Friday, December 31, 2004

Nurse From Hell

Today was a nightmare. Mom is still in the hospital in a town near here. This hospital does not and never has had a very good reputation. We have experienced first hand why.

First- I need to backtrack a little. This is the same hospital that mom spent those first few days in December in while waiting on her transfer. She was on a different unit then. The nurses were such wonderful people. Dad has decided that they've taken all of the nurses in the hospital that hate their job and everything else about their life and put them on the unit where she is now.

Last night I had to beg the LPN taking care of mom to call the doctor and get a pain medication order for her. The ER doctor had neglected to write one. (hello- she has cancer and just had major abdominal surgery. I think pain meds are not too much to ask) After asking several times, the nurse-from-hell decided she would call mom's doc. She told me she got an order and as soon as the pharmacy brought it up she would give them to mom. After an hour went by, I chased down NFH and she said, "Oh, I'm just so busy and so far behind in my schedule..." Finally, more than an hour after she got the order NFH took the meds to mom. By the way- she didn't actually have to wait for the pharmacy to bring them- the meds were in the drug cabinet outside of mom's room the whole time...

Adding to all of the fun- mom's roommate was a 94 year old who was just fine when her family and friends were there. As soon as her company left she constantly yelled, "NURSE!!" and turned her call light on. When someone would finally come to see what she wanted she'd tell them, "Oh, I didn't need anything...."

Today- you guessed it- NFH was back and again assigned to mom's room. She started off on the right track- Asked mom how her pain was and when the last time she had her medication was. (wouldn't she know the time by looking on the chart??) She promised her meds would be there right on time today.

I left to run some errands- Dad was there with her. They took her for a CT scan of her abdomen. They took her in a wheelchair and when they got in the CT room, they told mom to get up and climb up on the table. Correct me if I'm wrong- but is someone who cannot get out of a bed by herself really expected to be able to climb up on a table?? Then the tech doing the scan asked her if she's ever had abdominal surgery.... Umm, correct me again if I'm wrong, but shouldn't he already have this information?? When they started to run the contrast in her IV mom said she literally screamed it hurt so bad. (this is the woman who will usually grit her teeth and not say a word when she is in pain.) Their response to that was, "It can't hurt that bad. In fact it shouldn't hurt at all. Just hold your arm up in the air." Mom came back with tears running down her face and said she will never ever again consent to have a CT scan done.

On my way back to the hospital, I called Dad to see how things were going and he said they were once again trying to get NFH to give mom her pain meds. She was now almost two hours past time. I was so angry I honestly thought I was going to have a stroke driving back to the hospital.

When I got there the NFH was sitting on her ass at a computer and mom had still not had her meds. Mom didn't want anyone to complain because she was afraid she'd never get her meds if we did.

Sorry- that's BS. I went straight to the RN in charge and sweetly said," My mother has been asking for her pain meds for over two hours now. Her nurse seems to be a little busy- could you please get them for her?" Someone must've tipped off NFH, and by the time we got back to mom's room she was there getting her meds out. There was never an apology, sorry that happened, it won't happen again, nothing. At least she got her meds. At least I didn't have to scream like Shirley MacLaine in Terms of Endearment. I sure wanted to though..........

Thursday, December 30, 2004

.......we've taken a wrong turn

Mom was supposed to go to her family physician today to get her staples out. Dad got up and found her sitting on the couch trying to catch her breath. He didn't hear her get up and she didn't remember how long she had been there. He called me after he called 911 and I met them at the local emergency room.

She was pale as a ghost and her feet and legs were extremely swollen. They decided this was all because her blood count is so low. They started her on blood transfusions and ordered a CT scan of her abdomen tomorrow to find out where she is losing the blood.

Poor mom looked like a frail child in that damn hospital bed. She became withdrawn and stopped talking much. I couldn't decide if she was depressed or really pissed off. I think it's both. I don't blame her.

I didn't want to leave the hospital but again she wasn't resting if we were in the room with her. After spending 14 hours there, I came home. At least this hospital is close enough that if there's another blizzard, I can call the guy down the street to take me on his snowmobile. Thankfully the forecast isn't calling for any bad weather. I will be able to make it back in the morning.

I feel like we've taken a journey to some foreign land. We sure don't speak the language wherever we are......... And we keep taking wrong turns along the way. This isn't where we're supposed to be right now.

Tuesday, December 28, 2004

They say it whispers.........

I've been reading up a lot on ovarian cancer. They say it whispers..... The symptoms are often so vague, that when the correct diagnosis is made, it is too late. I lost track of how many doctors mom went to. They would always send her on to another. No one could quite figure out what body system was causing her so much pain.

I went for my checkup today. I received a lecture because it had been two years since my last appointment. Thankfully my ovaries seem fine, thank you. Just some other odd things that need taken care of. I also got the name of a doctor who does genetic testing. Sis and I are going to contact her.

Mom seems to be getting stronger every day. It's really bothering her that she can't get around like she's used to. Remember- this is a woman who went to a gym and worked out three times a week just a few months ago... I have to keep reminding her what she's been through, and that it will take time.

Right now we're planning our Christmas party that we didn't get to have. It will be on New Year's Day. We'll finally get all of those wrapped presents out from under our tree! It will be wonderful to have everyone together......

Saturday, December 25, 2004

Merry Christmas.........

Today I received the best present of all.

My mom came home from the hospital................

Friday, December 24, 2004

the best medicine.............

I made it to see mom today. What a difference a couple of days makes! She looks so much better. And now I feel better.

She'd been eating clear liquid stuff and keeping it down, so they let her order a regular meal. Of all things- she chose spaghetti! For some odd reason it sounded good to her.

This is the first food she's had in three weeks!! She said it felt really strange to have food in her mouth.

Sis showed up with niece and nephew. Nephew walked in with a stuffed monkey for mom. It was really soft and cuddly. Mom was snuggling with it and had it cradled in her arms like a baby when her nurse walked in. Without missin' a beat mom looked up at her and said, "look what I had while you were gone!" The nurse looked and then said, "you know I don't usually say things like this, but that's the ugliest baby I've ever seen!"

They say laughter is the best medicine...................

Thursday, December 23, 2004

How long does a real tree last?.........

They told us after mom's surgery that they hoped to send her home on Friday. Today is Thursday and she hasn't even been up walking yet. She hasn't eaten yet. I've lost track of how long it's been since she's had anything but liquids... I don't see any way at all they could possibly send her home tomorrow.

Which brings us to the next dilemma. Actually in the scope of things this is just a little glitch. Our family has always celebrated Christmas together on Christmas Eve. Dad called today and said they wanted us to get together and have our Christmas without them.
Ummm.... I don't think so!
It just wouldn't be Christmas without mom and dad. I conferred with my sis and she agreed. I then informed mom and dad that they had been out-voted and Christmas is on hold until mom is home.

Of course Santa will still come to my house.... Sadly this will be the first year that I will not have a child here who believes in Santa. But by golly he will come here anyway because I still believe!!

I was also wondering- how long does a real Christmas tree last? This is the first time that my parents have ever had a real tree. My dad and S went and cut one down. It's beautiful. I've been checking the water in the stand etc... I hope it stays nice until mom gets home because she only got to enjoy it for a few days before she went to the hospital.....

Wednesday, December 22, 2004

Mend fences.....Build bridges............

All of the exercising and taking care of herself paid off for my mom in a BIG way.
She made it through a very difficult surgery.
Now she will have to fight through chemo.........
The tumor was cancer and had spread throughout her abdomen. They didn't even bother to check lymph nodes.

Her oncologist was so upbeat about it all though- She said they got 95% of the tumor. She said they won't start chemo until after the holidays. She said the cancer may be like a chronic illness that will go away for awhile and then come back. ????????????

What a bizzare way to talk about cancer. Where is it going to come back to? I know it won't be her ovaries because they are gone!

There are so many questions I want to ask now that I didn't think of when the doctor talked to us after the surgery. But deep down I really know most of the answers, and I'm not ready to hear those answers spoken aloud.

I left the hospital yesterday evening. I have not been able to go back, thanks to a major winter storm, that has dumped tons of snow on the Interstate between here and there. I want so much to be there with her. I'm comforted by the fact that my Dad has been at her side the entire time.

So I will continue to pray, and we will take one day at a time.
Time is all we really have anyway- all of us......
So if anyone is out there reading this- kiss your loved ones- tell them you love them every day. If there's someone you used to be close to and aren't anymore- call them.
Mend fences, build bridges.... whatever cliche you want.

Life is short-make the most of it.........

Monday, December 20, 2004


I should be getting ready to leave. Sis and I have a hotel room the same place mom and dad are staying tonight.

The surgery is scheduled for early tomorrow morning. Because we are in a different time zone, we would have to leave at 3 am to get there in time. It will just be better to spend the night there.

I haven't packed, I haven't showered, I haven't eaten.... I haven't done Christmas shopping....
I'm trying to not think about that. We may be spending Christmas this year at a hospital........

Dad called awhile ago and gave me directions to the hotel. He said mom seemed to be doing fine.He doesn't sound fine.

I keep thinking that this may not be cancer. Even though the symptoms are there. Even though that damn tumor is there.....

Tomorrow will come, they will do the surgery and say, "Good news! It was a benign tumor! It's gone and everything is fine!" It just would not make sense for my mom to have cancer. She has never smoked, drank, or done drugs.. She has always watched her diet and taken vitamins. Up until a couple of months ago she worked out three times a week. I could never go on walks with her because she could walk so much farther and faster than me. It would not make any sense at all for her to be sick.

I believe in the power of prayer- and I have said so many prayers in the last two weeks. Please God don't take her. I'm not ready to be without her yet.

If you pray, please say one for my mom.......................

i love you...........

I went to work today. I was afraid it would be my last chance to work during this pay period. I was glad I did. I was (surprisingly) able to do my job, and talk with co-workers. I was afraid I would just cry all day. It really took my mind off of things to be there. No one asked about mom. A few knew that I had cancelled some shifts because she had been in the hospital. They've either forgotten or assume everything is fine.

When I was walking out at the end of my shift, Sis called me on my cell phone. She said the usual, "what are you doing, how was work," and then there was silence. It was almost like she had dropped the phone then I thought I heard her laugh. Then I realized she was crying so hard she couldn't speak.

I sat in my freezing cold car, tears streaming down my face, and just listened to her cry.

After awhile I said, "I almost made it through a whole day without crying! Thanks a lot!" She knew it was my weird sense of humor but she didn't laugh. She said she had been at mom and dad's. Mom is in pretty good spirits and dad told her he was scared to death.

In our family we've never expressed our emotions much- or at all. If you were sad or scared or upset about something, you just sucked it up and moved on. Over the last several years, things have changed a lot. I don't know what brought on the change or when it really happened but it did. We don't ever see each other without hugging and kissing and saying I love you. EVER. Some people may think that is weird. I'm here to tell you that I am so glad that every time I see my family or even talk to them on the phone, we always say, "I love you."

But to hear that dad actually used the exact words that he is scared to death...... That's a whole new thing. Dad says he loves us but never admits to being afraid.... Of anything......

Mom is handling this all better than any of us. She has always had very strong faith in God. She knows where she is going when she leaves this world. She knows God has a plan that she does not control. She has always said she wanted to live long enough to raise her children. (Her mother died when she was just 4 years old) She is now helping raise her great-grandson.......

She said as long as she knows we're all taken care of, then she is fine with whatever happens...............

Friday, December 17, 2004

Thanks for the info.............

Today is Thursday and we still haven't heard from the doctor.
Dad finally called and reminded them that it has been more than a week since she's eaten anything. They said they had the surgery scheduled for Tuesday and that they would call with the details tomorrow.

Oh- and they said you'd be surprised how long someone can go without eating! Ya- thanks for that info..........

Wednesday, December 15, 2004

hurry and wait................

Today was mom's appointment with the specialist. It's about a two and a half hour drive from where we live. Sis rode with mom and dad and I drove my car. We fully expected her to be admitted.
After being questioned by a med student, examined by a resident, and re-examined by the specialist, they said, "Yep- we concurr with those other guys." Well, those weren't their exact words but it was something like that.
They then informed us that they would have to work her into the surgery schedule and call us and let us know when to come back. They said we could expect a call by Wednesday.The words, "The sooner the better," keep playing over and over in my mind.....

Sunday, December 12, 2004


Sunday, December 12, 2004

Today, mom's doctors told her that they could give her a patch that would infuse pain medicine into her system continuously and let her go home.
They're convinced that she isn't going to eat anything solid and cause a complete obstruction. They think she will be more comfortable at home. As long as the pain patch does its job, I think they are right.

While they were getting the paperwork done, I went to get a Diet Coke. I needed one.... Before leaving the room, I told mom, "See that nurse call button? The nurses REALLY like it when you push that a whole bunch! Just push it as many times as you can!" (note: nurses hate that) Her nurse was sitting outside her room and hollered for me to go play in traffic somewhere. Mom laughed. (Thank you God)

When the paperwork was finished her nurse came in and looked at me and said, "you don't have that IV out yet?? What's wrong with you?" She handed me the stuff to take it out and I told her that we wanted a BIG discount for this. Mom laughed. (tyG)

i.d. please.............

Today was a very long day. I spent a lot of time at the hospital keeping mom company. I discovered that she wouldn't rest if someone was there, so I left for a few hours at a time so she would sleep.

Sometime during the evening, they transferred her to a private room. We were so thankful for that because she had the roommate from hell. This lady had a roomful of visitors which included a screaming three year old. The nurse finally came in and told them they would have to leave, "because the lady in the next bed was very sick and it wasn't good for her to have all of this commotion." (It was kind of a shock to hear mom described like that) Of course when the nurse left, the visitors from hell made all kinds of loud comments like, "No one better make noise on that side of the room because we'll complain," and more ignorant things along that line. Thing is we hadn't complained to anyone. It's just unbelievable to me that someone would not have the common sense to remove a poor screaming child from a hospital room.

Mom's new nurse came in and said, "How old are you??" My mom confirmed that the chart was correct, and yes, she is 70. The nurse said she really wanted to see a birth certificate, and called for another nurse to look at mom and guess how old she is. Soon there were several nurses peeking in. They weren't just being nice. Mom looks so young. I hope I inherit that from her.
While the nurses were going on about how young mom looked I pointed at my sister and said, "Hey look at her! She's 55!!" (My sister is only 38.)
My mom laughed. She laughed- Thank you God.

Friday, December 10, 2004

breaking the news.......

By the time my dad arrived with S, my husband was there. Sometime before my sister got there I had called them and simply said, "I need you." The angel gave S some crayons and a coloring book and hub sat down on the floor with him to color.

I think telling my dad what was happening was the hardest thing I've ever had to do. He sat down across from me, and in my 'be strong mode' I told him step by step what had happened. He turned very pale, and for a moment I wasn't sure if he was going to cry or faint. He stood up, took some quarters from his pockets and went to the soda machine.

He said this was the last the thing he ever expected to hear today. Then he handed me a Diet Coke because, "I looked like I needed it........."

the sooner, the better..........

The surgeon finally came out after the scope. He said the mass was pressing on her colon, and even though he tried smaller sizes he could not complete the test because she was almost completely obstructed. This explained all of the terrible cramping she had been having.He said he really didn't think the colon was involved. It is just being compressed by the mass. He said he saw on the chart that she was being transferred out and was in agreement with that. His exact words were, "the sooner the better."
He said she was in pain because of some air that had been trapped in her colon during the test, and they were going to keep her in recovery awhile longer.

My sister arrived almost immediately after the Dr left. I had been trying to keep my composure. I wanted to be in 'strong mode' when I told her what was happening. I motioned for her to sit and she looked like a frightened little girl. She could sense something was very wrong.I started to tell her about the mass they found and she stood up, started to cry, and tried to leave the room. The lady behind the desk tried to talk to her. Then it seemed like sis was just walking in circles in the waiting room. I know that sounds crazy but its how I remember it. All of this took just a few seconds, but in my mind it was all slow motion.

A priest walked into the room then. My angel behind the desk had called him, because she thought maybe he could help me. I'm not catholic, but any port in a storm.....He suggested that we go into a private room and talk. So here I sit in a hospital room with a priest, trying to explain to my sister what had taken place that morning.Every so often the priest said a few words. He had a very heavy accent, and was hard to understand. (The only thing I can think of is Jamaican.) We would look at him and nod...Finally my sister said, "Could you leave us alone? We have each other now." I was shocked! My quiet little sister asked the priest to leave. The whole damn thing would be comical if it weren't true.

Thursday, December 09, 2004

An Apple.............

The colonoscopy was scheduled for 8:30 am today. I offered to take S so Dad could go to the hospital. He said for me to go ahead and he and S would just come to the hospital after she was back in her room.

I know this was just a routine procedure, but I wanted to be there for mom. I also wanted to hear what the Dr. had to say afterward.

When I got to her room around 8:15 the gynecologist was outside her room on the phone and mom was lying in her bed trying to look brave. She said they found a mass while doing the internal ultrasound and the gyn wanted to transfer her to a hospital in another state where they have a specialist.

My 'be strong mode' kicked in. I put the top rail of mom's bed down and pulled a chair close so I could hug her. I told her everything would be alright.

When the Dr. didn't come back in for a few minites, I went into the hall to talk to her. I told her I was J's daughter. I was waiting for HIPPA bullshit. Patient Privacy. Blah Blah Blah.

There was no bullshit. She told me they found a mass the size of an apple on one of her ovaries. Because she has been having symptoms for awhile and there is a large amount of fluid in her abdomen, she suspects it is cancer, and wants her to see a gynecology oncologist. She would try to arrange the transfer today.

I asked about the colonoscopy and she said they were still going to do it because they wanted to be sure the colon wasn't involved.

By now it was after 8:30. Where was my sister? She was going to be there this morning.

They finally took her down for the scope around 8:45. I walked with her. I should say I ran. The nurses who wheeled her down the hall and into the elevators and around all of those corners are FAST! I guess after traveling the same path, day after day, you can navigate the maze quickly. When I caught up to them at the elevator, I asked mom if she heard me running behind her. She laughed with the nurses. She laughed. Thank you God.

They stopped outside the waiting room and I gave her a kiss and said everything will be alright.

I went into the waiting room, put down my coat and purse, started to sit down and burst into sobs. I tried to pick up my things and leave the room. I needed to get OUTSIDE. I needed air. I needed away from this place, away from these people. The lady who sits behind the desk in the waiting room called after me.

She stopped me, put her arms around me, and said, "Let me help you".
She held me while I cried for what seemed like forever and I told her what had happened. There is a special place in Heaven for this woman. She had never seen me before in her life, but I would have been lost without her there.

I sat down in one of the chairs next to a Christmas tree. It was decorated with shiny red apples. I kept hearing, "a mass the size of an apple........."

go lightly............

Mom is finally resting at the hospital. They gave her some pretty strong IV pain meds and she is pain free for the first time in months. They did an ultrasound today and have scheduled a colonoscopy for tomorrow morning. The surgeon who will be doing the colonoscopy came to see her and did a physical exam. He immediately said he didn't think it was a colon problem and said he would still do the scope to be sure, but was calling a gynecologist to see her. The gynecologist did an exam and ordered an internal ultrasound. When I left the hospital tonight she was drinking Go Lytely. The person who named that stuff should be shot because of their sick sense of humor. You sure GO after drinking it but there's nothing 'light' about it! The good news is she is feeling much better. The horrible pains have disappeared with the help of some good drugs, and she is confident they will finally fix whatever this problem is...

Wednesday, December 08, 2004

The call........

The phone rang at 3 am. I thought I was dreaming and didn't fully awaken until I heard the answering machine pick up. The caller hung up and immediately dialed back.I saw on the caller ID that it was my parent's house. My dad was calling to say he was taking mom to the hospital because she was in such pain. Their five year old great-grandson lives with them and he asked me to come sit with him.I had just had a conversation with mom around 8 pm yesterday. She was so frustrated with the abdominal pain she had been having. She has been to so many doctors in the last several months. They either tell her everything is fine or send her to someone else. She told me she had made an appointment with her family doctor for Friday and was going to tell her to please just schedule every test she could think of and find out what is causing the pain.I went to their house and fell asleep with the phone by my side.I awoke to dad coming through the door alone. They were admitting mom and scheduling some tests. I was shocked. We were sure they would finally give her something for the pain, tell her what the problem was and how to fix it and send her home

(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.