Tuesday, February 23, 2016

Options?.... talk to your insurance company.

I left off the last post with where we were at in December and trying to decide what our options were to treat the mutation of the CML cells.  There are not many.  This mutation is rare, and most of the targeted chemo drugs on the market do not address or affect the enzyme in this mutation.  There is one drug that is on the market for a few years.  This drug has some serious side effects.  We have been told in 15-20% of patients taking this drug, there have been cardiac, bleeding, and liver issues.

The second option for treatment is Bone marrow transplant.  This could be a potential cure, but also comes with its own complications.  This is also only a 60% success rate according to some well known websites (success rate can be considered cure, as well as survival).  Our doctors assure us that CML is the easiest cancer to treat with a bone marrow transplant and although they have not discussed cure rates with us, lead us to believe that success is higher with CML than other cancers.

So we have been headed down the path of transplant.  Honestly, we are on the path that the doctors send us without really knowing where we are going and/or if it is the right path.  We are trying to do our research and look into options.  The one major issue with dealing with a major health problem is that the amount of control you have over decisions is much smaller than you realize.....for many many reasons.

Of course, we are at the mercy of the doctors we see.  A transplant doctor knows transplants.  He (we have only seen male doctors at this point) might not have as much knowledge about other treatments or medications available.  And we have no idea if the doctor we are visiting is any good.  The medical community is very protective of its doctors.  It is hard to figure out what makes a good doctor and if the doctor we are seeing is one of those good doctors.

One major reason is insurance.  As we start down this path, we are told to check out MD Anderson.  Of course.  They are a major cancer research and treatment center.... one of the best in the nation.  But our insurance doesn't cover MD Anderson.   None of the insurance that we can get cover it.  MD Anderson only accepts insurance policies offered by employers, and we purchase our own insurance plans.  Insurance and cost limit us drastically to the doctors we see, the medical centers we can look into.  Some might argue that his health is worth any price.  But is it?  It is a question no one likes to answer, but in a situation like this, it needs to be addressed somewhat.  We have three girls at different ages, including college.  This affects them and their future as well.  Do we want to completely bankrupt our family and put us into debt for this?  If we knew that by doing so, we would cure the cancer and save my husbands life, maybe.  But we don't.  We have no idea if going to a renowned cancer center gives us any advantage.  There are no guarantees in any of this.  So we walk around all the landlines, we take the path that has been laid out for us, and we hope that by keeping our eyes and hearts open we make the correct decisions.

Wednesday, February 17, 2016

A new journey

My family and I are on a new journey.  One that is still slow.  Steady?  That remains to be seen.

I am not a writer.  I am not a doctor.  But I have decided to try to journal our journey.  So lets start this with the background.

Two years and 6 months ago,  my husband was having a lot of weight loss.  There were other symptoms that had gone unnoticed (mild depression and such).  The weight loss was the real red flag.  He was losing about 1/2 a pound every other day or so.  This prompted him to make an appointment with his general doctor who ran some blood work.  He got a call that evening around 6 pm telling him he needed to head to the hospital at that moment.  The doctor suspected it was leukemia based on the blood work, but the hospital would run more tests to verify.  I knew the moment he called me in what it was.  I don't know how I knew, as I hadn't even been worried at that point about the weight loss (more like jealous!).

We tried to keep calm for the kids sake, and headed straight to the hospital.  A flurry of blood work, a lot of waiting, and many doctors later, he was admitted at midnight and started on a low dose chemo. In the midst of the panic and bad news, our oncologist was calm and reassuring.  Drew was diagnosed with Chronic Myelogeneous Leukemia (CML) which is the "good" kind.  The main concern that evening was that the white blood cell counts were so high, Drew was at a risk for a stroke.  The chemo would bring down the white blood cell counts quicker, and then he would be started on an oral targeted chemo medication that would treat the CML.  He was released a couple of days later and we resumed life "normally".  It sounds weird to anyone who has any knowledge of the word leukemia.  But it was fairly normal.  The chemo in the hospital did not have the typical chemo reaction of hair loss or nausea.  The medication had fairly benign side effects (some weird cramping and mild tummy problems if not taken with food).  But other than more doctor appointments and lots more blood work in the future, we felt like we had dodged a major bullet.  We were told that the medication would work until it didn't, and then there were 2nd generation drugs we could try.  We were told that many people were on this drug for 10-15 years (about as long as the drug existed) and that in the UK, some were considered cured and could live without the drug.  We felt confident that things were going to be fine.  Until.......

This past November, Drew went into his regularly scheduled oncologist appointment.  He was down to seeing the doctor about every 4 months or so to keep an eye on things.  But the BRAC-able levels in his body had risen from virtually zero to 1 %.  (I will fill in medical detail in another post)  The doctor was concerned because those should not really changed, so he ordered more blood work to find out why.  In December we learned that the leukemia cells had mutated, and the current medication was no longer doing its job completely.  The really bad news is that the cell mutation is a fairly rare one that the majority of the second generation drugs do not affect.

More on our options presented next.  


Monday, May 20, 2013

On Being Slow

Stopping in the middle of a training run.... This sign says it all!
I am not a fast runner.  I state often how slow I am.  When someone congratulates me on a race, I always feel I need to follow up that compliment with a "well,  I run really slow".  When I end up talking about running, even to people who really don't know me, I always feel like I have to clarify that I run slow.  As if running slow doesn't qualify me as a runner.  Its a problem I have.  I've thought a lot about it why I do this.  Part of it is I really don't feel like a "real runner".  But, honestly, I also want people to understand that if I can do it, they can too.  That running doesn't have to be fast to count.


There seem to be two line of thoughts.  Those that believe that to be consider a "real" runner, you need to be competitive.  You need to have thoughts of Boston on your mind.  Others believe that as long as you are going out and putting in the miles, you are a runner.  The funny thing is that I believe that as long as you are out there running, then you are a runner.  Except for me.



I work hard at my running.  I push my heart rate.  I might only be running at around a 10 min/ mile pace, but my heart rate is in zone 4.  I run 3-4 times a week, logging my miles in consistently.  I follow training plans.  My pace is not because I am a casual jogger.  My pace just is.

So one marathon, one half-ironman, countless other tri's, half-marathons, and other races..... I still have to tell myself that I Am a Runner.







Sunday, May 5, 2013

Who is your inspiration?

I am tagging onto my last post.  I love reading about inspirational people.... but honestly?  Most of them that get written about, I don't find my inspiration from.  Although those marathon winners, Olympic athletes, and race winners are amazing, they are out of my league.  So I want to spend some time talking about who I actually get my inspiration from.

Kara Goucher and Ryan Hall are amazing athletes.  But no matter how many Yasso 8
00's I do, I will never be considered fast like Bart Yasso.  So for me, these people don't really inspire me.  I respect what they can do, how hard they work, how fast they run.  But they don't inspire me to run.  That comes from the people that I know personally.

One example is a friend who I think has the mental toughness of a battleship.  She quite often uses her runs to work out the many difficulties that life is throwing at her.  She doesn't spend her time on her runs wallowing about how life isn't fair (and it isn't.... she has had to deal with more than what is "fair") but buckles down and lets her body work.

My coach and training partner both inspire me.   Both of them are two of the most upbeat people I know.  They make me laugh, they live their lives with no regrets, and they both have hearts the size of Texas.   They both have achieved great things athletically, but I find that is only part of the inspiration.

Me and my girl after her first half marathon.  And, yes, she beat me!
My last example are my daughters.  My middle one decided she wanted to run in 7th grade.  She started out running with me and barely being able to run 200 yards.  Just this past year, as a freshman in high school she completed her first half marathon.  Now, that?  That is inspiration.

There are so many other examples of people who inspire me.  For this purpose, I tried to limit it to those who inspire me to run, bike, and swim.  But I could go on and on with people around me who inspire me to be better.


Thursday, May 2, 2013

How to Become More.......

I got a wonderful compliment from a friend recently.  My first instinct was to dismiss it..... "nah, not me"  Then after some thought I decided that maybe I should just accept it.  But to accept it, I also had to think about why I could believe it.  I know I am being very vague right now.... but stick with me.  I think that being vague is actually better here.

I decided I could believe it because I do believe that as I get older, I get better.  I am not necessarily faster, prettier, skinnier, or any of that which we most often judge ourselves and others.  But I am better.  I am better at figuring out what is important.  I am better recognizing my strengths and laughing at my weaknesses.  I am better at stretching myself to discover new things.  When I was in high school, my athletic ability was being able to march in marching band.  Within the past week?  I have learned that I am capable of finishing a half ironman.... and within the legal time limits!  The person I am today is NOT the person I was 25 years or so ago.

Now.... back to the question about why I could believe it.  Or, maybe the better question is why I have gotten better at those things.  That, I believe, has everything to do with surrounding myself with strong amazing people.  I remember as a teenager, instead of choosing my friends based on similarities, I tried to choose them based on their social standing in the school.  Obviously that didn't go over well.  Now, I could care less about social standings.  Instead, I have chosen to hang around people that I find interesting, that I have stuff in common with, and that I find inspiring. This has taken time and work.  I am not good at making friends.  But I have found them.  And  they are all amazing people.  They are constantly inspiring me to become better.

So, my advice is.... do you want to run?  Surround yourself with people who love running.  Do you want to cook/bake?  Surround yourself with those who have mastered that art in the kitchen.  Do you want to write?  Read more and surround yourself with those who have a passion for reading and writing.  Those amazing people are out there.  And when you surround yourself with them, you become more amazing as well.  And maybe..... just maybe..... you can help inspire someone else to find their own little bit of amazingness.


Monday, April 29, 2013

Marble Falls Half-Ironman Recap

My recap starts the night before the triathlon.  There were four of us that were doing this tri.  We all headed out to Marble Falls the day before to go to the athletic meeting and stage our bikes.

Amazing staging area.... bench with my name on it!



 Our four sherpas (friends that were coming out as race support and to cheer us on) met us in the evening for dinner.  At the end of dinner I received a call from my bear, my 10 year old.  We are talking and she tells me to win my race.  I laugh and tell her I am not going to win it.  She says, with the wisdom of a 10 year old, "Win it in your mind mommy"  Those words were more powerful than either one of us knew at the time.  They became my mantra and brought me to tears many times during the day.
Race number, ready to go?


After dinner and a restless night sleep, we were up at 5 am to grab breakfast, check out of the hotel, and head to the race site.  I, of course, had my jacket on inside out.  It is what I do.  We got to the site shortly after 6 and proceeded to lay out our stuff near our bikes and get into our wetsuits.  Our sherpas were there already with coffee in their hands and smiles on their faces.  Really, they were amazingly cheerful for that hour of the morning!  One of the girls proceeded to put her wetsuit on backwards.  Much laughter..... and then I realized I had mine on inside out.  As I said, it is what I do.  Luckily it was caught before I was in the water and corrected.

The water temp was a brisk 65 degrees.  It was certainly cold getting in, but we quickly warmed up as we started swimming.  The swim was a mass, in the water start.  It wasn't as bad as I expected.  The first 200 yards was a fight for position, but then it thinned out enough to find a spot.  My swim was good and smooth and one of the best swims I have had in a while.  I barely went off course and kept mostly to the inside.  The only complaint was that my feet were cold.  My feet would be my 'achilles heal' all day.

I exited the swim literally right behind my training partner.  Darn it.... I can't believe she beat me!  AGAIN!  She was faster at transition.  I was busy applying my sunscreen and talking to the people around me.  It was going to be a long day, and I felt one or two more min. in transition time was not going to make or break me (Cindy.... I am not Jules!)  I headed out on the bike.  It was an immediate uphill, but I was prepared for that.  I had been told that the shoulder would be smooth, but it was mostly chip seal which made for hard riding.  The bike course was mostly an out and back made up of rolling hills that were mostly farm land. The indian paintbrush and the bluebonnets were in full bloom and  were breathtaking.  I was being passed a lot on the bike.  It was frustrating but I kept telling myself that it must have meant my swim was good.  It only took about 15 miles into the bike before I had to result to some mind tricks.  I started singing songs in my head.  I spotted my training partner at one turn around.  She was only a mile or two ahead of me. But I didn't really worry about catching her.  My body was hurting.  My back and shoulder were really bothering me and I was just focused on keeping the pedals moving.  I hit the "hard" spot.  There was a 10 mile section that we were warned would be mostly up hill and into wind.  The wind was holding off, the clouds were still mostly covering the sky, so the ride was hard, but not overwhelming.  I saw the sherpa team for the first time since the swim at about mile 30.  It was a welcome sight to see them and Frieda cheering on the bikers!   A quick stop with them so I could grab  some motrin, which helped a lot.  Right before I spotted them, I also spotted the other three girls.  I knew they were ahead of me and it was nice to see where they were at.  I was glad that they all seemed to be having a good bike ride so far.  Another quick turn-around and I got to ride back down the hills.  It was nice to be able to go fast and I felt I was making up some time.  So far, I was happy with how the bike was proceeding and was pretty good at keeping some of the demons at bay.  I was now counting down the miles.  And then 10 miles left in the bike and I lost the loving feeling.  The voices in my head told me I was dead last.  I was alone except for the occasional biker passing me.  And the full-ironman leaders started to pass me here.  My voices told me I didn't belong here.  And that is where my bear's tidbit came back to me.  I might finish last, but I was going to win in my head.  I hit chip seal yet again and it was reverberating through my body.  My left foot was having such sharp pains I concentrated on pulling up on my pedals to try to alleviate the pain.  I was hitting the run course in the last 7 miles of the bike and all I could think of was how far it was.  The demons were winning.  One of the sherpas drove past yelling encouragement and all I could say was how much I hated being there at that moment.      I just kept repeating that I might finish last, but I would do it with dignity and win in my head.  Finally I made it to transition.  The race director assured me I wasn't last, but I wasn't sure I believed him at that moment.  I pulled in to transition in tears and ready to just pull out and not finish.  The thought of 13 miles was overwhelming at that moment.
A quick text to Drew "This sucks" and I reluctantly headed out to run.

I met another woman who was the same pace as me.  We talked shortly as we started out. It is surprising how little things like touching base with another racer can help get you past some hard spots.  It was still hard, but it went from "I'm quitting" to "one step in front of the other"   I decided to try a 4 min run/ 1 min. walk.  I made it to mile 2 and dropped off my water belt because I couldn't stand the feel of it around my waist.  Again, we were running mostly up hill.  It was hard.  I decided that 1 min. walking was not enough and changed it to 6 min. running and 2 min. walking.  But mostly it was running downhill, walking up hill.  The people participating in the race were so incredibly friendly. At my first mile or so into the run, I was passing the leaders who were headed to the finish.  Quite a few of them high fived us and offered words of encouragement.  I have never seen that behavior before and it was very uplifting.  I noticed that some of these leaders were also walking which made me feel better about the amount of walking I was doing.  Shortly after mile 4 Dee (one of the sherpas) joined me.  She talked to me, encouraged me, offered me water, and brought my spirits up.  She was a huge help to me.  I started also talking to some of the other runners that I was "running" close too.  It was great to hear their stories as well.  Took my mind off my own pain.  And I kept trudging along.  A lot of walking, but I ran as much as I could.  The run was an out and back on the same road as the bike.  It was hot and muggy with no shade at all.  On the road.  The run was brutal.  So I kept singing nursery rhymes and counting steps.  And walking.  When I had one of the sherpas by my side it helped immensely.  I am not sure I would have finished if they had not spent so much time running or biking beside me.  I finally made it to 2.5 miles left and Cindy, my coach met me with a ice cold coke.  That tasted so amazing!  One last hill, and I actually ran the last mile in completely.  Between Cindy and the coke, I could do it.  I think it might have been  the most amount of running at one time that I did on the course.  But I ran across the finish line.
Hot, tired, last to finish, but DONE!


Thursday, April 25, 2013

T-2 Self Talk

GULP!

Only two days away from the race.   I am struggling with eating well. ( Oh chocolate, you evil temptress)   I am having dreams nightly; last night I forgot to bring my tri shorts and top to the race so I was naked underneath the wetsuit and trying to figure out how to bike and race.  I am wiggly and cranky.  In other words..... all looks to be normal!

The hardest part about right now is the self-talk.  It is so easy for me to doubt my abilities.  Will I make the cut-off?  Does the race really count if I am slow?  

I know the negative demons will come out and sit on my shoulder many times during the race itself.  Will I be able to ignore them?  Will I be able to drown them out with positive talk?  My mantra will be "I may be slow, but I am out here doing this"  But even that is somewhat negative.  It is something I really struggle with.  I am going to try writing reminders on my arm for the first time.  Reminders of what inspires me and why I am doing this.  Reminders of people and events that I can dedicate this to.

I will be strong.  I will be focused.  I will have fun.  I will appreciate and honor my body.  And I will look forward to refueling with that double cheeseburger and a beer at the end
!