Updates From Dave



07 May, 2003 at 08:53:32

Dave

Email : fogoz@bellsouth.net

Clayton, Laura Keeble Age 56. Died May 6, 2003 from a brain tumor. Survived by her sons, Warren Sanders and Mark Sanders, her husband, David Sanders, sister, Bettie Cook and brother, Jim Clayton. At her request her remains were cremated. Kibby’s passing leaves a large hole in the fabric of many lives, and her family will celebrate her life at their home on Saturday, May 10 from 2:00 P.M. until 8:00 P.M. Memorial donations may be made to Alive Hospice Inc., 1718 Patterson Street, Nashville, TN 37203


05 May, 2003 at 23:47:35

Dave

Email : fogoz@bellsouth.net

Kibby peacefully stopped breathing tonight.


04 May, 2003 at 16:42:30

Dave

Email : fogoz@bellsouth.net

Kibby continues to get weaker, and a persistent sore throat complicates her eating. The “new” Dr. recommended Alive Hospice, and last week they brought and set up a hospital bed. I moved some furniture around in the bedroom so it fits next to the bed I’m sleeping in. The bed makes caring for her a lot easier. Also there’s a generator in our front hall that (as I understand it) extracts oxygen from the air, runs it through water to humidify it, and a plastic tube runs down our hall to the bedroom to Kibby’s nose. It appears that it’s beginning to have an effect. Yesterday and today she’s stayed awake longer during the day. We’ll see if this trend continues. Kibby also is having increased difficulty swallowing. We now are giving her pills to her in yogurt, and other soft foods are all she’s eating now.

April 30 we had an appointment with the Doctor, and I e-mailed the pair of them, saying unless they requested I bring her in, I was going to spare Kibby the trauma of a trip to the clinic, but I wanted to keep the appointment and discuss 4 questions that I listed. The first question was why the radiation oncologist characterized the results of the comparison of the Jan. 30 and March 26 MRI’s as a demonstration of “above average progress” while her condition continues to worsen. The new Dr. kept the appointment but denied my request to review the MRI, saying “I’m not going to get into that” and characterizing it as “ancient history.” This man has a condescending manner (at least with me), and there had been friction between us in our two earlier meetings. At one point I asked him if Kibby’s treatment had been a failure, or if we were still within the realm of a longer more difficult recovery than we had expected. He refused to answer, and our exchanges were getting progressively sharper. When I brought up the interpretaion of the MRI for the third time, he responded, “I told you…,” and he did indeed repeat something he had said before but added something new. He had said before that small changes in the tumor could have large effects, but now he added that they may not show up on the MRI. So I said, “Well you didn’t tell me that before, but you’ve told me now.” To which he responded, “Then you, sir, should have been taking notes.” This was our third meeting, and I have had a pen and pad every time. Well condescension is my hot point anyway, and I completely lost my temper, said “F**k you” and stormed out of the office.

I was so afraid that I’d let my temper cost Kibby treatment either by the “good” Dr. or at Vanderbilt altogether, that it made me sick at my stomach, and I was going to call the “good” Dr. and beg, but he beat me to it. The next night he called me at home. He even called twice because I had gotten home yet when he first called, and he called back. Because I had questioned the MRI results he looked at it again and saw something we hadn’t been told about. Now I misspoke when I said in an earlier update that the March MRI showed the tumor was shrinking. It was the same size as in the earlier MRI, but was more diffuse, indicating that it was breaking up. Well the “good” Dr. has been a patient educator and explained that dye is injected into the area being examined, and the dye accumulates more in diseased cells than it does in healthy cells. So the diseased cells show up as more opaque than healthy cells on the MRI film. Also the MRI shows horizontal slices from top to bottom, so you can get a 3D picture. The slice we were shown appeared to be where the diameter of the tumor is greatest. But now the “good” Dr. has also looked at lower slices that showed the lower parts of the brain stem, and he sees that these slices show an increase in opaque areas. Therefore the tumor is growing again down into the brain stem. Now this is consistent with the degradation in Kibby’s condition. She can’t move her legs at all any more and has a much harder time controlling her head with her neck muscles and has more trouble swallowing. Information remains the most powerful commodity.

The condition of Alive Hospice’s presence is that there can be no active treatment (other than drugs) ongoing. Kibby will see a nurse once or twice a week. I’ll find out tomorrow and pursue more effective treatment of her sore throat. She’ll also see an aide twice a week who will help with bathing her and changing bed sheets, etc. Also the “good” Dr. encouraged me to contact him with any questions, and next week I will. I had told the “new” Dr. that in my position I was bombarded with stories of cures of brain stem tumors at hospitals elsewhere in the U.S. and in other countries, and was given the brusque response, “If I knew of a place where you could get better treatment, that’s where I’d be sending you.” I’ll put this question to the “good” Dr. again to see if there are any reasonable possiblities. Because of the forthrightness of the “good” Dr. we knew this was an aggressive tumor from the beginning, so I do not expect a positive answer. I also want to know if the Dr. can provide an estimate of time left and a rate and manner of further decline. If he cannot with any certainty give me this information, I expect him to say, “I don’t know,” and I will admire him no less for saying so. I didn’t want to write this update, but you all have been so giving and loving that you deserve no less. Joke of the Day: How do you know when it’s bed time at Michael Jackson’s ranch? When the big hand touches the little hand.


22 April, 2003 at 06:58:07

Dave

Email : fogoz@bellsouth.net

Right now the news is all bad. Kibby is sleeping even more and getting weaker and weaker. She can’t sit up, roll over or stand, much less walk. And the more she sleeps, the weaker she gets. She’s so weak, she can barely talk and is very hard to understand. Because of this we saw the new Dr. again last week. He finally said that the chemotherapy didn’t usually cause this kind of fatigue, but that the radiation treatment still could even this long after completion. A Catscan was done to see if anything new was going on, and the results showed nothing new, so he doubled her steroid dosage. She’s now back to 32 mg a day, what she was getting intravenously at Vanderbilt between Christmas and New Years. I had been told that it takes 3-5 days for a dosage change to cycle through your body, and this is day 6, with not only no improvement but continued regression. So this morning she’s starting Ritalin. We’ll see. I still don’t know if the treatment is a failure, or if the recovery is just longer and more difficult than I could have ever imagined. My inclination is still to wait until the next MRI at the end of May. And I’m certainly not overburdened with information from the medical profession. Thanks to all of you for all the kinds of support you’ve given. Every single gesture has been appreciated and is important to us. I’ve never had to say “thank you” so many times to so many people.


05 April, 2003 at 20:44:15

dave

Email : fogoz@bellsouth.net

THE GOOD – THE BAD – THE UGLYThe Good – Most of the time Kibby’s spirits are good. Since our lives have been disrupted, we have been watching Jeopardy at 6:00 P.M. most nights. Even with no short-term memory, and sometimes not any kind, Kibby likes the show, and if she hits a category she knows, she does OK. Last Thursday we were watching and she got 2 or 3 answers before the first commercial break. At the break I told her, “You sure are doing well.” She replied, “Wish I was doing better.” Without thinking I said, “You’re doing as well as you usually do,” and without missing a beat, she said, You asshole.” The Bad – Kibby is 4 days into a 5 day cycle of oral chemotherapy, and she slept 22 hours today. While she was awake, I got her dressed and she ate and drank well. She was already having trouble with fatigue, and the chemo has worn her out. She’s in a good mood when she’s awake; she just can’t stay awake. We’ve committed to another round of chemotherapy the first week in May, and she’ll get another MRI at the end of May. The Ugly – Last week we didn’t see the Radiation Oncologist we had dealt with since the beginning, and this week we didn’t see the Neuro Oncologist we had been seeing since the beginning. I had expended a considerable amount of energy trying to avoid being a faceless patient in Vanderbilt’s medical system, but that’s where we ended up anyway. After 3 months of treatment it’s disconcerting to have to update the doctor because he’s never seen the patient; doesn’t know what her condition has been; has no idea how Kibby has tolerated past treatments. Then he has the nerve to ask me if I want her to have more chemotherapy. That really caught me off guard. Prescription writers are a dime a dozen; we need a doctor. And if that sounds like I want a doctor with the manners of a good old GP who makes house calls but who has access to the most modern equipment and the best, most specialized training; yeah, that’s what I want.


28 March, 2003 at 19:45:11

Dave

Email : fogoz@bellsouth.net

Today was a pretty good day. I even let a woman in a mini-van talking on a cell phone go first at a 4 way stop. I used to be scared of black teen-agers wearing backward caps driving old cadillacs, but a Belle Meade hausfrau in a suburban will kill you quicker with less conscience. It has been 105 days since Kibby was diagnosed with a brain tumor, and today is the first day that we have seen evidence that the treatment is working. Her fatigue has gotten so much worse that she is once again spending most of her days in bed, but she can still sit at the table, feed herself and brush her own teeth. So it’s not as bad as it was in January. Today we saw the MRI picture from Jan. 30 next to the one from day before yesterday, and there is a noticeable difference. The tumor is shrinking. We didn’t see the Radiation Oncologist we had been seeing, but we did see the head of the department. He characterized the change as not just an average picture of progress, but above average. He also said that everyone responded differently to treatment, but 3-6 months was an average recovery time from the fatigue. And he recommended that she continue at the current dosage of steroids for the time being to help combat the fatigue. There will be chemotherapy in our future, but when it is depends on Kibby’s strength. From now on the Neuro Oncologist alone will manage the treatment, and we see him next Wednesday. I don’t expect him to contradict any of the positives from today. Windows 2000 sucks. I actually had a much longer, brilliantly funny update prepared, but Word acted up, so I got frustrated and typed it all directly into the website’s update section. Somewhere along the line I lost my internet connection, and no matter how often I had saved, I lost it all. I even had a Ronald Reagan joke. I’m tired now and going to bed. Maybe I’ll feel like trying to recreate it tomorrow. Today was a good day.


13 March, 2003 at 14:54:10

Dave

Email : fogoz@bellsouth.net

Thursday Last week was a good week, and it ended with Kibby getting her nails done and her hair cut. The appointments were at 11:00 and 1:00, so we had time to get barbecue sandwiches from Hog Heaven and eat them in Centennial Park. She was made over in both places, and was out of the house and either sitting or standing for 3 hours. Well it made her feel good, but it also absolutely trashed her. This is how severe the fatigue is, and it has lasted for days. So just like you’re not guaranteed 2 good runs in a row, Kibby’s not getting 2 good weeks in a row. Fatigue and dizziness are present, but also like in race training, she seems to be getting a little stronger each week. It’s been a month now since she finished the radiation treatments, and of course we hoped for more rapid progress, but we’re just going to have to be more patient. She gets another MRI at the end of the month, and we’ll know more about the rate of shrinkage then. Keep the cards and messages coming; they are appreciated. With all the generosity being shown us, I’m feeling positively Blanche-ish these days, dependant on the kindness of others.


04 March, 2003 at 17:06:16

Dave

Email : fogoz@bellsouth.net

Encouraging Signs – A side effect of steroids is disturbed sleep so Kibby has been taking sleeping pills (Ambien) every night since mid-December. Recently the prescription ran out, and we switched to another brand (Temazepam) because Kibby had exceeded her insurance plan’s annual allowance. I found out from her insurance company that Ambien is very expensive, and Temazepam is very cheap. This concludes your medical lesson for the day. I still couldn’t get many pills so we used the opportunity to try sleeping without the pills. Kibby hasn’t had one for four days now, and she’s sleeping fine, and I think she’s waking up more alert and energetic than before. Yesterday morning she woke up and wanted to go to our basement and check on her plants. There are a large number in a room with grow lights down there. We went down and back up a steep flight of stairs just fine. And she remembered that her plants were gesnerieds. Unfortunately the basement itself looked unfamiliar even though she could remember the brand name of our washing machine. Last night I tucked her back in after helping her with a bathroom trip, and she said, “Thank you very much” in a deep voice, making an Elvis Presley joke. This morning I asked her how she felt, and she said, “Like Brian Wilson.” You may need to be a Beach Boys aficionado to get this joke about Brian’s mental problems, but it’s a good one. Listen to Smiley Smile.


27 February, 2003 at 19:00:28

Dave

Email : fogoz@bellsouth.net

Well it’s 10 days since we increased Kibby’s steroid dosage, but we haven’t seen the hoped for improvement. Fatigue is still inhibiting Kibby’s improvement, and vertigo has returned to a minor degree. She’s having trouble using the walker because she loses her balance, and she’s got a long way to go to build her strength and coordination up. But she’s working hard. She eats all her meals sitting at the table and feeds herself. She brushes her teeth and tries hard with the walker, and her memory is slowly getting better. Her humor shows itself a little from time to time, usually at my expense. She’s eating well, and I know she’ll get stronger. Most cliches have some truth in them, and the one that seems to be operative here is two steps forward and one step back. We’re ready to step forward again.


19 February, 2003 at 14:08:29

Dave

Email : fogoz@bellsouth.net

Last Friday Kibby dressed herself entirely without help and put some make-up on (first time since Christmas) and with my support she walked into radiation for her last treatment. We had to wait nearly an hour, but she handled that with no trouble. Afterwards one of the technicians gave her a hug, then we waited again to talk to the radiation oncologist. Kibby had taken her earrings out for her zapping, but I couldn t get them back in her ears. She asked the Dr. if he d put them in, and laughing, he gave it a try. But he gave up also  good thing he s not a surgeon. We don t see him again until the end of March at which time a follow-up MRI will be done to check the shrinkage of the tumor. He gave us a schedule to step down Kibby s steroid dosages to try and wean her entirely by the end of March. Then she rushed home, had lunch with her boss and two co-workers and had a session with the speech therapist. She was in high spirits. But over the weekend she tired, and by Monday fatigue had driven her strength, balance, coordination and speech back to the point she d been at 10 days ago. It appears that we had lowered her steroid dosage too fast, so as of yesterday we raised it back almost to the level it had been for most of February. By next week I expect her to be back where she was at the end of last week, and after she s been stable (physically) for 7-10 days, we ll step her dosage down again in a smaller increment. There s no timetable that has to be followed for the weaning process; it just has to happen, and it will still take weeks to recover from the radiation. A good sign is that all the regressions were physical, not mental. She s clearer-headed and in decent spirits, even in the face of the setback. And I can see little signs of recovery of her short-term memory.


12 February, 2003 at 08:39:03

Dave

Email : Fogoz@bellsouth.net

The uneveness of Kibby's progress makes me nervous about posting updates too close together, but the news is too good to keep. Monday Kibby helped dress herself, and we did walk into Vanderbilt's radiation oncology department for her treatment. Those people had never seen her other than in a wheelchair barely able to hold up her head and feeling terrible when she had to sit up for even 10 minutes. From the receptionist to the nurses to the technicians to a guy we had just talked to in the hall, they expressed their amazement at her progress. It was smiles all around from a set of people I would have expected to be pretty jaded. I thought they were going to break into applause. Fortunately they didn't have to deal with her lack of any memory from Saturday through Tuesday and answer the same questions over and over. This morning however Ms Hyde woke up, dressed herself entirely, used the real bathroom (as opposed to the portable commode she's used since Christmas)and called her boss to let her know she wouldn't be in to work today. She's sitting at the table eating breakfast now, and we're waiting on the occupational therapist (one of three-speech and physical being the other two). Today's radiation treatment was postponed because they're changing something about the last two treatments. I know they are radiating a smaller area now, but that's all I know. So we'll get number 30 on Friday (Valentine's Day), and Kibby gets her nails done on Saturday. She seems to be much more aware of what's going on now and is disgustingly cheerful. I hope it lasts; Dr. Jekyl was getting really tiresome.


09 February, 2003 at 10:20:50

Dave

Email : fogoz@bellsouth.net

A week later Kibby has finished 26 radiation treatments - only 4 to go. She now takes no painkillers at all, and her steroid dosage has been reduced. Weaning her from the steroids will be a long slow process, but she has stepped down in increments from a high of 32 mg a day to 24 mg to 18 mg, and as of last Friday to 12 mg. Flu-like symptoms can be a side-effect of lowered dosages, and if she experiences that, we may go back up to 16 mg a day for a while. The best news is that physically Kibby has made a quantum leap. She was bedridden for all of Jan., but now she's walking all over the house with her walker and is sitting at the dining room table and feeding herself. She now spends more time sitting up than lying down. Her speech is now clearer, and she talks a lot(what a surprise). Her vertigo is much better (but not gone), so the anxiety about the trips for treatment has subsided. Earler in the week just past, her mind-fog really lifted, and she became aware of how sick she was and what was wrong. Last Wednesday she saw the films of her last two MRI's, so she actually saw a picture of her tumor. As a result she got extremely depressed, a natural result I think. Well now the depression has retreated for the moment, but so has her short-term memory. She will get up and start walking and forget to use the walker, or get the walker but not know where she's going. It's like having a really big toddler to chase around. One who asks the same questions over and over. But I expect this to be short-term, and my hopes for the upcoming week are that we'll be able to get into the clinic for treatment without using a wheelchair at all (I know a shortcut to radiation oncology), at least for the last treatment, if not for all four. And I've found out that we can keep the mask they made to make sure her head was always in the same position as a souvenir. It should be scary at Halloween. Then we'll just have to see how long it takes for recovery from the treatments. It will be at least a month before a follow-up MRI is done.


02 February, 2003 at 14:12:37

Dave

Email : fogoz@bellsouth.net

Kibby got her 20th radiation treatment and a follow-up MRI on Thursday night. Friday night she got the 21st treatment, and we discussed the results of the MRI with the radiation oncologist. The results read, in part, &there has been no overall change in size or extent of the mass seen on 12/26/02. This means three things, none of them bad, but not a miracle either. This supports the original diagnosis of a glioma tumor. The balance of the treatment will proceed as planned, and we should finish the 30th radiation treatment on Feb. 13. Finally the lack of shrinkage is to be expected for this kind of tumor. The radiation causes swelling, and the shrinkage won t commence until later in the series of treatments, or after they are ended. There will be a several week period of recovery from the radiation. On good notes Kibby s hair loss has been minimal, no mohawk yet. Her weight loss has stopped. She weighed 110# Saturday, up 3# from last week. And she s more alert and talkative. She s been able to focus enough to watch TV a little and actually participate in a conversation. Unfortunately there s a black lining to this silver cloud. Her heightened awareness has led to heightened anxiety about the trips for treatment. This past week one of the two radiators was busted, and we ve been going as late as 7:00 P.M. Two of the treatment trips were horrific with long waits and extra stress. So now she obsesses about these trips. She s now more aware of her vertigo and just can t relax. But we can tough it out for the nine treatments left, and maybe the symptoms will begin to subside soon. If she gets any worse, I ll put her out on ebay.


27 January, 2003 at 08:46:03

Dave

Email : fogoz@bellsouth.net

The messages have been inspiring and gratifying. Thank all of you. Kibby has now had 16 out of the 30 scheduled radiation treatments. She has just begun to lose some hair, so we'll see how that goes. The radiation oncologist said she'll end up with a mohawk. She is very weak and has lost from 138 pounds down to 107. We started giving her a protein drink yesterday to try and curb any more weight or strength loss. The worst problem is vertigo. Any motion (even swallowing) stirs it up, and it bothers her even when she's lying still. This is an expected side effect of the radiation, but it makes the trips to and from Vanderbilt for treatment excruciating. We've been trying loading up on Meclizine (an antivert) over the weekend, but it hasn't dented the vertigo. She still feels like she's perpetually falling and can't relax. Today we'll try sedating her with valium for the trip. If that doesn't help, maybe I'll try it. I expect it to be like this for a few more weeks.


17 January, 2003 at 13:37:36

Dave

Email : fogoz@BELLSOUTH.NET

It's Jan. 17, and Kibby just had her 11th radiation treatment (19 to go). It should have been the 12th, but the snow prevented us from getting there yesterday. Our house is on a steep hill, and I couldn't chance being unable to get up worst part of the hill to our street since Kibby can't walk that far, much less on a slippery slope. So far it's been ups and downs, and it's likely to continue this way into March. Last weekend her pain spiked up, and it was Tuesday before we got it under control (more drugs). But now I've been able to reduce her pain-killer intake. Her mental fog is terrible. The only time she knows where she is is at home. Today's radiation treatment was an ordeal because she had to walk down the basement steps to our garage and back up when we got home. Motion and noise both make her feel sick, so even the car ride to and from Vanderbilt is torture. But she's toughing it out. She's lost almost 25 pounds, but her strength is still better than her balance. I keep looking for small signs of improvement, and I may be trying too hard to convince myself that she's bottomed out and is getting better. But I do think I'm seeing some. But it's supposed to be several weeks more like this one before we see any real improvement. This website is so wonderful that I've even been telling the doctors about it. I tell them they're treating a celebrity and don't know it, and all they have to do is go to her website to see for themselves. Thank all of you for the kind thoughts, food and help. You seldom get this kind of affirmation while you're still alive.


15 January, 2003 at 17:49:53

Dave

Email : fogoz@bellsouth.net

It's Jan. 15, and the number of questions I'm getting make me realize I should post an update. Today Kibby told me to "Shut Up!" I take that as a sign that she's turned the corner.


04 January, 2003 at 18:33:01

dave

Email : fogoz@bellsouth.net

It's now Saturday, January 4. Kibby has completed 5 days of chemotherapy (oral, not intravenous), and I believe that the side effects are minimal, as advertised. The next round should be in February. However she has now had her first two radiation treatments, and unfortunately they are also as advertised. The treatments are simple, but anything other than lying flat on her back causes headaches and pain all over her body. So the car trips to and from the hospital are a major ordeal. The mental confusion has also increased. I actually think this is a blessing in disguise because it would be terribly depressing to be aware that you have several more weeks to face in this condition. But Kibby is staying strong, and our friends' support is as powerful a force as I've encountered, and our sons, Warren and Mark, have been invaluable. I do not expect any substantial change between now and February. At that point Kibby will have had 21 of the 30 radiation treatments planned, and another MRI will be done to measure the effectiveness of the treatments. Thank you all.


30 December, 2002 at 08:19:00

Dave

Email : Dsanders@umpublishing.org

We went to Vanderbilt Hospital on the 26th because Kibby was getting progressively weaker. There were tests scheduled for the 31st, but we wanted to see if we could speed things up. Kibby is still there, and I'm at work for a couple of hours. Two of the three tests have been run, and the other is to be done this afternoon. It still appears to be a tumor, but without a biopsy this cannot be absolutely confirmed, and it cannot be biopsied where it is. It can be called Cancer, and it can be called malignant; although I've learned that malignant means two things, growing and spreading. The tumor is growing, but it's not spreading. There's only one. But it has grown, and Kibby is sicker. Her balance, strength, speech, coordination and short-term memory are all affected. She can barely stand by herself, and I have to brush her teeth for her. She now eats European style, but her appetite is healthy. Mentally she's still coping very well; I'd be screaming and crying. Radiation therapy will start Thursday and last for 6 weeks. It's daily, five days a week. Concurrently she will receive Chemo-therapy. This will be orally and be five days a month for twelve months. The expectation is that the side effects from the Chemo will be negligible. However the side effects from the radiation are essentially the same as Kibby's current symptoms, and she may get worse before she gets better. The radiation causes swelling, and it will be offset by the continued use of steroids, but the best we could hope for is that she gets no sicker than she is now. Three weeks into the treatment there will be another MRI done to check the progress of the treatment. Our hope is still for full recovery, but there is still the possibility of some degree of permanent damage. In addition to the damage done by the tumor to the nerves in the brain stem, the radiation will have to be through healthy tissue. The Radiation Oncologist is planning to minimize the effects of this as best he can be directing it through six different angles, rather than just two. But the outcome of any damage to healthy tissue is something we just don't know yet. I'll update you again as we make progress.



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