January 4, 2020

August 27th 9th Treatment - New Attitude- Disability Insurance -Medical Bills -Nutritionist - Nurse Navigator

New Attitude

Into the third month of "Life After Being Diagnosed with Cancer" and I have a new attitude.

It dawned on me that if I can be happy (or Joyful) during time of my life I can be Happy (Joyful) during anytime of my life.  I can't figure out the word - happy, joyful, content - for this.  I don't think it is an emotion because emotions come and go.  Content is a bible term and more permanent.

It's a state of mind.  That 's what I'm looking for a state of mind that is consistent regardless of the outside circumstances.

My attitude walking into this week was one of...maybe its Accepting.  Accepting the circumstances and falling into as if I choose it.  This reminds me of two of a Joseph Campbell quotes:
  • Participate joyfully in the sorrows of the world. We cannot cure the world of sorrows, but we can choose to live in joy.
  • All you have to do to transform your hell into a paradise is to turn your fall into a voluntary act.
This made all the difference in my outlook and how I treated people.  

I read this week how a newscaster in New Orleans died in a freak plane crash. Her name was Nancy and how she treated people was a driving force for how people responded to her death. 

9th Treatment

I brought my new attitude into the session...except dealing with the front desk lady and the disability paperwork (see below).  I realize that I am a firm believer in getting it right the first time.  It's not just a slogan it's required.  I recovered but I was in business mode and ended that with being pleasant.

After I got through the paperwork request I was on the joyful code.  From the nurse who takes your vitals...she's pleasant...and because of that my blood pressure was good today.  I've gained 2 pounds in a week. I was starting to get concern because I was dropping lots of weight.  Now I have to lose the 2 pounds and maintain. I think it's the weekly steroids or the fact I started eating meat - chicken and fish - again.  I just didn't think I was getting enough protein and I need protein to keep my energy up.

When I sat down I greeted those that I knew:

  • The lady who does crafts and I told I would call about putting items in the shop.  I need to find her card and schedule the call to see what she can do.
  • The lady who always looks deathly ill and looked that way today.
  • The lady who is 33 yrs old with 3 young kids who just moved from NC - Found out her name is Marie (more about my conversation with Marie)
  • A new lady who came over to me and asked me if this was my first time.  I thought she meant with chemo treatments but she meant getting cancer!  She said this was her 3rd time getting cancer!!! First Breast Cancer then 10 years lady colon or kidney (can't remember which because I'm in shock and not totally connected cognitively), now breast cancer again in the other breast.  She told me because she wanted me to know that "God is Good and  I'm telling you getting cancer can change you for the good"
For the majority of the time before the infusions started I was talking to Marie.  She's joyful and fun.  I also learned a lot because we have the same breast cancer - triple negative ductual invasive. We were both diagnosed at the same time I'm 2 treatments ahead of her. Things we discussed that I want to remember:
  • She called getting cancer and treatments like a plane ride - sitting in the recliner, keeping busy for 2- 3 hours....interesting analogy
  • She also has friends who text her weekly sending encouragement during the week.  That is so helpful and I can attest those who have hung in there with me for all this time are true jewels. 
  • We talk about how we can help after this is all over
    • Donate to the ladies who bring the sandwiches
    • Tell the cancer story so people know what to expect
  • She told me about the cancer hats that are in a basket in the lobby and showed me one she got to keep her head warm in the winter since we're bald and it's going to get cold. 
  • Her head is almost bald. She hasn't cut it yet but it is completely white because she had long hair and air/sun was not getting to her scalp.  She's making the cut and wig shopping a fun girl event...that's important. 
  • There is a delay between treatment drugs...I confirmed there is a week delay.
  • Our cancer started in a duct and broke out.  When it broke out we could feel the lump and it grew rapidly from there.  Both of our tumors were very large and both had now gone away with the chemo treatments. 
  • She talked to a counselor early on because she was still trying to do everything, but that caught up with her when fatigue set in. 
  • She sold her house in Charlotte for a profit too. Markets still good there. 
  • Talked out her kids and telling them about her having cancer.  I haven't told Danaja yet but she knows I'm sick and staying at home.  I don't want to scare her.
  • Surgery and how they determine what type of surgery the patient will have
  • We have the same doctor
My chemo nurse started the process.

We had some problems with the Port but not as bad as last week. It took effort but she got the blood out to be able to do blood work. I like my Chemo Nurse, Brenda.  I feel lucky that I have her.  She's efficient, informative and kind.  I'm trying to figure out what to do for her and the crew on my last chemo day.  Maybe cookies from Costco and flowers for Brenda.  I don't know yet. The infusions began.

At the end I also talked to the other Chemo nurse about telling black americans about cancer.  There is somewhat of a stigma to this thing.  Honestly you don't want people to know.  It's a fail.  It's viewed negatively. This nurse who was black american said people need to see what cancer looks like, they need to know to get checked early to catch it early.  I'm kindof wondering my role in cancer advocacy.  I don't know yet.  

Disability Insurance

Has been a bear this week!!!

  • Prudential asked me to call my employer to get information about getting Prudential the information to go from 50% to 70% after the 6 weeks in up.  
  • Called employer and they advised that they don't send that to the insurance company but it comes from a weekly feed from the benefits center
  • Called Prudential to advise them of the weekly feed and who to contact (I shouldn't have to do this).
  • Called Prudential to asked if they received the fax (good grief faxing still!) with my W4.  They were taking the MAX for Federal Taxes and it was almost $500 a week (yikes!)  Never heard back if they received it or not. 
  • Did not get the weekly Thursday check. Called Prudential about this...no call back.  Check did not arrive until Monday of the following week.  Looks like the Federal Taxes were reduced but not by much.   No explanation from Prudential
  • Received updated uploaded letter approving the 70% and advising that I had about 10 days to get them updated medical information so they could extend the benefits past the initial approval.  Well it takes 10 BUSINESS days to get medical records. THIS IS PAINFUL!
  • Then I have to inform my boss and employer that I plan to extend the date.
  • I'm trying to figure out at this point how folks who are not administrative manage this while they are SICK on DISABILITY.  If you don't have attention to detail...forget it...you're out of luck!  
  • It has been a daily painful stressful effort this week.  This doesn't help when you are tired and sick. 

Medical Bills

Just keeping an eye of them.  Received two more small ones I was waiting for.

I created a spreadsheet from Anthems information so at least I can know which ones to expect, one I've paid and that are coming.

Basically I'm down to a few stragglers from May/June time frame that are coming in, the big one from Sentara Williamsburg for $3.5K for a crazy facility fee for a Biopsy.  One which I intend to negotiate down because I think it's highway robbery. This is the same bill that initially came in at my cost $18K, then my cost $5K.  I'm waiting on the final bill before I call them to discuss.  I'm willing to pay $2k as a one time lump sum payment and call it done.  We will see.


Anthems nutritionist finally called.  Just checking boxes.  I told her I was interested in meal prep information because I wanted to start cooking.  She will send me some links to recipes,  She was helpful. I'm looking forward to trying it...especially when I get back to work.

Nurse Navigator

Sentara's nurse navigator made her monthly call. I missed her call so called her back and told her I was doing well.  Again this was after an attitude adjustment because before I saw the role as checking the box, unnecessary and just another person to "talk to" about something I wanted just to end.  I left her  a nice voicemail and intend to see the benefit in talking to her.