The morning after

Ever wake up after getting some very unexpected, difficult news and find yourself shaking the fog from your head trying to remember if it was real or just a dream?  Feeling that way today.

I’ve known for months that “something wasn’t right inside” but I had no idea how serious it was.  The fill-in Oncologist (the lady I’ve been seeing since Nov. left last week on maternity leave) happens to be the head of the whole Provident Oncology program and is everything the former Dr. wasn’t -very informative, very concerned about the advanced stage of my disease, and very experienced with this rare disease.

He squeezed us in between other patients (so we didn’t have to wait till Wed) and spent 20+ minutes explaining how my Positive Myelofibrosis differed from cell-based cancers of the blood system.  Common cancers are generally mutations of cells gone haywire and can often be remedied by wiping them out (chemo) and getting a fresh start.  With my condition, the haywire units aren’t cells but genes that produce a fibre-ish stuff that surrounds the productive red/white/platelet cells in the bone marrow.  And, in this case that fibre has decided to multiply mercilessly which meant there was no room for the blood-making cells to stay there.  On top of that, the fibre essentially becomes a scar tissue, hardening the core of the bones and “killing” them.

After the Dr. attended to another patient he came back for another 20 min. to discuss “treatment” and prognosis.  He mentioned the conventional treatment -(urea-active ingredient in fertilizer, terrorist bombs, etc -he didn’t actually mention this part, I got that from wikipedia) could be used to kill excess white blood cells in my spleen which should, in turn, diminish the size of the spleen which should, in turn, make more room for my stomach which should, in turn, mean I could eat more good food rich in calories.  He seemed to think that the 15 lbs I’d lost in the last few weeks wasn’t going the right direction and that my body was devouring itself just trying to keep the remaining organs functioning.  Oh, I forgot to mention that the spleen remembers how to make blood cells because that was it’s job in utero.  So, since my bone marrow crowded out the factories, the spleen (and liver) took over besides doing their regular jobs.  Dr. Lechner even said he’d give me a candy bar if he had one in his pocket -just to get me some calories.  You see, following recommendations from others I’d restricted my diet to fruit and veggie drinks -lots of enzymes, no calories.

Back to the treatment:   A new drug has been developed in the past 3-5 years that attempts to slow the scar tissue development, thus adding months to ones life.  If I could qualify for that and afford it ($3000-$5000 per mo) they’d look into getting it for me.  Thankfully, the team at Providence is very diligent to find financial aid for folks without insurance!

Well, the question everyone is asking, I asked.  Finally.  “So, doctor, do I have 3 weeks, 3 months or ? ?”  He looked at me and said that he wouldn’t put it at 3 weeks but if things continue on the present course I probably don’t have 3-4 months before the disease will finish my last chapter on terra firma.  Needless to say, that was sobering.  Besides, I’ve felt SO WEAK for the past month, accompanied by constant pains and so unable to concentrate on anything for more than a few minutes, I wasn’t sure I’d want to hang around longer than that anyway.

But, the good news is that CALORIES (and prayer, to be sure) have come to the rescue and some good sugary treats after the Dr. appt. have all but eliminated the dizziness, pain, and foggy thinking.  In spite of turning my abdomen into a war  zone last night with the new urea medicine, I slept more solidly than I have in a week.  I’ve been able to walk upright and spend long periods of time on the computer (i.e., this LONG blog).

So, bottom line:  I’m going to die.  But so are you.  I just have the benefit of knowing roughly when so I can spend the next weeks on the most important things.  Thanks for keeping our family in your prayers.

Lord willing, I’ll be keeping up with this blog in the days ahead.

13 Comments

  1. ”Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade — kept in heaven for you, who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time. In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith — of greater worth than gold, which perishes even though refined by fire — may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the goal of your faith, the salvation of your souls” (1 Peter 1:3-9, ESV

    Reply

  2. When we first found this out– I had trouble sleeping that night- my mind and heart were petitioning the Throne.
    You and your family ARE being prayed for. Your children- I cry out for them- for your restoration. You mentioned one of my favorite scriptures, the one in Ps 139–God has our lives planned for His Glory and Honor! Praise Him! Yes, I will die too- we all will, unless Christ comes pretty soon. God permitted Hezekiah to live 15 more years. However, God will do as He wants– for He is God and there is no other…”I will strengthen you” (Isaiah)..You are in a win-win life-situation- win if you stay here, and win if you go be with our Savior. You cannot lose what you cannot keep, you already have what you cannot lose… Blessings, Annella (Jim) Coffman

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  3. Dan, I’ll be at the Kotel daily for a week beginning this Sunday and will bring your life situation before HaShem each day. Send a private email to me if you wish at maoz@primus.ca and I will clarify this crytpogram for you.
    All the best, Daniel Maoz

    Reply

  4. Brother Dan,
    Thanks for the news, I am half a mile near, call me if you need close by assistance of any sort any time, love you Small People David-796-4020
    P.S. and I love what you do for our singing at church.

    Reply

  5. Praying for you and the rest of the crew, that you would experience the direct, personal touch of the comforter. Admire your example of faith and courage. Love you all.

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  6. Thank you, Dan, for filling us in. May God be your greatest comforter and joy, giving you and your family that peace that surpasses understanding, and continuing to use you to bring Him glory.

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  7. Praying for you , and the family, will share with my contacts. Only HE knows when HE wants us to come home.

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  8. We are praying for you and your family Dan. You and Rebecca were there for us when we needed you. You reached out to us during the most painful time in our lives.
    Jim

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  9. Dan, my heart aches for you and your family. I praise God that you know where you are going, but I am also saddened by the news. Much prayer and love to you and your family.

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  10. Mr. Small,

    Our whole family has been praying for you during this time. May God grant you and your family peace as you walk this road. Please know you are in our thoughts and on our hearts.

    We treasure the time we were able to spend in your home and the thoughts you shared with us. You have many valuable insights into our Christian walk that are able by God’s grace to change lives and grant my generation a passion for the glory of Christ in the world. I would love to see those thoughts in writing for others to benefit from.

    Thank you for sharing glimpses with us.

    In Christ,
    Simona

    Reply

  11. Mr. Small,
    Our whole family has been praying for you during this time. May God grant you and your family peace as you walk this road. Please know you are in our thoughts and on our hearts.
    We treasure the time we were able to spend in your home and the thoughts you shared with us. You have many valuable insights into our Christian walk that are able by God’s grace to change lives and grant my generation a passion for the glory of Christ in the world. I would love to see those thoughts in writing for others to benefit from.

    Thank you for sharing glimpses with us.

    In Christ,
    Simona

    Reply

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