Friday, August 15, 2014

Laying More Track on the Roller Coaster

Jason and I have exciting, happy news to share.  It's been a bit of a whirlwind the past few days and this has happened quickly.  We are now at the point where we are still on a roller coaster and happily are adding track to it.  Please bear with me for a long post.  I promise it's a good story.

Over the past 2-3 weeks, I've been feeling better.  I mean, better than I think I should being on hospice for 4-5 weeks now.  I called my doctor's nurse a few days ago and talked with her; I asked if I could possibly come in and get some labs drawn to see if this is a sign that, however illogical it might be, my liver numbers would have dropped enough for me to receive even a small dose of chemo.  It's tricky because hospice doesn't allow those kinds of tests, and being on hospice keeps you from being treated by your doctor.  No man's land.  So, to get this test, Jason and I had to make a few calls and arrangements.

A couple days ago, I went in and got blood drawn.  A few hours later the nurse called me and said, "Jill, I can't explain it, but your numbers look good.  Good enough to go back into treatment.  Come in tomorrow and see the doctor before he leaves for Houston." This morning, the hospice nurse came by and I officially withdrew from hospice!  (The nurse said she has done hospice for 6 years and has never withdrawn someone from hospice before because they just got BETTER!)  After that, I saw Dr. Ellis one last time, and believe it or not, after that, I had a chemo treatment again!! Some liver numbers are still very high (but have dropped in the last month), some are much much lower, and one is even back to complete normal.

When we saw Dr. Ellis, he came in with someone special for us to meet, his 11 year old daughter.  He brought her in and told her he wanted her to meet me:  "I wanted you to meet Jill because I wanted you to see that miracles can happen."  The doc and his medical dream team walked through the labs from when I was there in July the last time, a week after my last chemo.  I was SICK.  I was swollen like the Michelin Man; my bilirubin was 2.9, and 3.0 usually means complete liver failure; I was on pain medicines; I couldn't walk much without Jason holding my arm; I was exhausted and had to lay down in the waiting room waiting for my appointment.  There is no reason for them to think I wasn't in complete liver failure.

Everyone we saw couldn't explain what has now happened.  Here are two possible explanations:

A) Miracle, positive thinking, prayers, etc.

B) Scientific answer (short version):  when cancer drugs hit a tumor, it can cause what's called a flare response.  The drug starts working and causes a bunch of toxic chemical reactions, which can make a patient basically get sicker before they get better.  In the 10-12 drugs I've tried, I've NEVER
Not this kind of flair!
had a flare response.  Just not a flare girl (Flair girl, yes. Flare girl, no).  It's possible that because my liver had SO much cancer it it when we started this last chemo, there was an unexpected flare response that sent me to the verge of liver failure.  As the toxic reaction calmed down, healthy liver cells were able to regenerate and I got better.

C) A combination of both A&B.

We don't know where this will now lead us, nor how much additional time this has given me.  I'm still on pain meds.  I'm still sleeping more than the average bear and my energy isn't yet where we want it.  We continue to take it a day at a time.  I've tried almost every chemo out there, so we still have limited options if this one doesn't work.  I'll be getting chemo every two weeks, so we will still have a mystery on our hands leading up to each appointment, how ever many there are. I could be back on hospice as quickly as I was off, but the reality is that right now, I'm healthy enough to get treatment and am healthier than I was two months ago.

I believe that this turn in health, though, has definitely been propelled by every healing prayer pointed in my direction; every visit or card that has brought me laughter; every flower sent that I enjoyed seeing and smelling; every blessing cooked into food delivered to our house; every happy thought sent via text message.  From our family's hearts to yours, we can't thank you enough.  

One last piece that someone insisted I had to include in this post:  We told Rory that we had seen the doctor and had some news to share.  We told her that there was again a medicine I could try.  She clapped at the dinner table and smiled.  She asked if this meant there was even a slight chance it might all go away.  We told her probably not but we can always hope.  Her response:  "But that's ok.  We'll just take any extra days we get and enjoy them and have fun, whether we get a few extra days or a lot of extra days, right??"  I shouted, "God, I love this kid!!"

We are officially turning off the Meal Train until we should need it again.  Erin, you are an amazing friend for starting and running this thing in a way that made it helpful and easy for us.  We'll go figure out where our pans are and how to turn on the stove.  :)  And when we're not doing that, you'll find us laying as much roller coaster track as fast as we possibly can.




17 comments:

  1. Best news I've heard all summer! The universe works in mysterious ways. Crying tears of joy for you right now. xoxoxo, Dana

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  2. "We'll just take any extra days we get and enjoy them and have fun"...your Rory is brilliant and this is amazing news.

    Keeping your beautiful family in my positive thoughts everyday, Alysia

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  3. Jillie,
    This is awesome news! What a blessing!

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  4. This is fantastic! Won't stop praying for you all. Love you cousin, Melissa

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  5. I'm with Dana. I'm sobbing over here. I'm so damn happy for extra days. xoxo, Aimee

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  6. Jill,

    Karen, Jake and I have been praying for you every day. I believe in miracles (and science) and ANY combination of those that brings you home to Jason and Rory I am ALL FOR! Your unbelievable spirit never ceases to amaze me and it goes without saying whatever we can do to help, please promise me you will make Jason ask us for it. Nothing but love and prayers being sent your way. Take care of yourself.

    -Dave Gutknecht

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  7. Jill,

    Karen, Jake and I have been praying for you every day. I believe in miracles (and science) and ANY combination of those that brings you home to Jason and Rory I am ALL FOR! Your unbelievable spirit never ceases to amaze me and it goes without saying whatever we can do to help, please promise me you will make Jason ask us for it. Nothing but love and prayers being sent your way. Take care of yourself.

    -Dave Gutknecht

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  8. I just keep reading this and crying and smiling. Love it, love it, love it.

    Ginnie

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  9. This is awesome. I have MBC and this type of come back really gives me hope. It shows that all those prayers aren't just a waste of time! I'll throw my own prayer in for you to continue to do well and live many more years.

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  10. I'm very happy for you and your family. Stay strong and don't give up!

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  11. Charlotte HalversonAugust 15, 2014 at 6:10 PM

    Jill, although I have not had the gift of getting to meet you, I have met your Dad - and worked for a long time with Jeff at Necas ( what an outstanding & classy guy! - you don't have to tell him I said that). This is such happy news ...you and your family will continue in our daily prayers. We rejoice in these good days for you!! God bless

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  12. Absolutely incredible! Prayers and positive will continue-- and thank you for being an inspiration to us all. Much love!!

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  13. "Oh praise Him, Hallelujah; my Saviour, my God"! My prayers for you and your family are on constant stream mode. I love crying happy tears! - Sue (Fowler)

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  14. I have read your blog and prayed for you and your lovely family. I am so overjoyed for your great news. I hope you have many many years ahead of you.

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  15. GOD id Great am so happy for all of you...keep smiling and prayers to you and yours

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  16. Praise the Lord, Amen and Amen. We continue to pray and hold on to our faith. I personally know what a medical miracle is. I was diagnosed with Stage III Multiple Myeloma. I only know of two other people that have survived more than perhaps 12 months and at lower stages on this illness..I've been on a Clinical Trial for almost 7 years. So new drugs are worth trying.

    So you just hang in there young lady... There is hope and there is a Great Lord that loves us.-- MARIA

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