I think by far the toughest question presented to us so far is how long will hubby (TB) live? Answer: No one knows. Here’s the deal.
Because kidney cancer affects each individual it strikes differently, the treatment they are given will affect them differently as well. So you can’t make a prognosis until you see how treatment goes.
TB’s treatment, remember, is not chemo - he will be assigned to a specific medication or combination of medications with the primary goal of halting the progress of protein getting to the cancer cells. Ergo - not allowing further growth of the cancer.
TB will continue with the treatment until one of two things occur at which time he will need to come off of the trial. Actually, there might be three but let’s talk about the two first.
a. He suffers bad side effects and can no longer tolerate the treatment.
b. The cancer grows in spite of the treatment.
If a or b occur, he will then be put on a different type of medication by our oncologist and possibly find him a new trial to participate in. That’s where I think we might have a third thing - seems that if the cancer grows then he may not be able to participate in another study UNLESS he meets certain requirements just as he has to for this treatment. Not everyone who has kidney cancer can participate in the same studies.
So, for the answer to those who want to know how long he has to live. It just depends on what happens with treatment. TB could fool all of us and live another 20 years - probably unlikely but who the hell knows? The key? What is his quality of life during that time frame? If he’s on the ‘gerbil wheel’ as he calls it of treatment and he does suffer side effects but not enough to totally bring him to a halt but he’s tired of treatment, he can stop. Any time of any day. I hope and pray he lives a good long time but I don’t believe in my heart of hearts that will happen. I’m not being negative, I’m being realistic.
For me I’m already having a hard time with a few things. For one it’s the overwhelming desire to want to help him. Which is so stupid because he’s not laying around (well, maybe a little), he’s perfectly capable of walking, talking, driving, mowing the yard though he does tire easily. So I know he gets frustrated with me asking if he wants something or some help, that’s when I get the ‘look’. I have to learn to not push and figure out when he really does need help with something. My natural personality is to be a caregiver and caretaker but now it’s been upped a level and I’ll have to think before I speak. Plus I imagine he’ll really need my help down the road so I guess let’s just enjoy the time we have. The other thing is his temper, whooeee, that’s a wild one. He’s always been HIGHLY opinionated, to the point where it can be offensive though no one hears but me (and I tell him to knock it off - surprisingly, he sometimes actually listens). But now he’s much louder about it in public.
I don’t know, maybe we’re both still absorbing all of this and it’s easier to bark than think before speaking.
It’s amazing the amount of stuff you need to do when something like this happens and if you weren’t acting as a responsible adult before you sure will be now. We have to get information together to apply for disability benefits because he will be debilitated (they say) once treatment starts and he will not be able to work for at least a year but most likely more. We need to contact the jury duty office to let them know it’s been strongly suggested he not participate because he’s starting treatment and it’s unknown when he can. A living will. Yes, we should have had this already just as a basic thing you do but it’s just always been one of those ‘we’ll get to it someday’. Someday has arrived, my peeps. It has arrived. Especially since TB does not want to be buried (waste of space and money, he says), he wants to be cremated and for everyone to have a party to celebrate his life. He does not want to be resuscitated or intubated at the end either. Icky thoughts but again, reality. That’s his choice, that’s what he should have.
Tomorrow is the brain MRI to ensure the cancer has not moved into his brain, this will allow him to definitely be a candidate on the study. If there is cancer, God forbid, he can’t be on that study but there could be another one.
I’ve broken down a couple of times and only for a few minutes because that’s when he hasn’t been around. The big meltdown will come for me eventually, I know it will. But right now we need to get everything organized for the inevitable future (though hopefully far, far into the future). But I also know I need to take care of me and not take on everything by myself. I have a wonderful support group of family and friends that I’ll rely on. We’ll both rely on them all, actually.
So - this weekend we’re going to head out of town to go up north to see some fall colors while he still has the energy to do so.
That’s it for tonight.
I think by far the toughest question presented to us so far is how long will hubby (TB) live? Answer: No one knows. Here’s the deal.
Because kidney cancer affects each individual it strikes differently, the treatment they are given will affect them differently as well. So you can’t make a prognosis until you see how treatment goes.
TB’s treatment, remember, is not chemo - he will be assigned to a specific medication or combination of medications with the primary goal of halting the progress of protein getting to the cancer cells. Ergo - not allowing further growth of the cancer.
TB will continue with the treatment until one of two things occur at which time he will need to come off of the trial. Actually, there might be three but let’s talk about the two first.
a. He suffers bad side effects and can no longer tolerate the treatment.
b. The cancer grows in spite of the treatment.
If a or b occur, he will then be put on a different type of medication by our oncologist and possibly find him a new trial to participate in. That’s where I think we might have a third thing - seems that if the cancer grows then he may not be able to participate in another study UNLESS he meets certain requirements just as he has to for this treatment. Not everyone who has kidney cancer can participate in the same studies.
So, for the answer to those who want to know how long he has to live. It just depends on what happens with treatment. TB could fool all of us and live another 20 years - probably unlikely but who the hell knows? The key? What is his quality of life during that time frame? If he’s on the ‘gerbil wheel’ as he calls it of treatment and he does suffer side effects but not enough to totally bring him to a halt but he’s tired of treatment, he can stop. Any time of any day. I hope and pray he lives a good long time but I don’t believe in my heart of hearts that will happen. I’m not being negative, I’m being realistic.
For me I’m already having a hard time with a few things. For one it’s the overwhelming desire to want to help him. Which is so stupid because he’s not laying around (well, maybe a little), he’s perfectly capable of walking, talking, driving, mowing the yard though he does tire easily. So I know he gets frustrated with me asking if he wants something or some help, that’s when I get the ‘look’. I have to learn to not push and figure out when he really does need help with something. My natural personality is to be a caregiver and caretaker but now it’s been upped a level and I’ll have to think before I speak. Plus I imagine he’ll really need my help down the road so I guess let’s just enjoy the time we have. The other thing is his temper, whooeee, that’s a wild one. He’s always been HIGHLY opinionated, to the point where it can be offensive though no one hears but me (and I tell him to knock it off - surprisingly, he sometimes actually listens). But now he’s much louder about it in public.
I don’t know, maybe we’re both still absorbing all of this and it’s easier to bark than think before speaking.
It’s amazing the amount of stuff you need to do when something like this happens and if you weren’t acting as a responsible adult before you sure will be now. We have to get information together to apply for disability benefits because he will be debilitated (they say) once treatment starts and he will not be able to work for at least a year but most likely more. We need to contact the jury duty office to let them know it’s been strongly suggested he not participate because he’s starting treatment and it’s unknown when he can. A living will. Yes, we should have had this already just as a basic thing you do but it’s just always been one of those ‘we’ll get to it someday’. Someday has arrived, my peeps. It has arrived. Especially since TB does not want to be buried (waste of space and money, he says), he wants to be cremated and for everyone to have a party to celebrate his life. He does not want to be resuscitated or intubated at the end either. Icky thoughts but again, reality. That’s his choice, that’s what he should have.
Tomorrow is the brain MRI to ensure the cancer has not moved into his brain, this will allow him to definitely be a candidate on the study. If there is cancer, God forbid, he can’t be on that study but there could be another one.
I’ve broken down a couple of times and only for a few minutes because that’s when he hasn’t been around. The big meltdown will come for me eventually, I know it will. But right now we need to get everything organized for the inevitable future (though hopefully far, far into the future). But I also know I need to take care of me and not take on everything by myself. I have a wonderful support group of family and friends that I’ll rely on. We’ll both rely on them all, actually.
So - this weekend we’re going to head out of town to go up north to see some fall colors while he still has the energy to do so.
That’s it for tonight.