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Birthday Party Pictures! . wish list . After Septemeber 28th . Before August 11th Information about EileenSeptember 28, 2002For weeks, Mom's attendant Margie had been telling me that Mom was more alert around 1:00 in the afternoon, so finally I showed up earlier in the day and found it was true. Mom's overall alertness slowly declines, but if you catch her at the right time, she will laugh and chat with you. Most of her phrases are understandable and make sense. Mom has an oxygen generator that she uses while sleeping. Apparently, it's not unusual for people with difficulty rolling over and moving whiel sleeping to use these. Some folks in San Francisco pay big bucks to sit around in oxygen bars and inhale oxygen "shots." Now mom gets it too. It's not any type of life support, it just makes her sleep more restful. She was having problems earlier not getting enough air and not being able to reposition, but now she sleeps better. I've been reading all the wonderful cards you've been sending to her. Mom enjoys them very much. Yesturday I read her one from the volunteer counsil and as I read off each name, she recognized it and smiled. she still knows all her friends and loves your cards. She also loves visits. My dad and I realize that it can be difficult to go see someone you care about when they're ill. If it would be easier for you to have either him or I here while you visit, you can call in the evenings or on weekends and schedule that. Mom's attendants are also very nice. I sent my dad out for some peperidgefarm-type cookies, so you can come over and eat cookies with my mom and her attendant and also, if you desire, my dad or I. Please do stop by if you can. I know Mom misses all the activities where she saw all of you more often. All in all, she's doing as well as can be expected. She's not in much pain and we have painkillers for her that work well. Her morale is usually good. She's got a good appetite and is taking advantage of her high-blood-pressure diet being repealed. The number to call is still 408-725-0644 September 19, 2002I think I can now say that Eileen's problems are all in her head. She's strong and looks good. Her appetite has returned to normal and she's regained some feeling in her right hand side. Her hair has even started growing back, but it's very fine, like a baby's hair. However, she's very sleepy and her speech continues to slip. She doesn't talk very much at all now, although Margie, mom's assistant tells me that mom gets pretty lively and talkative early in the afternoon, around 1:00 or so. Mom's also out of bed at that time on most days, so it's an excellent time to visit. And pretty much any other time is good to visit soon. Please note that mom's tumors are only in her left brain. Brain tumors are very slow growing. It's swelling around a tumor that kills, not the tumor itself. So her right brain is still intact. Which means that just because she can't talk, it doesn't mean she can't think. She recognizes people she knows, even if she can't always say their names. And it's very clear that she greatly enjoys visitors. Some of you may be thinking that with her unable to speak, she's already so far gone it's not worth coming by. You're wrong. Brain tumors are not like Alzheimers. They affect the part of the brain they are in, but the rest of the brain is pretty much ok. Tumor-free parts are still working. Otherwise my mom wouldn't be able to move her left side either. So you shouldn't be afraid to visit. Everyone around is very nice and visitors put my mom in a good mood. And if you don't come by, you may find yourself regretting that decision in a few months. September 11, 2002Mom's sudden upsurge of health has begun to fade. Her language skills have retreated, so she uses pretty few real words, but she's still very expressive. She is still energetic and looks pretty healthy and is still doing better than her worst point so far. Give her a visit if you want. September 6, 2002I am happy to report that Eileen is showing some signs of improvement. Her color is good. Her eyes are bright. She is speaking with almost all real words, often in complete sentences. Her energy level is high and her morale is good. Her memory and comprehention are also much improved. I have no idea what brought this change about or how long it will last. Those of you who are praying for her, please keep it up! If you want to see her, just give a call first. 408-725-0644. She wants to see you and you may be able to actually have a meaningful conversation. She uses the wrong words a lot, but it's often possible to get the gist of what she's trying to say. September 5, 2002Mom enrolled in hospice on Friday. They provide a lot of help for her. A nurse will come check on her at least once a week. They deliver all of mom's prescriptions (that would have been pretty useful a few weeks ago, when she was on so many more of them!) and other medical supplies and they send around other folks too, like a chaplian and a social worker. Already they've gotten liquid forms of almost everything mom takes, which is much easier for her to swallow. They also specialize in pain management. Mom isn't in much pain, but if she was, they've got her covered. Her head is still sore where she had surgery, so they got her some vicadin, which works a bit better than the extra strength tylenol we were giving her earlier. After noticing that mom's skin color was off, we also noticed she wasn't drinking hardly any liquid at all. We got her a whole bunch of lunch-box type juice boxes, which are great because she can drink them lying down and she's looking much more normal. She's also sleeping better at night since getting on some better pain medicine, so she's a smidgen more awake during the day. Yesturday, she was awake all ay, which is pretty unusual. The hospice worker told us that people she's seen before with brain tumors tend to sleep more and more as time goes on. Whenever I'm about to write off mom's speech completely, she'll come out with a few fully formed sentences. These are few and far between, but many words are staying with her, like "hello" and "goodbye." She responds to moods well and she loves visitors. Stop by! She's home all day. August 28, 2002I believe that mom is doing better one week after discontinuing treatment than she would have been if she continued treatment. However, she continues to slowly decline. Her morale varies, sometimes she is sad, often she is happy. Real words are a minority of her speach. She reacts more to the mood and inflection of someoone speaking to her than to the contents of their words. Sometimes, she can try very hard and get a sentence out. Sometimes she asks if I understand her, or if I am listening, which seems to mean the same thing. Sometimes she whispers. One thing I have noticed is that on days she has visitors, she is more alert, more responsive and happier later in the day. She also appreciates cards. After I read her one that arrived today, she said, "oh, how cute" when looking at the cover. A hospice care person is coming on friday to talk with us about how they can help. Mom is starting to look sick. She's been skinny and bald-headed for a while, but now her eyes don't sparkle as brightly and her skin color is becoming sickly. She is still very responsive, even if her language skills have mostly faded. August 23, 2002After much procrastination on my part, the birthday party photos, taken by MEC, are available for your perusal. Mom's energy level is better. she is sleeping at night now, which she had trouble doing before since she took her chemo at bedtime. Otherwise, she's unchanged except for the gradual changes that have been going on for a while. She has gotten more and more confused, or rather, she is confused more and more of the time. Her ability to use real words is declining. Before she used the wrong word often, now she uses the wrong sylables. Sometimes she asks for her mother, other times she seems to remeber that her mother is gone. Her understanding of speech is declining, although many of the polite social phrases her mother taught her are still hanging on. Although she is having all these problems with symbols (words are symbols), the part of her brain that recognizes people and that recognizes kindness is still unaffected. It may be hard to have a meaningful coversation, but she knows who people are and can feel the love they send her. August 21, 2002After consulting with Mom's doctors about possibilities for success and evaluating negative side affects, we have decided to discontinue Mom's treatment. Only half of people undergoing treatment manage to control their tumors and then only for a few months, while nearly everyone feels fatigued and sick. Brain tumor treatment gets better every year but is still in the dark ages. Mom just passed the half way point for treatment and didn't have positive results. It's hard to predict her prognosis, after receiving half of the treatment, but I do know that now she is still recognizing people. I read her the two get well cards that arrived this morning and after hearing who they were from, Mom said, "Oh, I know her!" Because mom will not be going out every day for treatment, it is now possible for you to visit anytime. We anticipate her energy level rising and her general feeling of health to improve, although this will certainly be short term. Mom no longer walks or moves her left hand. The radiation zapped her hair, but we'll try to have a hat on her when you come over. You still probably should call before stopping by. 408-725-0644 August 13, 2002We talked to the doctors about how sleepy mom has been. She's been sleeping all but a few hours a day and is alarmingly hard to wake up. The doctors were concerned and ordered blood tests. Based on those results, they're changing mom's medication. She had just gotten on some new medication about a week ago. The reason for this is because about 10% of people on her previous medication have a conflict between that pill and the treatment. She was one of the 10%. Hopefully the new pill, the third and most recent one, will not not cause such drowsiness. I told you all about mom's communication problems a few days ago. I just want to clarify that a bit. She's not like a person with alzheimers. Her understanding of what she hears appears to be good. And her thinking is ok. She just has problems finding the right words. This is still the aphasia I talked about earlier. She has no problems with several social phrases. If you ask her how she is, she says, "Fine, thank you. And you?" But she can't really improvise new sentences in a conversation. She's still her normal, charming personality when you catch her awake. Hopefully, soon, she'll be awake a lot more oftten. She appreciates visitors, but I can't promise she'll be awake. Please call to make sure she's home before you come. She could change from asleep to awake or vice versa while you're on your way, but you could ask about that too if you want to. 408-725-0644. I'll report more on her wakefulness after we give the news drugs a try. I don't know how likely they are to help. Honestly, within a couple of weeks after the surgery, she started getting worse and has been getting worse ever since, even though the treatment may have slowed this down a bit. I think it's helping because she isn't dead. If you wait to see her, you might not get a chance, although I certainly hope otherwise. August 11, 2002I've been asked what going into remission means, versus tumor shrinkage. When you are in remission, you have no detectable tumor remaining. About 1% of adults with my mom's diagnosis have this happen. Most of those people are in their thirties and have tumors that are caught very early and are small. But not all of them. About 10% of people have their tumors shrink during treatment. 15 to 20% have their tumor just keep growing. The remainder of people's tumors stop growing during treatment. You cannot tell what group a patient is in without an MRI. Also, radiation can irritate brain tissue and cause swelling, which creates the same symptoms as a growing tumor. Steroids are anti-inflamitory and make this swelling go down. Mom losing use of her right hand side could be because of swelling, a growing tumor, or a decision on her part to give up trying to use it because it frustrates her. She is not talking well enough for us to be able to tell if it's the last case. I haven't been giving a big picture of how she is, so here's a snapshot of how she is right now: She is not vocalizing very clearly, but she knows people's names and can recognize people. She doesn't do nouns and verbs at all well. Pronouns come and go. She uses real words unless she is very tired. She is able to communicate her needs, but not so clearly that we can tell right away. She is still not eating as much as she ought to, but she's eating more than she was. She can feed herself. She's left handed now. She can move her right hand, but doesn't very often. I'm trying to get her to use a coloring book to keep in practice with her right hand. It seems to be helping, but it's too soon to tell. She's very tired a lot of the time; this is probably radiation fatigue. She can walk only with a lot of help. There are people who lose half of their brain and can eventually relearn to do everything. If mom is in the lucky 1% of people who go into remission (and we hope she is), then she could be walking and talking as well as always again in two or three years, back leading tuors at the San Jose Museum. Or, she might have significant tumor shrinkage and regain many of her abilities. The future is highly uncertain. Please keep praying for her and visitting. There's no time like the present. I keep saying that the afternoon is the best time to visit, but I forget to say the weekend is also great as well. And coming by in the evening certainly wouldn't create a problem. Just give us a ring before you head out. 408-725-0644 |