My husband, Joe, passed away on Jan 9 at age 53. He was diagnosed with PSA 3,7000 in May 2016. I read this site daily and found the advice and your experiences very helpful. I am a big fan of Nalkarats because he is so dedicated to helping everyone.
My husband went through all the typical meds: taxotere, xtandi, zytiga. His last treatment was a rechallenge of taxotere/carbolplatin. We were about to try Olaparb next. We were able to get it no charge when my husband did not qualify for the trial due to liver mets.
Below are some of things I haven't seen written about much. It is advice but not the medical advice that many of you are so good at. It is some practical advice based on my experience the last couple years.
Buy as many guaranteed burial life policies as you can. After two years they pay 100% of full value. I bought 8 policies: Mutual of Omaha, New York life, Colonial Penn ect. To make the monthly payments I took money out of my husbands Roth account. I set up a separate checking account that electronic withdrawals were made out of. My husband lived 2 years 3 months. The money I spent on the policies was $32,000 . I am receiving $250,000 in life insurance money. If one passes before 2 year, you get your money back and typically 10% interest.
Lift chairs are a fantastic help in soo many ways. They are a great spot to sleep too.
Fire department will come and give you a lift assist if one is stuck or falls.
If one is getting weaker and more pain but PSA is stable, insist on a scan.
If one can no longer walk and get up, your doctor may end your treatment options. Do as much as one can for oneself because it keeps one active and strong.
Ask doctor if they would personally endure the next treatment or MRI if they had one's disease progression. There answer may be surprising.
Watch out for changes in movement for spinal cord compressions. My husband's left ankle was being lazy one night. We waited til next day. It was a worse and he ended up with a dropped foot. Nerves often heal with rehab if compressions are caught within first 48 to 72 hours. Don't wait. Know the signs.
Hospice is a comfortable place that a person can enjoy the company of loved ones and not be in pain. I wish we would have done it earlier.
This is a great resource. Thank you .
Steph
PS I also was on this site as StephJoeSteph4197 but could no longer log in.
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wow it hit him haed and he was so young . that's the problem with any cancer sometimes it hit s fast quick and your gone. or its slow u tried a'lot of things and still around
My sincere thoughts are with you. Our caregivers and loved ones are our heroes. You share valuable information here. Thank you. I hope you have happy memories to crowd out the pain.
You are a hero in the eyes of all us. Your blessed husband, your family,and all of us. Our strength lives on because of you both..
You are an amazing Angel, I get so depressed, why me, the anxiety beats me down. But, I get up, and live forward, your experience makes me lament, but just for a moment. Then, I get up to fight again, feed on your husband's fight, we are all warriors here, your message is received, I'm ready to fight forward!
So sorry for your loss. I pray you will one day find comfort for you and your family. It’s a tough road both of you were on. Bless you for your strength. RIP and prayers for you...
Oh so sorry to hear of another Brother passing! This damn PCa is ruthless. Prayers and hugs to you and the family. Rest in Peace Joe and suffer no more
Your participation in our community is an honor to us all. I hope that we all helped extend Joe's life and happiness, even by just a little. You are forever welcome here to share your thoughts, helpful hints and insights. My Joe's memory and your life be a blessing.
(It reminded me of the story that goes roughly like this. A wife who had lost her husband to his advanced cancer, several months after his death recalled how "I always really wanted to be able to spend the rest of my life with him. But, one day, after months of grieving, I had the realization that he had spent all of his life to spend the rest of his life with me.")
I am so sorry for the loss of your Joe. Your love and courage shows through the experiences/information you have shared. You will be in my thoughts. Peace and blessings.
I too am so sorry for your loss. But I must point out one incredible thing. Despite your difficult loss, you are back on this site I’m jus a couple of weeks, not complaining (which you’d have every right to do givin the difficult hand you had) but instead trying to use what you experienced to help others. Very selfless to think of others at this difficult time. Stick around this site if you find it therapeutic at all. Your input would be greatly appreciated I am sure.
Steph- very saddened to hear about Joe’s passing. God bless him, and you & your family. We all appreciate your sage advice and helpful information. I pray that your grief and sense of loss will soon be transformed into smiles from happy memories of your life together. Mark
I am so sorry for your loss. I admire the strength they have to go through the awful day to day things they had to go through.
My husband Shane Passed yesterday. He had been through all the treatments and a trial. Shane was diagnosed back in April 2016. He fought a good fight. The couple days prior he kept saying he was ready and that he didn’t have anymore pain. I told him I wasn’t ready for him to go but I understand that you need to. That we will all be ok and you will live forever in our hearts. He told me on the 14th the day we found out there was nothing else to do that he will always be with me. Sorry so long it just all floods out.
I know your husband will be with you and your family forever watching over you. God bless you and I pray for peace and love for your family.
I am very sorry to hear of your husband's passing. You sound as though you were and excellent partner and caregiver to him. I doubt many caregivers are ready to let go when the time comes, they love so deeply. My hat is off to you for all you did for him. God bless.
to Indianagal: "You will live forever in our hearts." What a touching and wonderful thought. May Shane rest in peace knowing that he is in your heart forever. That thought made me think of how short our time here is as living creatures. The thing that brings me, and I hope you solace is that we will live forever in the hearts of our loved ones. God Bless you and may you and your family be well.
I feel so sad to hear about the death of such young men from this disease. They were lucky to have caring, loving women in their lives. To both of you, please accept my sympathy.
Also, Steph, thank you for the practical information regarding insurance and care. I will insist on a lift chair soon.
I also assumed my husband would not be eligible for insurance after he was turned down for long term care insurance right after his diagnosis 18 years ago. I will investigate your suggestions as my husband's options are dwindling.
Mary
Thank you, Steph, for posting, being brave and compassionate, open and vulnerable, practical and logical. Love to you and your family as you move into the next phase of prostate cancer...continuing to live your life - just as Joe would want you to.
The lift chair conversation happened in our home yesterday (I brought it up) and it didn't go well. It seems my husband, 57 diagnosed 5 years ago, perceives it as a sign that he is giving up rather than a way to keep quality of life. Reading your post has reminded me of the delicate dance that we engage in when it comes to caring for others (and even how we care for ourselves). I am encouraged to keep trying. Baby steps.
Karen - a very good post. My wife is my major care giver and has been since this started over 7 years ago. Now with Xtandi, life is harder. If I wake up a little later than usual, she freaks out is is really hard to talk to. If I get up a little early (like today - dental cleaning scheduled for about the time I am in the middle of breakfast) she freaks out. It is so hard for her to understand and not freak out. Your post gives me hope that things may improve as time goes by. Thanks for everything you have contributed here, and the great work you did caring for your husband. God Bless,
Hi Beermaker, she loves you, she wants to help and see you live as long as you can, she is frustrated and angry at the cancer...not you. Tell her that you love her and you are grateful for everything that she is doing to help you and that it will be ok, no matter what happens. Give her the green light to take a break and do something for herself so that she is not so focused on you. I took the afternoon off to downhill ski, meet with friends, walk dogs at my own pace and eat what I wanted to eat for dinner. It felt good, I felt alive and invigorated, and later, I was able to present my best self to my husband who had a nice break from me - the one who wants to fix him. Interesting how I no longer needed to fix him but could just be with him. Again, the dance of care - loving. Best wishes to you and all in the dance.
Sorry to hear your loss but very good advice, I’m at 29 months myself but having a better reaction to all of this, yes buy a cancer policy if you can before treatment start, I started a annuity for my wife when we found out. Just think ahead. Good luck in the future 😢🙏🙏🙏
So sorry to hear of Joes passing as this disease took another warrior in this fight. Thank you for all the great advice on policies as we all need to be thinking how to care and provide for our care givers once we are gone. You and all caregivers provide so much selfless care and support to us fighting this beast.
Take care and Gods peace and strength to you and you family.
Steph, we are grateful for your great advice! I am so sorry to hear that we have lost another warrior to our shared enemy. We are all so hopeful on this site, but hearing from you about what we need to know in the end is so helpful. Thank you and take good care of you!
Thanks, Steph, for this good advice based on your challenging experiences. I’ll be thinking about you and your Joe. May your memories of him and your life together bring you peace and comfort. - Sam
I am so sorry to hear about Joe's passing. Your courage, compassion, strength, love, and smarts in finding good ways to support him is amazing to me. Thanks for the wonderful example of being a great caregiver all the way through his ordeal. And thanks also for the excellent points you make in you post. God Bless, Steph.
As I've already said to Steph, so sorry. Before everyone runs out buying Burial Insurance, I think I would surely investigate further. There may be a catch-22 here. I wanted to say must be but didn't. Be very, very careful. If we have an insurance person out there, some clarification please.
to Steph, I am assuming that your full name is Stephanie. The name Stephanie is from the Greek word meaning 'CROWN'. You certainly deserve to be wearing a crown for the loving care that you gave to your husband Joseph. He was such a young man to leave us but I guess God could not wait to have him by his side. My sincere condolences to you, your family and your friends. Ζήστε στους ζωντανούς.
Steph, I'm so sorry for your loss and I think it shows great strength on your part to come back here and give us some advice/pointers. Thank you so much and I wish you peace.
I am so sorry for your loss . Thank you so very much for the advise. I am a broker agent and offer guaranteed life in policies and that’s a great tip . Once again I am sorry that you endured watching your beloved husband fighting this awful disease. Praying for peace and love to surround you.
Steph, Thanks for informing us and I'm very sorry to hear about Joe's passing. I was diagnosed the same time as him and I'll be 52 soon. You have been through a lot supporting him and I'm sure he would thank you if he could.
My better half and I joined a Livestrong program at the local YMCA recently. During a recent breathing & relaxation exercise, one of their recommendations was to "be someone to look up to". You are! Thanks ever so much for your kind return to this site to offer advice and aid. Best to you and your family, and may Joe rest in peace. Leo
Thank you so much for taking the time to share your experiences and wisdom. I am so sorry for your loss. My deepest condolences. You give me hope. Thank you!
I am so deeply sorry for your pain and heartbreak from Joe leaving the earth.... and soooo young. I pray with time you will find less pain and peace. You are so kind to help others during your pain. All helpful. We have no insurance for lg or myself. He let it lapse. I didn't think you could get insurance with cancer... .....and if you could thought so very expensive. I've never heard they reimburse if someone leaves the earth before the 2 years. Hmmmmm.......
Thank you for helping others in your time of need Gentle hugs.
We let a 500,000 policy lapse. I had no life insurance either. I do not know why this is not a common knowledge. I promise you this is the truth about these policies. I have collected on them and you need to find the money to make the monthly payments. Here is my second post in case you missed it. I suggest you do it quickly and buy as many as possible. Just call the companies I have listed and get the process started.
Burial Policies list from Steph1234
Steph1234
Steph1234•
12 days ago•5 Replies
Hello,
I wanted to share more about the burial policies. They are also called whole life policies. I did my due diligence and hope it may help some of you care for your family's future.
Below is the list of policies I purchased and the payments. The policies are small. Therefore I bought as may i could. There is no underwriting. I took money out of our Roth account to make the monthly payments. I set up a second checking account with automatic withdrawals. I did this only because I didnt like seeing the insurance withdrawals mixed in with my regular checking account. Once one buys the policy, it pays the full policy amount when after two years upon death. If one passes before two years, one gets the premiums back plus typically 10%. Since my husband lived 2.3 years after we purchased the policies. It was a practical investment. The math is if one lives 7.5 years it is not a good investment. (You would do better investing in the market) I have received several checks so far and there are no problems at all. They are all being processed. It takes some time to receive the claim paperwork and send back in the death certificate.
I hope this helps some of you and encourages you. It has been a big help to me and my husband was relieved when he made the two year anniversary of the policies.
Here is what I bought, the payments and the policy payout.
Such great advice! I’m a insurance broker and also sell live Insurance with living benefits. If you would get cancer or 25 other triggers you would receive up to your face amount at time of diagnosis.Happy to help anyone out with any questions.
My email is kzlagency@gmail.com
Once again Jackie my heart goes out to you and your family. Your a tough lady.
Here is what I believe to be true. If one is on this advanced care site, one is probably at least metastatic. Unfortunately, odds are you may have up to 4 years- 2 years of managing pretty good and then a decline. No one is a statistic and I hope everyone defies the odds. Part of one's legacy is how you leave your family. Go get multiple burial/ guaranteed life policies, if your family will need money. Do not be selfish. You will feel better knowing your family has some money to pay bills and a cushion. Heck, have multiple friends pay the premiums and your partners can pay them back later, get a home equity loan, take money out of the basis of your Roth. Be creative on ways to get the money so monthly premiums wont hinder your current budget. You want to be able to spend money now doing what you enjoy.
Thank you so very very much Steph! You're such a kind soul to help me and others. I'm so sorry your 1st insurance lapsed but I'm hope you're able to be okay with these policies. I'm going to call these places and get quotes. Lg is in about 5 years remission now. Thank you for attaching the 2nd post. I hadn't seen that one. Take good care of you Steph. Huge hugs.
Steph I have read and reread your practical advice over and over. It's great advice that I'll remember. We have a lift chair which is truly a blessing when needed. I did not know about the fire department and I did not know if you cant get up or walk that they may end your treatment. I still don't know what dropped foot is but i'm going to Google it now. Thanks so very very much. I soo much wish you a happy life.
I'm so glad my experience is helping you. I have received all but three of the life insurance checks from the burial polices so far. I am confident they will be coming soon. The spinal cord compression caused his ankle to be paralyzed. The doctors called it a dropped foot.
If I could give the guys advice is would be get up and do everything they can for themselves. It is so much easier to ask the caregiver to get them food or drink. Being self sufficient is exercise. Someday they will they want to do it but might not be able to. I am determined to have a good life. The policies provided enough money that I can keep my standard of living. This is something else....I had so many burial policies that I ordered 25 death certificates. You'll need one for each policy and a bunch for other things. The funeral home will order them for you. They are cheap but a hassle to order later.
(We) my husband and me are new to this site and although there is a lot of valueable information and support, there is heartache like what you are experiencing. We are all here to support your needs.
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Gentle hugs. 
Prostectomy trial or not?
How many cycles of taxotere can you go on?
