Not so good any longer

[Lillie]

I don't post often I mostly read. My mama has had a rough few weeks now. I went by the hospital on Monday to pick up mama's reports on her scans.....More bad news I didn't tell mama I figure let her sleep well that night. Basically it said the lung cancer has progressed significally since the last exam, she has copd, more fluid on the lung, For the liver it says innmuerable varying size masses throughout the liver consistent with extensive metastatic disease. Several enlarged lymph nodes in the celiac/ periPancreatic area. The above findings represent a significant detrimental change. I took mama to the dr. ionWed. morning and she l found

On our way to the oncologist mama told me that she looked for him to really give her a good report because she felt good. My heart sank to my feet but I couldn't tell her. As Dr. Meshed came into the room he asked her as he always does how she felt, she said good, how are my reports. He said not worth a darn. Everything is much worse, there is more cancer in the lung and more in the liver. As he said this he was walking toward mama and bent down to kiss her and said but you look good 'Do you want to mess around' I popped him on the head and said HEY that's my mama you don't talk like that in front of me (In a joking manner) He always cuts up with mama. When she was in the hospital with the chest tube in and they had put the stuff in the tube to help the lung and lining seal back and mama had to roll around in bed he said 'I think I'll climb in bed with you and we can roll around together.' He always makes her laugh. Any way he said he looked over all the chemo's that she has done and there is a pill form of chemo that he would like to try called Vepesid. She will begin the pills next Wed. Take two pills one day one pill the next day for 2 weeks, take a week off and then see him. He then told her how she had beaten every odd, she is a strong lady, and he hopes to keep her feeling good for a while longer yet. So we have a new plan, all we have to do now is hope and pray this one works.

Finding the new chemo pill has proven to be quite a task for me today. It seems that these pills are so very expensive that most pharmacys want a gurantee that you will purchase X amount because they don't want them sitting on the shelf until they lose their shelf life and since mama's prescription is for only 21 pills I've phone everywhere (not exactly everywhere but a lot of drug stores) I finally located one that will get me the pills they are ordered and the insurance company is paying for them all except a $20 co pay. I guess that is what I get for living in a small rural area.

Mama got up in trouble yesterday morning. She couldn't breath. I phoned 911 and she was transported VIA ambulance to the hospital. She was full of fluid again. She was drained VIA chest tube about 2 weeks ago. The pulmonary dr. drained her with needle. I showed him mama's CT scans and he said he would not put her thru any procedure that would not give her comfort. At this point he says her comfort comes first, and he said by all means for her to start the new chemo pill. He said as long as mama does not get sick from the chemo to do the chemo. So far mama has never been sick from her chemo. I got her back home yesterday afternoon. Mama sent my sister to get her prescription for her inflamation pills filled. My sister came back and put the new prescription in the old bottle(yap yap our name for my sister because she talks so much. said mama told her to put them in the old bottle) Last night daddy called because they can't find the nausea pills and says Yap has messed up mama's medicine. When I got there I found that mama was out of the nausea medication that she has been taking. Mama then said Yap was suppose to have had them filled today. I told mama no you sent her for the inflamation. So I got the bottle for nausea and the prescription has expired. I told mama I'd call the dr. tomorrow and get a new prescription. In the mean while I had phenegran pills there so I got those out for her and then she said she didn't need them. I asked her why did she have daddy look for the nausea meds. she said she didn't know. Then I found out she had taken her morphine. It always makes her loopy. So then I told daddy its just the morphine 'mama's high' WOW never thought I'd be telling daddy mama's high LOL. Sometimes when she has a morphine she talks about some crazy stuff. At least she is mostly normal talking just occasionally a little high

I think things are setting in finally with daddy. Yap told daddy if things continue like this mama won't be with us long. Daddy said oh no she will be here for a while. Yap asked me to talk with him. So yesterday at the hospital he asked me which opened the door for us to talk. I told daddy I had the scans and what they said. He wanted to know why she had fluid again so soon. I then explained that the lymph nodes were all full of cancer now and that lymph nodes carry off fluid and mama's can no longer do their job. I think he understood. He asked me what we could do to stop this from happening. I said nothing daddy our time is running short. He then asked me how long did I think mama had. I told him if this new chemo works we could have more time, if it doesn't we will probably be lucky if she is here for Christmas. He then said we need to see if there is anything else mama wants to do.. He asked me to go plan mama's funeral. I told him I could handle it. He said where did I want to take her. I told daddy mama had mentioned to me the other day that as soon as she felt better she wanted me to take her to Radneys(funeral home in Mobile) to do her funeral. I told him I had told her I would, but that I haven't mentioned it to her again because I thought if she wanted to she would tell me. He then asked me if I thought Radneys best. I said no, I think it would be better for us to have it at Serenity's in our area. It would be more convent for us. He agreed. Then he asked me what church? I told daddy I didn't want to transport her to a church I thought it would be easier for us all to do the chapel at the funeral home. He agreed. He then asked me what did I want to put in the obit for the paper. I said daddy I can't see bragging about all mama's accomplishments, anybody that knows us knows her accomplishment, I just want to put she was your wife, our mother, and the grands grandmother. He agreed. He asked about flowers. I said I never thought about flowers daddy how do you feel. He said no flowers. They just leave a mess for somebody to clean behind to make donations to cancer fund, or some other worthy cause that suited us kids. Daddy went on to say mama didn't have much insurance probably not enough to bury her with just to let him know what was needed. I told him I would handle it all not to worry. He then said mama wanted me to have her car. Mama has a new cadiallic. I told daddy I didn't need nor want mama's car just to leave it in the garage and he could use it. He says no he doesn't need it either. So I just said we will leave it put till one of the kids needs a car. Daddy told me when mama passes he thinks he will shut down the net shop, get in his truck and just head west to see the country for a while and I said do what makes you happy daddy. So you see I think he knows now.

This is one of the hardest things I've ever been thru in my life. Here I am posting and I don't really have a question other than has anybody did the pill Vepesid? Stupid for me to write such a life story just to ask about one pill but it helps to get it off my chest and if you read all this thank you for caring. Hugs Lillie

[Donna G]

Sounds like you have a very nice family. I m so sorry that you have to deal with this disease and it is threatening your Mom. My husband and I are heading down to Gautier, Ms the end of the month and check on our house and visit friends, we'll wave as we go by. I'll be thinking of you , your Mom , Dad, and Yap Yap. Donna G

[ginnyde]

Dear Lillie,

I got a good laugh over you calling your sister Yap Yap.

I hope the chemo pill helps your mother. This is a difficult time for a family and it is wonderful that you are all together.

Ginny

[Ry]

Lillie~

I don't have an answer regarding your question but I sure did enjoy reading your post. We have the same problem with my husbands medication, Iressa. It is so expensive the drug store will only order it as needed so we have to call the presription in a few days before it runs out.

I hope the oral chemo works for your mom. All the best to you and your family. Keep Yap away from the meds.

[niececola]

Thank you for sharing your story with us. My mom got a laugh out of Yap Yap, they are thinking of calling me that from now on!

You and your family are in my prayers.

Denise

[norme]

Lillie,

I have read your post and feel quite sad at the present time but you know what, this cancer can turn on a dime. Just maybe the new med will help her and turn things around. There is always that hope.

[john]

Vepesid is etoposide. Etoposide can be given by pill or IV.

I read that your mom was previouslly on etoposide. It seemed like she had a response.

Etoposide is usually given with another chemo, but I read that there can be significant prolonged survival as a monotherapy

[Guest kate218]

Dear Lillie,

I'm sorry to hear about your mamma. You were the one that gave me and my Dad the hope for TAxol. It is working for him. I will pray for you and your mamma. Have faith. You never know which drug will do the trick.

Kate