back                                                                                                                         Updated Thursday Oct 14, 2004

A turn for the worse

My apologies for not getting this posted sooner. It has been a very hectic week. With Val in a wheelchair there is a lot of time caring for her and taking her from one place to another, setting up so she can eat, use the bathroom etc. Also, both Val and I have found we get to a point of "enough is enough" when dealing with all this, thinking about it and talking about it, and we have to go off and do something ordinary. I've been at that point a lot in the evenings when I might have the opportunity to update the website and have chosen to do something else.


Wed Oct. 6 '04

by Joe

It’s been a hell of a day, a pretty serious reality check.

Val has been continually dizzy for some time now, and unsteady on her feet. In the last web site update she finally was a little more honest with what her life has been like rather than her usual relentless optimism she presents to the world. Since then we had to get her a cane for a third point of support as she walks (wobbles) around. Persistent double vision has eliminated driving, and pretty much halted editing work, reading for any length of time, or even posting and replying to e-mails much of the time. She rents stacks of $1 movies to watch just to break the boredom.

Eating has been more and more difficult and messy for her since the left side of her face, jaw, tongue and throat, which were simply tingly for some time, have gone slowly numb (read ‘palsied' or 'paralyzed’). Her gagging and gurgling, choking and spitting is quite distressing for all those around her, perhaps more than for her. The paralysis also of course affects her speech, which now is most often thick and slurred, and frequently not intelligible at all. She now is starting to feel some tingles in the right side of her face. 

Along with her body, her mental processes have also slowed and become far less agile and flexible, and often she simply cannot “connect the dots” of a situation and come to a realization or conclusion, remaining instead confused and unsure. Part of this may be some of the side effects of the steroid she is taking to reduce the swelling of the tumor – or alleviate the symptoms at least. 

One of the temporary (there are permanent ones), but rather debilitating side effects has been insomnia. She is perhaps able to sleep from 11:00 or 12:00 to maybe 3:30 or 4:00am(often much less) then naps some during the day. She tried going off the steroid again starting at the time of the July update, and after several weeks of tapering down she was almost completely off it and sleeping much better, but was almost completely nonfunctional as well. On starting again (at a higher dose) she saw marked improvement within hours; but over the weeks the trend has been steadily downward.

The fall-

This morning around 4:00AM, after going to the bathroom and walking to the kitchen, she was starting across the kitchen with a bowl of cat food in each hand, all per her usual routine. Before she even began to bend over to set the first one down, and unaware she had lost her balance, she pitched forward headfirst into the wall, falling across the garbage can and breaking one of the small food bowls. After some time and after somewhat more effort, she managed to get into a sitting position and see what had happened. Unable to get her feet under her in the middle of the floor, she crawled to a cabinet and clinging to the countertop, pulled herself up. Still surprised at her fall after such an otherwise normal start to her morning (that is recently “normal” for her…), she let go with one hand and turned a little to reach her cane and fell again, striking the side of her head on the cabinet wall and the back of it on the floor.

This time she recognized she was not getting up again (was completely unable to) and began calling for me as best as she could, which, in her condition and circumstances, was hardly above normal conversational level. In a few minutes, however (according to her report), I awoke and hastened to the kitchen to help her.

She looked like a rag doll askew on the floor, and lifting her to her feet, I found that although her legs could bear her weight, she had no more balance than a rag doll. She had no strength and little control of her arms as well. She said her head hurt and she wanted to go back to bed. Assisting/carrying her back to the bedroom, I sat her down on the bed and discovered that she could not even sit up, but flopped over to whichever way she happened to be tilting, all without realizing she was falling over.

Since she and I had earlier agreed that she was in a one-way situation and that no one was to call 911 if she needed resuscitation, I tucked her back into bed and held her, and we talked and dozed for a couple of hours.

By 6:00 she was able to sit up mostly unassisted to take her medicine and eat a little as it requires. An hour later as I supported her down the hall to the dining room she was still extremely unstable, but she was able to maintain a rough semblance of erect posture and generally get one foot in front of the other. She had to use two hands to lift a spoonful of oatmeal into her mouth, since her right arm didn’t work very well at all, but she did manage to eat the whole bowl.

About 8:30 I helped her to the couch to lie down for a nap, and I went to town and rented a wheelchair. Fortunately the medical supply house had a narrow 16” seat model. A standard or wide wouldn’t fit through several of the doors in this house; it is far from being handicap accessible. She has improved a little more through the day, regaining more control of her arms and legs, and was finally able to sit up by herself from lying down by 6:00 this evening. She can haltingly maneuver the wheelchair on the linoleum floor in the kitchen and dining room, however her right arm and leg are now mostly numb.

Sunday three days ago, a friend of ours had organized and held the first meeting of a “Share the Care” group for Val; forty five of her friends had signed up and about twenty showed for the meeting. We stressed how easy it would be – Val didn’t need caring for really, just rides for errands and appointments a couple of times a week, and some garden work done before winter.
That has abruptly and drastically changed. At the moment, she cannot stand, sit down, rise, walk, bathe, use the toilet, brush her teeth, or dress or undress without assistance. Cooking or even preparing a sandwich for herself is out of the question. She now needs 24 hour care. Although she might improve to the point where she could get around the house some on her own, I won’t be able again to think she’s ok, or will be ok by herself unless there is a truly major improvement in her condition, something of which there has been no indication.

Tomorrow, Thursday the 7th, she has an appointment for her next MRI, which hopefully will tell us more than the last one.  A week and a half later on the 19th is her appointment with the neurosurgeon to discuss the MRI images, and probably a good deal more. She has stated repeatedly that does not wish to live in a wheelchair, paralyzed, with feeding and breathing tubes.
Further surgery is not an option this neurosurgeon wants to take having already seen and worked on what is in her head, nor do we have the money to even consider it. The results would be the same even if we did and went to someone else out of state – paralysis and tubes. So unless the tumor is truly and completely dead, and the swelling from radiation goes down dramatically and rapidly, we’re nearing the end of the line.
Thur Oct. 7 The tumor in the MRI images looks much like the previous ones three months ago, but slightly larger. We had hoped that it would show as completely dead and give some indication that the swelling might have peaked. No such luck.

When Dr Nick Chandler, the neurosurgeon, heard what had happened, he made time in his schedule and asked Val to come in as soon as she finished with the MRI. He did a few quick tests... close your eyes and touch your nose, etc. then sat down to talk. He gave us his interpretation of the images, which had been e-mailed to him from Advanced Imaging, and the course of Val's symptoms:

The tumor is swelling due to radiation, as is the brain tissue surrounding. The tumor has not finished swelling, nor is it even near finishing. Some tumors can swell to 2 or 3 times their original diameter before subsiding, and in the case of a 1 or 1-1/2cm tumor, such swelling is survivable, but starting with a 4cm tumor, it is not. So the tumor may be dying or dead, but it will kill Valerie before it subsides.

He said that he had not been so specific before because given the size and surgical history of the tumor, the radiation was a desperation measure, although an appropriate one. He had hoped it might note swell as much as it did.

He offered three options:

     1.) No treatment - This, he said, is a guarantee of mortality, probably within a few weeks. Since Val has a shunt, she will probably not go into a coma and eventually cease breathing as would be the case otherwise, but will most likely succumb to complications from pneumonia. Pneumonia is very likely to inevitable due to her impaired ability to swallow and resultant aspiration of food and liquids while eating. He did offer that since the shunt is a treatment, if we selected 'no treatment' he could clip off and close the shunt if we desired.

     2.) An interim delaying tactic - Enter the hospital and be administered very high doses of steroid intravenously to knock back the swelling for a week or so to buy time to make a decision. This would be accompanied by a feeding tube, probably permanent, to reduce the chance of pneumonia.

     3.) A bulk-reducing operation - Enter the hospital and be immediately flown to Oregon to a surgeon who does 'this' more. "This" being emergency surgery of a tumor an an irradiated field. It is extremely risky since the brain tissues are very sensitive and fragile right now because of the radiation. Dr Chandler said this is so unusual that, even though Missoula is a regional AN center and he does many AN surgeries each week, he has not done this for perhaps ten years. His friend, while doing fewer surgeries overall, does perhaps one or two a year in an irradiated field.

He said the outcome possibilities are about evenly divided in thirds. A one-third chance of dying on the operating table or shortly thereafter, or living but having a very bad outcome such as total paralysis. A one-third chance of being only slightly worse or of holding the line approximately where she is now. And a one-third chance of some slight to moderate improvement in her symptoms.

The expected price of each of the latter two would be complete facial palsy (paralysis) on her left side, a feeding tube, and possibly a breathing tube. In the larger picture, he reminded us, there is no cure and that we would probably gain only a year or two until she would be back in the same position because the tumor will undoubtedly regrow. Even much smaller ones that have been given an unquestionably lethal dose of radiation can regrow; this one was much larger and received a smaller dose.

Given that there is a 2/3 chance of fatal or catastrophic outcome, or maintaining where she is now (completely debilitated and in a wheelchair, where she is not willing to remain) with the addition of tubes, and that a "successful" outcome would be only a slight gain for a very short period of time, there was no question the decision would be, and indeed had already been: no treatment. In fact there are already signs around the house stating "Do Not Resuscitate - Do Not Call 911" to remind caregivers and family that might panic in a moment of crisis.
Thu Oct 14

Much has happened in the last week, which feels like a month.

Thursday night we e-mailed and phoned Val's family and some local friends in the Share-the-Care group. Her entire family decided to come out the next day, and ten people, her immediate family and in-laws, lacking only one niece and one nephew, flew in Saturday afternoon from Connecticut, North Carolina and Tennessee.

Several of her friends from the Share-the-Care group and the Red Hatters in a very short time organized and publicized a potluck gathering for her Sunday, a "Celebrating Life - Celebrating Val" party. Click on the link for information, photos, a short biography of Val that was my presentation, and some of the many moving and heartfelt testimonials.

Val was slightly but noticeably worse each morning Thursday, Friday, and Saturday in terms of her speech, control of her arms, and particularly her balance and ability to support her weight and shuffle from bed to wheelchair as I supported her upper body and guided her. But being a true extrovert, the loud and boisterous energy of her family seemed to bouy her up and since then she has seemed just a little stronger and more active in "talking with her hands", and able to speak a little more clearly. It has not been a daily improvement, but a bump up and then holding steady.

Emotionally she is up and down, saying sometimes that she wants to live, and other times, especially early in the mornings when I help her out of bed, to the bathroom, and dress her, that if she could just die at will and fly free, she would do it that moment and be done with it. She does consistenly say she hates being helpless, close to being unable to speak or eat and in a wheelchair, and that that is not life of a quality that she is willing to settle for.*  She sometimes can but often cannot even turn over in bed by herself, and with the insomnia caused by the steroid as well as having an awful lot on her mind anyway, it is understandable that she is down in the mornings. In the evenings after being surrounded and cared for by her large Italian family, and being the focus of their love and attention all day, she is more reluctant to let go of them and this life.

Val's lungs are filling with fluid, as the doctor told us would happen, although she does not have a fever. Treating Val with antibiotics to stave off pneumonia was the subject of a discussion Wednesday among the family and Val and myself. It seemed a little curious to me that they would be advocating fighting the consequences of her difficulty swallowing and aspirating some food and liquids, while she still is ingesting food and liquids (as noted in a previous update, the steroids stimulate her appetite). The only way to avoid the aspiration would be a feeding tube through her abdominal wall into her stomach, and Val has firmly and repeatededly stated "No tubes!!", although she did agree to take the antibiotics.

It's been busy in the house with her family coming and going in various groups and combinations for errands and to and from the motel, Share-the-Care members coming to bathe Val and do chores, and the phone ringing all day. An uncle of Val's from Washington DC flew in unannounced to her her delight, and one of her girlfriends from childhood arrived Moday and another is due tomorrow, Friday.


*  For those that know Val, they know how incredibly active and enegetic she has been her whole life. For those who are looking at this website but do not know Val well, taking a look at her biography on this page will give you some idea.