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.

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 advice 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.  

May 2019 Getting A Cancer Diagnosis

Whew...well...

An experience you never WANT to experience, but it's my experience now.

For about a month I felt a lump in my breast.  I'd felt lumps before and they turned out to be water cysts that could be aspirated.  Well...not this lump.  This lump felt different because it wasn't moving.

5/23/19

So, after getting the order right for a mammogram and ultrasound I go to the mammogram.

The moment after the mammogram I sat there waiting for the ultrasound and already knew it wasn't good.

The ultrasound lady asked me:  "Did you get hit?"  No. "Did you get in an accident" No.

The doctor comes in and looks at the ultrasound and then feels the lump and tries to move it.  She looks at me and says: "well you have to get a biopsy".  I say: "so, it's not a cyst?"  "No, its a mass".

She starts walking towards the door and I ask: Does it look like cancer?"  She says YES.

I say: "so what does that mean?"  She said: "It means we have to cut it out.  It's big we might need to shrink it down first but we have to get it out of you."

I'm sitting there in some form of shock.  I get dressed and now they take me into another room that looks like a comfortable den and you get a card for a cancer "navigator" person who will hep you through your "journey".

Oh, here we go. I'm caught up in the medical "system". Still thinking good grief can this not be true.  Then I say out loud: "Is this how you find out you have cancer?" and the tears start to fall.  Sue the lady who did my mammogram  hugs me and says I'm going to be fine.  Everything will be fine.  I then get an appointment for a biopsy.

5/28/19

The day of the biopsy - so much, so much.

All I can remember is thinking thank God I ended up in Williamsburg, VA.  The ladies, the doctor were beautiful and helpful people.  Numbing the breast, putting in a needle, the noises, the clicks of taking the samples. The bandages, the icepacks, THEN the binder.

You don't have the real actual results yet but you are given a "cancer binder", appointment with the surgeon and oncology.  WHAT? I don't want this binder. I don't want the "journey".

Any way it was becoming clear to me that these folks already knew it was a cancerous BEFORE the results came back.

I'm still thinking what in the world is happening here.

Then I get dressed and Sue who was so helpful told me how great the surgeon is and how much I'm going to like him.  How did she know because He did HER cancer surgery. Then it all made sense why she was talking about  minimalism and giving away/throwing away stuff you don't need while she was prepping me for the biopsy.

She looked healthy.  She looked happy.  Leaving I'm thinking okay I might be okay.

5/31/19

I go through the stages of grief.

Let it not be cancer, even though I know it probably is, but still holding on to hope.  Then I get the call to make an appointment to get the results.  I say, please just tell me over the phone since the doctor basically already told me.  The navigator agrees and Dr. Dunn gets on the phone and confirms it's cancer and I'm going to be fine. I thank her for being direct and frank and the navigator gets back on the phone and tells me about the next steps and that she's try to be with me with the surgeon appointment.

There it is I'm a cancer patient.

...and now to the black folder project....

I don't feel like I'm going to die tomorrow...I mean I might but I think they can cut out this cancer.

I now feel like I've got a limited time to get my son ready for living in the world without me, but I think this might be a good segway to that.  I've always been healthy but this is a major medical scare. He's going to see me sick, going to chemo, getting surgery, etc.

This is real life or death staring at you in the face.  I've been preparing him almost all his life for living without me, now that I KNOW it could happen quicker than I anticipated I will live out the rest of my life showing him how much I love him.

Cancer...a wake-up call...glad I have a black folder but now I know I need more information in it.  

• Now I know I need to purge all the "stuff" I have that is really a bunch of accumulated junk. 
• Now I know that another day really isn't promised.  
• Now I know I need to find out the name of The Most High God, The I Am, EL, Yahweh...I want to know the name.  I want to read all the books I have gathered about the bible, the hidden books not in the bible...and now I'll probably have time on my hands to do just that.

I don't know where this cancer diagnosis, treatment and hopefully in the end cure/cancer free experience will take me and the Black Folder Project but time will tell. Time will tell.

Peace,
Ridea