My Cancer Journey

All posts in the My Cancer Journey category

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.

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Dutch Bros. Coffee

Published December 1, 2017 by lynn k scott

I make my own coffee every morning.  There are days I like to treat myself.  Being in Northern California, there is an amazing coffee company called Dutch Bros.  If you’ve never heard of them, or worse yet, haven’t tried their coffee, you’re truly missing out!

There is a Dutch Bros. near my office (about 5 minutes away).  What sets this coffee stand apart from the (self-dubbed), ‘Evil Empire (the coffee joint that must not be name – but has a celestial sign + a word meaning money), is it’s product and staff.

While, you can’t go inside, sit down at a table and suck up free Wi-Fi, you can order at the walk-up window or pull up to one of two drive-thrus.   There you can order an assortment of coffees, teas and blended drinks.

As a coffee purist (also self-dubbed), if you’re among the few people who don’t need coffee for survival, please wait to order your blended, non-caffeinated drinks til after 9:00 a.m.  Those of use who need that hot cup of coffee thank you in advance.  Sorry…I digressed there for a moment.

Anywho…with the chemo meds zapping every bit of energy I have and continuing to work full-time, I have been relying on lots of caffeine boosts from Dutch Bros.  Since it’s the Christmas season, the Caramel Eggnog latte is my favorite.  Add a bit of whipped cream and a sprinkle of cinnamon and you’re in eggnog heaven.

If I can’t get my eggnog, I go for a Carmelizer or 9-1-1.  The days that I am completely exhausted, are my 9-1-1 days.  Who couldn’t use 6 shots of espresso?  Calm down…it’s not that bad…everyone knows espresso has the least amount of caffeine.  Six shots is just the right amount of extra boost.

I would say 99% of my Dutch Bros experience comes from the Dixon, CA location.  When I’m not at work, I will occasionally stop by the Fairfield, CA location.  Soon, Vacaville, CA will have a location open.  Can’t wait!!!!

Don’t forget to get a stamp card.  Every 10 purchases gets you a free drink!  If you buy a reusable cup (I have 3) from them, you get a free drink.  It also saves you $0.25 on each purchase when you bring the cup in. wp-1472070865046.jpg

When my 11-year old daughter would commute with me, I would have to hide my stamp card.  She would count the card to see if there was an odd number or see if it was almost filled when she knew it should be almost empty.  Why was she checking?  She wanted to know when I got the yummy Dutch Bros. treat and she didn’t.  If she caught me, I would have to take her to get her Chocolate Frost.  I stopped letting her look at the card; she was costing me a fortune.  LOL

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She found out I got DB without her.

I will gladly take Dutch Bros. gift cards for all birthdays, holidays and thank-yous.  Honestly, I can’t thank them enough because they are a beacon of good coffee, pleasant employees and fun during my cancer journey.

Recently, we were able to get a Dutch Bros. ornament with the purchase of a large, hot beverage.  Well, obviously that meant we needed make a stop and have one of these ornaments for our tree.  Who could resist a deal like that, right?

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How can you not like a place like this.  Seriously, try out Dutch Bros. if they are anywhere near you.  I have yet to meet anyone who doesn’t appreciate the energy this company offers along with some pretty good coffee.

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.

 

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.

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.

 

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