Monday, January 31, 2005

what do you say.......

Mom has been having a terrible time with the chemo treatments. They're supposed to have all of this wonderful medication these days that keep you from being sick all the time. So far nothing has worked for mom.

Yesterday and last night were very bad and she ended up at the clinic for IV medications and fluids.

When she got home she was feeling much better but told me that if this is how she is going to feel, they will have to convince her there is hope. Otherwise, she is done with the treatments.

My initial reactions was to tell her she can't give up. It's not allowed. But she is suffering so much.

She is weak, and in pain. She is confined to home when she used to be so active. And now chemo is adding this terrible sickness.

I can't stand to see her suffer.

But I'm not ready to let her go.

Saturday, January 29, 2005

a jolt of reality.....

It started happening today. Mom's hair is beginning to fall out.

Dad said she was in the shower and called for him. When he went to her she was standing there with clumps of hair in her hands. I think it really shook him up.

I know we were expecting this. I know this is what happens, but when it actually does, it is a jolt of reality.

It turns out that dad does have a sense of humor about his hair loss after all. They're going next week to order a wig for mom. He suggested they get it in his color so when her hair comes back, they can cut the wig for him to use.

Mom laughed. Go dad.

Wednesday, January 26, 2005

keep em laughing......

I finally told my youngest child that his grandma has cancer. He knew that she was very sick but I hadn't told him the whole story yet. I had always intended to, but never thought the time was right.

I was proud of him. He handled it very well. He said we'd pray for her and do whatever we could to make her feel better.

The kid does have a sense of humor though.
When we told him that mom would probably lose her hair, he made a sad face and said, "aww, I'm going to have a bald grandma." Then he said, "Oh well, then she'll match my bald grandpa!"

Mom laughed.

Seeing as Dad is a little sensitive about his hair loss- we didn't tell him that one....

Thursday, January 20, 2005

suggestions please.......

Thank you to everyone who has left comments here for me. Your kind words are always more encouraging than you will ever know.

Today, mom's doctor told her to read Gilda Radner's book. I have not read her book but my immediate thought was, "NO!"

Gilda was misdiagnosed- like mom.
Gilda had ovarian cancer-like mom.
Gilda died.

I truly believe that my mom's best hope right now is hope. I think she really needs a positive outlook to help her get through this. I don't think reading about someone who has died from this disease will provide that.

If anyone knows of any inspirational books about cancer survivors, (even better if it's about ovarian cancer), would you please let me know what they are? Any suggestions would be greatly appreciated.

Tuesday, January 18, 2005

an apple a day....

I have developed an aversion to apples. Not eating them but seeing them.

I guess I should explain.

When mom’s doctor told me about the mass growing inside her she struggled to find something to compare it to. She said, “it’s the size of…… it’s like…. It’s like an apple!”

Apples are pretty. They’re sweet. My kitchen is even decorated with apples. I have apple plates, apple rugs, apple plaques…

But every time I see an apple now I think of that doctor, the comparison she made, and this awful thing that has changed our lives, and threatened to take my mother.

As I sat in the waiting room that day, sobbing, waiting for my family to arrive, I was in a chair next to a Christmas tree. The tree was covered with red, shiny, apple ornaments. I remember thinking then how ironic that was.

Now it seems that everywhere I go there is some reminder. Have you ever noticed how many places you see apples? Not just the produce section at the store. EVERYWHERE. They’re everywhere.

Maybe it’s all starting to get to me. How can feeling anger toward an apple be normal?

I’m definitely re-decorating my kitchen. It’s time…

Thursday, January 13, 2005

the waiting game.......

The waiting is the worst part. Mom finally had her consult with the oncologist and is scheduled to start chemo in two weeks. She has good days and bad. She's not in a lot of pain now, but her outlook goes from one extreme to the other. Today she seemed so depressed and didn't even want to talk on the phone with me.

I'm so afraid she is going to change her mind and not do the chemo. She told me before her surgery that if they can't cure her she just wants to be left alone. To my knowledge, she's not been told what stage the cancer is in. None of us were. Just knowing what organs were involved, I've been able to make an educated guess. I'm going to try to not seek any more information about ovarian cancer at this point. Sometimes too much knowledge is not a good thing.

In the mean time we are trying to get life back to as normal as possible. Or I should say the world is trying to make us get back to normal. All of the older kids have gone back to college now. They are scattered across the country and didn't want to leave. Mom told them all that they have to go back and she will be there for their graduations.....

So for now we will wait, and pray.................

Friday, January 07, 2005

A white Christmas.........

Tonight we finally celebrated Christmas....

We had the food, the music, the tree (dad didn't have to spray-paint it after all!), the presents, the laughter, and each other.

And the snow started coming down.........

What a beautiful evening...............

Thursday, January 06, 2005

this is all going to be okay..........

I've been either at mom's or on the phone with her every day and the change in her is amazing. She actually sounds like herself again. Her voice that was scratchy and shaky after the surgery is back to normal and she's no longer gasping for breath.
And she laughs.........

She'll be starting chemo soon but we don't talk about it much.
Before her surgery, a representative from the hospital asked her permission to save the tissue they removed for research purposes. Mom agreed.
She told me that if they can learn something from her, and help other women, then this is all going to be okay.

Maybe they will learn something that will affect her grandchildren someday.........

Monday, January 03, 2005


After about 48 hours in the good hospital, mom got to come home today!

She's still on antibiotics for the pneumonia but she is no longer gasping for air. She can get around on her own (slowly), although Dad still insists on doing everything he can for her.

Her legs and feet are still extremely swollen. Dr. L said it's the cancer that is causing it and that instead of waiting until the end of this month she wants chemo started right away. We're working on getting that set up now.

Mom is so worried about the chemo. She remembers when her cousin had ovarian cancer and how sick the chemo made her. She said she doesn't care if she loses all of her hair. She is just worried about throwing up constantly. Hopefully she'll be lucky and it won't affect her that way.

We're trying to decide now about the Christmas that never was....
She kept telling me today to take our presents home with me, and we'll just plan for next year's Christmas. While I think looking forward to next Christmas is a good thing for her to do, I don't want to give up on this one. The older kids will be going back to college in two weeks. I'm going to talk to Sis tonight and see if we can make plans.

For now all is good..........

Sunday, January 02, 2005

I can breath again..............

I arrived at the hospital where they transferred mom about twenty minutes after she did. In that amount of time she was already settled in a room, (private room), and speaking with a very nice nurse.

She said the ride over was not too bad. The EMT's that rode in the ambulance with her talked to her all the way there, and it sounds like they had a good ol' time.

Mom looked at me and said, "I feel safe now. Thank you."

A resident came in and took mom's history and looked over the few test results the other hospital had sent with her. She came back in and told us she has pneumonia. Simple diagnosis. It explains the shortness of breath and extreme weakness. She also said that the first blood draw they did at the other hospital showed an extremely high white count. (Even though we were told repeatedly that there was no infection.....) My dad was livid when he heard this. He said if he had known that he would have had her transferred day one, even if it meant taking her himself.

The resident got orders from Dr. L for IV antibiotics etc. They got rid of the IV line that was causing her so much pain and started a new one. They promised to give her pain medicine. AND THEY DID. Amazing concept.... I feel like we're in a whole new world here.

They gave Sis and I a meal ticket to take to the hospital cafeteria to get mom a tray because their patient food service had already closed for the evening. On the way down Sis said, "I feel like we just left the worst ghetto and are now in the Ritz Carlton......"

Sis and I had planned to spend the night here. We were going to camp out in one of the waiting rooms if we had to. But we felt so reassured that mom was being well cared for now, that we decided to go home for the night. (Dad of course won't leave her side for any reason and stayed with her)

I feel like I can breath again for the first time in days.

Saturday, January 01, 2005

she just likes to torture her patients............

I called Dad on his cell as soon as I got up this morning. He went back to the hospital around 5a.m. to make sure he was there when mom's doctor came in. The doctor hadn't been in yet. He was in a waiting room area because mom and her roommate were getting "baths" and he wasn't allowed in the room. Understandable. He said it had been quite awhile.

Mom had her cell phone at her bedside, so I called to see how it was going. They had taken her oxygen off, had her sit up on the side of her bed, gave her a basin of water, and left her. She could barely talk because she was so short of breath, and was in a lot of pain from sitting so long with no support for her back.

I called dad back and told him to find her nurse because there was no longer anyone in the room with her. He had assumed all this time that the nurse was still there helping her, when in fact there was no one helping her at all.

He told me he was ready to carry her out and drive her to another hospital. I told him to hang on and I would make some calls.

I started by trying to call the doctor that should've been in to see mom already this morning. (The doctor who has said for the last two days that she could not reach Dr. L who dismissed mom from the hospital where she had her surgery.) The instructions on her office answering machine said to have her paged through the hospital operator. I did this and they said they would page her and give her my number. I then called the hospital that mom had her surgery at. I knew that being a holiday and a Saturday, I probably wouldn't reach the doctor who did her surgery, but I needed to talk to someone on the service.

After explaining the problem, and being transferred several times, I reached a nurse that told me she would contact mom's doctor. She took my number and promised to call me back.

Just a few minutes later, the nurse called back and said Dr.L wanted the name of the local doctor and how to reach her. I gave her the information, and again she promised to call me back.

A little background on the local doctor- She and her husband are both doctors who work out of the same office, and sometimes see each other's patients.

About twenty minutes went by and the nurse called me back and said Dr. L had been connected to a nurse on the floor where MR. Local doctor was. When he was told who was on the phone and why, he stated that he wouldn't talk to her. He said she would have to talk to MRS. Local doctor directly. The nurse on the phone told me they put in another page to MRS. Doctor and would call me back. I gave her my cell phone number so I could leave for the hospital.

My blood pressure was now back to stroke level. I called dad and told him what was happening and he said MR. And MRS. Were now conferring in the hall down from mom's room. He said MR. Doc had finally gone into mom's room and told her he was going to try to contact Dr. L.
Funny- she was just on the phone wanting to talk to him and he refused......

As I pulled into the parking lot my phone rang and it was the nurse again. She told me that Dr. L had finally spoken to someone to arrange mom's transfer. They were arranging for an ambulance to transfer her within the next few hours. I have to say that it was very nice to speak with a nurse who kept every promise she made. She went out of her way to keep me up to date with what was happening.

When I got to mom's room she was lying down finally, but they still hadn't put her oxygen back on. She said the nurse had also made her sit on the side of the bed to eat her breakfast. I understand the concept of sitting up and why it is important. However, there are very large chairs in the rooms for the patients. Why this nurse insisted that mom sit up with no support for so long only makes me think she just likes to torture her patients... She also ran more medication into the IV line that hurt mom so bad yesterday. Mom said it didn't hurt as bad as the contrast did- but it hurt and the nurse told her there was no reason for it to hurt, and continued to run the medication. Also- the o2 line is plenty long to reach to the side of the bed so why they left it off is anyone's guess.

AND- No pain medication. At all. Today.

Thank God we are finally getting her out of here.

(written September of 2005) I have learned much in the last nine months. I have read that ovarian cancer whispers. I say it screams. It just needs someone to listen. The American Cancer Society statistics for ovarian cancer estimate that there will be 22,220 new cases and 16,210 deaths in 2005. This is a death rate FOUR TIMES that of breast cancer.Almost 70 percent of women with the common epithelial ovarian cancer are not diagnosed until the disease is advanced in stage. The 5-year survival rate for these women is only 15 to 20 percent. This is unacceptable. Women need to be made more aware of the symptoms, and doctors need to listen to their patients. Especially when the patient tells them that they fear they have ovca, as my mother did for almost a year before she was finally diagnosed. It’s so sad and senseless when a woman knows the symptoms but can’t get anyone to listen to what she is saying.