All posts by Casey

Get Up

              I’ve been cooped up in my room for a couple of days now.  I really don’t know what to do.  It’s been a rough stretch here for a while.  I guess a professional would say I’m depressed.  I’m sad, don’t have any direction, I just don’t know which direction to go.  It seems like nothing has been going right.  Time is standing still and it seems like life is just a dream.  It seems I’m watching my life happen from outside my body.  I have no control, no say in what happens.  Life is passing me by.  Living life is what other people do.  It would seem as though I only exist in life, I don’t live it.

I’m doing the natural thing at the moment, flipping through channels like any normal person would do.  Searching for something of value, something to inspire me out of depths of despair that I feel in my heart.  The bad thing is it’s after 2:00 am.  If you have ever channel surfed at that time you know what I’m talking about.  That time of night is infomercial mania time.  I guess if I was a hoarder I would be in hog heaven.  I’m not, so it’s even more depressing.

I’m at the end of my rope so to say.  What else can I do?  I feel I need one last ditch effort to get me out of this misery that is consuming my very soul.  I shut the TV off and turn off the lights and get down on my knees and pray out loud to god:  “Dear Lord, I am a failure.  I have failed my wife, I have failed my kids, and I have failed in my business.  I have judged others, I have walked the path of destruction and I am down on my knees asking you to help me.  I have failed you and everyone in my life!  I am a deceiver. I am nothing.”

I have tears in my eyes as I kneel in the quietness of the darkness.  I stay there for what seems like eternity and from somewhere far off I hear, “Get up.”   I look around the room in the darkness and of course I see nothing.  I think I must be hearing things and then hear it again, “Get up.” I’m getting that watching my life from outside my body again and feeling like I have no control.  And then louder I hear again, “GET UP, You only fail me if you give up.  I forgive you, now GET UP”  I stand up quickly.  I don’t know what is going on.  I hear, “take one step forward.”  I think to myself, what is going on?  Louder now I hear, “TAKE A STEP FORWARD.”  I feel I have no choice so I take a step.  The voice says, “with one step forward there is hope.  With every foot there is less fear.  With every yard there is progress. With every mile there is salvation.  You will never fail me if you keep moving forward.  One step at a time.  Keep moving forward.”

New Set of Eyes

Hi, my name is John.  I guess I will start this out by telling you my story.  When I’m done with it maybe you understand where I’m coming from for the rest of the story.  I am 70 years old.  My wife passed away two years ago.  Nothing fancy, Just a stroke in her sleep.  Good woman she was.  Took care of me for fifty years, sad day in this man’s life.  But she lived a good life, and she died peacefully.  I was the son of a pipefitter, and a pipefitter myself. Good life, paid the bills and such. We didn’t lack for anything.  This is all blah blah I know I’m getting there.

It all started about a year out. I was filled with sadness.  Self pity is a dangerous thing.  It’s funny, when I was younger I would be out and about and see the old guy, you know the one.  Always talking to the young girls, got a story for everything, thinks he knows it all.  Yes, that one.  Well, somehow I turned into that guy.  One day I sat down and realized that I had become what I had laughed at all those years ago.  Some old goat living in the past.  I sat there and contemplated why this had happened.  What was it that made me do the things I was doing.  What was I missing in my life to cause my behavior.  I realized that as I was getting older, retired, and not as productive,I was wanting people to see me.  Not visibly mind you.  I guess the word might be relevance, or significant, or maybe that I serve some purpose in their lives, that in some way I am needed.  It was at that moment that my life changed.  It was at that moment when I started to see the world through different lenses.  I somehow stripped away all of the judgments and stereotypes that had consumed my whole life, and started to clearly see into people’s hearts.  See them for who they really are.  See into the depths of their souls.  See clearly the pain that we all carry around with us.  It was at that points that I truly had my hand on the pulse of life and started to understand.  I was so unprepared for what was about to happen.  But I am blessed now that I understand.  For it is Gods true blessing when you stop thinking about your pain for a moment, and understand that everyone has pain.  We are all in the same boat so to say.  There is hope as I have found out.

It’s an amazing thing, but I have come to understand by focusing and helping someone else with their pain.  My pain seems to disappear. I am struggling to try to put this in words so I have decided to tell you a few of my stories.  Not the old man stories, but stories of people who I have seen.  Mind you I have never talked to them, it is just how I see them now.  I tend to do a lot of people watching these days, and if you do enough of it you hear lots of stories if you listen hard enough.  I don’t hear anything per say,

I’m not hearing with my ears.  I have opened my heart to you all.  I don’t see you as you are but, what you are wanting to be.  I know I’m not making any sense so I’ll get on with it.

Joshua

My name is Josh.  I come from a good family, I guess.  That’s what everyone says anyway.  I am the middle kid of five.  Which is great if you like spending your time alone.   I’m the tweener.  That sounds funny, but it’s not really.  The older kids are always busy, one going to be a doctor like dad, one a lawyer like mom, perfect in every way.  The younger, well, they are just young and cute and have “needs” to be met.  Me, I’m just Josh, You know, Josh.  No, no one really knows me.  I get lost in the shuffle.  That is until I got my nose pierced.  Somehow that one little stud revealed that they did, in all actuality have five kids. I was no longer a ghost lost in the shadows.  It was almost like I was a celebrity the first time the principal called. I really don’t like dressing in black in the summertime because it is so hot, but hey, all I ever wanted was for them to notice me.  Good or bad, It doesn’t matter.  I don’t like being invisible.

Bill

My name is Bill.  I hear through the grapevine that I am a very wealthy man.  I guess I do alright.  I started a little company about twenty years ago and it has been doing pretty well.  I get up at five in the morning and head off to work about six.  I get home around nine o’clock in the evening.  I don’t have anything else to do anyway.  Most people think I am aloof and grouchy.  They always have an undertone of insincerity in their voice when they talk to me.  They think that because I have some money that I should be treated different.  What they don’t understand is that I’m not a bad guy.  I didn’t start this company to only make money.  I figured out what I truly loved doing and did it.  They money just came with it.  I’m not grouchy or aloof, I just get tired of people always wanting something from me.  Don’t get me wrong.  I love to help people, and do it all of the time, usually anonymously.  Most of the time it’s not that they want only money, they want a lifestyle, power or something that they think I have.  Why I am grouchy is because they don’t want to see who I really am.  They want to see who they think I am, some fast guy in a fast car.  I just want someone to love me for being me.

Mary Jane

My name is Mary Jane.  My mother said that she loved Mary Jane in the 70’s, so she named me after it.  How nice of her.  Most people call me white trash, or things a lot worse.  I grew up in a single parent home with my mom and 2 younger brothers.  My mom was seldom home and that left me to take care of the boys most of the time.  It took me a lot of years to figure out why my mother didn’t want us to go to school or get a job.  In some sick way she never wanted us to do better than she did.  Great thinking to pass on to your kids right.  I’ve got long stringy blonde hair and like to wear thick lines around my eyes.  I’m not sure what it is called maybe maschera or something.  I look at the magazines at the quick mart of all those beautiful ladies in the magazine and try to make myself look like them.  It never seems to work.  No one has every showed me how to put makeup on correctly so sometimes I feel foolish when I get done.  I don’t have a lot of money to get a lot of stuff so it’s pretty minimal anyway.   Some of the boys seem to like it, so maybe I’m doing something right.  The bad thing is that it seems like the ones that show interest are all “bad boys.”  Not the perfect situation but at least they will talk to me.  I’m waiting for my prince charming to sweep me off my feet. I  will know who it is when he says the magic words.  I can’t wait till that day when someone looks at me and says “you are beautiful.”

We can’t hear what we are not listening for.  Open you heart and let the world in.  You will never look at that person the same ever again.  You might be surprised what you find once you strip away everything that you think about someone and replace it with what they are actually feeling.  As Forrest Gump likes to say, “Life is like a box of chocolates, you never know what you are going to get.”  See through your new set of eyes, understand that everyone has something going on in their lives that they are dealing with and hurting from.  Open your heart and let them in.  you never know.  You could have been waiting for them your whole life.

John

Reflections

Anger, frustration, sadness, loss, hopelessness, fear, these are all things I am a feeling, I tell my friend as we talk in my living room.  I just want things to be better.  I want her to know that I care.  I want her to know how I am feeling about this.  How she has hurt me.  How if she would only understand how this has affected me.  I wish she would just say I am sorry.  Just stop being so selfish about the whole situation and just be real about it.  Just own up to all the hateful, mean things she has said and just see what she has done.  I tell my friend, she is my sister, she shouldn’t be treating me this way.

My friend has sat calmly through all of my tears and supported me the way a friend does.  We have known each other forever.  We are sisters in spirit.  She tells me she knows how I feel and that everything will be all right.  I am feeling hopeless at this moment, and she politely stands up and says she will be right back.  I find this odd, can’t she hold it for a few more minutes.  I am dying here can’t she see that.

She comes back in and sits down and looks me in the eyes and asks, “Can I be real and blunt with you?”  I am somewhat taken aback by this and say ok as I wipe my latest tears off my cheeks.  She says, “I want you to do something for me is that alright.”  I say, “I guess so, what do you want me to do?”  She pulls out a mirror from the bathroom and holds it in front of me and says. “Look in this mirror and say all of the things that you have told me and then tell me how you feel.”  I look into the mirror and boy am I a mess.  She keeps holding the mirror in front of me and says.  “Relationships are like looking into a mirror. Whatever anger, frustration, fear you see in the mirror will be reflected right back at you.  Relationships are not one-sided.  You cannot control any relationship.  You can only control the reflection that is looking back at you.  Until you decide to take into account what is wrong with your own refection.  You will never find what you are looking for when you take the mirror away.  If your reflection shows anger, then anger will be reflected back to you.  If your reflection shows love,  Love will be reflected back to you.  There will never be a problem that is all someone else’s fault.  No matter how much you feel it is all your sisters fault. Somewhere in this, big or small, you have something that you are accountable for too.  As I said before you cannot control the whole situation, you can only control what you do and how you react.  You are not in a competition with your sister to see who can win.  You are in a fight to try to keep your sisters love.  You do not lose by saying I’m sorry first. You cannot win by destroying your sister and the relationship.  The only competition in a relationship is between you and the mirror.  When you take the mirror away what will your sister see.  We as women are pretty lucky that we always have a mirror handy in our purse. Let’s just say that I have worn out a lot more mirrors than I have purses.  It is very hard to look at ourselves first, and it is a lot easier to blame someone else.

She puts the mirror aside and grabs my hands and says.  “I love you very much, and know that you are going through some hard times right now.  I just want you to know that I will always be here for you and that no matter what happens I will always love you.”  Then she picks up the mirror and puts it back in front of me.  I am smiling.

Love Is

 

What is going on?  Snap out of it man.  I don’t usually talk to myself like this but tonight for some reason I can’t stop.  I’ve been walking around this stupid park for I don’t know how long.  It’s Late, Christmas Eve of all times.  I just can’t get her out of my mind.  I see an old man sitting on a bench.  He looks sad.  What the hell, I sit next to him.  He looks at me and I feel kind of stupid so I say “misery loves company right.”  He just looks at me with that “who are you and why are you sitting on my bench” look. I just smile and lean back, I’m tired anyway.  We just sit there for a while, both in our own thought.  Finally he leans forward and looks at me and says “what’s your trouble son?”  Looking at him for the first time I think I’m seeing a very senior Robert Duval, and I’m just waiting for him to ask me to cut the cards.  He gives me the I’m waiting stare and asks again, “what’s your trouble son?” Not knowing where this was going and not sure I am wanting to go there anyway, I simply say “life.”  Not expecting any grand reply, I don’t get one.  He simply gives me a small laugh.  He says, “life, son you don’t know the first thing about life.”  I think, “oh no, now here comes the how to be a man speech from Second Hand Lions.” Nope, all I get is another little laugh.  He looks at me real serious and says in a real quiet voice, “you’re not here to learn about life.”  Again, that little snicker of a laugh, which is kind of getting on my nerves at this point. He gets louder and says, “Your here to learn about love.”  I give him the international blow off look like he has no Idea what he’s talking about.  My eyes must have given me away because he said, “are you in love or have you lost it?” I think at this point it is better to just keep my mouth shut, so I just sit there.  “Lost it huh,” he says. “I can see it in your eyes, in the way you walk, yep you lost it.”  At this point I’m about ready to stand up and walk away.  He Says, “do you know what love is?”  I say, “of Course, do I look like an idiot.”  His curt reply was “yes.”  My jaw must have dropped to the ground and I got that I am going to kick me some Gus McCrea butt look in my eye.  He just chuckled.  He said in a real quiet voice, “did you ever tell her you loved her?” My immediate response was “yes.”  “I’m sure,” he said.  “When you were walking down the street did you ever hold her hand?  Not because you had too, just to hold it because you wanted to. At night did you whisper in her ear that you loved her, even if she was asleep. You fell in love and thought that was it. Everyone can fall in love.  But you see son, staying in love is a choice.” Getting louder he continues, “you don’t just choose once.  You don’t choose twice.  Every day, Every day you make a choice, do I love her or not.  What choice did you make?  There are no days off, no vacation, and no free pass days.  Did you love her like there was no tomorrow?”  Getting really loud now he says, “If you died today would there be any doubt, any doubt at all, that you loved her?”  He sighs, “So when I asked did you tell her you loved her?” Quieter now he says, “did you?” At this point I am at a loss for words,  so I say “I guess.”  “Not good enough,” he says. “Did you treat her like your most valuable treasure?  Would you travel to the end of the earth to find her?  Did the thought of losing her take your breath away?” Quietly he said, “did you follow her out the door when she left?”  “No,” I said.  “Didn’t think so,” he said.  “So where does that leave us.    How long ago did she go?” Softly I say “a year.”  “Been Looking for anything else” he asks.  “No,” I reply.  “Can I give you a piece of advice?” He asks.  I say, “sure,” it’s not like my answers have stopped him yet.  “Do you really believe that the love of your life is out there?” He asks.  “I don’t know,” I reply. “That person will never see you if you don’t believe they are there.” He says.   Not following I give my best, I don’t know what you are talking about look. “thick headed mule,” he says, “you will never find what you do not believe exists.  If it doesn’t exist up there, you will never see it out here, and they will never see you.  Believe in love son, and it will find you.  Then it will be up to you to choose to stay in love.”  “I get it,” I say.  “So what makes you the resident expert of the park bench on love?”  He gets real quiet and finally says, “I have loved one woman in my life. There was not a day that went by that I did not tell her I loved her.  Every chance I had I would let her know.  It was not always words.  I might just touch her to let her know I was there.  Smile at her so she knew I cared.  Hold her when she was sad.  Laugh with her when the time was right.  Kiss her always, no matter who was there.   Wait on her when she was late.  Hug her everywhere.  Carry her when she was down.  Walk with her when she could not run.  Feed her when she could not feed herself….Just love her always.”  “So where is she now,” I Ask.  He replies, “she’s on her way to pick me up.  I better get going.”  With that he gets up and starts slowly walking down the path.  I look down at my hands for a second to ponder what I just heard and remembered I never thanked him.  I look up to find him and he is gone.  There is no one around, it’s like he just disappeared.  I turn around real fast because I’m positive I heard someone say “cut the cards, what a Mule head.”

August 2016 Update for Tammy-Endings, Beginings and New Roads

     As I stand on the precipice I can’t help but feel the surreal nature that is upon my heart and soul. What force of nature would do such a thing as to shield my feelings and blind my eyes from what tragedy could be bestowed upon my very being? My calmness betrays what true feelings should be running though 13876326_1192438327485814_1831170340025744055_nmy veins. My smile is a mask of fear that should be permeating my very soul to its depths. What of this calmness? What of this surreal nature that is stealing from me the expectation of pain, that is holding in its immense grasp the strings of my heart? For what purpose am I held back from the edge? For what purpose am I blinded from seeing what truly resides at the bottom?
I can only assume that the force is Providence and the reason is hope.
As all of you know us so well by now, you know that it has been a nice relaxing summer full of lazy days sitting around the pool doing nothing. Ya right, its been crazy as usual. I have come to the conclusion that we do not have time for cancer. This summer was nice because Tammy’s chemo was not to invasive so I think in the back of our minds we just pretended that it wasn’t there. It has blown by and here it is the beginning of August and once again times they are a changing. For those of you that don’t know, Tammy accepted the elementary special ed teaching position that opened up this summer. She is excited to be back to being a full-time teacher and nervous at the same time. She really loves working with kids so I know she will be great. It’s crazy that in two weeks we move Tanner into the dorms at KU. We are excited for him. Kylee will be a Senior and can’t wait to join Tanner at KU. Morgan will be a Junior and Tucker will be a Fourth grader. Man how time flies when you’re having fun.
I guess our kids decided that we needed to finish the summer with a big bang. Houston visits always seem to come at the exact worst times. As it turned out the six of us were in three different states this past weekend. Morgan left last Wednesday with her softball team for Arkansas to play in the National Tourney in 16’s. They ended up getting second out of 28 teams and Morgan was named the defensive MVP of the tournament (at second base). We were on the road for most of it but were able to keep up with the games on Game Changer which is a app that is in real-time. Thank you Monique Barras Herbel for keeping that going. Tanner’s American Legion baseball team ended up making it to state so we traveled to Great Bend Wednesday and Thursday for his games. He was going to go with us to Houston but they kept winning. He played Friday at noon, so we packed up the car and threw some extra cloths in for him and headed to Great Bend. They won again, so very reluctantly we got in the car and headed for Houston knowing that the next game could possible be Tanner’s last game of his career. They had a very good season and ended up getting fourth at state. Tucker stayed with Grandma and Grandpa Mann and was the Thaxton representative at the Mann Family reunion in Topeka. Kylee went with us and was blessed to be an only child for the weekend. She was my copilot for the late night driving we did and we had some great talks about the places we want to go, ghost, aliens, denisovans, and Nan Modol.
It was nice having Kylee with us because she helped us focus on other things besides why we were in Houston. We took a day trip to Galveston, did a little shopping, and went to a movie. She helped drain away some of the anxiety for Tammy’s appointment on Monday. We both went in feeling pretty good about how things were going. The real anxiety didn’t set in until Monday morning. As it turns out the dang little #$#$# are growing again. The results were kind of mixed. Some of the smaller ones had not changed or had maybe shrunk a little, but the bigger ones are growing some and that was a concern. Her CEA had also risen to 63 which is about where she was before starting Lonsurf. She will finish out this cycle which is just the rest of this week and then will stop. What’s next is up in the air at this point. There is one more drug in the standard of care. It is Stivarga. We have been hearing about it for a long time and all the doctors have not wanted to use it yet. They say it is a pill that packs a punch. It is the last one so we are there. We laughed a little bit on the way home yesterday that now the Dr’s are like, “It’s no big deal (Stivarga).” The decision that has to be made is complicated. There is a clinical trial that includes Stivarga and some immune therapy drugs. If she starts Stivarga alone she will not be eligible for the trial. The bad part is that right now the trial is only accepting patients in two places Nashville and a place in Illinois north of Chicago. Other places including MD Anderson will eventually have it also but it could be two to three months down the road. The closest place would be Oklahoma City. That would be awesome but we have no idea when it will be open. The trial is in phase 3 so it is showing some positive results so we would like to get her in it if at all possible. The other option is a few phase 1 trials at MD. Tammy meets with her Dr. here tomorrow and maybe he can be some help in finding more information about this trial and be some help in getting her into one. We have a three to four week window here that we need to get something figured out. Before she can start anything they like to get all of the other drugs out of her system. So it looks like we might be seeing some new country in our travels. I will update when we know what is going to happen next. In the mean time, we have a boat load to do before school starts. Thank you for all of you thoughts and prayers.

The Anniversary-Raising the Average

We don’t think much aboutfavorite picture of tammy perishable dates in our everyday life. If the milk has been in the fridge for a while we take it out and smell it, maybe check the date. Maybe just take a little swig and taste it. If its bad we pour it down the sink and try to remember to put that on the list for the next time we go to the grocery store, and if we forget the kids will surely remind us by leaving the bowl with the dry cereal in it from this morning on the counter all day long because they just moved on to the next option after opening the fridge and realizing that there was no more milk. For a lot of cancer patients, that date can mean a whole lot more.
I have really been going back and forth on if I wanted to write this or not. It has been on my mind for at least a month. I have put it off several times. I really like the message that I want to get out, but I really struggle with the content. I have been going back and forth with what my motivation for writing it is, and how it might be perceived by everyone. For some it might seem that we are wanting you to feel sorry for us but that is not why I wanted to write this. For us this is a very big anniversary, and one that we are very thankful for, but that is not the whole message I wanted to get out, “Raising the Average,” is the rest of the story.
Tammy has now beat cancer everyday for one-thousand seven-hundred and seven days. That’s fifty-six months or four and three-quarter years. With out giving you particulars, she has beat cancer three-hundred and seventy-two days longer than the average person with stage 4 colon cancer that has metastasized to the lungs. That is the anniversary. When I say that we are thankful for everyday I really mean that. Averages are just that, an average and are by no means the be all and end all and are just as benign as the perishable date on a milk jug, but I guarantee you listen real close when you are in a little room and someone gives you a perishable date on your life.
The anniversary is a big deal for us because there are no guarantees in life. None of us are guaranteed tomorrow, but it has not been the overriding thought in my head for the past month. My thoughts are how did we get here, and why. My thoughts went to all of the wonderful doctors and nurses we have had, those nasty drug companies that make the drugs that save people’s lives, all of the support and encouragement that we have had throughout this whole process, but my focused narrowed to some very courageous people who somehow never seem to be recognized for all of the work that they do. When we think of cancer research we think of big hospitals, fine doctors, a chemist in their research lab looking for the cure. I am very thankful for all of them, but there is one part of research that could never happen if it were not for some very special people. Of course I am talking about the patients themselves.
Clinical trials are a very important part of cancer research and they would not be possible without patients who are willing to try them. There are no guaranteed benefits for them and besides the cost of the drugs, everything costs them something. Hotel rooms, flights across the country, time away from work, time without their family, you name it and they do it. There are numerous reasons why they do it. It is easy to think that they all do it because they are hoping to be cured. There is some truth to that, we all want hope in something, but I don’t think that anyone yet has been told by a doctor that they will be cured. So why do it. If nothing else they are hoping for more time, but I think the overriding reason is to “Raise the Average.” Their hope is that one day no one will have to sit in a little room and hear a perishable date.
So the last part to this is to say a very big thank you to the very special people who have given Tammy the opportunity to “Raise the Average.” Thank you anyone who has ever been a part of a clinical trial. Without you we would not be celebrating this anniversary. For all of you that are on my friends list, that are currently or have been on a trial, my hat goes off to you. You are my hero’s, and I will be giving you a hug the next time I see you. For my friends that have moved on, I salute you and I think of you often. For those of you just starting your journey always remember, everyday a breakthrough is made and as Stuart Scott so eloquently stated, “You beat cancer by how you live, why you live, and the manner in which you live.” If you see Tammy out and about please stop and give her a hug and tell her congratulations. She will no doubt play it off like beating cancer is nothing and not want the attention, but do it anyway, she deserves it.
The picture is from October 21, 2014. It is one of my favorite pictures of Tammy. When you strip away our masks (our hair), It leaves only our true beauty for all to see. Thank you Brandi for capturing the essence of her beauty.

May 2016 Update for Tammy

“As we all reach the top we gather around and bask in the warmth of the light. We join together and give thanks that we have made it through another valley. That we have traveled through the darkness once again and have overcome. As we set out once again across another plateau to gather our burdens we also gather the light. Yes, I am weary, but with each burden I gather I leave light in its place. That is what I am made for, it is my destiny. I am Dolor Congreget, but also Formans Lucem, a giver of light.”
So here we are again. Another two months have flown by. Its been busy for sure. Since our last chat, Tanner and the boys basketball team took third in state. I now officially have a college freshman, and I have two girls that have qualified for state in softball and track, and a baseball team that was just a breath away from being there also. If you can’t tell I am a very proud daddy. Tammy and I have so many blessings to be thankful for. We have so much to look forward too. Right now we are basking in the warmth of so much light.
We traveled down to Houston early Wednesday morning. Real early, our flight was out of Wichita at 6:10 am. Luckily for me Tammy has been waking up around three in the morning for some reason so we hit the road at a reasonable time. It was a long day of testing for Tammy and then a very long night for both of us. Neither one of us had any idea what to expect at her doctor’s appointment Thursday morning. We knew that her CEA had been fluctuating up and down since she stopped the clinical trial, and that since the start of the clinical trial we had now started talking about growth rates. If we were talking about the growth rate of my IRA I might be excited, but with cancer, not so much. So with nerve endings tingling we head into our little room with our emotions on our sleeves and our hearts in our throats. We really didn’t have to wait very long for the Doctor to come in, which in my mind gave us two options really good, or really bad. So as the Doctor settles in I try to swallow down my anxiety and hear what he has to say. “Your CEA is down and you look stable.” (Deep breath) Ok, it’s good. In our world you have three options with cancer cells. They are either decreasing, stable, or growing. The first two are good, the last one is not good. After being in the not good category for about six months it was definitely good to be in the good category again. She will stay on Lonsurf for another two cycles. Each cycle is a month, so we will head back to Houston about the first of August and check things out again. Tammy is excited because she has felt reasonably well on this chemo and is looking forward to a good summer of baseball, softball, basketball, volleyball, some golf for Tucker and hopefully some lazy days at the swimming pool gathering more warmth and love from friends and relatives.
“As we set out once again across another plateau to gather our burdens we also gather the light.”

March 2016 Update for Tammy

“I am blessed, that I am for sure of.”
What a week! My parents came this week to stay while we were gone and I am for certain they think we are crazy. We definitely wore them out for sure, but I think they have enjoyed it a lot. We started out Monday night with the first round of boys sub-state at home. Tuesday night it was the girls turn at home. Both teams won so on to round two. Tammy and I’s flight left at seven a.m. Wednesday morning so as soon as the game was over we hoped in the car and headed to Lawrence to spend the night. So we gave everyone hugs and good lucks (especially Mom and Dad because the we going to need it to keep up with our crazy schedule this week) and hit the road. Four-thirty rolled around pretty fast and we were in Houston by nine-twenty and off to the races for Tammy’s testing.
We get Tammy taken care of and head home Friday. Our flight was early enough that as soon as we hit the ground in Kansas City we lit out like a rocket for Halstead three hours away. The boys played Thursday night and won the second round and now it was the girls turn. They won and it was finally time to settle down and get some rest. There was only one or two problems. Tucker had a basketball tournament in Solomon Saturday morning starting at eight in the morning which Tammy happened to be coaching. Oh and I almost forgot Morgan had a volleyball tournament in Topeka Saturday and Sunday, aaaaannnnnddd Our oldest two were both in the championship games for sub-state Saturday night. I’m pretty sure my mom and dads heads were spinning by this time and we decided that we needed to divide and conquer. So me, Morgan, and dad head out at five-thirty Saturday morning for Topeka while Tammy and Mom slept in and left the house at six-forty-five. Tucker’s team had a very good day. They didn’t have any w’s in the win column but Tammy said they really had a good day for playing fourth graders. They even got a third place medal (there were three teams in the bracket). Dad and I stayed in Topeka and watched Morgan as long as we could and then fired up the rocket to head two hours back to Halstead to meet up with everyone else which pretty much included the whole family on both sides.
What a great night. I think there were enough happy tears in the gym to solve the water shortage in California. Both teams played great games and congratulations to both coaches. Hesston had two great teams and they played with courage and class. They were very fun, exciting and nerve-wracking games to watch. Both our teams have a very good shot at being state champions and this is very exciting. We are only three games away. A fun fact is that if Kylee and the girl’s team win a state championship it will be the first time since Tammy’s team won it in 1990. That would be awesome. So after a whirl wind and a short stint working a concession stand at eight this morning here I am finally sitting down and getting you all updated. Thank you everyone who helped this week happen. Tammy’s mom and dad are always here to help in any way possible. Thank you Shelly and Annette for coming to the games and helping Morgan getting to where she needed to be in Topeka. Thank you David Barrett and Linda Vialpando Barrett for getting Morgan home safe and sound Thanks to all of our friends who were no doubt doing things that we have no idea about without us knowing because they knew we were about out of gas.
This week has been a week of blessings. We were blessed in so many ways with family and friends, basketball, volleyball, good talks on long car rides, and we even met some very awesome people along the way. There were a few tears along the way. After Tammy’s testing we found out that they were taking her off of the clinical trial. Her growth rate was over the magic 20% and that automatically kicks you out. This was very unexpected on our part, but it is what it is. She will go on Lonsurf which is a chemo in pill form that was FDA approved in September. We don’t know what to expect on it as far as results because it is so new. The side effects are the normal chemo side effects so we will see how Tammy handles them. She meets with her doctor here on Tuesday to get everything ironed out. Tammy’s name is on a list for some new trials that are supposed to be starting pretty soon so we are hoping that she can do one of them. They are immunotherapy studies so we are excited to try that route. She will go back to Houston in May for scans to see how things are going.
Overall this week has been a great week. We are exhausted, but we are full to the rim with blessings. Thank you to each and every one of you. We are blessed, that I am sure of.

Enlarge My Territory

Wow, what a day yesterday ended up being. I would like to say that I just haven’t had time to thank all of you, but I can’t. I have had enough time. I would like to say that our internet was down, but it wasn’t. I would like to find some excuse that I would find acceptable for not getting this done sooner, but I can’t. I have been at a loss for thoughts, words, or actions. I really don’t know what to say to tell you all how I feel. The only thing I can figure out to do is to give you somewhat of a testimony to what you all mean to us.
I never could have guessed October 9, 2011 how my life was going to change the next day. I am generally shy and quiet and would most often just get things done by myself and not ask for any help. Being naïve to the world is a young mans folly, and thinking that I could get this done by myself was just dumb. I soon realized that this was simply not the case. I am simply not big enough for this.
I know that there is a lot of junk on Facebook, but it has been a real blessing for me. Anytime I need to get something out that is happening with Tammy I just post it on here and I can reach so many people at one time it saves me a lot of time. I often wonder though what people think about me posting it all on here. I really don’t worry too much about it, because I know that some of you genuinely want to know how Tammy is doing, but I want you all to know what you guys do for me. There is always a lot of comments about how inspiring we are and we really appreciate that, but from my perspective you all have it wrong. We are being inspired by you. I can’t really explain this very well, but we are like the very tip of a mountain. We are able to keep soaring in the clouds because we have such a strong base to support us. I read every comment that anyone writes, read every person who “liked” our post. Most of the time I do it a couple of times, and every once in a while I go back and read them again. You all have no idea how much support and strength I get from knowing that you all care about Tammy. You have no idea how much I feel your love in my soul, I am able to be who I am because of you all. We are able to keep doing what we need to do because of all of you. You make the Impossible, possible and there is no words that I can say for you to understand how much that means to us. We are so blessed in this life.
Before Tammy started this clinical trial in October I was really feeling the pressure of it all. Knowing the schedule we were going to have to keep was dragging me down. I could simply not figure out where all of the time and resources were going to come from. One long night I could not put it away and finally realized once again that this was so much bigger than I am. I just stopped and said, “I can not do this alone, if this is supposed to happen then it will happen.” Did all of the stress stop, no, but I knew deep down that everything was going to be ok. Pretty soon letters and cards started arriving, envelopes appeared on our kitchen counter, people wanted to have benefits for us. People would walk by and shake my hand and leave a gift and keep walking. I received calls and messages from people all over giving us their love and holding us up when we were beginning to get weary. I realized that sometimes we are not in control. Love is all around us, sometimes we just have to open our heart and it will find us. Thank you for opening your hearts to us. We are humbled by your kindness. We are humbled by your generosity. We are so blessed in this life.
And Jabez called on the God of Israel saying, “Oh, that you would bless me indeed, and enlarge my territory, that Your hand would be with me, and that You would keep me from evil, that I may not cause pain!” So God granted him what he requested. 1Chronicles 4:10

January 2016 Update for Tammy

“You beat cancer by how you live, why you live and the manner in which you live.” By Stuart Scott
     For the past several days I have been digesting and sifting last weeks appointments. Going back and forth with the results of the testing, how the effects of the drugs are affecting Tammy. I have been trying to nail down my feelings about how this all is going to play out. I really haven’t come to any conclusions, but for some reason a “grain of sand” is stuck in my head. Life is hard for everyone. We all have our own set of unique problems that we all deal with on a daily basis. Our challenges are not bigger or harder than anyone’s, they are just different. We are all fighting a battle of some kind and sometimes we all get tired of it, worn out, burned out, wiped out, and just feel like the weight of the world is shoving us down and there is no hope. Hope is a wonderful thing, but sometimes we expect hope to be a big bang moment. A grand gesture, and epiphany moment, a miracle. Hence a “grain of sand,” Hope does not always come in the form that we are expecting. Sometimes it is just small grains of sand that over time accumulate into something that we never thought possible. One grain of sand is nothing, but if you keep gathering them up then eventually your bucket will be full and you won’t know what to do with the extra that is running over the sides. I am not a real patient person when it comes to waiting. So this week I definitely was struggling with my grain of sand.
     We arrived in Houston Tuesday evening and Tammy had her testing done Wednesday morning, everything went good. We were nervous of course, we always are no matter what we try and do. Tammy had only taken about half of the drugs they had hoped her to take because she had been fighting the side effects so bad. This is somewhat to be expected because this is the stage of the trial where they are trying to figure out dosages. They had reduced it once and that was still not enough. Tammy had stopped taking it again on Christmas eve. Her swelling had gotten to the point that she didn’t feel comfortable with what it was doing to her. She can’t restart the meds until her cyclosporine levels get low enough. The bad part about cyclosporine is that only a few labs in the county test blood for cyclosporine. Result take at least a week to get back and so all of the data is a week old so its hard to get anything changed fast so that leads to Tammy being off of the drugs longer that she probably needs to be, but that is the way it is. So going into the doctor’s office we really didn’t know what to expect.
     What we found out is that there has been some growth, but that it is growing at a slower rate than it had been growing from August to October. Since she has been on the trial her growth rate has dropped to 16%, down from 25% in October. Our “grain of sand.” The trial is making a difference. Doctor reduced the doses again in hopes that if we can keep her on it for a longer period of time then she will actually get more of the drug in her than staying on a higher dose and then having to stop. Our hope is that this growth rate will continue to be reduced by being on the drugs longer. If her growth rate gets above 20% then she will not be able to stay on the trial. Her schedule now is she has to go to Houston every two weeks to meet the doctor and do blood work. We thankfully made it through her having to be down there every week. Thanks to everyone that has helped make this possible. There are no words that I can say to thank all of you enough. We will continue to gather our “grains of sand,” and be thankful.