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Tuesday, August 24, 2010

Well, well. Here we are again.

Here we go again.  This is what I've caught myself thinking as I sit here at the B&W Hospital in Boston once again.  It's a hair before midnight on a Tuesday night, when the wireless network for guests here is the fastest.  Although much more prepared for this trip than last time, it still seems a little surreal that this could possibly be "actually" happening.  Long story short (I know I always say that, may be my fav phrase, although usually couldn't be further from the truth) everything we've done for the last 3 months was a completely useless waste of time (Yes, there are many great examples of a useful waste of time like blogging while your spouse gets chemo).  Decitabine couldn't handle the medical anomaly that is Lora Lee.  She walked through chemo as if it were simply a much needed nap time in the middle of the day for a week a month.  I knew it.  She knew it.  The crap wasn't doing anything but costing Aetna $2,666 per day.  Lora's blast count didn't budge.  It didn't increase, which is a good thing, but it sure as hell didn't go down.  Of course not, especially considering that they only did 2 cycles.  Even the genius that is the FDA recommends a minimum of 3 cycles for effectivity.  Dr. Alyea said "getting remission prior to transplant provides better outcome".  He then said later, "you want to have as little chemo as possible, and a little MDS is OK for transplant", subsequently terminating chemo cycles and begins to schedule a transplant.  So the pre-transplant BMB shows no change in the blast count, and what, do you ask is the solution?  More chemo to reduce the blast count.  I know, really??  Now, as anyone (if there is anyone) reading this knows, I don't have a PhD, but there seem to be some contradictions in logic occurring.  I'm sure if I were to find out this guy is rushing our transplant schedule so that he'll be free to make an appearance at his Georgetown High School reunion in the fall, I'll likely go on a shooting rampage.  Oh yes, I have guns, as I too, dear sir am from Kentucky.  Enough about me and my over-use of commas.  This is day one.  We're already a little bored.  Lora has a much greater ability to sleep in strange places than I, and I have a feeling I'll be a zombie in a few days.  I recently pulled an all-nighter in Atlanta, GA on a business trip and learned that I do not still have the ability to function on little to no sleep.  Lora is sleeping now with one clear and one blue tube pumping some pretty nasty poison (Cytarabine) into her hickman line.  A E-friend of hers recently informed her that she is now at (roughly) 99 days post BM transplant and doing well.  I think it was somewhat comforting for Lora to know someone else came out the back end only slightly worse for the wear.  What's comforting for me is to know the boys are safe and sound in their beds with Cecil and Loretta acting as surrogate parents while we take care of business.  I know the boys will stretch the bounds of their reality a bit in our absence and require some "retraining" upon our return, but it's a small (miniscule actually) price to pay for the advantage of having ppl who love them caring for them on our stead.  Anyway, our time here will truly test the mind occupying capability of an iPOD touch, Nook, Samsung Rogue, a Droid and a couple of laptops.  I've finished 3 soduku puzzles (medium) and lost about 10 chess games to the Droid 2 and typed one blog post.  Also, the Droid's lie detector app clearly proved Lora regrets the day she got involved with the likes of yours truly.


  1. Hang in there - you two have a LOT of people pulling for you!

    BTW - That silly Droid's lie detector is obviously broken! :^


  2. Julie is right - Lora would never regret the day you two met. You are the one standing right by her side. A year ago my husband was diagnosed with terminal cancer. I know all too well that feeling of helplessness as you watch that nasty stuff go into the body of someone you love. I completely understand the "changing of the protocols" game that is played - often without a thought to the patient and their families. You are doing great - question, question, question. We are our spouses strongest advocate. Lora is a strong woman and I am confident she will beat this. I will continue to read CaringBridge and your blog and will always keep all of you in my thoughts and prayers.


  3. Brent,

    That appl has to be wrong! I was a guest at your wedding and it was very obvious to everyone in attendance, that the love you and Lora have for each other is eternal! What a blessing the love you and Lora have with each other! In hard times we sometimes find the dept of our love is tested. I've never heard of anyone who held on thru hard times, to EVER be sorry that they did! I'm very blessed with a man who "held on" to our love during our hard times. It was definitely hard for BOTH of us. We just celebrated our 27th anniversary! Looking forward to hearing of your's and Lora's many, many, many, anniversaries to come! Hold on to that light at the end of the tunnel. We (Gary & I) are praying for strength, guidance, and for God to place His loving hands upon you and Lora. Keep the faith!

    Love to you and Lora,
    Brenda "Rose" Gibson

  4. Brent Kinberger I just Love You... You are her best friend and I know she found a keeper in you. She loves you so very much and we all know it!!! Thank you for coming into her life and being able to walk this road by her side. Tomorrow is going to be right up there with one of the worst places to spend your Anniversary but you are together and we have to thank God... I love you both! Happy Early Anniversary :)
    <3 Tina Thomas

  5. Hi Brent, I haven't spent much time with you over the years, but one thing I'm sure of is that Lora will not wake up tomorrow and be sorry she married you. It breaks my heart that you, Lora, and your wonderful family has to go through this. We just have to keep our eyes on the light at the end of the current tunnel. With all our best, and tell Loretta and Cecil "hey". Love, Aunt Janice

  6. Brent Honey, Hang in there baby! Your love is strong and though we are all helpless in this it is happening and you are getting through it. Stay strong and pray..feel GOD's arms around you let him "hold" you. The boys are in good hands and will be fixable upon your return. Love to you both. Jill & Brent

  7. Hang in there!
    Love and hugs to you both.