Oh my heavens, They are EVERYWHERE!

Discussion in 'The Watercooler' started by susiestar, Aug 9, 2019.

  1. susiestar

    susiestar Roll With It

    It has been a whole lot of awful lately. The good is seeing our families come together to support us. I just don't have a clue what we would be doing without them.

    We finally got some answers today. The PET scan showed tumors just about everywhere. The doctors have ordered more testing on the biopsy tissue and an MRI of his brain. I can't even process this yet. The pain in his hips and going down his leg are not just from the tumor in his back. He has the socket of one hip eaten up with tumor and the part of the bone that you sit on is eaten up with tumor on the other side. No wonder it has been so hard for him to sit.

    We are really pushing food on him but he isn't ever hungry. In under a week, he lost 12 pounds. He has to have food in the morning to take his medications. Even if it is a protein shake, he MUST eat something. It is pretty easy to tell that he doesn't want to eat, but is doing it anyway. We have been trying to get him to eat about every 2 hours. We are using an extra scoop of protein when he wants a protein shake because he doesn't want to eat anything. Apparently there are tumors on both sides of his neck.

    Plus the pharmacy messed up his medications. They were low on BOTH medications, but got the documentation messed up. The new processing procedure for pain medications is a mess, and it is people like my husband who suffer. It will probably mean a trip to the ER or a really bad day seen by the doctor so that the medications are increased. A new prescription for a different strength can be filled any time. As the medications are not controlling the pain terribly well, that may be in order. The doctor just didn't want to do that with other things going on.

    We will get chemo started after radiation. I have to schedule inserting a port before it starts. They don't start chemo while you are having radiation. It is going to be a LONG process.

    Thankfully the images to set up radiation went far enough down his legs to cover his hips. They can set up his current regimen to add "beams" to try to shrink the tumors in each hip. That will start Mon. It should give relief and having the radiologist do this now is a great relief.

    Years ago, my husband worked at a Superfund site. We wonder if that is a contributing factor. I have to do some research.

    Thanks you for letting me get this all out. I really just don't know how to cope or how to help my husband and the kids cope.
     
  2. ksm

    ksm Well-Known Member

    Glad you are getting answers, but sorry that the answers are so difficult. Prayers. Ksm
     
  3. Copabanana

    Copabanana Well-Known Member

    Susie, how very, very hard. I feel sad for him, for you and your family for what you are going through. I am sorry. I am praying. Thank g-d that your families have come together to support you.

    Did the doctors determine the original cite of the cancer? That is, what type it is?
     
  4. BusynMember

    BusynMember Active Member

    I am so sorry. Praying.
     
  5. RN0441

    RN0441 100% better than I was but not at 100% yet

    I'm so sorry. This sounds dreadful.

    Prayers for your husband and you.
     
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  6. Beta

    Beta Active Member

    I'm sorry for what you and your husband are going through. Prayed just now for you both. May God give you grace and strength, and may He enable the chemo to fully work against this.
     
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  7. Tanya M

    Tanya M Living with an attitude of gratitude Staff Member

    Susie, I'm so very sorry for all you and your husband are going through. I am a cancer survivor so I know what you are looking at in the next weeks/months with treatments. When I was sick I was also dealing with my son.
    Life can sometimes just be hard!! I can only offer you this advice, take it day by day and minute by minute. Stay in the present moment. Make sure you are taking time for yourself, even if it's only 15 min. a day.

    Praying for your husband and you. ((HUGS))
     
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  8. KTMom91

    KTMom91 Well-Known Member

    Oh, Susie, I'm so sorry. Hope your Hubby's medications get sorted out soon so he can get some relief. Many hugs.
     
  9. susiestar

    susiestar Roll With It

    Thank you all very much! It is so hard. The original site of the cancer is either his lungs or pancreas. The oncologist won't say which one yet. The radiologist told us that it is very rare for tumors to spread to the pancreas. Usually if there is a tumor in the pancreas, it is the original tumor. They see tumors spread to and from the lungs, but . . . The oncologist won't say this because they are not 100% sure. The radiologist felt 95% sure was enough (his numbers). The tumors are in bone, organs, even muscle tissue.

    This week is hard. The pharmacy messed up his medications so we have about 5 days without enough medication for his pain. The docs cannot work around this due to new laws aimed at trying to stop the opioid crisis. I don't much care about that crisis. I want my husband to feel as little pain as possible. I thought we were going to have to cancel his radiation today due to how much pain he is in. We managed to make it, but he is just miserable. Add in a heat index of 110 degrees and ugh. We ALL feel miserable. And my daughter wants to bake. yeah, no. No baking bread or cake or cookies today. Just no.

    I am sorry I am not around much. I do think of you all. I just have so much to do.
     
  10. susiestar

    susiestar Roll With It

    Oh, Wiz said the sweetest thing. Kind of morbid, but a sweet sentiment.

    He said if his dad need someone to pull a plug or give a final dose of medications to end his pain, he wants to do it instead of me. He doesn't want me to have to handle that for the love of my life.

    I think that is about the most amazing thing for him to offer. To show he realizes how hard this is and how much I love his dad. I would not let my kids do that, would never put that burden on them. But it is so sweet of him to offer. Of course none of us want that to happen, or to need to happen, but we may be at that point sooner rather than later.
     
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  11. WiseChoices

    WiseChoices Active Member

    I am so sorry for what you and your husband are going through . It's terribly sad and so very difficult .Sending much love and prayers .
     
  12. Lil

    Lil Well-Known Member

    I'm so very sorry to hear this news. Sending you strength and courage and prayers. I wish there was more to do.
     
  13. pasajes4

    pasajes4 Well-Known Member

    Prayers for your husband and your family. I hope his medications. get straightened out very soon.
     
  14. 200Meters

    200Meters A real bustard

    More prayers!
     
  15. AppleCori

    AppleCori Well-Known Member

    Very sorry to hear of the new developments.

    I hope you can get his pain medications straightened out so that he doesn’t have to suffer.
     
  16. GoingNorth

    GoingNorth Crazy Cat Lady

    Susie, no words, for there are none that can make this easier. PM if you need to talk. Call if you need to cry. I'm a still grieving soul who walked this path before you, though more slowly and in a time when ease of pain was not denied suffering patients. My heart goes out to to you and yours
     
  17. ahhjeez

    ahhjeez Active Member

    I'm so sorry to hear this. I wish I had the right words.....I'm sending your family tons of prayers.
     
  18. Copabanana

    Copabanana Well-Known Member

    Dear Susie--I am thinking about you, your husband and family. I don't have words either. I send prayers, too.
     
  19. Nomad

    Nomad Well-Known Member

    I’m so sorry Susie.
    Hard to find the right words.
    I agree to stay on top of the pain medications.
    Maybe make fresh juices , but then again if he just isn’t eating and is losing weight, then favorite foods even yummy desserts are lovely and wise choices.
    We are with you. Post any time.
    Prayers.
    Blessings.