One patient with glioblastoma still alive nine years later
by elfprincess on Mon Nov 26, 2012 05:16 AM
I am recently diagnosed with a brain tumor, which I have talked about before (grade 2 astrocytoma or oligodendroglioma -haven't had a biopsy yet to determine the type, motor sensory strip location, pretty much inoperable, in the wait and watch stage right now, on keppra to control seizures). I am still waiting on hearing back from my neurosurgeon about my 2nd MRI that was done a few weeks back, I'm trying to maintain the "no news is good news" mentality. I am going to try and call them tomorrow and see if they have had a chance to read them yet and get an idea of what to expect for the next few months before MRI number 3.
In the meantime I'm trying to get things in order. I have a small life insurance policy through work, not sure how much more expensive that would be to increase that now with a diagnosis, but might be worth looking into. I also have a retirement fund through there as well that I want to increase, just in case. Need to make sure all the beneficiaries are up to date etc.
The big thing is that I want to get wills taken care of. living will, medical power of attorney, and all that stuff taken care of as well. It has been a concern on my mind since the beginning 2 1/2 months ago. I mentioned it before to my family but when they balked I kind of dropped it, I didn't want to rock the boat that was already pretty far tipped so I didn't mention it any more. My family brought it up this past Friday and so we are going to make an appointment with my parents lawyers and get things started.
My questions for everybody dealing with this... what all do I need to make sure gets taken care of? or what do you recommend that I check into? or any recommendations at all would be helpful. I just want things in line before the big decisions start falling at my feet, if that makes sense. I want to make things easy for everybody else when the time comes and I have even been debating with getting funeral arrangements taken care of as well, not that i'm expecting to die soon, but I know of people who have planned and prepaid for their funeral arrangements long in advance, when nothing was wrong, to save their family from having to deal with it. So it me with it... what is your advice?
by Krissypoo1960 on Mon Nov 26, 2012 06:34 AM
Getting things in order is smart. You will probably live another 50 years, but everyone should have a will. I recommend "Legal Shield". I pay 30 a month and they will help you write your will...etc. It's a great thing to have.
Unfortunately, you probably won't be able to up your insurance however, if you are 50, you can join AARP and the offer an insurance for people being diagnosed with cancer a first time. They also have afforable life insurance that you can purchase for your family. I bought it right after my husband passed mainly because I have a very independent, smart 15 year old who already knows what she wants to do with her life.
You are on the right track. Don't let anyone sway you and when you get it done, sit everyone down and let them know where everything is in case of worse case scenario. They NEED to know how to access everything when and if you are gone. It IS the smart thing to do!
Take care, best wishes, and I pray for a great diagnosis.
by elfprincess on Mon Nov 26, 2012 07:09 AM
This diagnosis came as a big blow to me and my family since I am only 32 (and single). The insurance thing is a real kicker for me. just last year I was filling out paperwork about life insurance and I was talking to my dad, asking him if I should do more just in case and we both agreed that since i'm young and healthy I wouldn't need to spend the extra money. and a year later here I am wishing that I would have increased it at least a little bit. But at least I can increase my retirement account.
I worry about who to put in charge of medical decisions if I'm incapable of doing so. My mom is more emotionally driven and yet she is very DNR... My dad is more level headed and quiet about things... and my siblings, well who knows about them :) . I know that they suggest a non family member for being executor of the will and such as well but again I don't know who to put there either.
Most of the time I just don't know.
by Lysondra on Mon Nov 26, 2012 09:03 AM
The passing of my mother was unexpected. Not knowing what she wanted was the worst. I could only pretend to know,what her wishes would have been. I think you are on the right track.Planni ng is the key,just in case. Your loved ones might not know or remember. The loss will be so painful,that details could be forgotten. Your medical decisions will be the most important. You might not be able to make the decisions,in that case having a legal document with your wishes, is a priority. I was told once,you can not take anything with you,when we pass. Everything you own or care about,should have a place to go. You sound like an amazing person,thinking of others at a time like this. I am wishing you peace and dignity during your fight with a brain tumor.
by angel1959 on Mon Nov 26, 2012 11:37 AM
On Nov 26, 2012 9:03 AM Lysondra wrote: The passing of my mother was unexpected. Not knowing what she wanted was the worst. I could only pretend to know,what her wishes would have been. I think you are on the right track.Planni "" target="_blank" rel="nofollow">http://track.Planni " target="_blank" rel="nofollow">track.Planni ng is the key,just in case. Your loved ones might not know or remember. The loss will be so painful,that details could be forgotten. Your medical decisions will be the most important. You might not be able to make the decisions,in that case having a legal document with your wishes, is a priority. I was told once,you can not take anything with you,when we pass. Everything you own or care about,should have a place to go. You sound like an amazing person,thinking of others at a time like this. I am wishing you peace and dignity during your fight with a brain tumor.
On Nov 26, 2012 9:03 AM Lysondra wrote:
The passing of my mother was unexpected. Not knowing what she wanted was the worst. I could only pretend to know,what her wishes would have been. I think you are on the right track.Planni "" target="_blank" rel="nofollow">http://track.Planni " target="_blank" rel="nofollow">track.Planni ng is the key,just in case. Your loved ones might not know or remember. The loss will be so painful,that details could be forgotten. Your medical decisions will be the most important. You might not be able to make the decisions,in that case having a legal document with your wishes, is a priority. I was told once,you can not take anything with you,when we pass. Everything you own or care about,should have a place to go. You sound like an amazing person,thinking of others at a time like this. I am wishing you peace and dignity during your fight with a brain tumor.
My husband passed away on October 30th with lung/Brain cancer he had a short 5 months to get things together i tried to help but found it very hard to talk about things he had a small policy less than 300.00 was getting ss for 2 years hospice helped us by doing paperwork on some things he donated his body to science in hopes thay could find a cure for something and they are doing everything for free when i get the ashes which may take up to 2 years he will be beside his father he was looking out after me and the cost of everything i quit my job 2 years ago to stay with him and because i have a bad back problem mabey that was gods work for me to do that and i enjoyed the last 2 years with him a lot of days i have a hard time copeing with his death but things are coming together a little bit i had to get help paying the bills this month due to he didnt get his ss but he was a veteran so they helped me out and my church helped me and my daughter make a list of what you want to give your kids and family and a will so noone will fight about things ask god for help to guide you in what to do and best of luck to you and may god be with you
by bilbosgirl on Mon Nov 26, 2012 02:48 PM
Not sure what applies in your state, but here in Colorado a medical power of attorney is a simple document, you can download the form free online. That gives the person you choose the right to make your medical decisions if you can't. That was the main document my husband and I wanted to take care of. We only found out through a pamphlet we were given at the hospital called Your Right to Make Healthcare Decisions. Here is it published by the Colorado Hospital Association. Same pamphlet includes a form for a living will.
Hope this helps, you might ask at your cancer center/hospital if such a pamphlet exists there?
by Cando on Mon Nov 26, 2012 11:39 PM
I live in a different country but here insurance through work disappears when you are no longer employed. Hope that is not the case with you. You need to think seriously about whether or not you will make it to retirement age. That's blunt, but true. More important you need a durable power of attorney for personal care and for financial/property. They do not have to be the same person(s). You need to think about who will be your caregivers if you need to be taken care of, and give them the power of attorney for personal care. It is very very wise to have a Living Will, but this is very difficult for most lay people to understand. The state of modern medicine is such that life can be prolonged almost indefinitely, but that life (heart beat and respiration) may not have any quality whatsoever. The thing is that your living will may change if and when your disease progresses, and so it is necessary that you have conversations with your power of attorney indicating how far you want things to go.
Getting care as your disease progresses is going to be a major concern, and your finances should be directed as much as possible to that end to protect the people who will be your caregivers.
I am sorry you are going through this, but I can't stress enough how important it is that you take steps to protect yourself and the people important to you, . I have just been through this, and I am still suffering the repercussions of not having had good advice when we made our wills. The bank is controlling my husbands estate, despite the fact that I am the executor and the heir.
by jon4156 on Tue Nov 27, 2012 02:33 AM
Cando makes a good point, if your life insurance through work is "term" then it will cease when you stop working and if the worst was to happen you no doubt will stop working before you were to die. However, do you also have long term disability insurance through work? If you went on long term disability I suspect your life insurance coverage would continue as long as you kept paying the premiums. These are questions you should ask your HR department.
Most larger companies have life insurance carriers that do not require proof of insurability to bump up your death benefit. If this is the case for you, then I wouldn't mention anything about your brain cancer and just bump up the insurance as much as you can. If they don't require a medical exam to bump up the insurance you aren't under any moral obligation to notify them of your cancer.
I disagree that the executor of your will should be a non-family member. If your will is explicit enough about distribution of your property then it shouldn't matter if a family member is executor. Most people I know have a family member as the executor.
If you have always been single then you might not even need a will. Then again if you have a lot of wealth you might want a trust instead of a will.
I personally would not do a pre-planned funeral. My mother had pre-planned funeral arrangements but when she died we took a quick disliking to the funeral home she chose and went somewhere else. Probably pretty stupid since we didn't know how much money she had spent on the pre-planning, but we didn't care because we simply disliked the funeral director that much. Set money aside for your funeral, make it known to your family what arrangements you would like, but don't pay for it yet. You're young and who knows if the funeral home you pick will still be around by the time you pass.
by GeauxTigers on Thu Nov 29, 2012 10:12 PM
by elfprincess on Fri Nov 30, 2012 02:02 AM
what changed going from inoperable to them deciding to operate? was it just different doctors? I went to 1 other neurosurgeon before I went straight to Mayo and got handed to the best there. So I am trying to listen to their advice the best I can, even if I have to read between the lines most of the time. I just had my 2nd MRI and it sounds like in the spring he suggests that I go ahead with a biopsy and do the radiation and chemo. He strongly discourages trying to take it out because of the location. I find it enoucraging when a surgeon of any type doesn't jump to suggest surgery at the flip of a hat, but is thinking of my age and quality of life over trying to take out a pesky tumor that could cause major problems.
I am going to go to a lawyer that specializes in wills and such. I get nervous doing some things over the internet and that is one of them. There are just some things that I don't know how to pick and choose who to put as executor or in charge of health care decisions. I have life insurance through work so now i'm worried about loosing that if/when I can't work anymore so I have to figure out a way to keep that going, I might just have to increase my 401K to off set losing my life insurance. If I would have ever thought that I would be in a position like this I would have gotten outside of work life insurance! but we can't tell what will happen in the future can we?
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
If you were considering traveling for cancer treatment, which headline would you find more interesting?
Destination: HOPE. Cancer care that is worth the trip.
Over 84% of our patients travel to our hospital from another state
Neither headline is interesting
We care about your feedback. Let us know how we can improve your CancerCompass experience.