diagnosis

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Cancer Journey: Part 12

Published April 20, 2018 by lynn k scott

My oncologist was nice enough to respond to a message I sent her office yesterday with, “what happened to the oncologist we referred you to”?   While I am not a fan of this doctor, there are literally no other doctors in the area that won’t cause me to lose at least half a day, if not a whole day from work, for each appointment.  She might as well have asked, “why are still part of my practice”?

Seems cancer wasn’t done messing with my life.  The other day, I received a message from my youngest sister’s best friend.  She found me through Facebook and sent me a private message.  I haven’t spoken to my sister in over four years.  Seems my sister was diagnosed with Stage 2 breast cancer.  It’s the same strain that took my other sister’s life.  The same sister this page honors (or tries to).

I’m not sure where our relationship is headed.  I was beyond hurt by her actions several years ago and firmly believe she was in the wrong.  I may not have been right, but I wasn’t allowed to see if I was or not.

That being said, we exchanged some messages.  She learned of my cancer.  I never told anyone who wasn’t in my life.  I didn’t want pity and I didn’t want them to care out of obligation.  I’m lucky I didn’t wear make up when I found out, because I did shed some tears.

I then thought I still have a chance of still getting breast cancer.  Having done battle with my current diagnosis, I’m not sure I could handle another one.  Then, my thoughts moved to that of my 12-year old daughter and granddaughter.  They would need to be tested in their 20s because of the family history.  I pray a cure is found before that needs to happen.  Am I holding my breath for that to happen?  Absolutely not.  I know cancer is a money maker for Big Pharma and the doctors who treat it.  They don’t want a cure because then they will lose billions of dollars with their poisonous drugs; all in the name of “treatment”.

While I keep saying I’m going to drink, I probably won’t.  Don’t need a hangover and try to get up for work.  I’m emotionally numb to this latest cancer revelation.   On the flip side, I have no tolerance for the medical world now.  I am done being nice.  I will not be placated.  I advised my oncologist’s office of my sister’s diagnosis.  Silly me thought they would know ‘kid gloves’ were now needed in dealing with me.  They are truly clueless.

As my youngest daughter has dubbed me, “NY Mommy” when I deal with anyone in the medical profession, I have chosen to embrace that term.  I no longer feel obligated to put up with medical nonsense.  I am in charge.  They either will understand this the easy way, or they will kick me out of the practice because they chose the hard way.  At this point in my life, I really don’t care either way.

I realize this isn’t Christ-like behavior.  However, I’m so overwhelmed lately, this is all I can manage.  I pray for grace and the ability to handle this situation better.  If it comes to pass, then it’s His will.  Til then, NY Mommy is in the house!

This is the reality of a cancer patient.  Pretty ribbons are nice, they have meaning, but it’s not the true showing of what cancer patients go through.  That’s what these blog posts are about.

I’m still adding my fundraiser link because I have still have expensive testing/scans that need to take place.  Any monies above that, I will donate to my sister because she’s feeling the crushing expenses of having a cancer diagnosis.

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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.

 

Grateful for Intolerance

Published March 27, 2015 by lynn k scott

Grateful for intolerance?  Who would really be grateful for that?   I have yet to do is clarify that statement, which will put the ‘intolerance’ in perspective.

For a variety of reasons, I have yet to receive an official diagnosis, but I am someone who cannot consume gluten without paying some pretty severe penalties.  I hesitantly say official diagnosis because I am acutely aware of how my body reacts:  the pain, the not-so-nice bodily functions that result, the inability to stay awake, the inability to sit up or rest comfortably, the bloating (as in a full pants-size) and a myriad of other symptoms.  I know I need to seek out a medical professional to assist in managing my condition, whatever those who “practice” medicine choose to call it.

Around this time two years ago, marks when my symptoms peaked.  I spent several times in one week, getting up in the middle of the night, going downstairs as to not wake my husband, curled up in the fetal position on the throw rug in the livingroom, literally praying for death through my tears.  Not having health insurance meant I had to make a choice to suffer at home or risk thousands of dollars for an emergency room visit they may or may not be successful in removing the torment I suffered from.

Seems a bit far-fetched doesn’t it?  Yet, countless others know exactly what I am speaking of.  Whether it’s a “simple” gluten intolerance or actual Celiac’s Disease, it’s not a fad, it’s not made up, it’s not a weight-loss gimmick.  It’s real!

I never considered a simple protein could cause such discomfort and pain.  It wasn’t until a friend knew of my suffering suggested I try to go gluten-free for two weeks.  I was literally ready to try anything.  Luckily, this option was painless and didn’t require lots of money to try.

Two weeks went by and my symptoms weren’t gone, but the debilitating pain was.  I took to making an honest, gluten-free effort, in my eating habits.  While it meant reading more labels, it wasn’t a big deal to me.  I was a vegetarian for nine years.  I was a label-reading-holic.  It was second nature.

Two years later, I am still as gluten-free as possible.  I’ve lost and kept off 40 lbs.  I once read a weight loss article regarding sacks of potatoes and using them a reference for losing 10-lbs. If you’ve lost 10-lbs, you’ll have a decent, physical representation of what was on your body.  Try looking at four of those bad-boys.  I was secretly impressed with this “side effect”.

Is maintaining a gluten-free diet easy?  Yes and no.  It has helped me continue my quest in eating better.  It affords me the opportunity to make even more homemade dishes; not just for me but my family as well.  I eat less processed foods than ever before.  I can’t really say that’s a bad thing either.

Granted, my food bill has gone up, esp. where alternative flours are concerned or buying something pre-made that is gluten-free.  It can be frustrating when I want something “quick” to eat and I can’t just grab a cookie.  Please don’t suggest a piece of fruit or a salad.  Believe me, I get more than enough of those foods.

Over all, I am grateful for my intolerance or perhaps, disease.  I will work on getting that official diagnosis.  As you know, I have issues with the medical community and need to find the right doctor who actually understands my symptoms and treatments.  I don’t need “I don’t knows”. I need a doctor who can see the long-term goal of managing my food-related journey so I remain as symptom-free as possible.

You now have a glimpse inside the gluten-intolerance world.  I have spared you the really gross details with a glossed-over version.  I think it’s best for all concerned.  After all, some of you could be eating while reading this. Please remember, the majority of us with intolerance or Celiac’s aren’t being difficult in restaurants.  Just because we don’t go into anaphylactic shock upon ingestion of a bagel or piece of bread, doesn’t mean we won’t be sick after we get home (if we make it home before symptoms set in).  Please be tolerant in that regard.  I’m not as grateful for public intolerance for an issue they are typically clueless about.

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