Betty

 We headed off to Duke.  Rick always has to drive me because I get my eye dilated and can't see shit to drive home.  I honestly feel like a child that he must drive me, he keeps telling me he doesn't mind. 

I am never there for less than 3 hrs. So that makes me feel bad for him.

I registered and got seated in the waiting room by the doctor's rooms.

I am then taken to a room where I have to read an eye chart, have my eyes dilated, and numbed, then they took the pressure of my eyes.  

That is all fun, but the real fun will begin in a few minutes. 

Then I head down to a room for all these photographs. 

They held my head this time and they took lightning photos of my eye. 

I mean, it's like lightning it's so damn bright and it's fast and you can't blink. At one point she held my eyelid up. It's hard for me as my eyes are tearing. The tech was nice and said she prefers to just hold the eye for people and most don't like it but you've been cooperative. That made me laugh as if I had a choice. She just said, 'close your eyes" and when I did she put her very cold fingers on my eyelid and opened it. 

Besides, I prefer her holding it so I can't blink, just tear. Oh, do I tear.

I then head to another room with a different machine and have more light shown in my eyes. The contraptions have me put my one eye in a weird position and then have to move my eye around for these photos. It's so odd but let us not forget, that bright light in my eyes.  It makes the glaucoma test seem like a small tiny light in the distance in comparison.

Both eyes this time. I guess for comparison or the tech was a sadistic SOB. She was very very nice I joke. This tech told me when I asked about doing my good eye that this was to be sure it hasn't spread to this eye. Yikes. 

I conveniently always forget about that tidbit. 

Then I am taken back to the room to talk to the Doctor after all this.

During this long walk through Duke hallways, she tells me she loves my haircut. Did I always have short hair? I want to cut mine she tells me but I've been afraid. Her hair was to her shoulders. I suggested doing a little at a time. She asked if I did. I said nope. first time I went short was after a break up. Stereotypical right? I had shoulder length hair and it was the 80s. you know big hair. I walked in and said shave the one side and leave it long on the rest. I mean, I went nuts. she laughed and said she could never be that brave.  She dyes her hair salt and pepper. She asked who does mine. I told her God or Mother Nature whomever you believe in. She laughed and said I was lucky. Hmmm, not my thoughts but I'm happy everyone else likes it. And now we're at the door to the doctors room and she made me forget for a few minutes why I was there. Then I felt the familiar jump in my belly. 

I am a bit stressed.

He bounces in. He looks skinnier than ever. I want to feed this man. 

Even my husband said this so it wasn't just Peg who has a need to feed as Rick loves to say.

The doctor is so full of energy...and young.  

He comes in and says, "Good Afternoon Peggy, how's Betty treating you?"  

I chucked and said, "I'm hoping you can tell me"

He pulls up his computer and says, "let's find out"

He begins to pepper me with questions while looking at all the pictures.  I can see them too. I see the difference but I am not sure what I am looking at. But the big blobs sitting on what he points out is my retina and the nerves are far smaller. Wow. 

For this visit, I asked Rick to come into the room with me so if I had to go over procedures and/or different therapies I wanted him in the room. 

1. because he always asks me questions and there is always 1 I can't answer.

2. If I forget something or if I have to pick 1 out of 4 horrible choices I kind of like him to help me as silly and 1950s as that sounds. He can walk me through this and as we talk I can then clearly see what I need to do. Not that I want him to tell me what to do. Hell, that is never the choice I pick, as he'd tell you.  I just need to bounce it off someone other than this doctor who wants me to do things I don't wish to do.

So Doctor S shows me the new pictures and we compare them to the other pictures. It has shrunk more since the last time I was there. 

Now that shows you the chemo is still working he says (oh you don't have to tell me it's still in my system!) 

After we review the photos there are questions and answers.

He says, "So you are really sure you don't wish to do chemo again?"

I told him I was POSITIVE if there are other options.

He then pulled up my eye test. He was impressed. It went to 20/25. 

That is so good out of an eye I could see nothing out of before. 

In fact, it is actually remarkable. When I see this a part of me thinks, oh what's another 6 months of chemo? Then I remember and NO I do not want chemo!

I told Dr. S at this point that I am just now beginning to feel somewhat normal. I still have side effects but they are waning. I do not wish to go on more drugs. Isn't it possible to just let Betty be? It's not cancer. I can now see. Can we monitor this and if it gets bigger or begins to grow you can do that shot in my eye as you suggested now that it's this small?

How about I come every 6 months?

Dr S:  6 MONTHS?!  Oh No No!  I'll do every 3 months.

Peg:  How about we meet in the middle at 4 months?  No drugs and if I come back and it's grown you are able to do a shot right? Of course, if I find that I am bumping into walls again I will call immediately and come in to see you.

Dr. S:  Yes. Hmm, well you can see now. It's remarkably smaller. 

Okay, I give. I'll try this because I do not believe it will ever go away 100% as we have discussed many times. 

You can go 4 months, not my 3. Deal?  

You lived with it like this for 6 years in VA and it was stable until you moved here. Okay, every 4 months I'll do and if anything changes for you including pain in your eye again let me know right away you got that?

Peg: I can so live with that!!  I could kiss you, Dr. S.

Dr. S: he laughs but turns to both Rick and me and whispered "that's what all the girls say" 

We both laughed. Rick said later that he whispered because he knew he wasn't allowed to say such things, HR would be on his ass so quick. (rick worked in HR) I laughed and said I guess he was willing to risk it because he kinda knows us now and can see we aren't normal and we wouldn't go to HR and get him in trouble. 

So NO drugs!  I can continue to get this shit out of my system, which he continues to tell me could be 6 months sometimes longer. 

I return in February to do this all again and if it has grown I get the ole sharp stick in the eye. If it is still stable, we move along until 4 months later and we'll do it again. We shall see. HA, no pun intended.

I can't even begin to tell you how thrilled I am about this.

The night before I was stressed. I wasn't thrilled with the sharp stick in the eye but I was so worried about more drugs. I knew the shot in the eye was prednisone, which I have begun to hate, and I knew it came with a side of Humira, which I'd have to inject myself with twice a month I believe.

Rick left his ugly chair and came over to where I was on the sofa and just gave me a hug. I asked, "what is that for?"  

He said, "I can hear you stressing over here!  It's going to be fine, the worst is over, you're gonna be fine!"

He makes me laugh. I didn't even have to share the words and he knew. 

I was stressing and thinking about it.  In all honesty, I have a lot of issues with the side effects of drugs. I wish I didn't and I could enjoy them like my friends and husband. 😁

My husband used to say in his corporate days when he got home on a Friday that a Vicodin and a glass of wine would be the perfect way to end his week. That would always make me laugh. Not like he did it. He just used to say it. But if he had had one...

I got Vicodin once after surgery and I broke out in hives so bad the hospital told me they had never seen it this bad before and the ones on my head and hands were miserable. So drugs and I don't mix well. Good thing I never did anything more than pot as a kid. I fear what may have happened to me. 

I used to be the driver or the hair holder to all my friends taking acid, mushrooms,etc. Ah, the early 70s. I drank, and I loved pot. 

It's all the same today. No other drugs for me, I'm a big fat wuss.

So when we left Duke it was one helluva good high I was on. No more drugs!  I can see pretty damn well out of this eye!  I am free to continue to let all this shit out of my body for 4 more months. If I had won the lottery it would have been the perfect day.

So there ya go. Betty has not left the building. She seems to like her place in my eye. I wanted to make it more of a hostile environment but I am not willing to do 6 more months of chemo. I had someone say, just do 6 more months. Hmm, you do it for me and then tell me you want more. Call me a baby, a wuss, anything you want because I do not care. 

I've lived it and don't wish to again. 

I don't even remember the beginning days when I was so amped up on 60mg of steroids and chemo. I was out of my mind as well as physically sick. I recall being so very ill and thinking death couldn't be any worse but that's all. I remember the later parts because I was taking less as time went on of steroids. Steroids are evil !!!!!

 I'm going to have a fun weekend of painting or some such thing that is a constant in my life now. It could be worse right? I could have to be on chemo again. So painting sounds wonderful to me!

____________

Betty's not leaving but Betty Lou's Getting Out Tonight.

I love this song from way back in the 70s. I had never seen it to this video though and it kind of made me laugh. A good many of those clothes are back in styles which I think is cool.