January 29, 2020

January 2020 - Radiation

Radiology Marking Session


Meet with Dr. Amin again and he again was amazing. Walked in and was happy that I had had a complete response to chemo and no positive lymph nodes.  He was as happy as if a family member had gotten that result.  It was genuine and interesting because that happens to be Riverside's logo: "To care for others as we would care for those we love."  He was a living example of that.

He told me that because of my results from chemo and surgery that I would only have to have treatment for 4 weeks and not 6 weeks...so only 21 days.  I CAN DO THIS!

His nurse was EXCELLENT. Friendly, happy, smiling just so pleasant that it reversed my "can't find parking for 10 minutes" horrible experience.

January 7, 2020

December 2019 Post Op Surgery Appt

Post Op Appointment

I had an appointment with the surgeon as a post follow up to surgery. When Dr. Times walked in the room he said: "I understand that you already have the good news."  I told him that I had because the oncologist had told me that all the cancer was gone prior to surgery and that only scar tissue remained. The surgeon also confirmed that no lymph nodes were involved.

This was all great news. The best!

I thanked him and told him he was awesome.  He asked me to let the oncologist know the he thought she was awesome because her regiment of drugs had successfully killed the cancer. I told him that I will and I will! I'm so grateful to both of them...so grateful!

He examined me and we talked about the scar and soreness that I still felt in my arm and chest. He said it will eventually go away. I asked him about the documentation that I needed to return to work and they provided it.

December 2019 Oncology Appointment - Pathologic Complete Response

Appt With The Doctor


Finally I had an appointment with the doctor. My last several appointments have been with the nurse. Doctor Tian is great!  So glad she is my doctor. She did not have the pathology results yet from the surgery so we talked about next steps if there was remaining cancer found during surgery. I would have to take pills for a couple of months.  If there was no remaining cancer found I would not need to take the pills.

The Port Removal


I asked her why I needed to leave the port in and when I could get it out and she said because she needed to see the pathology report and because if my cancer is coming back it is coming back in two years. She "recommends" leaving it in for 2 years!  I told her that is NOT preferable but we will take it one steps at a time depending on the results.  Until removal I'll have to get the port flushed every 6 weeks...good grief!

Friday, December 13th Day of Surgery

My Day of Surgery Is Finally Here

This is the day I have been trying to get to for 7 months! 

Preparations


The night before you have to take a shower with Dial Antibacterial Soap, not eat anything after 12 and sleep on clean sheets. The next morning you have to take another shower with the Dial soap...and then you  are ready.

Pre-Op Procedures


Pre-op was PAINFUL! The first nurse had a hard time finding a vein for the IV. Painful!  She couldn't figure it out and decided to wait until I came back from the Women's Unit.

Before the lumpectomy they wheeled me half-way across the hospital (in a wheel chair - in a hospital gown) to the Women's Unit to:

1. Have them do a "Sentinel Node Mapping" by putting 4 needles in my nipple of dye that would travel to the 2-3 lymph nodes the surgeon needed to remove in order to check to make sure the cancer had not spread beyond the breast. It was PAINFUL! 


2. Have them do a "ultrasound-guided wire localization" by putting 2 wires (metal looking wires)  in my breast tissue to put a frame around the mass that the surgeon had to remove. The nipple needles were painful but the wires were TORTURE!  They were using an ultrasound to figure out where to put the needles and couldn't quite see where it should go so it was a lot of back and forth. The doctor doing it kept apologizing. He was a nice man doing a painful procedure.

It was helpful that I knew the ladies from the Women's Unit.  They were the same ones who did my mammogram, ultrasound and biopsy back in May. I was happy too see them and again they had done this hundreds of times so knew it was painful.  One of them gave me her hand to squeeze to blunt the pain for those two procedures (as she does this and I'm squeezing her hand I think about creating something to sell to the hospitals like a stress ball) ...then they tell me...

November 2019 Getting a Cold, Fainting,Emergency Room

Getting A Cold


The Sunday before Thanksgiving I got a cold.  As the week went on it turned into a bad cold.  I was congested and coughing day and night.  I had already decided not to go to Atlanta for Thanksgiving and THANK THE ALMIGHTY GOD that I did. I was very sick and weak.  In the bed and not moving much. I had decided to try Whole Foods for Thanksgiving Dinner.  I was exhausted when I picked the meal up.  I had NO desire to eat any of it...let alone warm it up...and I didn't.  Thanksgiving came and went and David brought me a plate which helped bring me back to life.  It was memorable.

David decided to go out of town for the weekend and I just prayed I would survive.  I mean I was thinking is it possible to survive Chemo and then die from a  cold? That would be tragic.

Fainting in the Grocery Store


Sunday after Thanksgiving and I needed to pick up a few things from the grocery store...like cough medicine and more tissues.  I had about 10 items on my list.  I had on leggings, a black t-shirt, felt hat (no wig) and grey hoodie.  I had the hoodie on over the hat going in the store and just decided to keep the hoodie on while I shopped.

As I was going around the store I noticed how tired I was.  I was leaning on the cart.  Not really pushing it but leaning and pushing. I got up to the check out line and was exhausted.  I remember taking one thing out of the cart and then the cashier helped take everything else out.  I was grateful.  Then I watched as he started to scan the items.  I felt like he was moving in slow motion. I was thinking OMG I'm not going to make it. I took out my store card and the money I thought it was going to cost and put it on the counter. All of a sudden I got SO hot.  It was the same type of hot that I felt during the MRI the week before.  I took off the hoodie and put it and my purse on the empty counter. I remember thinking I need to put my head down.  So I put my head on my purse...

...the next thing I heard was "Ma'am, Ma'am are you alright?"  I was on the floor. I had fainted.  All I thought was "Oh Boy! This is bad!" She called 911 but in the meantime there were some fire department guys shopping and they came up to check me out. I looked up at the manager who I knew because I went to that store often and she was asking me if I was alright and telling me that I had fainted. I told her I was alright.  She said she couldn't let me drive like this and needed to call 911.

November 2019 Neulasta, Disability, MRI, Surgeon from Heaven

Neulasta


This time the Neulasta half dose put me down like the full dose.  I was in the bed again for two days almost unable to move. Too painful to remember how painful....just remember it was shocking to be so sick.

Disability Paperwork


After Chemo ended Short Term Disability has been a bear.   They only approve it from doctor appointment to doctor appointment.  Then you have to call and get an extension and send in medical records.  Also got an email from Leave Administration and from the Insurance company about Long Term Disability and that seemed like even more red-tape. I have to get back to work before January 25th or it will go into LTD.  Pray. I still wonder how guys in the yard get through all these deadlines and paperwork.  There definitely needs to be more help....a coach....to assist employees through this process. It's hard to do all of this while you are sick.

Surviving the MRI


I had the follow-up MRI.  I remembered that I had to stay completely still for thirty minutes and that hadn't been a problem for me.  When I got in the tube my nose was running and I couldn't do anything about it but watch it drip in the tube.  I was doing pretty good but all of a sudden I started to get HOT.  I mean deathly hot. I thought I was going to pass out.  I finally said something and they stopped the machine, came in the room and started taking the blanket off of me, my hospital socks, lifted up my gown from my back and ran a fan to cool me off. I was sweating profusely.  I felt better and we continued but it was scary.

November 2019 Last Chemo Treatment and Ringing the Bell

Doctors Appointment

This was my last oncologist appointment for a while...a month.  I saw the nurse practitioner again and we talked the chemo side effects.  I still had the mouth sores and sore throat for days.  Also a new side effect spots on my hands and over my body.  I don't recognize my palms. The neuropothy in my feet go from getting better to "why won't it just go away".  

We talked about surgery and getting the port taken out at surgery.  Apparently the oncologist gets a say in IF the port can be removed during surgery or if they think it needs to stay in, Their office will look at the MRI and advise.  That was a shocker.  I just assumed...still I'll continue to believe things will go as planned in my head until further notice.

Radiology Appointment


I had a consultation with a radiologist.  I have to have radiology if I get a lumpectomy. Okay great. The radiologist was SMART.  He gave me the rundown on my cancer, tests, chemo drugs, surgery WITHOUT looking at notes.  He'd studied the notes and remembered them.  Impressive!

He told me that it would be EVERYDAY for 4-6 weeks depending on the results of the pathology report. EVERYDAY...but it would only take 10-15 minutes and I wouldn't get sick like with Chemo. Maybe I'll be tired but not sick. Okay. This seems like the last step in the process and then it is just check-ups. We will see. 

Last Chemo Treatment & Ringing the Bell


Getting to the LAST Chemo treatment was a PROCESS. It started in July the Summer and ended in  November in the Fall.

Before this session I gave a lot of thought about the gift I would give my Chemo nurse.  She and I talked about "eventually" she was going to retire.  I found her a Nurse retirement cup on Amazon. It's something I thought she would appreciate.

My son went to this last session with me.  I really appreciated his support. When you are used to doing things yourself it's powerful to learn who loves you.  Love is about moments.  Being there when the moments count.  I told my son he was a great son. 

October 2019 3rd AC Chemo Treatment, Neulasta and Estate Documents

3rd AC Chemo Treatment


Another chemo treatment down. The chemo room was almost empty when I got there. That was a first. The lady who is a crafter was happy to see me. She had made some snack holder and wanted to show them to me. Other than talking to Loretta it was uneventful.

This is the next to last Chemo treatment so my nurse Brenda talked to me about ringing the bell the next time I come and what to expect. I'll ring the bell, they will take my phone to take video and a picture, I can invite others, I will get a certificate. That is interesting to me.  I wonder who came up with ringing the bell as the way to end this part of the Cancer Process.

Getting AC is not bad it is the after effects that's a bear and is wreaking havoc on my body.  This level of tired is beyond anything a human should endure. It is so bad if I walk (slowly) upstairs to get something I have to lay on the bed to rest before I go back downstairs. Since being on AC I've walked around the block once and had to rest on the benches to make it around.  I haven't walk around again because I don't want to pass out.  The exhaustion is real.


Neulasta Shot and After Effects


Well, I thought after the last shot verses the patch that I had found a way not to be balled up in pain...not so.

Somehow after this Neulasta shot I was in the same level of muscle pain as the patch.  I thought I was going to be okay until Thursday afternoon and my muscles ached and locked up. I was in a ball for two days again!  My nurse also told me even after my last chemo shot that I should get the Neulasta shot so I don't get sick.

O-k-a-y, so one more shot of this ridiculous drug.  It is on my list to research it  later.  I can't do it now because I'm not trying to buck the "system".  I'm afraid what I'm going to find is that some company came up this way of keeping the chemo shots on schedule (OR MONEY COMING ON A ROUTINE BASIS) for this cancer treatment "system"....however it literally incapacitates those taking it.  NEULASTA IS WORSE THAN CHEMO! 


There is one cancer treatment lady I met early on name Marie.  She has the same type of breast cancer that I have and going through the same treatment plan. She wasn't there so I got concerned. I texted her to check on her and she said her white blood cell count was too low for Chemo mostly BECAUSE her insurance company did not approve the Neulasta.  Okay...deep. Again this Neulasta keeps the money flowing into the system and I don't think its necessary but will delay treatments like it did Marie.  I mean delaying treatments by MONTHS because instead of getting a chemo shot every other week it would getting  a hit monthly.  Again...I'll research this AFTER this is all over.

January 6, 2020

October 2019 2nd AC Chemo Treatment,Costs and Politics

Follow-up to 1st AC Treatment and Neulasta


Before I can write about the 2nd AC Chemo treatment I need to talk about the Neulasta patch.  I'll have to some research on Neulasta because it is WORST than chemo. The next morning after the patch activated I could hardly move.  

I could hardly get out of bed.  Every muscle in the core of my body hurt.  If I moved it hurt. The next day about the same, it hurt to move.  Between the Chemo, Neulasta, Nausea medication it was a two week hell ride. I learned that not all Chemo drugs are the same. 

Doctor's Appointment


So, you have to go to a doctor's appointment between treatments.

The doctor was unavailable so I saw the nurse and went though the process of explaining how things were going. It feels like a check the box type of thing, but I am focusing on being kind during this process.  Just be kind and be aware of how difficult that can be at times.  Just go and be kind to everyone you meet that is my mantra.

A Day In The Life of A Cancer "Treatment" Patient

Waking Up

...is a challenge.

5:30 a.m.
Wake up and say good bye to my son and tell him I love him as he goes off to work. That might be the last words he hears from me so I try to sound as upbeat as I possibly can.  I don't know what the day will bring.

Now that I'm up I remember my body hurts.

I remember I don't have anywhere to go.  I remember I don't WANT to go anywhere...but I'm up.

Alive.

I just lay there and think about getting up, dressed and heading off to work.  Something I've done for over 30 years and I figured out the other day that I've had 18 different jobs.  Sitting there WANTING to do that.  Good grief, never thought I'd WANT to be able to go to work, but now I do.

That's not my world now...

...so I get on my phone to see what's happening in the world.

I'm just trying to make sure no major/crazy issues are happening in the world that would leave me in limbo during cancer treatment. That's a fear....I'm half-way through Chemo I need to finish that, have surgery and radiation. If the world can just keep it's sh*t together that long.

Aside...
Cursing - I used to curse like a sailor in my 20's and 30's.  I abruptly stopped once I heard my son curse when he was in his teens. Now after going through this sh*t; I'm cursing in my head all the time.  It's so insane going through this...please someone who is/has gone through this and has NOT cursed in their head reach out to me because I'd like to meet you. You don't exist...this sh*t is crazy.

7:00 a.m.
I can still be on the phone just seeing what's happening. I run across an article about the police chief where I used to work is retiring at the end of the year for 2 months then coming back for 6 more months to get them thru the Republican National Convention.  I think back on working the Democratic National Convention...great times and I need to write an article about that experience...  Then I go back to thinking about what the Chief is trying to do and HOPING that:
  1. I'm alive long enough to receive my Charlotte pension, and 
  2. The pension fund in NC isn't bankrupt by the time I get it.

8:00 a.m.
Think about getting up but it takes so much energy, so I decide to stay in bed and do some bible study.

I'm up to Joshua Chapter 18.  I have to have three bibles to really understand any of this and one of the bibles is the Good News Bible...which has pictures.

All I keep thinking as I'm reading the bible from Genesis to Revelations (including the Apocrypha -hidden books) that IF GOD WANTED ME DEAD I'D BE DEAD.

I stayed in the book of Numbers for a very long time...so long, so long... because when I got to Chapter 16 I was dumbfounded. It is about the rebellion of Korah, Dathan and Abiram. God opened up the earth and the men, their families, and animals went into the earth alive. Instantly God killed them. I just kept reading that chapter over and over again. It was no joke.


I can do about 30 minutes to 1 hour of bible study and then I want to fall back to sleep. It's heavy material.

9:00 a.m.
I have to get up.

I take a shower and the hot water feels good on all the pain spots over my body. Physically taking a shower takes A LOT of energy.

After I take a shower I have to get back in bed to rest for 10 minutes BEFORE I can wash my face and brush my teeth. I don't have enough energy to continue to stand up.

I make it though that and then have to do my saltwater baking soda gargle or I will get mouth sores. I do that and then put on Oil of Olay on my face.  My eyebrows are almost gone now. My eyes look like my mom's when she was sick.  I could always tell when she was sick or getting sick by her eyes.  My eyes look like that now. No life.  Dead. Bloodshot. I get over that I'm looking at myself and I look like my sick mother then I put on chap stick all over my lips or they will crack.

Almost done.

I put on my underclothes and then lotion my entire body because my skin feels and looks like leather. I don't recognize my hands and feet. Oh my poor feet.

11:00 a.m.
Somehow its 11:00 I don't know how that happened.

I put on some clothes - Shorts and a black t-shirt.

The phone rings. Crank call.

I'm hungry but don't want to eat.  My chest hurts. I go get water.  Just stay hydrated that's the best I can do. Then no, I need to eat something.  Grapes, yogurt and nuts is all I can manage to eat.

I get back on line and read about a lady who "battled" breast cancer and has died of the "complications of cancer". Her name was Wendy Chioji.

I just keep thinking once you think you've "beat" cancer you don't.  It comes back with a vengeance. You're just buying time. Then I look out the window.  The wind is blowing.  It looks like it's going to rain.


12:30 p.m.
I go downstairs to get on line on the laptop to see what checks have cleared the bank. Still wondering the easiest way to get money from the VA credit union to the NC Credit union so I can actually make money on the money sitting around in a little to no interest account. I don't feel like dealing with that today.

I turn on NPR and listen to them talk about stuff.

Half the day is gone. I'm just grateful I'm up and can get out of bed today.  

I'm grateful I'm not getting Chemo today. This sh*t is hard. Ridiculously hard. I'm hungry again but don't want to eat.

October 2019 Chest CT Scan, Chemo #1 of AC and Other Thoughts

Chest CT Scan


Had a CT Scan because the Oncologist saw a tiny spec of something in my lungs during the 1st Scan back in June. She wasn't very concerned with it because she said we have to take care of the Breast Cancer first.

She didn't think what she was seeing was lung "cancer" but if it was she said the chemo drugs I was on for breast cancer was used for lung cancer so he would go away in theory.

 I can remember when she told me she found something in my lungs and I couldn't look at her as she was telling me about it.  My dad died of lung cancer.  I couldn't handle it.

I told her that back in the 1980's I was diagnosed with this mysterious thing called Sarcodosis.  I never had any effects of it.  Sometimes it would show up on Chest XRay's but hadn't in the last 20 years so I forgot all about it.

I still think of it as  fluke or something.

The Oncologist said, that yes it could be sarcoid but she wouldn't know for sure unless we did a biopsy. She said at that time in June we would just watch it and see what happened.  So after the end of the 1st round of Chemo drugs she ordered a followed-up with a CT Chest scan.

So I had an appointment with the oncologist so she could give me the results of the CT Scan and we could talk about the next round of Chemo drugs.

Going into the doctor's appointment I really didn't know what "the best" results could be. If the spot in the lungs was gone then that meant it probably was cancer...and had it spread from the breast lump or just a new cancer location.

If it was still there what would that mean?  So I went into the appointment just asking for the best results whatever they could be. 

At the appointment the Oncologist walked into the room, we said hello and hugged.  Then she handed me the CT scan results and said we got "the best" results.  The tiny spot is still there in the lung but it's more than likely not cancer.

It is the same size it was during the 1st scan so it has shrunk or grown which indicates to her its not cancer. If it were cancer it would have grown in the three months or it would have shrunk/disappeared from the Chemo for three months but it did neither.

She said yes it could be the sarcoid but we would need a biopsy for that and for now we are going to deal with the breast cancer and continue to watch what happens to the spot. Also on the results of the CT Scan was they did not see any portion of the breast cancer mass!  The report actually said that it could have been surgically removed...that's how much nothing was showing up on the scan.

All "the best" possible results.  We talked about the next round of Chemo drugs and how bad it "could" get...not that it had too but it could.  Then I thanked her and tears welled up in my eyes.  I couldn't ask for a better doctor.  I trust her and that is not typically of me and the medical professionals.

Chemo#1 of AC


Next day new Chemo drugs started.

It was great to see all the nurse oncologist and I saw some of the other Chemo patients that I hadn't seen in a few weeks.  That was great!  My son went with me to this appointment because I didn't know how I would react to the new drugs. So it started with the pre-meds which lasted about 45 minutes THEN I got the strong Red Chemo that lasted 15 minutes than the C drug for 1.5 hours.  It was finished in 2 hours which wasn't bad. I instantly felt that impact since I hadn't had Chemo drugs in 3 weeks.

Then it was something new...Neulasta a patch that goes on your arm or stomach, keep it on for 28 hours and in 27 hours it pumps medicine in my body to help increase your white blood cells so you and keep on track for Chemo sessions.

By the time I got home it was instant tired, go to sleep.  The neuropothy in my feet is still there but has gotten a little better.  I was so tired my feet didn't even keep me up, but it was a bad nightSweats, having to drink water throughout the night, feeling like I wanted to throw up but didn't....OH NO!!!  My only grace is this is only for 8 weeks and it's only 4 hits as I now call these Chemo sessions.

I got a call from the nurse navigator  the next morning which was timely!

I asked her questions to make sure I understood the process. She gave me the same information the nurse oncologist gave me about Neulasta and how to deal with nausea and take the medicine.

We also talked about the process AFTER chemo is FINALLY done.  She recommended to have the Oncologist make the appointment for the MRI then make an appointment with the surgeon in 5 days.  He will have MRI results by then and will determine the type of surgery.

From what she can tell from the Chemo results she said I'm a candidate for Lumpectomy which is in/out patient surgery and recovery is 2-4 weeks. I can see the light at the end of the tunnel.

Other Thoughts


Medical Bills

I'm still dealing with the $5,100 bill from Sentara Williamsburg for a Biopsy back in May 2019.  The insurance company says I should owe $3,500. Finally able to get Sentara to research this and they agree something is wrong and they have put the bill on hold and asked me not to pay until they research it.  I'm already at the $10,000 maximum out of pocket max...so no more medical bills for me until July 1, 2020!

All of this has made me want to learn more about Health Insurance. I've done a little research and it is interesting.  Actually becoming an insurance agent in VA is easy entrance...study, pass the test, find a broker...it is similar to becoming a real estate agent.

What Can You Do For Someone Going Through Cancer Treatment?


  1. ASK QUESTIONS ABOUT THEM - this seems simple but it's goes a long way.  I can't tell you how appreciative I've been for my weekly text messages of people asking me how I've been doing. 
  2. DO NOT send a text or a call or a visit and you talk about yourself, normal/everyday stuff and ignore what the cancer patient is going through.  This is NOT helpful when this person is more than likely experiencing side-effects and their life has been tossed out of kilter.  Even asking about their cancer, chemo and trying to understand is helpful because that person can talk about it and feel like someone cares.  
  3. DO NOT talk about what you know about chemo and the experience because SOMEONE ELSE who had it told you about it. If it is YOUR cancer experience that is okay to share but second hand experience...don't focus on that.  Everybody's experience is different...just listen and ask thoughtful questions about THAT person who you are listening to.

Cancer Walks and Support

I've been thinking about these annual walks and wondering exactly what they accomplish, how they help cancer patients, and where the money goes?  They don't help defray the cost of treating cancer it seems, maybe it goes into the clinical trials that I keep hearing about?  I just don't know the purpose and I'm hopeful that I'm wrong and they are doing good work.


January 4, 2020

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.

August 3 - Sitting in The House. Sitting in a Room.


It has dawned on me that I have sat in the house and in a room more than I've ever sat in my memory.

Times I remember sitting before:
1.  Sitting at my childhood home looking out the upstairs window at the world going by wondering why I wasn't having fun and it seemed everyone else was.
2. Sitting in my dorm room at VCU window looking at this guys room wondering who was in there with him and hoping he saw me sitting in the window.
3. Sitting in my home office working on papers for grad school while looking at my neighbors in the pool having a good time. Wondering why I was torturing myself trying to get another degree.
4.  Sitting as I was making art/crafts enjoying the process of creating something new.

Sitting now and wondering what the heck is life really all about.  I know what it's NOT about:
1. Shopping - for what?  Stuff? It has no appeal to me anymore.
2. Eating out - There is some fun in that but not as much as before.
3. The Shop - Normally I would be busy at the shop today, running around, doing stuff that seemed important but didn't really amount to much as just same ole', same ole'
4. Stressing about work related issues - That seems senseless to me now.  What was I stressing about?  I can't even remember anymore. One day I won't be active in the work world.  I need to always remember that.
5.  Finances - I haven't had that as a major worry lately but even now looking at the medical bills and wondering how much money will come in while on short term disability seems like "oh okay" this will pass, why worry about it?
6. Misery - I just got back from the fishing pier where I was sitting, looking out at the water, listening to crabbers and fishermen and thinking why not just be joyful?  Why continue to dwell in misery?  This has been apparent to me that I haven't gone a day that I haven't been upset about something stupid.  It makes no sense to me.  I'm focusing now on joy and what that really means.

So I'm thinking life is about finding and keeping joy.  
I'm not sure how to do it but I'm going to focus on that.  
Finding and Keeping Joy.  

July 2019 - 5th Chemo Session, Port Pain and Tidying Up

July 30, 2019 - Almost half way there with this round of drugs.

Do You Want To Pay on Your Bill? 

When I registered they asked me if I wanted to "pay on" my bill.  I haven't seen any real bills from them other than looking at the bills coming though from BCBS.  I told them "no"  I did not.

I've decided I would wait until August to deal with the medical bills:
  • I will call BCBS and go through all of them from last plan year which ended June 30th, pay those which shouldn't be more than  the $5,000 which is the max out of pocket.  
  • Then I will deal with those bills starting July 1st which should be no more than another $5,000 which is the max out of pocket. 
  • Ideally this should not cost me more than $10,000.  Last time I looked at BCBS website the total billed was up to $93,000.  Ridiculous!  That's another entire blog post. The cost of treating cancer.

Blood Pressure Check - Still Have White Coat

Started out with a high blood pressure reading mostly because of white coat syndrome and the lady who was taking my blood pressure was talking toooooo much.

My blood counts were hanging in there so we went through the pre-drugs and one Chemo drug.

The Regulars

Some of the regulars were there getting treatment:
  • The 33 year old with the three kids who seems like she is fully embracing this.
  • The lady who had a birthday party last week who is on maintenance drugs. She has a lot of friends and support. 
  • The one lady who wears a ball cap (she rang the bell...meaning she' done with Chemo).
  • The lady and her husband who when she's not looking he is looking super stressed about the situation.

Port Pain

I was having problems all week with my port hurting.  I told my nurse and she did a couple of checks, checked with the oncologist and they said they would watch it and see how it is next week.  Otherwise she said we would have to do an ultrasound and she didn't want to put me through that cost because from what she could tell it looked okay.

She was worried at first that it could have been a blood clot but from her test/touching/feeling she didn't think it was.  I think I know what it was.  My normal nurse did not do the final cleaning out the port the last time and a new nurse helped me but I just didn't think she knew what she was doing. Now the port area does not hurt at all. Thank God for my treatment nurse, she is the best best best I could ask for.

Wasp Sting


Half way through the treatment; the mother of one of the patients was stung by a wasp.  It flew into her chest.  It was bizarre!  She got bit so the nurse came over and put some alcohol on it.  I hope she's going to be okay.  They are such a nice family.  They seem like a close and happy family.  I like talking to them.

Black Folder Updates and Cleaning up

I still haven't updated my black folder.  It seems a lot harder since the cancer diagnosis.  I  don't know why. There seems to now be sooooo much to do:
1. New letter to David
2. Update Will (it's more than 10 years old)
3. Close out all these old website accounts
4. The Shop records
....so much ...
I've decided to start by going though the Marie Kondo method of tidying up.  Basically I'm discarding
a bunch of JUNK.  The method is to ask yourself "Does it bring you joy?"  So much stuff that did not bring my any joy in my space.  I figure this is the time to do it while I'm out of work for a while.  Actually this feels great. Once I can get everything here and the shop cleaned up...I'll update my Black Folder.

I will remember how I DON'T want to update the Black Folder and have compassion when others don't want to deal with it either...but deal with it we must.

Peace,
Ridea


"Don't Even Call It Cancer Ma"

On This Day July  26, 2019 


That's what my son said to me.

I was talking about going through the process of having cancer, the cancer treatment and losing my hair. He said: "But you're beating it Ma, don't even call it cancer, call it something else."  I thought about it for a minute and thought "ancer" not "cancer".

Honestly if I get my head right it could be the "answer" to a renewed life.  

A bump in the road that requires downtime and self reflection. 

After being off work for two weeks I know:
  1. I'm use to being busy everyday and all day
  2. I don't like down time 
  3. I have to keep busy
  4. Lying in bed too long gives me a headache
  5. I'm still waking up at 5 a.m. so it's not a shocker when I go back to work
  6. Retirement at 59 1/2 seems stupid to me now
  7. You have to have a game plan to be productive for yourself
  8. You could stay on line half the day if you're not careful
  9. There is so much to do around the house
  10. I still hate television, even Net Flicks
  11. Shopping seems senseless and a waste of time and money
  12. Time is precious
  13. People matter
  14. Life without people is lonely
  15. 2:30 p.m. is like a magical hour because that's when my son comes home and we talk
  16. My son loves me
  17. Not everybody will be there for you when you need them
  18. Life goes on 
  19. A house is not a home
  20. Junk stifles you
  21. Work is a distraction
  22. I'm happy for a break in the routine
  23. Health is the first wealth
  24. The Old Testament Bible is brutal but interesting
  25. I have more clothes than I ever would wear
  26. The amount of stuff I have is ridiculous
  27. Meditation has paid off for me
  28. I need to make good use of this down time
  29. Staying germ free means alot of hand washing
  30. Wearing a wig gives me a headache
  31. I never lived in the house before, it was go-go-go, sleep, get dressed, eat out
  32. I've talked to my son more in the last two months than in the three years since I've been home
  33. I've lived my life like a business - striving, planning, doing, going - and what has it gotten me?
  34. Life is not about tomorrow it's about right now
  35. There might not be a tomorrow for real
  36. You have to live like you're dying tomorrow and make the best of today
  37. There is an ultimate power that is in control, believe it
  38. You are not in control of circumstances, be okay with it
  39. Cancer is a disease that can kill you but doesn't have to
  40. Cancer is a wake up call about life and living and love
  41. I'm thankful that I have another day to soften my heart, mind, eyes and outlook on life...not be so hard on myself and others...people are doing the best they can
  42. Other people are lost in the matrix
  43. I was lost in the matrix
  44. There is a matrix
  45. There is an end to every life
  46. I like blogging
  47. Chemo can kill the tumor and all the other junk inside my body and mind
  48. I'm thankful that Chemo is working and the tumor is almost gone now
  49. It has been a struggle just not to be angry about something everyday (I've been surprised about that)
  50. I still think holding the "play-away" electronic books in my bra where the tumor grew was the reason I got cancer
  51. Sitting in the house is not that bad, embrace it
  52. Throwing away unnecessary stuff is a great thing
  53. I haven't cooked in so long that most of my spices are old
  54. Life is not about stuff but love
  55. Listen to people, really listen to them
  56. Remember those who texted me even when they didn't have to...never forget

So, how do I make this time the answer for the rest of my life?

I'll keep on Marie Kondo"ing" each room, reading the entire bible, learning to really cook, blogging and most importantly asking to know God's Name and yielding to the plan for my life. 

July 2019 - Oncologist Appt, Wig and 4th Chemo Treatment

Embracing the Suck 


Now that I am "hooked" into the medical "system" I've decided to embrace it.  Meaning I will follow-up with all the appointments I've been asked to go to.  Typically I would not do this because I've felt it is unnecessarily giving the medical "system" money.  But...no just go through the process is what I'm thinking. Embrace the Suck!

Follow-up with Oncologist - 7-19-19


I made and went to my follow-up appointment with the Oncologist.  I had to go to another office - Hampton Office versus Port Warwick Office.  Immediately I saw the difference.  It was just different.  Didn't feel as upscale.  I guess that is what I would say.  It was smaller.

Met with the doctor and she said I looked great.  Somehow that shocked me...I still had my hair but it was basically just sitting on my head at that point.  If I put my hand through it my hair would come out, so I didn't do that.  I could just sit there and pull my hair out in chunks, but I decided to just keep the hair sitting dead on the top of my head as long as I could.

The doctor and I talked about that the tumor was shrinking considerably.

She examined me and agreed that the treatments were working.  She let me know that the treatment plan could change based upon how my body handled them.  She also told me that maybe 4% of folks get sick/hospitalized because of low white blood count.  It was serious but not many folks end up hospitalized. She told me her and nurse Brenda where in constant contact about my care and all will be fine.  I believed her.  We hugged each other. She told me to make an appointment in three weeks.  I did before I left her office.

Buying a Wig


I left the doctors office and went to the wig shop.  I had brought a wig about a month ago and didn't really like it.  It was human hair but I just didn't like it.  I went to another wig shop and found three wigs that I liked.  They were synthetic hair so basically just put it on and go...and they were half the price of the natural hair wigs...only $30 each and I got a discount because I brought more than one.  I walked out of the wig shop and put one on and then went out to lunch with a friend.

4th Chemo Treatment - 7-23-19


My son went with me to this appointment because it was the longer day with more drugs.
Breast Cancer Treatment for "Trible Negative" is 4 cycle of 3 weeks = 12 weeks.  Week 1 of the  cycle is the long day with 2 chemo drugs and many pre-drugs. Weeks 2 and 3 is only 1 chemo drug and less pre-drugs.

I wasn't sure I would be given the treatment this week because last week my white blood cells were too low for the treatment but the doctor wanted me to go ahead with it and skip this week if the counts were still too low.

When we get to the treatment center it was packed...only one seat left and we had to look for a side chair for my son. I just kept thinking about ALL THE MONEY sitting here in these lazy boy chairs.

After buying the wig I started pulling and cutting my hair out, so now I had to wear something on my head, so I wore my wig to the treatment.

My treatment nurse, Brenda told me she liked my wig and then got me all hooked up and took my blood.  She came back with the results and my counts all came up so the treatment was on. She gave me the Benadryl which I knew would knock me out, and it did. Then the pre-drugs started. Then the 2 chemo drugs. A process. With each Chemo drug she would ask me to tell her if I felt any different.  I didn't have any effects except I was sleepy.

Some of the same folks from last week were there and there was few new people. Somehow it is the same type of look on people's face.  Trying to make the best of it.  Trying to smile when you want to cry.  Far away stares every now and again.  Sleepy eyes. It's almost like you know you are here, but can't believe you are here.  You want it to end, but know it will end when it ends.

Ringing A Bell


A bell rang and the nurse announced...this is the last chemo treatment. Everyone looked up and clapped for the person standing near the bell.  There is an end!!! Hearing that bell ring is the end of part of the process! It reminded me of where I work there is a bell that people ring when they are walking out the door for retirement. As I sit here out of work I think about ringing bells.  Why do people ring a bell to make an end to something?  I feel like maybe there is something to that.  Should we ring our own bell everyday.  Ring a bell that you are alive. Ring a bell that you've survived.  Ring a bell to wake the hell up.  I mean really...ring a bell...


July 2019 3rd Chemo Treatment and Tumor Shrinking

...and the beat goes on...

July 16, 2019 3rd Chemo Treatment

Arrived at the "treatment center" and realized that I forgot to put on the numbing cream over the port site where they stick you with the needle.  Fortunately it wasn't too bad just like a needle prick but it hurt some during the infusion.

It took larger to get back the blood test and that was because my white blood cell count was too low, or lower than it should have been for the infusion BUT the oncologist wanted me to go through with it since it was day 3 of the 4 day cycle.

I told the nurse I needed to discuss this because my goal is to STAY OUT OF THE HOSPITAL with an infection, pneumonia, etc.  She told me it was better to go through this cycle and delay the start of the beginning of cycle 2.  That didn't sound good either.

Basically how this thing works is you get a treatment plan upfront based on clinical trials.  My plan is 4 cycle of 3 treatments of one drug.  So that is 12 one week visits. Then 8 weeks of another round of drugs.  So a total of 20 WEEKS!!!!!  

I am not I repeat NOT interested in a second longer than 20 WEEKS of going though this.  Honestly I think half of this is about the money.  One of these treatment was billed at $10,000.  That is right $10,000.  UNBELIEVABLE!

I tell the nurse okay we will proceed but I need to make an appointment with the Oncologist.

I realize that now that I'm learning more and it's not just a unknown mystery of what is going on that I am going to find out if the tumor disappears before the 20 weeks is the 20 week necessary.  Also I want to know when we will run more scans to see the status of the tumor.  I am not interested in prolonging putting "poison" (as the nurse tells me)  in my body any longer than I need to.

When I think about advocacy I'm not thinking about marching for a "CURE" for cancer.  Why would the medical industry want to cure such a medical cash cow?  It would put many people out of work. Now I can see advocacy for highlighting the COST of treatment for cancer.  What is a person to do?  You pay the cost or you die.  I mean really that's what it boils down to.

Treatment is Working...Tumor is 1/5 of the size

With all that being said, daily this mass has been getting smaller and smaller  It's gone from the size of a small grapefruit to the size of a small plum. That's exciting and good news.  So, again if the pre-chemo was to shrink it so that surgery wouldn't be that bad than if a few more treatment makes it go away to the point that it can't be felt and the scans show it gone then why continue with weeks and weeks of poisoning a person. Of course I don't understand all of this yet...so...we will see.

Updating My Black Folder

I haven't yet updated my Black Folder since I've been diagnosed with cancer.

I am however really getting things in order starting with my online presence.  I have SO many online accounts that I need to shut down and/or make sure my son knows how to access.

Somehow I haven't been thinking about death or dying.  Not even as much as I was thinking about it before the diagnosis.

That seems strange to me but maybe it has to do with the fact that now dying could happen because of this cancer.

Before it was yes I will die like everyone will die and it was unknown when or how it would happen.
With cancer you know how it could happen, but still not when.  It dawned on my today that maybe the expiration date of a person is already planned and nothing can change that.  It just felt like the date is already out there for me and others.  I don't know why I thought that but it felt right.


July 2019 Medical Bills, 2nd Chemo, Follow-up with Surgeon

Medical Bills


Well...the medical bills are starting to roll in...$200 here, $300 there and then a whopping $18,000
for the Biopsy.  I'm thinking that is a mistake bill, before insurance is applied.  How on earth do people without insurance afford to live when they are diagnosed with cancer?  I just don't know.

July 9, 2019 Surgeon Appointment

Made a follow-up appointment with the surgeon.  I was told to make this appointment two weeks after port placement.  Now, typically I would NOT have followed-up.  I just do not like first being told what to do, and second I think it's always just about "more money".  I decided to go through this process as it is being prescribed to me.

I get to the appointment and when I check in they do not ask me for the $40 co-pay. Okay.  I get back to the room and the surgeon looks at the port placement, said it looked good, asked if I'd had chemo treatment yet.

I asked him how small the tumor had to get in order for him to do a lumpectomy.  He looks at the size from the mammogram 62mm and then what he measured 6x6 and then the MRI 51x57x53. Then he looks at the chemicals that the Oncologist has me on for Chemo.  I have my "cancer info book" I keep in my purse. I write these numbers down and am waiting for the size it needs to shrink to....pen in hand...waiting...I'm looking at the surgeons shoes because they look like very expensive yet look like comfortable shoes.  As I'm looking at his shoes he pivots from the computer screen and turns to me and says: "We want it to go away".  As he said it I began to write and then just started laughing and said..."I'm going to meditate on that!"  He said yes, that is the goal that it will not only shrink but disappear. 

I just sat there in a state of elation.  What if that could happen?  What if?

Same Day ---Chemo Round 2


I leave the surgeons office and head to my second round of Chemo.

I asked my son not to come because they told me I would not be getting infused with Benadryl and it would be less Chemo drugs this time.  Honestly I just wanted to see how it would be going it alone.

It was fine.

My white blood cell count was low, but not too low to get the treatment.  I took a book and I colored a picture. There was a new crop of people in the chairs.  It is soooooo sad.  Cancer/Chemo is sad.  There were two ladies who had to go home with some type of infusion pump on their waist.  Something that needed batteries.  I thought...okay it could be worse..I could have to take something home with me.  At least I get it done in one day and only have to deal with it once a week. I now count that as a blessing.

Drove home and went to sleep.  Just tired really....it just makes you tired.

July 2019 1st Chemo Treatments and Critical Illness Insurance

CHEMO Treatments 

June 2nd - 1st Chemo Treatment

My son took a before chemo picture of me...

The process begins...

I registered and sat down when 20 other people in the waiting room.  

My son went with me for the 1st experience to see how it goes, where I'll be. (I don't want him to take off work anymore though.  I can sit there for a couple of hours by myself, no big deal.)   

I wait for them to call names in sets of about 4 at a time. 

I get weighed and they take my blood pressure.  My BP has been under control lately.  Maybe that's a bonus to come out of this, no more blood pressure issues. 

Then I'm taken back to one of the lounge chairs to sit in.

I meet my nurse - Brenda - she seemed nice.

Brenda tells me about all the pre-meds before the Chemo.  We start the pre-meds and it takes about 2 hours of that. 

Then we start the two chemo meds which Brenda keeps reminding me that it is poison.  Okay, yes go ahead and poison me I'm thinking.  What else do you say to that?

She tells me of the potential side effects.  I think I have one...rushing wave of heat from head to toe.  It doesn't feel rushing though I just start gradually getting hot.  I told Brenda after the fact and she said it was probably was an effect and I should have told her while it was happening.  Okay I didn't know it wasn't sudden. 

I get through the last round of chemo drugs and the Oncologist wants to talk to me about the scans from last week.
  • Echo - good no problems with heart. 
  • Bone Scan - good no problems with bone. 
  • CT scan -showed something on the lungs but she doesn't think it's cancer and if it is it didn't spread from the breast cancer but she sees no way for it to travel there.  Even it is cancer the chemo drugs she is given me is also for lung cancer and it will kill it. It's a small something but she thinks its okay and we will just watch it.  
We are still at level 2B/3 cancer and it is still curable. I'm listening to her but start looking out the window.  Thinking its probably the mysterious Sarcodois back from the 1990's coming back.  I'm sort of concerned only because it's just something else to scare me.  But, I'm eventually okay, especially because I know it's not in my bones and the lung thing isn't that serious it seems. I had been worried about cancer in my bones because my knees hurt. 

Getting Home from Chemo Treatment

I'm wiped out before I could get in the door.  I sat down in the chair but was falling asleep. Changed out of my chemo "LOVE" shirt and put on night clothes.  Went to sleep around 6 p.m., my son came up and asked me how I was doing but I was knocked out.   Like really out of it. 

1st Day After 1st Chemo

Woke up at 5:30 a.m. when my son left for work, tried to sound normal and upbeat but still sleepy. Got up around 11:30 a.m. showered and got ready for the day. Started doing things I needed to get done and one of those things was checking on the status of the Critical Illness Insurance.  

Critical Illness Insurance

Went on line and it showed that the claim was approved and the check was processing.  Man that is going to help with medical expenses.  

One word of advise for Black Folder Project members is if you can get this insurance to get it. You never know when you will be diagnosed with a critical illness. Unum was the insurance company and they have been good to deal with. 

That's all for now...

June 2019 Surgeons, Ports, MRI, Body Scans and Oncology

6/4/19 - Appt with Primary Care and Surgeon

8:30 a.m. with primary care I hadn't seen in a while.  Basic Physical and prescription refill for blood pressure medicine which at this point seems like a minor issue. She tells me the Oncologist will be my doctor through the cancer treatment and I should come back and see her in a year.  Easy. Done. 

1:30 p.m. with Surgeon who will cut the cancer out. Waiting for about 30 minutes before I saw him.  The "Cancer Navigator" was there.  She was helpful and comforting but always has this worried look on her face which sometimes cancelled out the "you're going to be okay".

The doctor comes in and asks me a few questions then examines me.

He says the tumor is large and today it would not be a lumpectomy so we need to shrink it down. Okay.  He asks me do I have questions...and yes I had many.  I pulled out the "Cancer Binder" the "Cancer Navigator" had given me before I knew for sure I had cancer.  I'd read it and highlighted it.  We went over the type of cancer, how large the tumor is now and what grade of Cancer I had. He told me 2B mostly because of the size and no positive lymph nodes involved, so it hasn't spread.

He told me I might want to consider having a "port" put in for Chemo.  My eyes rolled back in my head and I just felt sick.  Geese can we go back.  What is going on....this is crazy. He cuts that conversation short and said I don't have to decide yet...all the while he knows this will happen. Anyways he was a kind man and I'm glad he's my surgeon. 

6/6/19 - MRI

The surgeon ordered a breast MRI he wanted before and after MRI's so I guess he can see what he's working with when surgery comes.  The MRI was about an hour being completely still.  I was grateful I knew how to meditate and keep still.  It was peaceful.  No pulling or prodding just noises and movement.  The ladies were nice, and it was a good experience. 

6/10/19 - Oncologist

I instantly liked the Oncologist.  She was straight foreword as well.  She read all of the reports and said it was curative.  Told me that I would need to get the port placed and the reason was it would make chemo easier to administer. She also said she needed more tests - Echo cardiogram to make sure my heart was good, CT scan to see if there were any other things going on and Bone Scan to see if there was cancer in my bones.  I can remember worrying about the bone scan because my knees, elbow and top of my eyebrow had been hurting for some time and my dog ESCO had died of bone cancer. She told me about chemo and chemo training. She told me Chemo would kill the cancer cells and stop them from growing and hopefully shrink the tumor.  She was very nice and I was happy to end up under her care.