Home With Palliative Care

I’m going to spare the details of two more trips to the hospital for fevers and the inability to tolerate even water.  Apparently, the new chemo may make the tumors “stable” but my quality of life is terrible because of it.  Not that it is great when I’m not on chemo.  It’s all nausea and trying to find foods that are compatible with my stomach, which can change daily.  I still don’t seem to enjoy sweets and my nutrition is so poor my legs are swollen (and sometimes so badly they hurt.)

Because of the multiple trips to the hospital, the loss of my dad two weeks ago and the progression of my disease, Milo and I made the very difficult decision to go onto a palliative care plan that allows me to manage my IV drugs with a nurse and family support while being at home.  I no longer need to rush to the ER if I feel sick.  We’ve cut down on chemo.  Instead of three weeks on and one off, we’re just doing every other week to give me a break.  Dr. Brooks is still trying to get the DNA results from Mayo, which I’m starting to think they are holding hostage.  In the mean time, the hospice gives me the medications I was getting at the hospital so I can be home with my family through the holidays

Because that’s my goal right now, to make it through the holidays.

I put up the best fight I could, but I am so tired and the sick doesn’t seem to be lessening any.  I continue to pray for a miracle to be God’s plan and I am placing my trust in Him, but I don’t know how much more sick I can take.  My body needs a break.

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9 thoughts on “Home With Palliative Care

  1. Malika says:

    I love you, Janine and I’m behind you 100%! You are constantly in my thoughts and I cannot wait to see you soon. You are so strong and quite an inspiration for a lot of people.

  2. exiledtyke says:

    My heart really does reach out to you in your pain, and, although that by itself won’t make any difference, I hope the reminder that there are a lot of people out here who love and care about you will do your morale some good, and that will then give you a physical boost as I know it has done for me. I’m sure being at home with your loved ones rather than in hospital is something of a boost in itself.
    Your decision about palliative care must have been extraordinarily difficult and it’s one I can understand. The constant pummelling of your body is very, very hard to take and you’ve been taking it for a long time. I hope this “down time” allows you an improved quality of life and that you then feel able to get back to your task of kicking the cancer’s ass, as you have been doing with a fair degree of success, even though it’s a really tough campaign and sometimes it must feel that you haven’t won as many victories as you would like, but you are still here, you do still have motivation and there are many of us who want you to have the success your strength and determination deserve.

  3. jdp64 says:

    You know that I am behind you 100%. Keep praying for that miracle, sweetie, because I still believe it’s on its way.

    Mom

  4. I’m so sorry for the loss of your Dad. I will continue to pray for a miracle for you. I hope being at home brings you peace.

  5. Tina says:

    Janine-I hope you are finding the peace and strength you deserve. I think you have made a brave and courageous choice and I hope you are feeling better, on so many levels. If you need anything, please let me know.

  6. Paula says:

    Love you Janine. I don’t have a lot more to say other than that I truly do wish for you to stay right where you are surrounded by the love of family and friends. You are a wonderful person and I am happy that you are atleast home with Milo during the Thanksgiving holiday. I love you and will continue to send love, prayers and positive thoughts your way. I hope being in your own bed at night brings you more comfort and that being in Milo’s arms gives you comfort. I love you my friend, and although all I really can do is LOVE you through this, I do hope that love brings you some comfort.

  7. River says:

    You are in my thoughts.

  8. Emily Alexander says:

    Janine you have really fought hard and continue to do so, and I am in so much awe of you and the strength that you have shown throughout these struggles. You have people that really love you and are there for you in your life like Milo, Malika, your family, all of our mutual friends… etc. (this list goes on and on…). We all reach out with love to you and I know you will have a great Thanksgiving, and we will all be thinking of you!

    Sincerely,
    Emily

  9. Erica says:

    I think of you often and yet not enough. I think of how hard it must be for you and realize that I’m grateful for having what I have. You make me want to live my life to the fullest. You make me want to make a difference and count every moment. Jon always said live your life in the now because it is only borrowed. I miss you a lot and know that I told Jon he better watch you because you’re a special woman. I love you very much and i am only a phone call away.

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