continuing the frustrating week

Wednesday, I had a doctor appointment at the Oncologist’s office.  I asked her about filling out some forms for me to try and get some financial aid for the dental work I had to get done recently – that was very expensive.  She suggested that I talk to the social worker that works in the office to see what help she could suggest.  I haven’t asked for help since this started but after living with it for six years you can imagine the costs and bills that have added up over time.  Jesse was with me and asked me why I wouldn’t ask for help.  I decided I would talk to the lady but not at the office.  I asked if she could call me and the doctor told me of course. 

I had to go upstairs after the appointment to talk to the financial lady about a bill I got from January for over 500$.  It was for my Xgeva shot - which I’ve been getting once a month since 2012.  Xgeva is extremely expensive but they have a program where you only have to pay 25$ a month.  I have qualified for the plan since 2012 and have to re-enroll every January.  When I got my first shot January of this year, I talked to the financial lady and told her the only way I can afford the shot is to be on the plan.  She assured me I would be on it and even showed me the card that was for my plan. 

When I went to the financial office Wednesday, she asked me if I have Medicare and I said no.  She asked me again and I said no, but then she asked, "do you have part A?"  I thought a minute and said, “Oh, yes, I forgot about that because I didn’t want it or ask for it but they told me I had to have it.  I guess because I am on SS disability I’m required to have it.”  She then told me, unfortunately, if I’m on any type of government insurance I do not qualify for the program offered by the company that makes Xgeva.   What?!?!?!   That was another shocker this week.  Yikes!

The good that happened was the Social Worker called me and I might be able to get some help.  She told me she would send me a package of things I might qualify for.   One of the things I hadn’t thought about was transportation.  I remember telling my friend Tracy, “When they tell me I can’t drive any more, just shoot me.”

I have neuropathy in my right hand and foot and it’s been getting worse.  I know driving is almost out of the picture.  It’s been taken away a little at a time to the point that right now my family’s ok with me driving to Publix, or the library, or within a three-mile radius, anything beyond that has become kind of off limits.  Occasionally, I’ll go further but not often.   

Anyway, the social worker, told me she would fill out an application for me to use the bus/van system where they pick you up at your house and take you where you need to go.  They also, pick you up after your appointment is over and bring you back to your home.  It only costs between $1.50 – $4.00.   That would be nice.  It’s mainly for doctor appointments, shopping, grocery store, things like that but it would help.  She also told me about a metastatic breast cancer support group that meets once a month and the next meeting is the 10^th.  I am not sure about that.  I have avoided living like I have cancer, or being around other people with it.  I don’t know why.  After six years of living with it I should be long past the phase of denial but occasionally I still struggle with it.  I sort of feel normal sometimes and then I guess I pretend I am, but I am not.

I know I’m not.  It’s time for support.  I’m kind of dreading it though.  I really don’t know what to expect.  I’ve always thought I was strong and didn’t need help but that’s not true.  It’s really not true.  Hopefully the 10th will work out and I’ll be able to go.  I have met people online, on facebook, and on blogs that have what I do but it’s more of a controlled environment.  If I start getting upset I can just shut it down and I don’t have to deal with it.  Going to a support group and meeting people in person is a little scary to me because I can’t just turn it off.  I don’t know how I will respond emotionally and I don’t really like that.  I need to do this though.  I need to do this.  Pray I will be feeling well enough to make it.

frustrating week

I haven’t been posting lately because I have been going through some things that I didn’t really want to share.  I don’t know how to deal with some issues and I don’t particularly like discussing them.

This week has not been a great one.  I don’t like posting about negative things but

on this blog I wanted to be “real” about living with cancer, so this post is not going to be super positive.

I’ll start with something that happened that really scared me.   Chuck needed to go a few places to get some things done and I decided to go with him.  It started when we went to Perkins for breakfast.  When we sat down Chuck slid the table closer to me and it made me really dizzy.  When we were eating I started feeling nauseous and couldn’t eat everything. 

We went to Costco next to get the tires rotated and balanced.  They said it would take two hours so we walked around inside while we waited.  It was unusually warm.  Normally, I can use a cart and walk around putting my weight on it and I’m fine.  The nausea continued and made walking around difficult.  I found a recliner and sat for a bit hoping it would help. 

Finally the car was almost ready so we checked out and went and sat in the tire center.  I thought it was going to be a few minutes but we ended up waiting about another 20 minutes.  If you’ve ever been in their tire center the smell is extremely strong and it made me feel more and more nauseous.  I tried to go outside and wait but the heat was so bad I couldn’t decide what was worse. 

Finally we got the car and started home.  Unfortunately, the nausea continued getting worse and I started trying to breathe in a manner to keep me from getting sick in the car.  Chuck kept saying, “Do I need to pull over?”  I kept saying, “Just go home.  I just want to go home.”  We finally made it home but I’d begun to hyperventilate and could no longer feel much of my hands or feet. 

When we got home, Chuck told me he was going to back the car in and for me to go straight to the bathroom.  I told him I couldn’t get out of the car without his help.  That scared him because I never ask for help.  He helped me get out of the car but I was stumbling and couldn’t get my weight on the cane.  My hands didn’t have much feeling and I almost fell down several times.  I got to the bathroom and told him to leave but he wouldn’t because he said he was afraid I might fall and get hurt and he refused to leave me there. 

When the nausea finally subsided a bit he helped me get in bed.  I laid down holding the bathroom trash can in case I got sick.  I think I fell asleep right away and I slept for 3 or 4 hours.  I’m not exactly sure.  I was able to get some nausea medicine down before I got in bed and it really helped.  When I got up I was still weak but I felt much better. 

Since this cancer journey began I’ve pretty much been able to do what I need to and not need help.  When I had surgeries I needed help to recover but that was expected.  What happened yesterday was completely unexpected and frightened me. 

As Chuck helped me to the bed he said he thought this was what our future was going to look like.  I really hope not.  I've been taking it easy today but still feel really weak.   I'll wait and add the rest of the week later.  This is long enough for now.

Art show - early mother's day

Today, we went to the St. Johns River Festival of the Arts

I was inspired and came home and painted this:

 Have you seen where an artist does a fast, I mean

really fast (like 2-3 minutes) painting - with 

the canvas upside down and then turns it right side up.

And Jimmy Hendrix appears, pretty cool.

Yesterday, we went to Chuck's Mom's to celebrate

an early Mother's Day with her.

 On the way home from the art show we saw a mama

with 2 babies about 2 blocks away from our house.

 and we got something at the art show we've been admiring

for the last couple of years.  It's so pretty.  The birds love it.

The dogs not so much.

and the painting I did - is only 3" by 9" 

Not so lovely..

 I have no idea why I titled this

post "Not so lovely..." It was just the

first thing that came to my mind. 

Maybe

because I'm going to talk about, or

write about, something that makes me angry.

Since I started the new cancer fighting meds

they have lowered my white blood cell count

which lowers my ability to fight off getting

sick when I get around people.  Thursday

Tracy and I went to the Orlando Art Museum.  

We wanted to see what First Thursdays are like. 

We've both thought about submitting work

to be in the show.  I actually did submit something

back when I was working but they politely turned 

me down.  I think it was too religious.

Anyway back to the real reason for this post.

Because of the new meds I'm on I'm supposed to wear a mask

when I go somewhere crowded. 

 I didn't even think about it for some reason.

I guess partly because I didn't think it would be as crowded

as it was, wow! Crazy crowded!

When I wear a mask I've noticed people will go out 

of their way to avoid me.  Really?  I can't believe

how uneducated people are about this.  

                                                 So let me educate you...

It sucks to have to wear one of these in public.

It's hot, it's uncomfortable, and I feel like I'm wearing

a sign that says look at me and run.  I will infect you

and your children...but I won't!  Your germs can kill me. 

Although, I will admit that right now, since I am sick you 

might catch something from me.  But here's the thing I won't 

go anywhere until I'm well so you don't have to worry about it.  

I am unlike people who go out sick as dogs and cough 

and sneeze and spread their nastiness.

Ok, sorry.  I just get upset when people go out 

of their way to avoid me, or stare and wonder what contagion I 

might have that they don't want.  I just had to get this out.  And 

just in case there was any doubt, cancer is not contagious!

Thank you for letting me rant!

Learning to focus

I had another breakthrough when I went with Chuck to the mall (a week and a 1/2 ago?) and we stopped in the bookstore.  I pulled out an Acrylic painting magazine, a venue magazine, and an Artist magazine and started looking through them.  I kept focusing on the portrait paintings.  After I saw one that looked like Eric’s wife Sarah – I had another epiphany.  I have said forever that I like painting and drawing people the most.  The painting I was looking at was the style and colors that I saw in my head that I wanted to do.  Ding! Ding! Ding!  A light bulb went off!! I closed the magazine and said to myself, “You’ve said for years this is the subject matter you want to paint, want to draw, and enjoy working with, the most--so just do it!” Winner winner chicken dinner!! Got to start doing portraits. Paint, paint, paint, practice, practice, practice, do this and stop putting it off.  I need to find artist styles I like (or my own style) and learn how to do it, practice it, do it!!!

I also went back to my art blog that I haven't used since 2013, wow 3 years, and saw that I had been working on portraits.  It's almost all portraits.  You can see it here: Morning Star Studio

So, it's not something new  - it's just getting back on track.

I wrote this last week before I knew Chuck was going to need more stents.  I said starting tomorrow, which would have been Wednesday August 31st, that I would start a portrait yeah, sounds like more procrastination.  Chuck’s going through a lot and we’ve had many doctor appointments.  He had an appointment last Wednesday that turned into another catheterization the following day.  So that was Wednesday and Thursday last week and then 5 days of recovery from Thursday. 

Then this past week he had a follow up appointment, which was about 2 – 3 hours.  We learned he needs four stents and it will take 2 – 3 more surgeries.   He had 3 days of doctor appointments this past week and next week – he gets some stents and another doctor appointment before that.  It's been busy.  I'll be glad when we get a week without having to go to the doctor - two weeks from now - yay!  And then I'll get serious about painting again!