Written Jun 1, 2013 10:49pm
New month. New day. New perspective.
This tends to happen when you have a collection of the most genuine, loving and amazing people in your corner. We so very grateful to each and every one of you who has stopped, prayed, cried, gotten totally pissed on our behalf, sent a text, emailed, commented to the guest book, called, sent positive vibes, faced Mecca, reached out...truly, whatever the heck you did, we are truly just beside ourselves.
Your love, thoughts and prayers washed over us in the past 24 hours like a wave of goodness and we are so very, very grateful.
My parents home burst at the seams with love all day and we finished things off tonight with a major laughing fest that involved slinging sibling zingers around for who created the best adolescent puke for Mom to clean up. Here's a hint: it wasn't Cale or me and my Dad is still pissed off that goulash never made it back into the family meal rotation.
I don't believe any of us made it through the day without losing it a time or six, with my personal finale being the hug my 13 year old son's buddy wrapped my Mom in when he saw her tonight. We are so very, very blessed by all of you and what a testament this love all is to the community my parents created around us.
To clarify a couple questions that came up a few times today from yesterday's post:
1. We will be going to Iowa City on Tuesday, June 11 for a second opinion. Dr. Otteman insisted that we do this, and it is also necessary as if there is a possibility of surgery or alternative therapy, Mary Greeley does not have surgeons on staff to do so. Mom will see Dr. Mark Karwal. We learned today that he has expertise in some areas that give us some glimmers of hope, and I will write more about those when I know enough to be dangerous.
2. Mom has several follow up appointments scheduled this week in Ames to get everything ready for her visit in Iowa City, including an additional CT scan that will take a look at her entire lung and upper respiratory system so we can get a better idea of what is happening there. These tests will all travel with her to Iowa City so that we don't have to reinvent the wheel when we get there. Our hope is that we can leave that day with a very good idea of next steps, and/or can start immediately.
3. I was less than clear also, in explaining the primary drug for HCC cancer, Sorafenib. Dr. Otteman told us that this is typically the 'go to' drug for this type of cancer and really the only drug with any proven track record. The reason that we could not start Sorafenib yesterday is because there is still a possibility for clinical trials. Clinical trials would always include Sorafenib because it is the best therapy available (+ whatever else they are trying), but because of the typical requirements at a clinical intake if you start the drug prior to attempting to get in a trial, you disqualify yourself. We weighed the possibility of something in a trial or even something Dr.Karwal might have in mind with just going for broke and starting Sorafenib yesterday and Dr. Otteman didn't feel that waiting 11 days would create a substantial backwards slide that would negate waiting or even not exploring that option.
It seems crazy to not be able to get in to Iowa City immediately in such a dire situation but Dr. Otteman did remind us that because we are dealing with specialists that are working with one of the most aggressive cancers there is, every person they see is in an emergency/dire situation. Ah, that damned perspective.
Dr. Otteman was quite pleased that we were able to get in as quickly as we did as well as with Dr. Karwal as our physician, and another physician friend of mine also felt this timeline was very expedient given the circumstances.
To end tonight on a more positive note, I'd like to say on behalf of all of us in the most completely inadequate way: THANK YOU.
We may not have yet had time to respond to all your comments and posts but we will eventually, we feel them, and we are taking steps to ensure that Mom reads, holds in her hands, every single one of your thoughts, wishes, prayers, so keep them coming. It is so awesome to overwhelm her with all the love.
We all lamented in some way today that it is just mind boggling the people that have some connection and love for Mom and what a gift it is in the midst of all this crazy to be able to watch her have an opportunity to hear this. So many people are not so fortunate.
I cannot help but allow my mind to wander in wonder at how many people there are in all our lives that we think amazing things about and yet we might never say. And why, because we are never given the opportunity? Fear? Lack of terminal crisis?
To all of you who keep asking, "what can I do?" Today, every day, tell someone you think they are amazing. Tell people you love them. Tell someone why you keep them around and value them. It should not take a crisis of this magnitude to share this kind of sentiment but we all recognize this blessing upon my Mom and we are grateful.
It occurs to me that there is some irony in the fact that my Mom has lived this all along.
Keep the prayers and love coming.