Just Diagnosed- Get Prepared
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SAS--so sorry you had to go through all that with your dear Aunt. It's so hard to end up learning all the rules the hard way like that. But it is a good example of why it so important to find out these details BEFORE the info is needed. Also a good reason for reviewing your will periodically, since as people age there can be changes that need to be taken into accout. And, each state has different rules about inheritance.
My will is set up to 3 levels--everything goes to my Brother, if he pre-deceases me it all goes to my Mother, if both have pre-deceased me, it all goes to my Sister-in-Law. When my mother dies (God willing not for many more years yet, but she is 74) then I will amend my will to reflect that and add a third inheritor.
Sometimes it is worth the money to have a lawyer's help with this kind of stuff.
OK, what do TOD and POD stand for?
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NM TOD transfer on death and POD payable on death. All that need be provided is a death certificate. The Named person need to produce a picture idea and then it is state dependent.
Thanks for all your great info per usual.
Leah-- wrote to moderators and just got word they have pinned this thread.Yeah !!! Thanks for the suggestion.
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Thank, SAS, those are things I haven't heard of. I'll have to look into it and see if Maine has such things. Sounds a lot easier than what I've already got set up. And I want to be sure I'm givng my paitents ALL the available info when such topics come up.
I saw the pin on this thread--Thanks Moderators! Great idea, Leah.
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Leha thanks , Idid as you suggested and it got pinned, Namaste sas
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Nm.. It was a learning experience, the two that seriously caught me off guard were the one that was dead. She hadn't seen him since 1972 and this was 2001. They other was the one that had CA and didn't tell her, I think the wife was calculating.When ever I called she would always take over the phone, cause he wasn't quite making sense. But no red flag popped up. He never was much to talk on the phone.
The worst was I had promised DEAR AUNT , I would be with her in the end. Since whenever she got sick, I was able to always get her fixed. When her time was coming near she kept telling me she was okay, She also sound okay, I didn't have any reason to believe anything was out of the ordinary. I believe she was ready to die and was afraid I might fix it. She was 92. She had been praying to ST Therasa the Little Flower to guide her passing. It was actually a joke between us that she couldn't start praying until I had fixed everthing, so there would be no gliches. Then one night I said to her it's okay Mary you can start praying now and we pasted the novena at eye level on her bedstand. I kissed her goodbye. She had many months of good health or fixable health. With visits in between or fix visits.
Then I got a call in the middle of the night from the ER she had been taken to. Her K+ was 6.0 she was in renal failure and CHF. IT was a 3 hour drive time. Did they want me to put her on life support. DUH. How did this happen in a vaccuum. After I got over their, I find out she took to her bed 2 weeks earlier. The Director of nurses--DON- to whom I had explained all off the above about being with her in the end didn't call me and tell me of the change. She died alone . First calling my name then calling my DH name . It brings tears to my eyes. I grieved and I suppose I still am. Because I was her POA and Healthcare surrogate, my place of employment had very early on put it in writing that it met a special circumstance for FMLA.
Once she died , they said that special circumstance no longer existed. Well I was going through diverticulitis at the the time and my GI doc said for my health I had to be off the next day(3RD day after death). So, I was able to bury her and settle her estate within 11DAYS, before my own surgery 13 days after her death. I felt the neccessity to make sure her estate was settled before my surgery , in case something happened to me. It all happened because of the way we set it up, except for the 2 that I described. The estate settling all had to do with POD payable on death. I presented the death certificate to the bank. Each heir contacted the bank and followed the banks instructions and it was done.
IN a do over , I would have established a relationship with the resident who picked her mail up daily. She's the person that told me what I just described , She would have been my Mole. Even when I asked the nursing staff the same questions provide by the Mailcarrier, They would not provide any thing, even though I was her POA. That sucks big time. WRONG--That was what all the damn paper work was put in place for.
TWO ODD THINGS--my company recognized the special relationship as fufilling rules of FMLA special circumstances for about 3 1/2 years. I could have taken those two weeks to be at her bedside. BUT then they tried to deny my right to complete the funeral. Which was actually their right because she was not a first degree relative. If I had not had an illness myself, I know what I would have done, but employment wise I don't know what they would have done. Anyways they made no fuss once the doc's slip was given to them.
Mary Adams born March 13th 1908--died August 9th 2001---much loved and missed
Namaste SAS
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Sas--I am so sorry things turned out the way they did despite you doing everything possible to insure a different ending. Being able to fix things is a gift, and knowing when things can't be fixed anymore and someone is ready to move on is also a gift. I've done my fair share of hospice work and have seen people come to terms and be ready to go many times. Sometimes it causes family stres when the patient doesn't want to go to the hospital and get the latest problem fixed. It's much easier all the way around when everyone is in synch like you and your Aunt were. I'm amazed you could get the estate settled so quickly! Good for you! That couldn't have been easy. I am surprised your workplace didn't allow you to use vacation or sick time for the funeral, though. I can understand any bereavement benefit not applying since they are usually limited to first degeree relatives, although there should be an "other close relationship" type of inclusion that would have covered your relationship to your Aunt.
Honor and prayers to Mary Adams.
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sas.. your posts are just incredible. helpful, informative, detailed.
oddly 2 of my brothers were diagnosed with lymphoma.
there should be a thread or forum of random reading that is beneficial.. your opening post would be in there for sure. I just lost my mother and father in law in the midst of moving (and my husband and I are the executors).
if you were my friend, I'd be calling you every day for advice. thank you for your time.
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NM Thank You as always. Your support throughout has been of great solace.
The estate finishing took prepartion, but then was accomplished so simply, I was even amazed. My FIL's estate took something like 9 years to finish. The family wouldn't have had a clue where to begin, but one of his and mines last talks was to ask him to write a simple list of what his assets were, his insurances, etc. They found this list in the top of the safety deposit box. My BIL by marriage not his son, was furious when I described the story to them. He said why would FIL tell you anything. I said you don't get it, I talked to him and pointed out if the family didn't know what to look for then they may miss items. I said that none of you took the time to ask these very important questions. That one list saved unknowable amount of time searching. The length of time to close the estate was because he had asbestosis. The executor sought all allowable recompense for this which is why it took so long.
Apple So sorry for all your troubles. My time here for the forseeable future will be limited , I will check in when I can. Native Mariner and She have kindly said they would watch the site. They each have great insight, knowledge and common sense. This site has been pinned so there may be more "traffic". I intended it to be just as you described--practical stuff that while we don't like to think in these terms--If we don't, the troubles can be daunting in the aftermath of a very troubled time. WE each should try too make a passing of a loved one as untroubled in all areas as possible. When we are greiving we don't need more trouble. Blessings Sheila
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Apple-- not to cause you any undue concern , but I think you should follow up with the best authority you can find re: your brothers Lmphoma. Try and obtain copies of their genetic testing before talking with a lymphoma specialist. Try a google search -search term Lymphoma and leukemia society. They may be of some help.
In my own family, there is a genetically linked something as yet unidentified for the females on my paternal side for CA particularly BC. The numbers are staggering, yet the genetist counselor used a standard chart that has a reknowned name attached to it--of course I can't remember it. What she failed to do was take a look at the total number of women who had BC in our group. Way off the charts. I had 2 rn cousins in on the consultation report by Skype and phone. The numbers --or stat probability was reasonable based on this accepted experts work. I am sure that if the expert had been privey to our family history she would have said WHoa--we need to do some special testing.
To me it is analogous to the woman who identified the gene for Huntingtons Chorea. She was a desendant of Arlo Gutherie and a genetist. She chose the field because she knew of the genetic linkage with HC, but that linkage was not yet proven by science. It was only empirically known, which means it could be traced in the family tree. A family was identified somewhere in South America that had a large number of family members with the disease. She studied it and found the gene.At the time of my reading she herself chose to not be tested for the gene--she didn't want to know and was very open aboutit.
Well are family has that kind of micro group. But it hasn't triggered anyone wanting to take blood samples from all living family members--duh. The woman that identified the BRAC! and BRAC1 was consulted by one of my cousins. ONly cousins that already had BC were asked to submit hx's ,Path reports, and tissue samples if still available.
When The genetist that id'd BRAC's was made aware that there was identical twins one with BC one without. My sister received the communique for info . I was never contacted. My cousin tried twice. She told her I was willing to do whatever , including a breast bx if that would help, send mammo flims and reports . NED at time. That was several years ago. What a missed opportunity because then I did develop the disease. They could have looked at the genetics of it pre disease and post disease. AND maybe there would have been something. I have read my sis's pathreport and --splat --can't remember anything except we were bothe ER+ with the rest negative and opposite breasts. MY oncotype dx score was 30, but no other cousins had that particular test done as it wasn't available when they were dx'd
One very positive thing, when I sent out word to the family that I had Bc, I requested all consider being tested. One cousin from the maternal side was tested that month--they found BC. She had a mx and is doing well. She had a sis with BC and a father with colon CA. There were multiple CA's on her paternal side. They also likely have some genetic linkage. No one is interested in following that either.
GO figuire ---it's basically Medallian genetics---follow the tree.
Need to go post something on the LE site---Namaste Sheila
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DH, died August 20th 2010. Thank you for your prayers and thoughts. Sassy
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Sheila,
He is in God's arms...you are in ours. May God Bless you and keep you, your Angels surround you with Love and Peace. You Loved Greg beautifully through his time here on earth. Please let us know you we can support you.
Namaste,
Traci
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Thank you Everyone for your prayers and support. All our little miricales and his quick passing , I know in my heart were from all the prayers here an through out several countries. Namaste,Sheila
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This BC has taken over my life!! I was diagnosed on 8/6 and have done nothing but go to doctors and getting 2nd opinions.
It has caused me extreme fatique and nausea. Is this normal?
My bmx is scheduled for 9/20 and I cannot imagine going throught this for another 3 weeks!
Thanks for any input
Jan
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Jan, the time from diagnosis until you have your docs chosen and a treatment plan in place is exhausting. It does get better. I had a uni mast Aug 15 '08 and went to work (with the drain still in) on Sept 1st. The recovery from a uni-mast is actually pretty easy. There is little pain after the first 24 hours, and most of that comes from the drain tube site, not the incision. If you are having immediate recon, the recovery will be longer, of course, but the surgeon will tell you what to expect. I'm sure someone who has had a bilateral mx will be along shortly and be able to give you specific info about that.
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Hello, I've just been diagnosis with stage 1 bc. You have alot of great suggestions on tracking your progress. Thanks so much for all your info. Good Luck to you & your husband.
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MYCHOICE 321 thank you for your thoughts . My Greg has passed away. He is in the hand of God now. In a do over I would have been more aggressive in his care by his docs. It would not have changed his outcome, but there may have been fewer errors.
One thing I did learn towards then end was that as his mind started to change, he was unaware of how much medicine he was taking and he didn't follow my directions on not driving. I took all controlled substances and car keys and wore them in a fanny pack on my belly day and night. I had a small book that was in the FP that I could mark down what and when I gave him medicines. It really helped me keep track, And he didn't have to worry that I might not have his pain meds with me. For simplicity, I kept my drivers license,creditcard andsome cash. Therefore , I didn't have to carry another purse.
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Sorry to hear about your husband. He was fortunate to have you with him. I am divorced but I am involved with a wonderful man. Although we do not live together, he is very supportive. I have not started any treatments yet. My doc says I only need radiation. My first consult with the oncologist is Oct 20th. then I will start the radiation. I am already on pain meds for my back so I haven't felt much pain after the lumpectomy. Not looking forward to the radiation but atleast I don't have to do chemo.
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Mychoice 321---So wish I could remember a post by someone who did some unique things to prevent skin damage with radiation . I'll try to recall who wrote it, and pass it on. Sheila
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What a fantastic Thread. Thank you so much. Everyone at all involved in any medical merry-go-round can use this. Thanks again
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Hey anyone out there that has new ideas please post. we need all the help we can have.
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bump
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I am still on the roller coaster. I got my MRI results today and have no idea what to really make of things other than it continues to go downhill. The MRI showed the mass to be 2.3 cm not 1.7, and the cells were identified as DCIS (Path report) however, the palpable mass is present and doesn't resemble DCIS. To add more spice, there is also a small nodule that took up the dye on the other side of the same breast and 1 lymph node was enlarged. Not to be outdone... I also have 2 sm. nodules in the right breast. So I am getting all these biospied under US too. I thought DCIS Grade 0 was suppose to be the easiest. So I am not understanding why we keep finding more and more issues. Anyone else have all this occur?
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I found a lump in my left breast on Dec. 22 of 2010, six days after my yearly mammogram. It was an especially busy, hectic Christmas season for me and my family. I had to wait until Dec. 28 for a sonogram and then Jan 3 for a biopsy and have been diagnosed with early stage of BC (ILC). Thru the holiday, my heart was in my throat most of the time. The only other person besides my husband and teenage son who knew was my sister. I felt I had to tell her so as not to seem deceptive that when she found out later she thought I had just put on a good show. I felt badly even telling her, but I think I made the right choice. It was emotionally draining to go thru Christmas like that, but that's just how life works sometimes.
In the small community where I live, a woman 5 years younger than me with a son same age as mine suffered a brain aneurysm and died just a few days before Christmas. And another girl who's the same age as my son suffered a terrible tragedy when her father shot and killed her mother and then himself-she and her 10 year old sister were in the home at the time it occurred. This all happened the same week I found the lump in my breast. Such unusual circumstances, but certainly put things into a different perspective for me.
I still have fears and concerns but know that I have life ahead of me, many years. So I hold on to that. I love my life, too, and have had a deep appreciation for life for many years.
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THANKYOU!!!!!!!!!!! so much! thank you thannk you
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Your welcome Pil----------come up with any new ideas ---------post 'em. Not meant for stuff like drugs or alternative----------------there are sites for those. This is paractical stuff to get the stuff around you organized -----------good luck! SAS
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http://community.breastcancer.org/forum/44/topic/753120?page=73#idx_2184
Anyone having trouble with bra fittings and migrating foobs, this is the site you want to go too. Amazing information. Will be back want to post this on some other sites
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There is a new drug that can be used for getting off pain meds. Doc has to be certified for treatment plan and use of the drug. Pain meds should be used for pain only. There are other drugs appropriate to neuropathy type pain. You should not be taking pain meds for escape or emotional pain. Seek counseling for those types of feelings. Check with your social worker and see what they can suggest. Cancer centers usually have counselors connected and may be he can figuire out something. Plus they may have one of the docs certified to get you off pain meds. It doesn't have to be a pain mgt doc my PCP is certified. I didn't have to use her for this, but I just called her office and got the name, going to go to site and see what i can find. I'll post this and then edit with the link.
edit for suboxone link . It also has a doctor locator. Once you're ready to stop your pain meds, if you have been on them along time this is a safer way of doing it. You can check with insurance to see if it's covered.
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sas-schatzi, Thanks sooooooo much for your tips. I started a mileage log from the first day I went for my ultrasound. I think I've logged in 200 miles in the past couple of weeks. Gotta get some tax break out of this BS :-). I have another item for your list. It's called a Livescribe Pen. I originally bought it for my son to use at school, but he was a little young to take advantage of it so I started to use it when all this started for me.
You can record your doctor consults/visits and take notes with it. When you are done (my first BS visit was 2 hours) I had a record of EVERYTHING that was said. The notepad for this pen is such that when you want to listen, you simply touch the word on the page and you can hear the recording from that point. I've listened to the meeting for a 2nd time and filled in the notes that I had missed. I also felt like I understood everything so much better when I was able to listen at my leisure. After hearing the conversation between my doctor, husband and myself, I was even more confident with my choice in doctors. The pen and notepad have been great. It also keeps me from having to call my doctor with a ton of questions that he already explained earlier.
The pen has a lot of other uses like translating languages. You can write hello in English and it will say the word in Spanish. There are apps that my son liked when he used it a little. Hangman, Helicopter, Tic/Tac/Toe, etc. to keep me busy while waiting for an appointment. Anyway, since your list was great I wanted to mention this as a tool for some. BTW I have the best file system and you were so right about keeping an extra set of reports. On my last RO appointment, guess what??? They didn't have everything and I was miles from home, but I just pulled out my files, grabbed what they needed and said here ya go!
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