.   I know,  such a meanie by making her responsible.

Oh, her teenage years are going to be fun.   She won’t think so,  but I certainly will.  She hasn’t seen nothing yet.

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