To treat or not to treat; that is the question?????
Dr. Mohr greeted us this morning with a smile, yet he delivered barely a glimmer of 'new' information. It seems that, through this process, I have developed the tendency to lunge towards anything that provides us with a different perspective. I suppose it has something to do with needing material for the blog. Gotta keep my readers satisfied.
So here's the old and the new of it: Gilly's tumour is still presenting itself as: WHO grade II astrocytoma (as it states on the pathology report, which we now have in our hot little hands). It is considered a relatively rare condition, and is described as 'diffused.' This characteristic, coupled with its size, renders it impossible to treat with gamma knives (a second opinion on this matter). Add the location (brain stem) to the mix, and you have the reason for its inoperability (I sometimes make up my own words).
Dr. Mohr still hesitates to treat the tumour, because he feels there's a price to pay with treatment (side effects), and the "history of the disease" is unknown. He stated that he sees 1 case of this every 2 or 3 years; It is not a standard case. Treatment (radiation and / or chemo) may not be advantageous in the long run. He plans to submit the information on Gilly's case for a team discussion. Dr. Sutanem (the radiation specialist) will make recommendations. He still wishes to have that MRI 8 weeks after the biopsy and compare the findings to judge the growth pattern.
He is concerned that we do not make Gilly sicker with medication, and assured us that he has several patients with the same condition that he follows closely. With or without treatment, the symptoms Gilly is experiencing may not change. He said that treatment could have a positive effect at a level of 10%, yet side effects could reach a level of 30% (I wish I had written EXACTLY what he said here, because I'm not sure this is clear to you folks; Suffice it to say that it could do more harm than good, which is what Dr. Mohr has said from the beginning). They really have no way of knowing, he claims, and so this is why he feels it's best to be cautious and not jump to treat with 'poisons.' He acknowledges that Temodal is not very toxic (in relative terms) but still there are side effects that bear considering.
He mentioned the same drug (Temodal). I was taken aback when he stopped to spell it for me; nonchalantly tolerating my habit of documenting his every word (well, maybe every second word; for sure the foreign ones, so I could grill Evan or Shelley or Maurice..Later about the meaning of the terminology later on).
We asked about Gilly's vision, because this symptom plagues him terribly. He suggests we see an opthamologist (spell check doesn't give me a suggestion, but refuses to accept any of my versions) his friend Dr. Jack Wise, to look into (no pun intended) glasses with prisms. We will call for an appointment tomorrow morning.
He questioned Gilly about his word finding problem, and suggested that Gilly rehearse what he wants to say, and to remain calm and try not to get frustrated. Actually, his wise little girl (well she'll always be that to him) told him to do this a couple of weeks ago. She had read about this strategy (or heard of it) and tried to teach her dad the trick. Didn't last long. Gilly is known for his spontaneity.
Gilly shared his concern about his entire right side of his body; "It just doesn't work properly." Dr. Mohr explained that all these symptoms stem from the placement of the tumour and it is impossible to predict if Gilly will feel any improvement over time. I plan to look into occupational therapy for the balance and coordination problems, because Dr. Mohr agreed that it could possibly help.
Herr Doctor was actually quite charming today, I must admit. He offered words of wisdom using analogies and metaphors. He advised Gilly to work on adapting to his new situation, since no matter what happens there is no guarantee that his symptoms will be alleviated. He admits that it's easy to tell someone to deal with this, but not so simple to do so from Gilly's vantage point.
He voiced what our motto has been from the start (Gilly as our model):
Always think of what could be worse. There are worse tumours to be had, and there's hope for the future. He told Gilly to climb the ladder and work towards reaching that blue sky above. Gilly assured him that he is a positive thinker, and he honestly believes in the best case scenario as being his fate.
I left feeling relieved that he didn't have anything worse to report (a worry that kept me awake for nights), and less pressured to worry about beginning treatment yesterday. We have a few weeks to decide if Gilly ought to take part in the study or wait and watch vigilantly for microscopic changes.
Steven, Gilly's special crazy cousin is in town, and Gad is on his way for the weekend, so we're working on treasuring special moments together and having good clean fun (hard when Steven's in town; they've already been to Wilensky's Wellensky's...Whatever; spell check couldn't locate it. Lafleur's is next).
We are now bent on entering a new phase; building fresh avenues of hope. We will take every opportunity to enjoy the little (and big) things that life has set out for us on our collective Blauer / Schwager platter.
Cathy and I have a running phrase that we use, both of us with our mothers in mind: "Life could be beautiful." That's the direction we're going in. A few days in Birch Point next week (I'm on spring break; yahoo!!!) oughta set us on the right path; nothing more beautiful in our view.
Oh yes, one more thing: We're looking into getting a dog that will be Gilly's companion. We will adopt a mature dog already trained (hopefully one that doesn't shed, but in this case I'm willing to go out on a limb). Steven and Gilly went to the SPCA today to have a look, but Gilly had to leave. He wanted to take them all home! This is another one of my missions (one that I may be sorry for one day, but I think I need to take the chance); to find a calm, mid-sized dog that will not knock Gilly over with his / her exuberance. Yaron is more than keen on the idea, but Karma the cat is indifferent.
So here's the old and the new of it: Gilly's tumour is still presenting itself as: WHO grade II astrocytoma (as it states on the pathology report, which we now have in our hot little hands). It is considered a relatively rare condition, and is described as 'diffused.' This characteristic, coupled with its size, renders it impossible to treat with gamma knives (a second opinion on this matter). Add the location (brain stem) to the mix, and you have the reason for its inoperability (I sometimes make up my own words).
Dr. Mohr still hesitates to treat the tumour, because he feels there's a price to pay with treatment (side effects), and the "history of the disease" is unknown. He stated that he sees 1 case of this every 2 or 3 years; It is not a standard case. Treatment (radiation and / or chemo) may not be advantageous in the long run. He plans to submit the information on Gilly's case for a team discussion. Dr. Sutanem (the radiation specialist) will make recommendations. He still wishes to have that MRI 8 weeks after the biopsy and compare the findings to judge the growth pattern.
He is concerned that we do not make Gilly sicker with medication, and assured us that he has several patients with the same condition that he follows closely. With or without treatment, the symptoms Gilly is experiencing may not change. He said that treatment could have a positive effect at a level of 10%, yet side effects could reach a level of 30% (I wish I had written EXACTLY what he said here, because I'm not sure this is clear to you folks; Suffice it to say that it could do more harm than good, which is what Dr. Mohr has said from the beginning). They really have no way of knowing, he claims, and so this is why he feels it's best to be cautious and not jump to treat with 'poisons.' He acknowledges that Temodal is not very toxic (in relative terms) but still there are side effects that bear considering.
He mentioned the same drug (Temodal). I was taken aback when he stopped to spell it for me; nonchalantly tolerating my habit of documenting his every word (well, maybe every second word; for sure the foreign ones, so I could grill Evan or Shelley or Maurice..Later about the meaning of the terminology later on).
We asked about Gilly's vision, because this symptom plagues him terribly. He suggests we see an opthamologist (spell check doesn't give me a suggestion, but refuses to accept any of my versions) his friend Dr. Jack Wise, to look into (no pun intended) glasses with prisms. We will call for an appointment tomorrow morning.
He questioned Gilly about his word finding problem, and suggested that Gilly rehearse what he wants to say, and to remain calm and try not to get frustrated. Actually, his wise little girl (well she'll always be that to him) told him to do this a couple of weeks ago. She had read about this strategy (or heard of it) and tried to teach her dad the trick. Didn't last long. Gilly is known for his spontaneity.
Gilly shared his concern about his entire right side of his body; "It just doesn't work properly." Dr. Mohr explained that all these symptoms stem from the placement of the tumour and it is impossible to predict if Gilly will feel any improvement over time. I plan to look into occupational therapy for the balance and coordination problems, because Dr. Mohr agreed that it could possibly help.
Herr Doctor was actually quite charming today, I must admit. He offered words of wisdom using analogies and metaphors. He advised Gilly to work on adapting to his new situation, since no matter what happens there is no guarantee that his symptoms will be alleviated. He admits that it's easy to tell someone to deal with this, but not so simple to do so from Gilly's vantage point.
He voiced what our motto has been from the start (Gilly as our model):
Always think of what could be worse. There are worse tumours to be had, and there's hope for the future. He told Gilly to climb the ladder and work towards reaching that blue sky above. Gilly assured him that he is a positive thinker, and he honestly believes in the best case scenario as being his fate.
I left feeling relieved that he didn't have anything worse to report (a worry that kept me awake for nights), and less pressured to worry about beginning treatment yesterday. We have a few weeks to decide if Gilly ought to take part in the study or wait and watch vigilantly for microscopic changes.
Steven, Gilly's special crazy cousin is in town, and Gad is on his way for the weekend, so we're working on treasuring special moments together and having good clean fun (hard when Steven's in town; they've already been to Wilensky's Wellensky's...Whatever; spell check couldn't locate it. Lafleur's is next).
We are now bent on entering a new phase; building fresh avenues of hope. We will take every opportunity to enjoy the little (and big) things that life has set out for us on our collective Blauer / Schwager platter.
Cathy and I have a running phrase that we use, both of us with our mothers in mind: "Life could be beautiful." That's the direction we're going in. A few days in Birch Point next week (I'm on spring break; yahoo!!!) oughta set us on the right path; nothing more beautiful in our view.
Oh yes, one more thing: We're looking into getting a dog that will be Gilly's companion. We will adopt a mature dog already trained (hopefully one that doesn't shed, but in this case I'm willing to go out on a limb). Steven and Gilly went to the SPCA today to have a look, but Gilly had to leave. He wanted to take them all home! This is another one of my missions (one that I may be sorry for one day, but I think I need to take the chance); to find a calm, mid-sized dog that will not knock Gilly over with his / her exuberance. Yaron is more than keen on the idea, but Karma the cat is indifferent.
posted by Gilly at 5:19 PM
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