A weekend of rest

Well, I think I officially have cabin fever! I have been in the house for 2 days now, just letting mom rest. She has slept so much since we got back from Maryland. I have to make her get up just to sit in the livingroom for a few hours. She is very tired after the smallest task right now. She begs me to let her sit down all the time. She still is having some illness and I hope this is part of the problem and that it will resolve soon. I plan to get her out tomorrow a have her walk some. I hope it will help her some.

I have gotten some rest and more time with the kids, which has been good. I also finished all the laundry! But I want out! Jana is coming in tonight and I am looking forward to the break! I am not a person who can stay home for long!

Well, enough complaining. We rescheduled mom's MRI. I hope she will be feeling more up to the scan later. They are not going to change her treatment at this point, so we only have to have the scan done before we go back to Maryland in 3 weeks. We hope to be able to go back this week or next.

Now, let me tattle on myself and tell you about the thong "almost" episode! We had gone on the cruise, to Maryland and back and mom was sick and very tired. I had prayed all the way that she would not have to use the restroom on the plane since it is an ordeal right now. Well, we landed and got a wheelchair escort and went to the baggage claim area. I took her to the bathroom onher walker and she was practically running by the time we got to the bathroom. Well, wouldn't you know, someone else was in the handicap stall. It was all I could do to keep from knocking on the door and asking if they were done and did the really need that stall! So I take her into a little stall and it was very difficult. When we came out the very young, very able girl was standing there curling her hair. I just glared and glared at her and she paid no attention. She did not even seem to notice us. After I washed my hands the only towels in the bathroom where right next to her. So I very kindly stood right in her way as she tried to curl her hair and very slowly dried my hands! I was so angry at this point. I had fought with the insurance company, been hurried by a flight attendant (for no apparent reason) watched my mom try to eat a sandwich on a turbulant plane, etc. etc. etc. Things had just piled up too much. So I finish drying my hand and get mom ready to go. As we are about to leave the girl was bending over her numerous bags and her thong underwear was sticking out ( a pet peeve of mine anyway). I was right there next to her and thought I just want to yank it! I couldn't believe I thought that! I had to hurry and leave the bathroom because the thought brought a smile to my face! It is embarassing now, but such a temptation at the time. So if you are around me please keep your thongs hidden and out of site!

We are home!!!!!

The nurse practitioner from NIH called last night and said mom's electrolytes were fine and that it was safe to fly home. She said the other test would be back tomorrow and then again on Friday. (They ran several) She did tell me they wanted mom to have a septic work up once we got home. So I called mom's oncologist and he said he would like to see her as soon as we got in and he would probably have to put her in the hospital.

We took a shuttle van from the hotel straight to the airport (instead of changing vans twice and having to go through NIH security again to take the free shuttle). Jana and I thought it would be easier on mom this way (and me too!). We arrived at the airport in plenty of time which allowed for a much calmer trip. (I'll try to blog some of the crazy mishaps later- you know they happen to me! I'll try to remember to tell you about the almost wedgy episode when I'm not so tired!) We went straight from the airport to the doc's office. He redrew blood work, got the results from NIH and looked at mom. He thought our problems were centered around medication side effects and took her off Prilosec. I talked to him about stopping several of the other drugs as well. I feel we are giving her a chemical soup several times a day. He agreed so she is now just on her steroids and antiseizure med. He also is treating her for a UTI. He said the blood work looked better (it was in normal range today) and allowed us to go home!!!!!! He seemed to think that the clinical trial was possible. He has never been gunghoe for this so he is not excited or anything!
But we are hopeful. I should be talking to the nurse practitioner again tomorrow to schedule or next appointment in 3 weeks. We are having the spine MRI tomorrow afternoon. The NIH doc wants to make sure there are no new tumors that are causing her back pain. If there are, I am not sure what we will do. I don't know if it will keep her from being in the trials or not.

Thank you for your prayers. I really needed them today. I was angry a lot this afternoon (hence the almost wedgy episode) but am much better tonight. Mom has had a much better day today, even with all the traveling. I believe God hears you guys!!!!!

Our cruise and our trip to NIH

Our cruise to Cozumel was both great and disappointing. The weather was cold, cloudy and rough waters on Sunday. Friday we woke up to very overcast skies and cool weather. We were prepared of 80s and I think it was somewhere in the 50s. The wind made it seem cold. The kids did get to swim some, but we did not sit by the pool all day as we had hoped. We enjoyed our dinner each evening. We were at two different tables because there were so many of us. On formal night the kids decided to go to the Camp Carnival and that let us all sit together and enjoy a fairly quiet dinner. (No dinner is quiet with Brianna - she can and does scream rather loudly when not fed fast enough to her liking!) Hogan also ate with us because he was running a fever. We got some great pictures of mom and us girls on formal night as well. Each family also got a family photo. Jana and I surprised Brad and Steve with pictures of ourselves! Emily did show up in Jana's pictures though:-)

The beach was great. We got up early and took the kids first thing in the morning. We caught a taxi to the private beach and were the first ones there. It was probably 1 and1/2 hours before the bus arrived dumping others onto the beach. The kids ran up and down the beach laughing and making lots of noise until everyone else came. They swam in the ocean and the pool! Mom got a 1 hour massage on the beach! They had a buffet lunch as well. The weather was cool but nice and the kids swam a long time before complaining of being cold. We were all able to sit in the sun and relax and play with the kids. The disappointing part was the ocean was too rough to put the water trampoline and climbing iceberg out. I don't think the kids missed it though. They had a great time.

On Sunday coming home the ocean was very rough. Many people were sea sick. We were all a little queasy but okay. Mom had a rough time though. She had trouble staying awake to eat and began hallucinating. We were very concerned, but we gave her meclizine and put her to bed. She slept all afternoon and when the ship finally quit rocking and she woke up, she was better. The waiter at our table had been sailing for over a year and never experienced such rough waters!

We spent most of our time eating and talking. It was really relaxing, even though we seemed to stay fairly busy. It was really nice not to have to cook, clean or work. We just got to visit and pay attention to mom. Sometimes I think I am so busy at home that I don't visit with her enough.

So, we got in on Monday and Tuesday afternoon we took a flight to Maryland. We had a good flight and made it to our hotel fairly easily. The only glitch was that we were sneaky and took the other hotel's shuttle to avoid a cab fair. The driver took us right inside and placed our luggage right in front of the counter! I was horrified. The others with us checked in and we went to the restroom! The lady that was helping us got our luggage and met us in the lobby. She walked around and they asked if they could help us. She said she was looking for the restroom! We went right back in after her! She then stood at the door and kept peeking out to see if the driver was still standing there! She said this is like being in a spy movie! I was dying. I told her I would just go ask how much their rooms were and say I wanted to check next door (where we already had reservations) She said no, just wait. And since she had our suitcase, I waited! Finally, the driver walked off and she shot out of the restroom and down the hall, with mom and I in hot pursuit. She the walked us next door in the rain to help me with the luggage and mom. She was very sweet, but it was quit funny too. I think she was enjoying the cat and mouse game. I was so embarrassed. (I never could get away with anything, even as a kid!)

This morning we took the right shuttle to the National Institute of Health. We had to go through security again (went through last night just to catch the connecting (improper) van to the hotel). They check your ID, send everything through airport style scanners and you through a metal detector. They then got to the van and rub the steering wheel with a wand looking for traces of explosives! (At night big concrete barriers come up out of the ground with gates and cables to close the gates!) Very high security for a hospital!

We then found our way to the admissions to check in through an interview. Then they sent us to the 12th floor where we check into the clinic. The nurse interviewed us and then took us to see two nurse practitioners and finally Dr. Fine. Everyone was so nice and on time! We were in a room waiting for Dr. Fine to come in 15 minutes prior to our scheduled time and he came in!!!! He was very informative. He did not recommend surgery, because the part of the tumor that will cause to most problem is in the most sensitive area and not able to be remove. It sits in the corpus callosum. He said it would not benefit her that much and might cause more deficits. He said we could get BCNU or carboplatin at home and come in for check ups/scans every month, but if we wanted to be more aggressive, then he would but her in clinical trials if she passed the eligibility requirement, which is to not have hemorrhaging in the tumor. The problems are we have only been off Temodar for 1 week and we have to be off for 4 weeks. So we have to wait 3 more weeks before we can get a scan to determine if there is hemorrhaging in the brain. Next, is that he was very concerned about her. He thinks she has an infection somewhere and is running some tests. (She has declined rapidly in the last week) He said they would call us with the lab results today and tell us if we should go home tomorow for follow up there or if we needed to go to the ER here. I was a little surprised that he thought she might need immediate medical attention. I think we have assumed we were watching tumor progression. I almost hope there is infection so we can treat and get improvement.

If we join the clinical trial I want her to be in, then we would have to come to NIH every 2 weeks for IV Avastain and scans every other visit. He said that out of 80 patients on Avastain in his care almost everyone of them has improved and some very dramatically! He said they would give her the first infusion and then do a scan in a day or so and could tell us that soon if she was responding to the drug. If not then, we would move to another study.

The second option for clinical trials was 2 drugs combined. He gave us a brief outline for these because he is hoping to qualify for the Avastain. These drugs would be pill and IV. We would give the pill at home and come every 4 weeks for IV and scans. So this would make traveling a lot easier.

We have a lot to discuss, but the hopes of clinical improvement are definitely weighing heavily on our minds. There was no mention of double blind studies or anything. We would get what we are coming to get! Pray that God will give us wisdom in our decisions and there would be not bleeding in the brain if that is the drug she needs to take. Also more immediately, that we would get good blood results and be able to come home and be treated at home.

Increased Steroids

Well, we had a great weekend away. I slept until 1000 one morning and then went shopping. Sad thing is that by 1200 I was very lonely. Still it was good. I came back rested and relaxed. And it is a good thing. We have been very busy this week. Mom began falling again on Saturday while Anna was with mom. She had about 3 “falls” that were almost harmful. When we say fall usually we mean she began to fall but we were able to break the fall or most likely put her down on the ground gently. But on occasion there is just not any thing that can be done. So far the most damage she has done is skin up her knee. She also called Anna “Becki” all day on Friday. Mom’s cousin had come to sit with her that morning and her name is Becki. (Becki said they had a wonderful morning reminiscing about their childhood, etc.)

Anna kept her home Sunday until some friends came to get her. They went out to eat and to a movie. Apparently, they had some difficulty getting mom out of a restroom and had to crawl under to let her out! Then on Monday, mom went to work with me and fell 3 more times. One time was very scary. We have about 3 steps going into the office and she got up two and then began to have leg spasms. I got behind her and braced myself hanging on to the hand rail and wall. I had mom sit back on my knee. This kept her from falling. I then had her lean forward and twist around to sit on the next step. I then had to call the nurses to come help me get her up. We took her back out to the car in a wheelchair.

Next, on Monday afternoon, we had a consultation with a medical oncologist at UAMS to see what they had to offer mom. The good news is that they use both CPT11 and Avastain. They use CPT11 as a second line drug meaning when you have tumor regrowth on Temodar and radiation then you get put on CPT11. If you have tumor regrowth on this then you get Avastain. Then if you have regrowth you begin Thalidimide (the drug that caused so many birth defects in the 60’s). They will not combine the CPT11 and Avastain together. You have to be on clinical trials for that. The Avastain can be very hard on the body. So, she uses it with great caution. She wanted to get an MRI to see why mom was declining clinically to make sure we could wait for our appt. in Maryland. She was encouraging when discussing clinical trials. She said there are also some new molecular drugs that look promising.
Well, I decided we could be in Maryland probably by the time the MRI was read here. So we ran around like crazy people begging for medical records to be expedited. Jana began looking up flights and travel distance and routes to the hospital from the airport. On Tuesday morning, I began calling the NIH at 700 in the morning. By 8:15 we had an appointment for Wednesday at 10:00. We then ran around again gathering the remaining medical records like the slides, films, etc. By 1:00 we were headed to the airport. I parked put mom in the wheelchair, hooked the small suitcase to the chair, placed my backpack on my back and told her to strap herself in. I ran from the car to the terminal! One man looked at us and said she makes that look so easy. I could respond for panting! We got checked in, had boarding passes and were holding our hands out for the security pass when they announced they had cancelled the flight due to snow!!!!!!!!!! I about cried. We had cancelled her 11:30 MRI to make the plane! We tried to figure out if we could take the later flight, but of course it was full and they were talking of closing the Baltimore airports. We talked about flying into a nearby city and driving in and quickly decided that driving in the blizzard might not be the best thing for mom. So, we accepted that door as closed and went home. We rescheduled the appt for next Wed. (They were not real encouraging about the weather either. TheSent. sent all it’s employees home and they were not sure who would be able to make it in the next day anyway.) Mom also called me Marletta after the airport adventure. For the first time I could not redirect her. She did not belief that I was not Marletta. She kept asking about Buck and his job. Finally, I said I didn’t know where Buck worked and in that demeaning tones only a mother can use said “Oh it is one of those situations then huh?” Like I was married to Buck and didn’t know where he worked. We had to change subjects before she came back around and realized that I was Angie.
So, we saw Dr Baltz today. He increased mom’s steroids to 4 times a day for a total of 16mg! He said, “You do realize we have gone from 2mg to 16mg in just 6 weeks.” So he is very worried about her. He did not feel the MRI was necessary at this point. He said he thought it was important that we continue with the cruise “come hell or high water”. So we are keepinAndhe Wed appt. and headed to New Orleans tonight. We are all very concerned about mom and worried, but I too think this cruise is very important. Sometimes quality outweighs quantity. We look forward to all being together and having nothing to do but spend time with each other and mom. We look forward to watching her enjoy her first cruise as well. We will deal with reality again on Tuesday.

A Cruise! and Clinical Trials?

Well, I seem to blog less and less frequently. I guess the activity has died down a bit and I have trouble finding 15 or 20 minutes most days. When I sit down I fall asleep right now. We do have a lot of things going on though. I apologize for the infrequency!

The best news we have right now is that we have booked a cruise!!!!!!!! Yes, everyone is going including all the kids. The big regret is that Josh will not be able to go. He will start classes on the 12th and if he misses more than 8 hours they have to hold him back for the next class. Have I told anyone how proud of him we are?! There will be 14 of us all together including 7 children! We will leave from New Orleans (just as they begin to celebrate Mardi Gras L) and cruise to Cozumel J! It will be a 4-day cruise and we are very excited. We had planned on going in the summer but when we found out about mom’s tumor regrowth we decided it might be now or never. I called the travel agent and said we want a cruise in 2 weeks for 14. She called right back with great prices and great news. We had less than 24 hours to decide and then we were thinking about where to find a swimsuit this time of year!

Then as soon as we get back from the cruise mom and I are headed to Maryland! The National Institutes of Health is located in Bethesda and we have an appointment. They have some clinical trials going on there that include the 2-chemo drugs we are interested in for mom. We do not want to take her up there to stay for an extended period of time and the thought of traveling frequently with her is bothersome. She is doing well but she does tire easily and hurried schedules are difficult for her. So, I guess we are going to see what they say. If they tell us there is really nothing else to be done then we will have to be satisfied I guess. It is just really hard to give up and wait to put her in hospice. She is too young for this. I read a cancer message board and so many are even younger than mom, many with children still at home. It makes me weep, but I also realize how blessed we have been to have mom for 61 years, especially in such good health.

Mom is doing well though. The oncologist Wednesday said that she was still an A+. He said that he thought she was mentally sharper this week over last week. She does not always answer his questions correctly, such as who is the governor etc., but she knows what you are asking and the generally direction of questions and conversation. He even asked her who the governor of CA was. I was shocked at such a difficult question, but I realized he is looking to see how she responds and figures out how to answer. He is looking for her to understand the questions he asks. He was impressed that being just 8 weeks out of radiation, she is still engaged with others. He said that often times there is nothing funny at this point and we were laughing in his office. He said that many times patients just lose the engagement and do not really focus on anything. So we are very grateful for mom. Also, we talked about how pleasant she is still. Often patients on high doses of steroids really turn angry and mean. Mom is still a lot like her old self, just very pleasant and agreeable. She does not laugh as often as she used to and conversations are difficult at best, but she still loves to be around family and friends. She watches TV and reads magazines and newspapers. She even cut out a classified add the other day to apply to be a firefighter! That really gave us a laugh!

We are still fighting a little yeast in her mouth but we are keeping it down to a gentle roar so far. I am afraid it will flare though. Also, her back has really been hurting lately. We say her doc last week and went back again yesterday. She injected the sciatic nerve with steroids and this seems to be helping more than anything else. She can move around better and grimaces a lot less. She was really in a lot of pain over the weekend. But we went to Wal Mart last night and she walked all over the store for about 1 hour. Her back hurt but she did great.

Steve and I are currently headed to Dallas. He has a business meeting tonight and tomorrow and I have a date with the sand man!!!!!!!!! I have everyone farmed out for the weekend and Anna will be with mom. Pray for her I think it will be a little hard for Anna. She has 4 kids and a full plate. She told me though that she did not want to come over tonight to get mom and find me sitting there! Mom will be with her cousins today. They have been so good to her over the years and especially the past few months. They are there whenever I call and that is such a big help to me. Thank you Becki and Joan!

And thank you to the rest of you that come and sit, have provided meals, cards, phone calls, plants, gifts, and most of all prayers. We covet your prayers so much. (I don’t think this breaks a commandment!) To know all of you are praying so hard for us is such a blessing. I can’t tell you how much that comforts me. On the days I fall asleep before finishing my prayers, or I am so sad I simply can’t put a sentence together, I know you are lifting us up to our wonderful heavenly Father and He always listens, always! I don’t know how anyone goes through this without faith in God and without such wonderful Christian brothers and sisters! Thank you! Thank you! Thank you! Mom would love it too!