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Next steps

January 16th, 2018 at 01:31 pm

Well, I honestly can't say the dust has settled on this surprise diagnosis. We're all still shell shocked. My husband wakes up at 4 am every morning to fold laundry and cry alone. Poor man howls like a fighting cat opera.

We've told the kids we have cancer, but not how bad it is. We'll deal with death when it's more immediate.

I hate hate HATE my current oncologist. He is condescending. He doesn't listen. I have to ask him the same question three times to actually get a straight answer out of him. He refused to give me anything for my nausea on my first visit, because he wanted to run blood work-- the same blood work my regular doctor just ran-- and wait for the results. So, I had to suffer two extra weeks struggling to eat and not throw up.

I don't know. I'm sure he's a wonderful doctor for someone, but not for me. He is just kind of shruggy about my whole situation. I want the guy who's treating me to care more about my cancer and my kids than to just shrug about my prospects.

Thankfully, I have an appointment with the kidney cancer group at OSU cancer center on Friday. I hope to find a doctor who wants to actually help me there. I'll be devastated if I don't.

As for the death prep. Yay.

I'm trying to figure out everything I need to do.
This is what I've come up with, and PLEASE please tell me if I miss anything.

1. Make sure dh is the beneficiary of my IRA accounts

2. Both of the online savings accounts are in my name. I need to put them in his name. He's already the death beneficiary.

3. Write down EVERYTHING for him. All the passwords. What goes in what account and when. Names/ check up routines for the kids doctor's and dentists. Names of the people who've fixed the house. Can you tell I've handled EVERYTHING since kids?

4. Get a will. I need to talk to someone. My name is on the house. Not sure what I need to do about that. Want to make sure there's no doubt where the money should go.

5. Save as much money as I possibly can. Seriously.

In other news, treatment begins next week, with one doctor or the other. I'll need a hail mary, guys. There are only two therapies for stage 4 kidney cancer, so I don't have a lot of options if the first one doesn't work.

Grumpy oncologist says I have six months with either no treatment or if the drugs don't work, and I really have more work to do in life than that.

Thanks for all of your support.

21 Responses to “Next steps”

  1. crazyliblady Says:

    You should read this. https://gerson.org/gerpress/the-gerson-therapy/

  2. Rachael777 Says:

    you are a brave woman! keep it going. we are all thinking of you

  3. MonkeyMama Says:

    There are better Doctors (or better Doctors with better bedside manner). I hope OSU goes much better for you. *fingers crossed*

    I can't help but think of a client of mine who outlived a deadly brain cancer diagnosis by about 8 years (living 8 years longer than average). When he passed, he had not left his wife as beneficiary on his accounts and it was a whole mess. Complicated because I know with brain cancer you aren't exactly thinking straight either. But anyway, that is the worst thing you can do to your family. So yes of course, get it done, but also know that what you are doing is very kind and helpful to your husband.

    As to the will, hire a professional and don't be cheap about it. For the same reasons. You just don't want to leave an unintended mess behind.

    {{HUGS}}

  4. Dido Says:

    Google "Letter of Instruction Will." Useful articles and forms will come up--I like this one http://www.extension.uidaho.edu/publishing/pdf/CIS/CIS0958.pdf.

    As far as the house being in your name, that should not be a problem; just make sure it is willed to him. If you just get a will, then it will go through probate. How big and expensive a deal that depends on which state you are in. If you are in CA, then your attorney will probably advise you to get a trust and put the house in the name of the trust, but if you are in a state with relatively simple low-cost probate like we have here in PA, it's not a big deal. Once DH inherits the house, he'll get a step-up in basis which will reduce taxable gains if he sells it.

    Do videos and letters for the kids.

    And I pray that you find a more compassionate and helpful oncologist, STAT!!!

    And hugs. I think of you and your plight often.

  5. MonkeyMama Says:

    P.S. You are aware of social security death benefits, correct? I mention because it was shocking how much benefit my husband built up working just 10 years, mostly very part-time (age 15-25). Look up your benefits and it might help ease any financial worries.

  6. jokeabee Says:

    My mom owned a house in California and days before her death put me on the title as joint-tenant. As soon as she passed away, the house was legally mine-no probate. It might be worth seeing an attorney to see what can be done to keep everything out of probate so your husband and kids have access to whatever you leave them sooner.

    I am rooting for you! I hope you find a better doctor. Your current one might be knowledgeable but the knowledge doesn't do either one of you any good if he doesn't listen to you.

  7. ohsuzannah Says:

    I am sorry to hear of your diagnosis, but I pray you will beat one of the ones that beat all the odds.

    My only advise would be to take lots of pictures together with your kids and husband. They will cherish these always.

  8. rob62521 Says:

    First of all, good for you for looking for a different doctor. This guy, even if he is talented, lacks a bedside manner. Hope you find someone wonderful.

    I know sounds simple, but one thing that is important is to have all your medical folks know your husband can talk to them. We had to sign documents so that we can talk to nurses and doctors. We had an issue with my husband's mom because she refused and getting things straightened around.

    Praying for you!

  9. jane Says:

    When you have processed the diagnosis enough, sit down with a doctor you like (primary is fine, or your new oncologist may have a social worker for it) and your husband and make an advance directive about things you do and do not want and your goals of medical therapy. The default in our health system is to do "everything," some of which does not make sense with stage 4 cancer. I hope it doesn't happen, but if at some point you end up too sick to make your own decisions, doctors WILL approach your husband about code status, because making somebody's last moments a chaotic, rib cracking, traumatic CPR scene when they have metastatic cancer makes no sense. I have been with families in these situations many times, and the peace that comes with knowing what their loved one wanted and not feeling guilty/wondering if they "gave up" too soon is one of the best gifts you can give them.

    Here is a sample of a common form ("Five Wishes"), but you can use anything:
    https://agingwithdignity.org/docs/default-source/default-document-library/product-samples/fwsample.pdf?sfvrsn=2

    You may also want to consider some legacy activities for your kids, like writing letters for them at different ages/occasions, etc.

  10. creditcardfree Says:

    I'll say it again, in case it got lost in the shuffle, seek care outside the US. It is cheaper and there are other alternatives. Here's one link. Hyperthermia is not allowed in the US, but it does treat and cure cancer.

    Praying for you, your husband, children and extended family and friends.

  11. CB in the City Says:

    When you draw up your will, your attorney will be able to tell you what other things you need to take care of.

    It is important to find a doctor you resonate with. You must be heard, and you must be allowed to have hope.

    You are in my thoughts daily.

  12. frugalfarmwife Says:

    I'm so sorry that you're going through this but know that you are in my thoughts a lot. OSU is a wonderful hospital and I hope you can find positive answers there. As for the Oncologist, I'm so sorry for his treatment, he is not the Dr. for you. I'm also in Ohio, if I can help in any with anything please let me know.

  13. LuckyRobin Says:

    Still keeping you in my prayers. One thing I haven't seen anyone mention is credit cards. If you are the one that took them out and not him, they will probably be cancelled on your death if he is only a signer and not a joint card holder. Sometimes they will even cancel a joint credit card. You need to make sure he has at least one card that he took out himself. MIL did not and they got cancelled on her when FIL died. She had to have one issued in her name and it was several days before it arrived in the mail.

    The bank accounts were a mess, too, but at least her name was on them with survivorship. If you have multiple accounts, clean them up now. Downsize to one or two and leave clear directives on what is going on. We are still trying to figure out the bank accounts two months later. FIL had a system, but no one else knows what it was.

  14. Dido Says:

    In addition to Five Wishes, "the Conversation Project" has useful resources on those hard end-of-life discussions.

    MM is right about SS survivor benefits, but the earliest they can be claimed is age 60, so they help in the long run but not the immediate future. However, the children will be able to collect Survivor SS until either they graduate high school or 2 months after turning 19, whichever comes first.

    "When Breath Becomes Air" and "The Brightest Hour" might provide inspiration from younger people who have faced similar terminal diagnoses.

    Thoughts and prayers.

  15. MonkeyMama Says:

    "MM is right about SS survivor benefits, but the earliest they can be claimed is age 60, so they help in the long run but not the immediate future."

    This is not true when there are kids. Kids + spouse will all get benefits (though spouse's benefits would be limited by earnings). There is a family max. The children will collect benefits but is meant for their financial support. It would be generally expected to use that money to pay household bills. I know someone like thrift may want to set all that money aside for her kids to have as adults. But if she hadn't realized or thought of this, still could be a financial load off. I would discuss with social worker/lawyer, but you can look at your social security statement in the meantime to see what the benefits would be.

    "If you can pay the child's medical and general living expenses without the monthly benefit, the SSA allows you to use it for clothing, recreation and other miscellaneous expenses." ~ Just to say it's pretty generous what kids' SS benefits are intended for.

    {Personally I am pulling for the miracle and hoping none of this is necessary. But anything to ease your stress in the meantime}.

  16. My English Castle Says:

    Write letters for your boys. Make some recordings for them. Your writing is so beautiful, and wouldn't they love to hear your voice and read your words. Thinking of you so often. And I loved When Breath Becomes Air. The audio book is lovely too.

  17. LivingAlmostLarge Says:

    No kids under 18 get survivor benefits. Go look into what they will get. It'll help with the planning. Get your will in order. Do you want to leave anything to the kids directly?

    This is terrible but what happens if (it's very likely) your DH will remarry? If he does and men usually do really fast with children, will anything you've built up go into his new joint pot? Do you want it to?

    I hate writing this but I think someone should.

  18. Thrifty Ray Says:

    This is nothing to do about money, but a journal or letter for each of your kids with pictures and your favorite memories about them. Milestone birthday cards of what you wish for them.

    Are there keepsakes that no one else knows the history about? Maybe write down what it is and why its important.

    Thrift- I am heartbroken for all of you. You have been in my thoughts daily. I continue to pray for your hail mary....

  19. crazyliblady Says:

    When my dad died in 1981, my brother and I both got some kind of social security benefits until we were 18. I don't know what my brother did with his, but mine, along with my dad's VA benefits, paid for part of my undegraduate and graduate education. The rules may be different with social security benefits now. I don't know.

    What about the future royalties/sales from your books? Will your husband get that and be able to deal with it?

    I hate to be the one to ask, but what about burial arrangements? Is your husband aware of what you would want or don't want?

  20. crazyliblady Says:

    Here is what SSA has to say about social security benefits.

    https://www.ssa.gov/pubs/EN-05-10085.pdf

    My heart breaks for you and your family. Never give up.

  21. Dido Says:

    Thanks for the correction on the children's survivor benefits, MM, and here's praying that THrift's family doesn't need them!

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