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.

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.