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Party Pictures . wish list . Information after August 10th Information about EileenAugust 10, 2002Mom is eating again, although still not quite as much as she should. The medicinal marijuana is helping her appetite a lot. It takes much less to stimulate apetite than to get "high," but mom has a pretty low tolerance, so we're still experimenting to get the right dosage. Cannabis is also an anti-inflamitory in low doses and a pain killer in higher doses. It doesn't conflict with any other medicines and can be injested in many different ways. We're giving it to mom in cookies. This stuff is a life saver and it's got her eating again. Because of California prop 215, it's legal under state law for mom to use it. But it's still a federal offence. The doctor told us not to worry though. Even though he described the federal government's policy as "insane," he says they are targetting groups like the Cannabis Buyers Cooperative and not patients. To fight this, the CBC has a huge amount of paper work and several types of verification. It took some days to get through the process; days when mom wasn't eating. But we're through it now and it's working great. In the days when mom wasn't eating, she was also slowly losing use of her right arm and leg. The physical therapist says we can try to get her to use her right arm and leg more and that will help her regain use of them. How much use she'll get back is unknown. And trying to use the right side of her body is frustrating, so mom doesn't want to work on it. Since her leg is not working, mom can't walk without a lot of help. If someone can help her place her right leg, she can start to get the hang of it, but she gets tired very quickly, after just a few steps. We're going to rent a wheelchair because her walking range is so short, especially when she's tired. And she's tired a lot as she seems to be suffering from the radiation fatigue that most patients get. A high protien, high carb, low fat diet can combat this, but mom isn't on that diet because of the small amount that she's eating, we're just putting the most calories in her that we can. As we get her calorie intake stabalized, we'll switch over to the proper diet. Hopefully, that will help. The afternoon is still the best time to visit. She's home from treatment without much to do but without the energy to go out. Some of you might be thinking that it would be best to wait until treatment is over and she feels better to visit. But during treatment is when she most needs to see friendly faces. Also, sadly, only about 1% of patients with glioblastomas go into true remission with treatment. Happily, though, more than 80% of patients have slowed tumor growth or tumor shrinkage. It's impossible to predict what group mom will fall in. So see her now and see her again when she's in remission. You could eat finger foods with her. She can't quite manage silverware, but she can eat small sandwiches, pastries, quesadillas or anything else she can fit in her hand. (We don't try stimulating her appetite until dinner time, so she might not eat any finger foods with you, but it's worth a try.) Nothing cheers her up like seeing friends. August 4, 2002When I saw my mom today, she was talking better than she had been in a week. This is very encouraging. Mom has been refusing food for the last several days, though. She's not naseous, she just doesn't want to eat. She seemed to indicate that she's trying to diet, but she's already lost all the weight she might reasonably want to lose and then some. She's been feeling blue lately too, which is unsurprising given how little she's been eating. the doctor suggested we try medical marijuana to stimulate her appetite, but if you know of any foods she can't resist, please give us a hint. The doctors say she should be on a low fat, high protient diet since that helps combat side affects of treatment, but really, we'd like to get any calories in her that we can. Since eating is a social activity, I think it might also be helpful for her friends to try to eat with her. We've updated the wishlist with this request. 408-725-0644 August 3, 2002The treatments my mom is getting seem to be working. So far, she isn't showing signs of fatigue or side affects, but the daily trips to Stanford are tiring her out a bit. She's very energetic this weekend, since she's been able to relax at home all day. She still loves having visitors. The treatment is Monday through Friday around 1:00, so she's home around 2:00 or 3:00, depending on whether or not she needs to meet with the doctor. They like to check in every other day or so. So the best time to see her is the afternoon. We're tying to get her physical therapy started up again, since she's doing so well in the treatment and has the energy for it. Nothing is scheduled yet, though. She'd love to have you stop by. Just give a ring first to make sure she's home. 408-725-0644. Talking on the phone is not working for her very well, it's best to see her in person. It makes her day. July 30, 2002I am very happy to report that the new medication is making my mom feel much better. She is eating and able to walk, although she's still pretty tired and has been staying in bed today. She's in good spirits. Also, she will finally be beginning her treatment tomorrow! When she had her surgery, the doctor said to start treatment, "by the end of the month at the latest," so we're just slipping under the wire. She'll be going in for treatment every day. It only takes a few minutes, though, so she'll still be able to have visitors. This treatment lasts six weeks, monday through friday. As it goes on, there's a possibility she may get radiation fatigue. Brain tumor treatment doesn't cause a lot of the side effects we associate with other cancer treatments, but patients can still find themselves getting gradually less energetic during the treatment and for a couple of weeks afterwards. So she might be at her most energetic right now, at least for a while. July 29, 2002Thank you to all who attended Eileen's birthday party! She had a great time and was happier than I had seen her in the last few days. She's been feeling blue, but seeing her friends cheered her up immensely. She kept saying, "I can't beleive it!" in happy awe as she saw people she knew gathered to celebrate her birthday. She had a great time and I hope everyone else did too. Unfortunately, in the last day she's taken a turn for the worse. She was unable to walk today and felt ill. She's on a new medication that will help with her feeling sick and we hope that if she feels better, she'll be walking again. Seeing friends would also help her feel better. I know some of you have been calling to see her and have been told that's she's sleeping. We've decided that the happiness she gets from seeing people is worth rousing her from a nap, so from now on you all will be able to see her any time unless she's very ill or at an appointment. Her memory has gotten worse (hopefully this will also improve as her stomach feels better), but she's still recognizing everyone. Some of you may have been reading this and are wondering why her treatment hasn't started yet. We're wondering that too. First, some of the specialists were hard to get appointments with. Then a referral got messed up, costing another week to get one someone else's schedule. Now, incredibly, mom's insurance is taking it's time about approving radiation treatment. We're trying to pay for her treatment out of pocket, but it's confusing to the hospital because they're so used to dealing with her insurance. Ironically, she'd be doing better now if she didn't have insurance. My dad is contacting a lawyer in the morning to see if we can force things to move along. I'm so glad we had her party yesturday. If you missed it, you can still come see her at home. Thanks so much. July 26, 2002Eillen had her first consultation with a radiation oncologist today. They plan to start treatment next week, after getting some more information from Los Gatos Community Hospital, where she had her surgery. And an improvement in speech is apparent since yesturday, so I guess I spoke too soon when I said the steroids weren't helping it. We're starting her on speech therapy asap, probably next week, because the radiation oncologist says the fatigue in the first week isn't nearly as bad as the pysical therapist told us. So things are going well. The biggest challenge is keeping track of all the doctors! Mom's morale is still pretty good. the best morale booster is having visittors, so please keep stopping by, just give a ring first because she's still taking naps periodically through the day. 408-725-0644 July 25, 2002Eileen's physical therapist is noting several definite improvements over the last few visits. Mom is stronger and her apraxia is improving. The physical therapy build muscle and rebuilds her brain's control over her movements, so it's a big mental workout as much as a physical one. Also, her increase in steroid dosage has been helpful in increasing her steadiness. She still has not had any speech therapy and the steroids have not improved her speech as much as we hoped. However, the physical therapist assures us that speach therapy will help. Mom is excited about her birthday party. She also has greatly enjoyed all the visits of everyone who has stopped by. She hopes you can continue to come visit. If you need directions to the birthday party, click here then click on the words "view map" next to the address of the park. Or you can call (408-725-0644) or send email. I hope to see you all on sunday July 22, 2002Please note that the birthday party is on SUNDAY. this is a change from an earlier mis-post. Eileen'sBirthday Party will be at Monta vista Park at 3:00 PM on Sunday, July 28th. It will be a potluck BBQ. Please bring food and yourself. We will provide the cake. Monta Vista Park is on the corner of Foothill and Voss Road in Cupertino, uphill from Foothill and Stevens Creek. See the online invitation for more information and to RSVP. If you're having trouble with the invitation, then don't worry about RSVPing. Today we saw another oncologist at UCSF for a second opinion. He had just about exactly the same opinion as the Stanford doctor, so we'll be beginning her treatment at Stanford very soon. In other health news, there's a national shortage of the type of steroid my mom is taking. Don't worry, we can get it, but in responce to that shortage, one of her doctors decided to see how well she would do on half a dose instead of a full one. It turns out she needs the full dose to keep brain swelling down. Therefore talking to her is a little difficult right now and she's very unsteady on her feet, but we should see an improvement in the next three days or so as the larger dosage takes affect. I have created an online calendar so folks can see when my mom might have time to see them. You still ought to call before dropping by in case she's napping, so don't worry if you can't view the calendar for some reason. 408-725-0644 July 19, 2002today we spoke to an oncologist at Stanford about further treatment options. He was optomistic that radiation and chemo therapy would be very helpful in the short term, improving both the length and quality of Mom's life and improving her ability to communicate. He also told us that chemo therapy for brain tumors doesn't tend to cause the sort of sickness people normally associate with chemo and that she ought to feel pretty good during the treatment. Additionally, he said that although Mom has some communication problems, she's thinking as well as ever. We still have to talk to the oncologist at UCSF before we start doing anything, but we're very optomistic. We saw a lot of rapid improvement after the surgery. now, however, we're most likely to slow improvement as she gradually relearns the things she lost. a daily improvement is still evident, just not as fast as before. Mom gets tired easily, but she's still ambitiously working to re-learn old skills. sometimes she gets discouraged but we've discovered her morale can be improved by visitting with friends, good food and seeing new things, either by car trip or just by walking around the neighborhood. We're going to be trying to get her out of the house more, to keep her happier. hold the date: we want to have mom's birthday party soon (did you know she turned 65 on june 21st? don't tell her i told you.). We're thinking next saturday. the location is still TBA, I've got to call the city about reserving a BBQ spot in a park. Look here for more info soon. July 14, 2002Eileen continues to improve. Last night she said she wanted to go for dinner, so we all piled in the car and headed to the Distillery in Moss Landing, the restaurant she said she wanted to go to. We had a fine time. Mom's speach is also much better. Often, though, the word she wantes is just on the tip of her toungue and she just can't quite get it out. Unfortunately, this flusters her, which makes it worse, so carrying a conversation can sometimes be a bit akward. Bringing pictures of people and events that she's familiar with would still be an excellent activity. So, in general, things are going well. Mom's morale is high. she is very happy about the people who have come to see her so far and hopes more of her friends come by. July 12, 2002If you saw my mom one week ago and didn't see her again until today, you would not believe it. Her memory is better. She seems to have regained a lot (if not all) of her sight on the right hand side. She's reading multi-sylable words and sentences. She is energetic and on the move. She can still understand more than she can say and she seems to understand a great deal. If she's not tired or nervous, she can say a great deal too. I'm really astounded at her recovery. When the doctor said she'd be up on her feet and walking and talking again, I had a dismal picture in my mind. Instead, she's running (and I do mean running) around the yard doing watering. running around the house. running running running until she gets tired. She's still sleeping a bit more than usual, so give a call before you visit. When we ask her what she wants to do, she just talks about how great her friends are. No new information, but I just wanted to say that if you do want to visit Eileen, soon would be an excellent time. She's doing very well after her surery and will likely start additonal treatment, like radiation soon. We hope this will send her tumor into remission, but it will also make her feel sick. right now she is energetic and feeling good, but within two weeks, she may be coping with the side effects of radiation therapy. Some of you may suspect that she is feeling very ill now and not up to visitors. Not so! The surgery was like a miracle, but who knows how long this will last. You'll make her day and maybe yours too,s he's still a lot of fun. Just an additional note that the temporal lobe, the part of mom which was affected, also controls fear, so sometimes mom feels intimidated by large groups of people. When you say hi, tell her she looks good. I know you guys will do this anyway, but she needs a bit of reassurance. July 10, 2002Eileen is home now. She is walking as well as always and starting to use the phone. She comprehends almost everything she hears, but she may need to hear it a few times. There are still problems with "high-content" words, like nouns and verbs and she uses many pronouns interchangably, so figuring out what she's trying to say is often difficult. she really wants people to come visit, but worries that her bandages will frighten people away. so she's asked me to tell you that she's got some bandages taped to her head and has a buzz cut. Her personality has come back to just about normal and she's very independant. She's ambitious, trying to re-learn to read and speak. She's also getting back into her normal routine with household tasks and chores. the occupational therapist says she she should be encouraged to do everything she can by herself and this in turn will help her language skills. She will have a companion starting today, named Margie, who will help her remember to take her pills and do things she's still having trouble with. We're very happy about the amazing progress she's making. She is so much improved it's unbeleivable. Now is an excellent time to come see her, please just call first 408-725-0644. I think seeing a friendly face will be excellent for her morale. July 8th, 2002Eileen has been moved to a new room - 238 A. The swelling in her brain is down enough that she will be going home tomorrow (July 9th) but the doctor says she still needs to have a few tests. She's vocalizing better, and she's even starting to write again a little bit, although she hasn't quite gotten the hang of it yet. Her speech is still kind of like dadaist poetry, but it's often possible to figure out what she's trying to say. Since the tumor was mostly in her left brain, she has trouble speaking about specific concepts and with numbers. She's more emotional than logical. Her morale is still pretty good. She seems to understand her situation and remains mostly optomistic. But she gets frustrated by her speech, especialy when people try to push her to do things she can't do. Imagine knowing you have a brain tumor and trouble speaking and being unable to talk about it! So keep conversation light and don't push her to perform or try to ask her for data. A good activity is looking at pictures that she's familiar with, like photos of events that she remembers. That works much better and seems to help her speech more anyway. We looked at her wedding pictures, and she was describing some of the contents to me, naming people in them, the number of them, etc. My mom is also showing improved memory. I gave her a teddy bear after her surgery and today she recalled that it came from me, which she was unable to do earlier. The doctor still says she will continue to improve for a while. Good speech and occupational therapists can help her fill in places that are still missing after that. Unfortunately, the vision on her right does not seem to be getting better so far, but it's hard to tell, because she still can't answer questions very specifically and because she normally wears glasses at home. She will require an attendant to be around her all the time at home, but does not need nursing. She talked excitedly this evening about going home and all the people she would be able to see. If you want to stop by our home to see her later, that would be great, but please call first. (408) 725 - 0644 She still seems to be sleepy a lot of the time, but the ICU keeps you up all day and night and the pain medication they were giving her causes sleepyness, so it's hard to predict how she'll be at home. July 7, 2002Eileen is doing very well. The doctor this morning said he was pleased with her progress. He also said she could have visitors, no more than 3 at a time for a few minutes at a time. She is still in the ICU, but the nurses say it's ok. However, they say that she can't have flowers. Anything you bring needs to go back out with you. July 6, 2002On July 5th, Eileen had about 4 hours of brain surgery to remove
most of a large tumor. She is doing well after the operation. The
doctor warned us that swelling from the operation will be afecting her
for a couple of days, but after that, she should gradually improve. She may be home as early as Tuesday or Wednesday and before that will probably be moved to a room that allows freinds to visit. Eileen's nurse says that she is unusually hungry, bright and responsive for someone who has just had her surgery. She is doing very well. She is at the Community Hospital in Los Gatos, but is still in the ICU and cannot have visitors. She does not have a phone, so calling for her at the hospital will just ring at the ICU desk. Calling the family or looking at this web page is the best source for information. |