September 2019 - Oncology Appt, Half Way There

Oncology Appt.

The doctor was late because she had been at the hospital all night.  Her assistant asked if I wanted to meet with her instead of the doctor.  From my last experience I politely as I could indicated that I would wait for the doctor and it was a GOOD thing that I did.

I lucked up on the Oncologist, she is great! We talked about not being able to feel the mass any more, she asked about my side effects and the worse is now that my feet are numb....called neuropothy.  My hands are not bad that came and went, but I can't feel my feet anymore.

She made a note and then decided that there is no efficacy in continuing the next two Taxol treatments.  Most people only make 9 -10 treatments and I've had 10 treatments so she cancelled the last two treatments.  

Then she looked at her notes to confirm I had not started with the other drugs and advised I still need to do the two new drugs because they don't have any clinical trails that indicate you can just do Taxol/Carbo to get cure...BUT...there is a slight break between the new drugs to build your body back up.

She did indicate that with the new drugs I'll be more tired and nauseated so it's every other week.  The body can't take weekly.

During the 2-3 week break she ordered chest scan and blood work.  I asked if the new drugs caused neuropothy and she said it is not typical.  Hopefully my feet start to come back because sleeping at night is unbearable.  During the day I'm moving around so they get stimulated, but at night forget it, it's like a toothache in your feet.

During the Chemo Free Break...

• I feel like I can think clearer.  
• I can walk up the stairs without getting winded. 
• It doesn't feel like someone is sitting on my chest. 
• Tiny bits of hair is growing back on my head. 
• My feet are still numb but it feels like portions of the nerves are coming back to life. 
• My son said my color is coming back (what??? he said that I looked pale before but now he can tell the difference in my skin tone...interesting). 
• My hands don't look like they are the hands of a 100 year old. 

I'm just thinking that I should enjoy feeling half-way normal.  Honestly I'd forgotten what that felt like. I didn't even realize I didn't feel like normal as I was just pushing through the pain.

Medical Bills 

I can see the light at the end of that tunnel too.

We are at $150,000 in claims and I've reached my $10,000 max.

I'm paying the bills as they come in and learning during the process. I've now paid $2,000 in medical bills and trust me I've learned they only bill you ONE time then they bill you a SECOND and FINAL time before they threaten for you to get in touch with them to set up a payment plan OR face a collection agency. 

Learning about the medical "system" and seeing how it could ruin your credit and force people to go bankrupt. It's unreasonable to think people HAVE THOUSANDS of dollars to pay for a service that is:

• Overpriced
• Not negotiable
• Not known before the service is rendered

It is unreasonable.  I'm now interested in this topic...insurance, health care, medicare, etc. This isn't going anywhere and the older a person gets the worse it could get if you need medical care.

Sentara $5K Bill

I got a REQUEST FOR PAYMENT statement for the $5,158.44 and no phone call from the supervisor who should have been looking for this bill.

Okay so now I have to do the accounting for myself and uncovered errors on the Hospital part and the Insurance part.  I did a spreadsheet and came up with the number it looks like I owe. $2,468.21 (me) vs. 3,506.31 (Insurance)  vs. 5,158.44 (hospital).  Actually it was like forensic accounting and I ENJOYED doing it.  

I was just sitting there as I was working on it thinking how many elderly people might just sent a check for $5k without having anyone to help them.  I think there is a business opportunity in this.  I looked it up and there is it is called "Daily Money Management/Paperwork Management"...hmmm...something to consider. 

 I can especially see this working with medical bills because in this case there is a difference of $2,600!  It all just took me back to my first job as a bookkeeper....something to consider for the future.

Oncology Bill

They are far far behind in their billing...and at $10K for a chemo treatment I can see that they could afford to be...especially when folks have insurance.  So, I'm paying them as they bill me and that's months behind.  I just need to pay it before the end of the year for tax purposes.

Talk to Navigator

I thanked her for all her help especially setting up the appointments with the surgeon and oncologist.  Best medical team I could have asked for.

September 2019 10th Treatment, Surgeon Appt., Medical Bills

10th Treatment

This was the two chemo drugs day and it is tough. It takes DAYS of recovery.  Getting the treatment is not bad it is after the treatment that is tough. Seems to me that the side effects are building especially being tired.

Walking around the block is a challenge. Walking up stairs is a challenge. Being in the sun for too long is a challenge.  I'm just trying to keep moving as much as possible without falling out.

Eating is getting harder.  I'm not hungry. Mostly thirsty but not hungry.  I started back on chicken and I feel worse.  I need to back off of that.

A man rang the RED Bell during this treatment.  He rang it and rang it and they took pictures.  It was great. Happy for him.

Surgeon Appointment

The appointment went well.  The surgeon said he could not feel the tumor either! 

Chemo is tough but it is working as it should!  I can't be happier about that.  The surgeons nurse told me she had breast cancer 11 years ago and I will beat it just like she did.  Just keep going.

The surgeon showed me the MRI.  I hadn't seen the before MRI images and it was something that stopped me in my tracks.  The tumor that was there was as big as a peach.  IT WAS LARGE.  It took my breath away. I kept looking at the screen in disbelief that THAT was inside of me at one point. Then we talked about the process:

• I need to schedule the next appointment with the surgeon after I finish chemo.
• The surgeon will set up the post MRI
• Based on the MRI will depend on the type of surgery recommended
• Surgery will not be scheduled until one month after chemo (ONE FULL MONTH!!!)  That was NEW information and it takes me into DECEMBER for surgery. 
• I will need Radiation after surgery and it will take 6 weeks!!! This is a very long process.

At least now I know the process and I appreciate the surgeon.  I really lucked-up going to Williamsburg for the mammogram.  Happy about that. 

Medical Bill from Sentara Williamsburg

Called Anthem BCBS about the $5K bill from the hospital.  They said I need to give Sentara the claim numbers in order for them to get it right.  Called Sentara and was told that the bill is incorrect and the rep said she had sent an email to the supervisor who would call me in 72 hours. 

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.

Nutritionist

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.

7th and 8th Chemo Treatment, Cost of Health Insurance and Call from Health Insurance

7th Chemo Treatment

Well I forgot to post about the 7th Chemo Treatment and now the only thing I remember was that I got a call after it was over from the doctor's assistant to tell me that my Potassium level was low and that she was calling in a prescription for me to take to bring it up my Potassium levels.

I asked a lot of questions because I'm not completely trusting of her since my last doctor's appointment.

• I asked her why didn't the chemo nurse let me know that and she said these results don't come back until hours later.  
• I asked her if the Dr. was aware and in agreement with this and she said no because the Dr. was out of town (in Canada).  

I'm can tell that she's aware that I am questioning her too much...but...I need to be sure...it is my health.

So I drag myself out of the bed and and go to CVS to pick up the prescription that I have to take for a week. The pills are as big as horse pills.

Everything else from that visit seemed uneventful...but maybe this was the visit were a non-profit brought in sandwiches, drinks and chips  That was nice.

8th Chemo Treatment 

It was memorable.

When I got there, there was a new lady there who looked "rich".  You know how you can look at someone and know they've lived the good life (or at least a life with money available).  This lady looked like that.

She was older maybe 70 or so and by herself.  Although I knew she was not really by herself and that someone would eventually show up.  There as a distinguishing looking man with white hair "networking" on the other side of the room and he made his way over to the "rich" looking white woman.  That was her husband. 

The lady did not have a port she was getting her infusion thru her veins.  She was also getting personal kit glove treatment.  It seemed like her husband was a doctor because all the treating nurses knew him.  Doctors from the practice were coming up to him to greet him.

I found out after they left that he was a retired doctor and one of the founding members of the Oncology practice. 

It made me wonder why his wife did not have a port.

My Port 

It was not working properly.

The cancer nurse could get fluid in but could not get blood back out. She said it was because there was something blocking it like a flap of dried blood over the opening.

We tried different movements with my head, my arm, my neck to get it to work.  It worked for one vile of blood but then not for the 2nd vile so I had to get blood drawn from my arm.

It was not very painful...still made me wonder about the port and the need for it since the "rich" lady with the doctor husband did not have one.

Eventually I got my treatment but now the port area was hurting because of all the sticking and readjustments.

Lady with Blood Cancer

I started talking to the lady name Tracy sitting next to me and she told me she had a rare form of blood cancer and she would never be "cured" only could go in remission. She said that she had been going to treatment for one year and feels she's almost near the end based on the blood count that they measure.

As I was listening to her I thought...so it could be worse.

All cancers are not the same.

I'd seen her before.  She comes in 2 days a week for her infusions.  She's retired from the school system and husband is on disability because of neuropothy which is what I am getting from the chemo treatments.  The doctor told  me if it gets too bad to let her know and that after about 6 months after Chemo treatments it should go away.

Cost of Health Insurance 

I got the bill for the cost of health insurance.  When you are on short term disability you have to pay your portion of health insurance directly to the health care provider or YOU LOSE YOUR HEALTH INSURANCE WHILE GOING THOUGH CANCER TREATMENT.  It is madness.  My first bill came in at $1,100!  It is for two months since they bill a month in advance. But still...wow...wow...wow.

Call from Health Insurance

I got a phone call from the health insurance company.  They left me a voice mail that a nurse wanted to talk to me FROM THE HEALTH INSURANCE COMPANY.

I am simply fascinated at the health care system.  At this point they have paid almost $70K for my care and I guess they need to find out how I'm doing.  That is exactly what it was. 

The nurse asked me about my treatment plan, how I was handling the side-effects, what the side-effects were and then went over a litany of "services".

• I had access to a nutritionist for free, emotional support, financial planning support. 
• I decided that I needed to avail myself of something so they could check a box instead of declining all of it so I said a nutritionist would be great...which it couldn't hurt. 
• The nurse was happy to hear that and said she would have someone call me and then she would call me in a few weeks to see how things were going.  

I just sat there thinking about all the people who have "jobs" because of me and others getting cancer or some other critical illness.

Cure Cancer - Yeah Right!

I'm not kidding I think the title of my mini TED Talk is going to be  "Cancer Provides Jobs!" I just keep thinking about all the jobs in play to treat cancer. It's incredible.  I think of all the marches to cure cancer, but it is not cured after all these years. They should just say the truth - we have an idea of the things that cause cancer AND we know cancer pays SO we will not eliminate it because cancer pays.  I'm now wondering what happens to all the money raised for a cure for cancer.  It makes me think of when I worked for a Police Department and one of the officers used to say..."Crime Pays"...meaning without crime they would not have jobs...same thing here...

My Hands

I look down at my hands as I'm typing this blog post and I don't recognize them.  They look dark, wrinkled and old. I think it is because I'm washing them 10-20 times a day with dial antibacteria soap and it's too hoarse...but I don't want to get a disease.

I mean if I saw them I wouldn't know they are my hands.  I keep looking at them and wondering...hoping...praying...that I am being made anew/better and after chemo is over I will be restored/improved.  I'm wondering...hoping...praying I'm a better person, kinder and less cynical...yeah I know that's a tall order since this post was cynical!

August 12th 6th Chemo Treatment, Medical Bills, Doctors Appointment and Call From Nurse Navigator

6th Chemo Treatment 

My blood pressure was still high this week. Back to trying to figure out why "white coat syndrome" has roared it's head again.

Some new folks were in the pod, giving blood and getting infusions.

Some regulars were not there...I wondered why and where they were.

Medical Bills

Well, I finally decided I had to deal with the medical bills, go on line and look at the Anthem Statement of Benefits and give Anthem a call.  So far the bills add to $107,000.  Yep, you read that right.  I owed $7,700 of that with $3,300 due to Sentara Williamsburg for the biopsy...what???? Something that Anthem agreed to pay called a "facility fee".  Ridiculous.  How is it that you can not be able to afford to pay these medical bills even WITH insurance?  How can insurance agree to pay these outrageous amounts for medical services?  How can you get a service and not know the cost?  So many questions about the medical insurance industry.

So I wrote all the checks for the bills I had EXCEPT the $3,300 for the "facility fee".  I have to make some phone calls about that. Then I looked at all of my breast cancer "resources" to see if there was anything out there for medical bills help.  Yes, there is if you are considered in "poverty" and can't pay. Really how many middle class people have $3,300 around to give a hospital for a "facility fee" for a biopsy.

I am really appalled at this whole process.  ALL of the chemo "treatments"  needed based on "clinical trials"; the outrageous cost of these treatments and doctors visits.  It is all so ridiculous!  It feels like a crime actually.  I'm looking at this thinking is it ALL ABOUT THE MONEY? They know they got you because the alternative is that you die.  So what are you going to do?  Go through this long  process of weekly treatments, being out of work, sicker than you should have to be...and this is going to go on for MONTHS.

It's sort of unbelievable that this has become acceptable...it is not acceptable.  All I keep thinking is the reason it continues is because if you survive the process and can return to your "normal" life you try your best to FORGET this and you move on...nothing changes with the process...NEXT Cancer Patient...I need to challenge myself not to FORGET and do something...at a minimum to release my blog posts documenting this process.

Doctor's Appointment

The oncologist wants to see me every three weeks.

I'm still going through this process of doing everything they are asking me to do...I want to see exactly what the process is and document the experience.

I get to my appointment 15 minutes early.  I wait 30 minutes.  An elderly (80-90 yrs old) lady came in, checked in and told the receptionist that she did not feel well and wanted to see the doctor right away.  Her doctor was my doctor.  10 minutes later they called the elderly lady back. 10 more minutes they call me back and the doctor's nurse comes in and asks if it's okay for her to see me because the doctor was running behind. What do you say to that?  I say "yes, okay", but I'm thinking "no, but what choice do I have?".  

She goes through all of the questions about side effects.  Then I tell her that the tumor had almost gone away, I couldn't really feel it anymore. She examines me and agrees.  This doesn't seem to really matter though. I ask her about the second round of the new drugs which weren't on my schedule. (When you start the process they give you a calendar of Chemo appointments.)  She's not sure of that and starts reading the doctor's notes...this takes  a while and she says yes she thinks I have to go though that round too.

Then I ask her what determines if I'll need radiation and she says oh, it depends on the surgery results but then asked if I wanted to see a radiologist.  I look at her like she is crazy and say "no I don't".  Who in their right mind would WANT to see ANOTHER doctor and to prolong this madness.  I was just trying to find out the process.

Then I realize that I will choose not to agree to meet with her again if  I can help it. I liked her, but I don't have time for paying for a service  AND feeling like someone doesn't have the answers.

I made another 3 week appointment.  The appointment person asked if I wanted to meet with the doctor's assistant again.  I say "No. I would like to see the doctor".

Nurse Navigator:

She called and left a message for me to call her back when I got her message. It seems to me this is just one more thing in this process that you have to do. I get the feeling she has a list of breast cancer women to call/keep track of and she is going down her list and touching base with "xyz" on a monthly basis.

I'm thinking down the road this might be helpful.  I'm thinking maybe people who need lots of support need this but it's stressful to me to have to call someone back AS SOON AS I GET THE MESSAGE.  Who has time for this? I don't see the point of this person in the process. She is a nice and helpful person...but I'm too much of a practical person for this...but I call back because I am going through the entire process (not without questioning it, but I'm doing what is asked of me).

Another week down is how I feel...then I think someone will read this years from now who is going though cancer and it will help them.  I hope so because it is liking walking in a dark dank tunnel and everyone is telling you that you are going to be okay...but you don't see any light anywhere...hopeful this is a little flashlight of information.