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 me 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.