update – random thoughts

Not much has changed with Rachel. She can open her eye a little when the doctor comes in. It doesn’t look pretty, but is definitely looking better than it did right after her surgery. Rachel didn’t feel well earlier today, but the nausea has kind of subsided for now. We were able to watch the services from our church back home on the internet. It was pretty powerful to watch. We wish we could have been there! I want to say “way to go!” to all of those that took the step to be baptized….nearly 150 in just two weeks….simply amazing!

Since there is not much new news, I thought I would share some random thoughts with you. Some I have already shared, while others probably not.

  • This hospital lets you order food from a menu whenever you are hungry. It is like room service at a hotel. It is nice that we are not just given a plate, that there is a choice…the menu had an item “Barnes-Jewish Hospital’s famous brownies” so we got them, thinking they were awesome…they weren’t. Tasted like they were made from a package…famous? doubtful.
  • I have been walking around trying to run into the rabbi here. I seriously would love to sit down with him over lunch or for a while to ask him some questions that I think only a Jewish Rabbi could answer…maybe I will see him, but then I might get too nervous to talk to him.
  • The shower in our room is disgusting. It makes the roadside gas station in Mulvane look nice…Crazy how much dirt and grime is around the door to the shower and how this is supposed to be a sanitary place.
  • The lady in the room next to us finds that it is okay to stand in the doorway completely naked and yell for the nurse. We can hear the nurse bell go off in her room about every 15-20 minutes. I think the nurses are ready to get her off the floor.
  • Rachel and I went for a walk today…up and down the hall…we request that those on this floor should have signs telling us what they are in for…we are just nosey. There is this one room that I want to know what they are doing here…my hypochondria is kind of getting to me.
  • Imo’s famous pizza was not very good.
  • Rachel is freezing cold because her side of the room is the side with AC vent…I am sweating most of the time – I thought it was just because I was fat, but then I realized that there is no air flow in my corner of the room…ridiculous.
  • I saw a catastrophe cleaning service here last night…probably about 50 workers…did I miss something?
  • I really like St. Louis. I could live here.
  • Rachel had a really long conversation in her sleep last night…It lasted for like 20 minutes…she just kept talking and talking and talking. Just about normal stuff, cooking, shopping, etc. It was pretty cute.
  • Her bed inflates and deflates. It sits up and lays down. Mine feels like they threw a sleeping bag on a piece of metal, so I keep thinking I will ask Rachel to rub my back and then I realize – she has a gold plate behind her eye – she is much more uncomfortable than me…so it got us thinking…they really need a little massage kiosk in the hospital rather than the mall…
  • I think it would be cool if the new church building had a soft-serve ice cream machine in it…just saying.
  • This part of the hospital is really quiet on the weekend…I am thinking about going to hang out in the emergency room later…but then I don’t want to get swine flu…I think the lady down the hall has swine flu…not the one next door, the one that is like 3 doors down. I don’t know but that is what I believe.

Rachel Update: Day Four

Today has been a long day. At times very boring. Since Rachel is confined to this floor, there is not much we are able to do. We woke up early this morning, mainly because she had trouble sleeping. I walked down the street for some breakfast and coffee for her. Rachel has not been eating too much, when she does she it is a small amount and she begins to feel sick. Tonight, she has felt dizzy and is asleep now.

They started removing the patch today to put a topical ointment with a steriod in it to help reduce the swelling of her eye and to prevent infection. It basically looks like she has punched in the eye, but I am certain this hurts worse. Because of the surgery, the doctors had to remove her eyelashes in that eye. What is left has been poking her eye and causing some irritation.

Rachel has been up more today and walking around and we may take a walk around the hall later this evening if she is up to it. She has been able to read magazines, watch tv and get on the computer. Her eye becomes sore after a while, so she will rest them.

It’s kind of lonely up here, our only visitors are the nurses, the food cart, and the occasional worker to check for used linens, etc. We know from experience that we probably would have had a lot of visitors if we were in Wichita, which would have been overwhelming. We have enjoyed the time together though (at least I have – I am sure I annoy Rachel a little though).

That’s it for tonight – I have more tv to watch…

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First 3 days in pictures…

[just fyi – you can click on the picture for a brief description]

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She has a roll of quarters in her eye…

We woke up about the time I normally go to sleep this morning to check in for Rachel’s surgery. She was the first surgery of the day which was nice, but we have both been exhausted today.

Rachel’s surgery went good, the plaque went in fine and there was no concern as far is it going in. She came out of surgery in a lot of pain – something other plaque patients can only relate to, but something the doctors tried convincing us would be minimal. The plaque is about the size of a quarter and as thick as four quarters. It is attached to the back of the eye and as she moves her right eye the left eye is painful.

Rachel is sleeping a lot. Which is fine with me, but I think she would like to be awake. She has gotten on the computer periodically (if you get a chance, give her something to read by posting something on her facebook or by emailing her at raquel226@hotmail.com). She can’t keep her eye open for very long, but I think she is a little bored.

I will post some pictures later this evening, but for now, I am off to pick up dinner from the applebee’s across the street. I think hospitals should be like airports in their food offerings. Instead of a cafeteria, how about a food court?

Thanks, as always, for your prayers during this time.

Terry

(For those of you who asked, Rachel is in room 4943 at Barnes-Jewish Hospital in St. Louis.)

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St. Louis…day two.

As I prepare for a short night’s sleep, I thought I would update you on what we are doing and the coming hours.

Today we spent some time meeting with the oncologist responsible for planting the tiny radioactive seeds on the gold plaque that will be inserted into Rachel’s eye tomorrow. He wanted to simply meet us, go over a few things, and also see if we had any questions. He was a very nice guy and one that has a lot of responsibility in the entire process, but who we will not see much of.

We found lunch afterwards at what is voted St. Louis’ best BBQ joint – it was good…pictures to come soon (for my buddy Jason and friends at the All Things BBQ store). We spent some time driving around town and getting any last minute things before this weekend. Our hotel and hospital is in a very cool part of St. Louis – the Central West End, which is apparently a lot like Greenwich Village in New York…this place is very cool…

Tomorrow morning we will check in at 5:30 am and Rachel will be admitted to the Center for Advanced Medicine for the surgery. It sounds like the one-hour surgery will start around 7:30 and we will then be moved to Barnes-Jewish Hospital later. I am able to stay with her, even though she is radioactive. While Rachel is in surgery, I will meet with some folks from the hospital to understand a little more about my role.

As always, we thank you for your prayers for Rachel. We are asking that the pain be minimal and that she will be somewhat comfortable over the next 4-5 days. We brought a lot of magazines, games, videos, and things that can keep us busy, but we obviously don’t know how she will be feeling.

Talk to you soon!

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Quick Update…

We made it to St. Louis in good time tonight. We are staying next to the hospital where Rachel will have her surgery on Friday. We go in tomorrow for some appointments and to meet a few doctors. We spent the evening trying to relax, checking out St. Louis’ Central West End, and ate at Culpepper’s. We have some time tomorrow as well to hang out before everything sets in.

We greatly appreciate the thoughts, prayers, gift baskets (seriously our lifegroup – and Rachel’s dinner swap group – rocks), the cards, and those of you who have even blessed us financially. It all means so much to us and we are deeply grateful for the awesome friends we have. We definitely feel loved and supported.

I will keep you posted on everything.

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Be Still…

Sometimes the hardest thing for me to admit to is the fact that I don’t understand something. When I don’t understand I feel like I have done something wrong, or didn’t pay attention to the instructions and need them repeated again. When I don’t understand something I will research until I can figure it out – if I even can. When I don’t understand something I get frustrated.

My wife has a tumor on her eye and I don’t understand it.

So in my effort to understand it I have tried to place blame and fault in many places. I have tried to examine my own life and see what I did wrong, or where I didn’t pay attention to the instructions in life. Is this a result of sin? Is this a result of choices that we made as a couple? Is this God “teaching us a lesson”? I don’t understand.

We have many good friends that are praying for us. I work at a church so I have many people there praying for us. In fact, we have many churches praying for us. Some of these friends offer simple condolences. Some of our friends offer advice and tell us what we should be doing. Some of our friends even tell of personal battles with sickness and disease they went through – which makes me not understand.

In these incidences, I think through the many times in my life that I have had to deal with something major or when I went through a season in my life and didn’t understand what God was doing. And the way I dealt with this was to isolate myself for a short time, to quiet my spirit (a song I learned in kids church – quiet me lord!), and to NOT pray, but to just be still…

to stare.

to see if the wind was blowing every single blade of grass or just a few.

to time how fast a cloud was moving across the sky.

to observe an ant at work.

to listen.

to just get away and to “be still, and know that HE is God.” – I love that passage – Psalm 46. It tells us that we should fear. It reminds us that crap is going to happen in this life. It gives us a command, with really no return on our behalf except that we will know that God is God. No amazing outpouring of blessing in return. No moments where God will speak. No instant healing.

I learned something about that word – “still” – the other day. The Hebrew term for that word is “raphah”. It means to sink, relax, sink down, let drop, be disheartened. God is commanding us here to just drop our hands, to relax, to “chill out”, turn our struggle over to God. God is calling us to realize that He is infinite, and we are not.

I am beginning to understand that God is not calling me or Rachel to figure out how to fix things. He is not calling us to figure out what we need to do to change our circumstances. He is not calling us to say a special prayer – but He IS calling us to quiet ourselves. Relax.

Be still.

Stare.

Watch the grass.

Watch the raindrops fall.

Listen to the crickets.

And to realize that as soon as we do this – God will no longer be still – but move in our lives.

update on Rachel

We definitely appreciate your thoughts and prayers for us today. The countless number of emails, facebook responses, texts, etc. has been overwhelming and have been much needed support for us.

Today was a good day considering the circumstances – and we feel much better about treatment and the future then we ever have since the diagnosis in June. The doctor we met with today (Dr.  Harbour) is most likely the expert in dealing with this type of cancer and has developed research and clinical studies that are being used worldwide. He helped us understand the severity of the tumor and also has given us more insight on what is going on in Rachel’s eye. The tumor is large – about half an inch (remember it is on the eye) and is literally sitting on the top of the optic nerve. This is where the major problem lies in determining if any type of radiation treatment will be able to remove the tumor.

Dr. Harbour noticed that Rachel’s body has actually been fighting the cancer and building an immunity against it which was unique int his situation. Because of this, this tells us that this has been a problem that has developed over time and her right eye has been compensating for the vision loss in the left eye.

The doctor believes that a radiation plaque therapy will kill most of the tumor (picture for those that want to see – but it is gross) and what it doesn’t get can possibly be eliminated through laser radiation (because of the size of the tumor, a laser would destroy the eye if that was the sole treatment). This surgery will take place in two weeks in St. Louis. The surgery will start on a Friday and she will have to have a gold plate inserted into her eye with radiation and it will remain on her eye for 4 days. After the weekend, the plate will be removed and she will be released to come back home. During the surgery, the doctor will biopsy the tumor and conduct some very important gene research. This will be able to help us know if the tumor has an aggressive behavior to it where it will most likely spread, or if the tumor will not have a tendency to spread.

If she receives a clean bill of health, there will still need to be some follow-up appointments made. 3-month, 6-month, and 1 year appointments will be made and then we will determine how often testing needs to be done. If there is a chance that it may spread, she will have to return on a more frequent basis and have more testing done to monitor it.

After surgery, Rachel will most likely have impaired vision in that eye, however, since her right eye has been compensating already, there may be a chance that it is never really noticed.

We are obviously thrilled that her eye will be saved, and now the prayers will return to focusing on making sure that the cancer does not spread in her body.

Thanks again for your support – we will keep you updated on this journey.

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Where I’ve Been

So my blog has been pretty quiet lately. There have been a lot of things going on in my life and I really haven’t made much time to take advantage of this outlet. Recently I have had a lot of people concerned for my family and for those of you that have asked or wanted more details, I thought this would be the best venue for it. I won’t promise to post regular updates, but I will try.

THE STORY
Several weeks ago Rachel was nearing the end of her employment with her job and had decided to make an appointment with the eye doctor to basically “use the benefit she had”. At the check-up the doctor noticed something unusual and had originally thought they discovered a detached retina. She was asked to immediately go to the specialist across town and after several tests, he discovered that it was not a detached retina, but a mass on her eye.

Later that week (while celebrating our anniversary and her ending her employment) we had several tests ran and met with many doctors. At a second visit to the eye specialist, Rachel was diagnosed with ocular melanoma – in other words, cancer on the eye. We have discovered that the tumor is quite large (for its kind) and finding that there are not many options of treatment to really eliminate the tumor. There are a few that might work – some type of radiation beam, plaque therapy (where a gold plate with radioactive material is inserted behind her eye for a localized radiation treatment) or total eye removal. Because this form of cancer is quite rare and fatal, the doctors are also very concerned that it may have spread.

Those that we have spoken with have said that the tests we have initially had are not 100% clear if the cancer has spread or not.  Because it is near the nerve and the walls of the eye socket – there is still a strong chance that it has microscopically spread to the rest of her body. There is also a chance that even after the tumor or eye has been removed the cancer can still spread. So regardless of the treatment, Rachel will have to go for continued PET scans to catch anything going forward.

We will be traveling to St. Louis this week to have an expert in the field look at her eye and determine what kind of treatment we will need to proceed with. Needless to say- this has been quite overwhelming for us. This has challenged my faith in some areas, but it is also challenging me seek God in greater ways.

We definitely covet your prayers during this time, and we will keep you updated as best as we can. We are blessed to have good friends and thank you to those that have expressed concern and have already begun to pray.

| terry and rachel |

We have fun together.

We have fun together.

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randomness…

  • I start Summer classes on Monday…I am trying to get through this as fast as I can. I learned that practice as a kid.
  • A great friend of mine is leaving for Costa Rica today. He is checking out a missions organization stationed there and to make the decision whether or not to move his family there. Please pray for him. They are amazing people who have a strong calling on their life. They are hoping for a CLEAR YES or a CLEAR NO. Either way they are called to be missionaries to a spanish speaking country but with something as big as this they want to hear God’s voice. I know you all like to pray – so pray for them. You can check updates on his blog.
  • This is simply hilarious.
  • I posted on my twitter that my new favorite thing to do now is watch my son chase our dog with a stick. He likes to play outside.
  • Went to the Tulsa Zoo over Memorial day. We went to see the Polar bears. One died so they had closed the exhibit. Would have been nice to tell us that that, the aligators, and half of the other exhibits were closed. Anyone else know of any other great zoos within a day trip?
  • Can I have you pray for something else? Please pray for my wife, she is looking for a job teaching middle school social studies. She is actually pretty passionate about the subject and would be an awesome teacher.
  • If my friend Jim ever became a TV preacher – I could see him being like this.
  • Another friend is hosting a cool CD giveaway. The lead singer is in our worship band at church and totally rocks. You should enter.
  • AND thought I would leave you with this…seriously more than ever I feel like God pushing me to challenge the process in society and do something to break the cycle of poverty. Especially with kids. I know that this can take place within a church. I think the church finds itself merely helping people and not breaking the cycle of poverty. Maybe the church is not the place to do this, maybe the church is not called to do this….but for whatever reason I am feeling more called to it. It’s an itch I will have to describe later.

Have a great week. Love on your family. Love on Jesus. Get some rest.