Thursday, November 21, 2013

Not A Statistic

A very dear friend of mine maintained a blog called "Not A Statistic" to document her family's journey a few year's ago. I found it to be the very best title for a blog about this kind of struggle. So I'm stealing it this morning because it's a perfect fit for what transpired yesterday.

Yesterday, Tami and I had a consult at the UNM Cancer Center and met some very brilliant people. I met a surgical oncologist specializing in what I have who was so special, I turned to Tami after he had left and said, "I feel like spiking a football."  It felt that good to be in the hands of someone so incredibly talented. During his exam, as he was pushing on my abdomen and feeling around my rib cage, he stopped, looked at me and said, "This is where the pain is right?"  It was exactly where my most intense pain has been coming from for about a month now. When I nodded, he told me that he could feel a tumor on my liver. It's pressing out on the nerve filled, protective coating for the organ and causing me serious grief. I was flabbergasted. When he came back he verified that I'm not a good surgical candidate right now, a fact that I had already determined through my own research. But he gave me hope. His absolute knowledge of the subject area, bedside manner, respect for my wife and I and willingness to listen made me truly believe that we can beat this, at least for awhile. 

That was the first doctor I saw and, unfortunately, I won't be working with him again...at least in the short term. The next appointment was with the head of the colorectal department and a big name in the region when it comes to my type of cancer. We were psyched. Then he walked in the room. This is where I have to remind myself to breathe and not rush to judge. Our visit was rushed, the topics were matter of fact with little thought put into how to convey the news being told to us. I'm sure that we were put in to his schedule at the last minute and that he is a very busy guy, but it was one of those freight train moments. He asked if the doctor before us had discussed prognosis and treatment options. I said no. He pulled up a chair and said, "It's not good."  Apparently, I have more tumors in my liver than they could count. I also have some pronounced lymph nodes around the primary tumor site in my colon, so there is a possibility that it didn't stop at the liver. Then he gave me the median survivability term for what I have. Now, it should be said that I've read all of this already over the last 4 days, so it really shouldn't have come as that much of a surprise. But it did. And then it was gone. He had moved on to the next subject, treatment. But there was no gap. There was no pause to see how we were impacted, no moment to let it sink in. He had another appointment and needed to get as much information to us as possible. We talked briefly about clinical trials, timelines for starting chemo, second-line treatments like radiation therapy. And the whole time I was trying not to look like a zombie. It was the epitome of the emotional roller coaster. So high up one second and so low the next. 

I said that he gave us a number.  I'm not going to write it down here.  First of all, it's a statistic based on what they normally see with this disease.  With my age and health, I very definitely don't fit into the normal bucket.   Second of all, it's not relevant to me personally...at least I'm trying my damnedest to keep it not relevant.  Of course there is a ton of planning and preparation that has to be done anyway.  It would irresponsible of me not to.  But I'm hoping that it is planning for the mid to long term and not the short term. 

So the plan is to still get my port in on Tuesday of next week.  We are waiting to see if I can start chemo the next day.  That's what I want to do.  It just feels like the right thing to.  This thing growing inside of me is very aggressive and I want to match it stride for stride.  There is the possibility that I'll have to wait until after Thanksgiving to start treatment which means that I will participate in a clinical trial to see if it improves my chances at responding better or faster to chemo at all.  So a holding pattern for today and possibly the weekend.  I'll let everyone know when I do. 

In all of this I think Tami had a worse day than I did.  I came to grips with my mortality in a startlingly short time frame this last weekend.  It became very real for her yesterday.  Her and I make such a great team and I know that we can weather any storm together.  I finally got to be her shoulder to cry on last night.  I'm sure this won't be the last time that we face news like this.  So be sure to include her in those prayers as well. 

Find your strength in faith, love and peace today. (and everyday really)

Jake

5 comments:

  1. Numbers are sh*t.

    Love you both.
    Lori

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  2. Jake, Praying for you and Tami, your whole family. I do not think I've ever personally met you, but I know Wendy and have met your lovely wife. God can do and still does miracles. We are praying for a complete and full recovery for you. We have seen the mighty hand of God move in peoples lives bringing them out of bleak situations into an amazing story that defies all statistics and doctor's reports.

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  3. Jake, I am praying for you and your entire family. I can't begin to imagine the flood of emotions you all are feeling right now and how difficult this is but know you have people praying for you and standing behind you. I read a quote the other day that made me think of you. "If God brings you to it, he will bring you through it" -Anonymous!

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  4. Just heard the news Jake. Joyce, Lauren, and I are all praying for you. Keep up the awesome attitude man!

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  5. Jake, I don't know if you remember me from Miss Wendy's but I just wanted to share that I'll be praying for you. Also, you might want to check out Cancer Treatment Centers of America. My sister works at the Chicago hospital, but they have one in AZ too. You would never be a statistic there. They are all about the patient and their specialty is the patients other doctors are dismissing. If you are interested, my sister can get you in touch with the best reps out there. I'm friends with Tami on Facebook if you need to reach me.

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