Update, Friday night, 27 March 2015

Facebook update on Friday –

Not sure where I’ve posted what I’ve updated where so let’s just be global.

Yesterday I saw the medical oncologist, basically got the “weeks to months” speech and was told I qualified for hospice (uhhhhh……… so what else is new???) but we decided to do a few more things to reassure ourselves that we had every base covered, and so in turns we scheduled, unscheduled, rescheduled, discussed, etc, various clinical trials that this triple negative cancer might or might not qualify for. Just a little OCD here, sorry. meanwhile the bleeding continued and my brain just isn’t working right.

So, my platelets are still low, and my liver isn’t functioning well. You know, for seven years I have been in the hospital for sickness, like pneumonia, but this past few weeks are the first time I have had to stay over for complications from the chemo itself. My body is just getting tired, The palliative care doc pointed out that there are just no more reserves.

At one point today we were going to go to oncologist, get labs done, hold anticoagulant, get follow up spinaltap done, go see palliative care doc, get spinal tap done, consult about out of town studies that would or would not require leptomeningeal mets, do anticoagulant, greet my parents coming into town and then fall apart. instead we got labs (bad) saw palliative care doc and fell apart. Much more efficient.

Monday we find out if we don’t know if we will qualify for the chemo that we don’t think is working anyway,. we will also learn more then about possible last ditch out of town trials that I might qualify for.

I am thinking it’s time to rearrange my attitude about asking for help. This is always a hard one for me but we are arriving at a time of transition – hospice, wheeelchairs, you know……. life as we know it is about to look a lot different. Maybe its time to start a conversation about how best to help my babies…..

my parents are here, I hope until at least Monday. time for sleep. Love and hugs.

27 thoughts on “Update, Friday night, 27 March 2015

  1. Thank you for updating us. I am trying to imagine how hard it would be to plan a life for my babies that might not include me…praying that the through the suffering and death of Christ you will be strengthened this upcoming Holy Week.

  2. You are the bravest person I have ever seen. Praying for your discernment in the coming weeks . You will know what to do when you have to… Will also pray for clarity for you and your family. I think you are what saints are made of.

  3. Thank you sooooo much for the update, I have been thinking of you all week. Wishing you all the strength possible to make decisions, find solutions for your babies. I am sad, sad, sad, but still hoping for relief and solutions…..

  4. Praying for wise words, wise decisions, strength to make plans, and many willing hands to help make this next transition as easy as possible for everyone. And a prayer for you – that you have a sense of peace about an amazing life and example that you have provided those babies, and those of us out in the world you have never met. You have given them a strong foundation.

  5. You are constantly on my mind, and in my thoughts as I crochet. I hold you before the Throne daily. May God strengthen you as you face the days ahead and plan for your children.

  6. I have been praying for you and thinking of you daily. I’ve asked that you be kept in daily prayer at my school here in MI, too.

    I’m not quite sure what else I can do for you and your family, but I am willing to help in any way that I can.

  7. I, too, am so grateful for your update. My better half and I talk about medical terms like you do…words we never thought we’d learn now roll off our tongues, don’t they? You and your family are in our thoughts and prayers. I too wish I had a magic wand to wave for you…sending you angel hugs. Barbara (\o/)

  8. Every time I pick up my knitting I think of you and pray for you. As we enter into Holy Week, may the Suffering Christ grant you strength and peace. May His Suffering Mother bring you wisdom as you plan for your children.

  9. I was up the other night , could not sleep and was thinking of you and praying for you.
    I wish I lived close to you , so that I could help you. You are an amazing Mom!
    Amazing, in that you are always in each moment thinking of your family, I wish the world had an
    abundance of Mothers who were just like you. Each and every day, you make the world a better place.

  10. Praying for an Easter miracle, and offering many Memoraraes for you throughout the day everytime my mind wanders to things that are not important. Know that you are doing great things, and God has you, your husband and babies in His care!

  11. Praying that you find Peace and knowing that you have strong Faith you will find the answers to all that troubles you. Thinking of you often. Thank you for sharing you journey with us. You give me strength.

  12. De-lurking here to say that I have been following your blog faithfully for a couple years now, and have been praying for you for as long. Whenever I pick up my knitting needles I think of you — and I’m sure I always will.

    May our suffering Savior comfort and strengthen you and your family as you follow in His footsteps — and may you all be able to look forward to Easter joy.

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