Disappointment

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Forgive me any typos and misspellings; I’m attempting to use the blog app on my phone for the first time so I can give a real-time update.  I will edit this when I am home at the keyboard.

This morning, Milo and I drove from my in-laws’ home in the Phoenix area to Scottsdale Medical, home of TGen and Dr. Von Hoff.  The doctor I had been most interested in meeting is sadly only there on Monday, but his positive spirit influences everything there.  The office really does have giant stuffed animals everywhere (photos above) and the staff is all very friendly and kind.  It immediately calmed my nerves and encouraged me.  I was definitely excited at the prospect of a treatment plan.

We met with Dr. Weiss, who is every bit as kind and professional as Dr. Brooks, and he did the world’s fastest medical assessment.  I’ve never seen a doctor complete a head-to-toe with full neuro assessment in five minutes!  I was shocked and, of course, passed with flying colors.  We talked a little about my medical history, of which there isn’t much, and then he went to review my scans.

When he returned exactly twelve minutes later, I felt as if I had just started breathing again.  Apparently I had been waiting on bated breath for his return.  I am so tired of living in the state of suspended animation that has become my life.  All I seem to be doing is waiting: for tests, for results and for some sort of treatment or cure that works.  I am not patient and this waiting game is draining on me.

Dr. Weiss told us that he reviewed what he had, which is short two tests that he wants (a PI3K, which is pending, and a C-Met, which he just called and ordered), and had spoken with Dr. Brooks.  Based on my results thus far, he recommends a drug called irinotecan, which it seems my tumor should respond too (even if it also should have responded to the cisplatin).  This drug is one Dr. Brooks can provide in Tucson and he recommends we start it soon.  In the mean time, we need those two tests to determine if I qualify for any trials.  The PI3K trial has an opening, but based on my other results he doesn’t believe I will qualify for it.  The C-Met, which four out of five cancers my type express, doesn’t have an opening right now but might soon.  It would mean that I might get a chance to come off Lurpon because it is not chemo and works on a specific cellular pathway.  We won’t know, however, if I qualify or if there is an opening until after Christmas.

In other words, we’re back at square one with a different chemo drug and more tests in my future.

I give myself kudos; I made it to the car before bursting into tears.  This has all been so exhausting.  I just want to be done with the ups and downs as well as all the uncertainty.  It’s horrible enough wondering if this could be my last Christmas.  I want some sort of direction and progress.  Is that asking too much?

Currently, I have a call out to Dr. Brooks to see what our next move is.  I will update when I know.

Update:  I have spoken with Dr. Brooks, who was insanely busy.  He wanted to talk a bit more to Dr. Weiss and order another CT scan to see what my tumors have been doing.   As far as treatments, he still seems to want to hold off in case the clinical trial has a opening, but admitted that he would speak with Dr. Von Hoff and Dr. Weiss before making that decision.  Either way, I won’t know anything until Monday at the earliest.

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3 thoughts on “Disappointment

  1. Malika says:

    I love you, Janine. It’s good they’re trying a different chemo drug for now until you know more about a trial. That frown will turn upside down when you see the cute things you painted. They are SOOOOOoooo adorable! See you tomorrow.

  2. (B) says:

    Hi,
    Thanks for the updates. It is very appreciated, and very hard sometimes, I think.
    I just wanted to tell you again that we are out here, praying for your miracle every day. (Dear God–me again. About that miracle. I know you are busy. Maybe you could just pencil it in: miracle for Janine. That would be great.) I also wanted to say that you and Milo will be wonderful parents.
    I wish for you a day when you can let go of all worries and daydream about normal stuff and just be very happy. (you know, like what you want for Christmas, or how cookies don’t actually have any calories in December…)

  3. Paula C says:

    Janine, thanks for the update. As always I will keep you in my thoughts and prayers. My sincerest wish is that you and Milo have a long life together and that this holiday is but the first of many where you find your self surrounded in love, support, and laughter. I know you will get through this, keep positive and never give up. Having said that, I know this must be a rough time for you. It is hard to even imagine the pain you must be in right now. I want you to know you will never be alone in this, I am here if you need me, as are many others I’m sure. Blessings to you Janine, I will keep praying for your remission and cure, and as always I love you dear friend. May the prayers we are all sending surround you in healing and lift you up if you are ever feeling weak, down, or let the “what if” questions bog you down.

Support is always welcome.

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