.::we judo-chopped this tumor in the arse::.

For those of you that are not part of the social media phenom called Facebook, yet have access (and apparently time) to the internet, I will make things a little easier for you and offer an update – FROM RACHEL – on the news we recently received in St. Louis. So Rachel posted this lil’ ditty on her facebook page (again, it is easy to sign up and get an account and you can join the rest of the world on connecting with other people – just “friend request” Rachel or I). I figured it is better to hear it from her point of view.

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It has been 5 months since we found out about the tumor growing on my eye at a routine eye examine. It was diagnosed as Ocular Melanoma- which is very serious and can be fatal. Within weeks we had visited two specialist, had all types of scans and blood work done, and speed off to St. Louis to see one of the top specialist in the field of OM, J. William Harbour. We were hopeful for a treatment that would not involve the removal of the eye- and were pleased that I was a candidate for Radioactive Plaque Therapy. On August 14, 2009 we checked into Barnes-Jewish Hospital for the first surgery. Not exactly a vacation- as the plaque is about the size of a quarter and about the width of 4 quarters. Radioactive seeds were strategically placed and the plaque was sutured to the back of my eye ball directly over the area the tumor sits. Then we waited for 4 days for the second surgery to have it removed. We were very blessed to have Dr. Harbour and to be part of a research grant to do a biopsy and determine the aggressiveness of the tumor (which tells us the likeliness of wether it will metastasize/spread in the future).

11/16/09- we went for the 3 month follow up. We have been anxiously waiting for the results and had received indications that the prognosis was good. The pictures were a bit scary- it looked like it was morphing into a storm cloud. The tumor has shrunk 3 cm- which is great! The dark edges indicate scarring as it continues to die. His prognosis is that the tumor is DEAD- and the really great news is that it was on the low end of the scale and he does not think it has or will spread in the future. It has also shrunk a bit away from the optic nerve- which hopefully means less vision loss. The tumor will never fully disappear, but it will shrink in width and depth over time.

We were planning on having 3 month follow ups in St. Louis as well as multiple scans and tests to monitor any changes. However, because it is low/non-aggressive- we only have to go to St. Louis once a year for the next 5 years or so. I will get blood work every six months to watch my organs, specifically the liver, to catch anything should it arise. I will see my local opthamolgist throughout the year, but he should be able to do everything from here. I will go in for laser treatment next year to deliver one more punch to the tumor to ensure it is dead. (Sad note- I am no longer able to be an organ donor or give blood.)

At this phase it is considered remission- however the doctor said that all indications show that the radiation was effective and there is no living cancerous cells. The rule of thumb is 5 year for the official ALL CLEAR- but we are believing in the prognosis and that we will not have to deal with this thing or any metastasis EVER!

My eye is extremely dry- the cells that lubricate the eye have been damaged- so I should be buying stock in the eye drops I use because I have to use them a lot to keep it hydrated. I have had double vision due to some scarring on the muscles surrounding the eye- so we are praying that exercise and time will heal that too. We may have to visit a muscle specialist to get it corrected- but that is down the road. I do have vision loss- currently 20/60 or worse in that eye. There is nothing that can be done to correct it. Unfortunately, the damage done by the radiation is not fully known yet and may take a year or so for it to settle. We are still believing that there will be minimal vision changes and that it will continue to be healed and restored. The blind spot is permanent- which is annoying but better then eye removal, right?

We have so many people who have surrounded us with love and support. Terry’s parents have done more then we can ever thank them for to get us through this time. Our families have all sent prayers and love to us through this entire ordeal. Our life group stepped up and showed us their love and even frustrations- and really went through it with us. Friends and families from several churches have prayed and prayed- reminding us that we are one big family. And old friends and new friends alike have sent notes of encouragements. Even strangers have touched our lives in ways we cannot repay.

We are truly blessed by the news and ask for continued prayers that what God has started he will bring to completion. It is very easy to get confused, frustrated, and angry. And if you ever “research” something like this (which I do not recommend)- you will get the most conflicting and negative information, that it is immobilizing. But we continue to move forward and believe it was God who brought this to light at this time.

Thanks again for your love and support. You will never know how much it means to us and how it has brought us through this uncertain time. We have gained so much perspective on what is important and pray that we continue to live for today and to serve others.

AND a big thank you from me to Terry. You are the best husband and have always been an encouragement and rock. I am inspired by your simple faith and unconditional support. I love you and can’t wait for the next adventure.

First trip to STL in July 09.

Second trip in August- night before surgery.

Shiner- after the second surgery to remove the plaque. First time to take the eye patch off in a week.

Third trip in November- night before follow-up appointment.

After 3rd trip- good news!

The doc hooked us up!
Lots of bottles and tubes of eye drops & gel “to try”.

CANCER SUCKS!

Since June- Owen has gone to the Y a hundred times, swam/fished @ Table Rock, started doing his business in the potty, turned 3, seen Ice Age 3 & the Wild Things, started preschool, gone to stables, got pumpkins, dressed as a dragon & fries for Halloween (not at the same time), started a long Christmas list, etc. etc.

.:thought:.

“My heart is turned over within Me, All My compassions are kindled.”Hosea 11:8

O, that our hearts would be turned over, that our lovelessness would be toppled, our hard-heartedness shattered, and our coldness melted by the compassions of God Himself!

O, to love You as you are, to love righteousness, justice, and compassion, and to love human souls as You do! Give us Your own love, Lord. Catch us up in Your heart, and enable us to be an expression of Your Son in this generation, that our sons and daughters might see your majesty.

COMMUNITY

So for those of you at GracePoint this morning, I told you I would post the 40+ New Testament verses that talk about this idea of “one another”. If you didn’t get the chance to join us this morning or are one of my friends from outside of the “GP NATION”, I will post the link to the video when it is available…

Also, if you are looking for the Fall 2009 Small Group Directory, you can find it on the gracepointchurch.tv website under CONNECT.

Now that I, your Lord and Teacher, have washed your feet, you also should wash one another’s feet.
John 13:14

A new command I give you: Love one another. As I have loved you, so you must love one another. By this all men will know that you are my disciples, if you love one another
John 13:34,1 Peter 1:22, 1 John 3:11 (etc)

Be devoted to one another in brotherly love. Honor one another above yourselves
Romans 12:10

Live in harmony with one another
Romans 12:16

Let no debt remain outstanding, except the continuing debt to love one another, for he who loves his fellowman has fulfilled the law
Romans 13:8

Therefore let us stop passing judgment on one another. Instead, make up your mind not to put any stumbling block or obstacle in your brother’s way
Romans 14:13

Accept one another, then, just as Christ accepted you, in order to bring praise to God
Romans 15:7

I myself am convinced, my brothers, that you yourselves are full of goodness, complete in knowledge and competent to instruct one another
Romans 15:14

Greet one another with a holy kiss.
Romans 16:16, 1 Corinthians 16:20, 2 Corinthians 13:12, 1 Peter 5:14

I appeal to you, brothers, in the name of our Lord Jesus Christ, that all of you agree with one another so that there may be no divisions among you and that you may be perfectly united in mind and thought
1 Corinthians 1:10, Phillipians 4:2

serve one another in love
Galatians 5:13

bearing with one another in love
Ephesians 4:2

Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you
Ephesians 4:32

Speak to one another with psalms, hymns and spiritual songs
Ephesians 5:19

Submit to one another out of reverence for Christ
Ephesians 5:21

Bear with each other and forgive whatever grievances you may have against one another. Forgive as the Lord forgave you
Colossians 3:13

Let the word of Christ dwell in you richly as you teach and admonish one another
Colossians 3:16 with all wisdom, and as you sing psalms, hymns and spiritual songs with gratitude in your hearts to God

Therefore encourage one another and build each other up, just as in fact you are doing
1 Thessalonians 5:11, Hebrews 10:25

But encourage one another daily, as long as it is called Today, so that none of you may be hardened by sin’s deceitfulness
Hebrews 3:13

And let us consider how we may spur one another on toward love and good deeds
Hebrews 10:24

Brothers, do not slander one another
James 4:11

Finally, all of you, live in harmony with one another; be sympathetic, love as brothers, be compassionate and humble
1 Peter 3:8

Offer hospitality to one another without grumbling
1 Peter 4:9

Young men, in the same way be submissive to those who are older. All of you, clothe yourselves with humility toward one another, because, “God opposes the proud but gives grace to the humble
1 Peter 5:5

But if we walk in the light, as he is in the light, we have fellowship with one another, and the blood of Jesus, his Son, purifies us from all sin
1 John 1:7

Have salt in yourselves, and be at peace with each other
Mark 9:50

so that there should be no division in the body, but that its parts should have equal concern for each other
1 Corinthians 12:25

Let us not become conceited, provoking and envying each other
Galatians 5:26

Carry each other’s burdens, and in this way you will fulfill the law of Christ
Galatians 6:2

May the Lord make your love increase and overflow for each other and for everyone else, just as ours does for you
1 Thessalonians 3:12

Therefore encourage each other with these words
1 Thessalonians 4:18

Hold them in the highest regard in love because of their work. Live in peace with each other
1 Thessalonians 5:13

Make sure that nobody pays back wrong for wrong, but always try to be kind to each other and to everyone else
1 Thessalonians 5:15

Keep on loving each other as brothers
Hebrews 13:1

Don’t grumble against each other, brothers, or you will be judged. The Judge is standing at the door
James 5:9

Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective
James 5:16

(HT: Jason Bedell Online)

30 years ago today.

Today is my 30th birthday. I never really thought of being thirty before until today. It doesn’t bother me at all, I still look like I am like 21-25, if I looked like I was 30, maybe I would be more upset. I received a text from my mom today -

“Happy Birthday. You were born at 10:59pm on a Saturday and you were 6 weeks early. I did not have any clothes for you yet so you were garage sale clothes for the first month of your life and Kmart and Montgomery Wards clothes after.”

My mom is pretty cool. While she will always be my mom, she has become more like a best friend. Rachel and I hang out with my parents a lot. I never thought I would do that, but then again – I don’t know if I ever thought I would turn 30 so quick!

Thanks mom and dad for having me! I have enjoyed the first 30 years of my life!

Been Quiet…

My blog is a seasonal blog – more of a portal anymore for people to come check up on myself or my family. I have a lot of thoughts – some I share out loud, some I keep to myself, and occasionally I will post them here.

God has really started breaking my heart for those that live in extreme poverty….in my own “backyard”. This weekend I was part of a team that created a project at my church called Servolution – a day of serving our community. God showed up. He helped others in the church understand what He sees when He sees our community. We are hearing countless stories of how God made a difference …

http://codyknutson.com/2009/09/14/you-need-a-james/

God has been doing so much in my life. He is proving Himself faithful to me. I know He is in control, but it doesn’t mean I am not scared. I fear a lot of things. Fear brings doubt. Doubt brings the anxiety. Then I pray that I will be disciplined to take every thought captive and sometimes it is like I just forget about it all.

There is not much to update on Rachel. She still has pain occasionally. She still has weird vision loss. She still struggles with why this has happened. Today we made our 3-month follow-up appointment with the doctor in St. Louis. We were told we would know the research by today, but we don’t. We will be headed back to St. Louis in November. Then and there, we may hear the news. Until then, we will follow-up with a doctor here, and just continue to wait.

Rachel 1, Cancer 0

The plaque removal surgery was this morning, it went great (and fast). Rachel and general anesthesia really don’t mix well, so it was a longer morning of her trying to recover from the anesthesia. She says her eye feels better, but there are still stiches in there which I am sure she will feel after the drugs wear off some. The doctor said the surgery went good, but he would like to do some laser work on her eye (more as precautionary) on our follow-up appointment in November. He wasn’t able to tell much from the biopsy this soon, but will be able to give us more information (the info we need) in about a month. We are meeting with the “eye team” tomorrow morning to go over questions, concerns, and follow-up info.

We will be in and out of appointments over the next year or so, but it should be calm compared to the last two months. Within the next month she will go back to the eye doctor in Wichita to find out progress and to possibly receive some “comfort” medication (possibly including something for her eyelashes to grow back quicker).

The overall recovery process is kind of unclear right now – everyone is different. Because Rachel’s right eye had already been compensating for the loss of vision in her left (unknowingly), we’re hoping she will be able to function somewhat normally and similar to what she is used to.

We are grateful for our friends and family during this time, this is the outcome we were expecting and we are excited to push forward with Rachel’s healing. I will keep you updated periodically on this process. Our hope is that the small number of other people that have been affected with this form of cancer can read our posts, hear what we went through, and know that, although it sucks, there is someone else that has gone through it.

Thanks everyone! We are excited to go home tomorrow. To see our son. To sleep in our own bed. To be able to leave the room and walk around. To enjoy life. And…like this series of posts started out with – be still.

Terry and Rachel

Hospital Thoughts [from Rachel]

Rachel's big smile (and little eye)

Rachel posted some thoughts on her Facebook page tonight, so I thought it would be better to have her share tonight than me. We go into surgery to remove the eye plaque at 7:30 in the morning…We are very hopeful that the plaque has destroyed the tumor and we will anxiously await for the test results on the biopsy that was taken when the plaque was inserted. The biopsy itself was an interesting procedure that we haven’t talked much about. The doctor essentially cut a flap on her eye and was able to remove a small piece of the tumor via needle. The flap was then closed and the plaque was placed on the eye. This could not take place before the surgery as it would allow the possibility for the tumor to spread rapidly. It is better to do it at the time of the initial surgery because immediately after the biopsy, the tumor and exposed area from the biopsy would receive a pretty high dose of radiation. So, in the words of the radiologist, “if the little booger wanted to spread, it was going to have a pretty tough fight to do so.” Anyways, we should receive some very preliminary results tomorrow or Wednesday, but will have to wait for about a month to recieve the information that we really are looking for.
SO, LET ME INTRODUCE TO YOU, MAKING HER FIRST TERRYJOHNSONBLOG.COM APPEARANCE, MY AWESOME WIFE, THE GIRL THAT WILL PUT ANY MAN TO SHAME WITH HER HIGH PAIN TOLERANCE, AND THE ONLY ONE I WILL GET CLOSE TO WITH LIVE RADIATION … RACHEL JOHNSON (insert silent applause in your head here).

St. Louis trip- August 2009- worst vacation ever.
(Although- Terry is probably the best person to be with to keep me entertained.)

I miss Owen- a lot. His birthday is Friday. He will be 3- and can have anything he wants.

To describe my eye- it is very pokey. Like having a bunch of thorns or splinters in it. Not comfortable at all. And it is like the worst vision ever when they take the patches off.
I have a lead shield on top of the eye patch- it is very bulky and keeps blocking my breathing.

I am not nervous about surgery #2 to remove the plaque (tomorrow 8/18 @ 7:30am)- I want it out now! But pray it all goes well- we are praying for a good report on the biopsy and are not sure if we will know much tomorrow or not. And a fast recovery would be nice.

I have watched a lot of Food Network & HGTV this week- currently watching A&E- I might take a long break from TV very soon.
A room down the hall has two big flat screen TVs- ours has two 9″ and the one by my bed is so blurry. I think the medical staff is messing with me since I already look like a pirate.

I think the hospital staff comes in just to look at me. The radioactive signs on the door are intriguing. I would want to look.

I am a big supporter of good nurses- we have had a few really awesome nurses.
I am not a fan of bad nurses- how did you forget my pain medication? I told you I was in pain. (I guess if I stand in my doorway nude- they might pay better attention).

If you didn’t already get the memo- the specialist we have here sends his assistant- a much younger doctor- to check in every day. He talks to us as if we should already know all of the information regarding this treatment and then tries to dumb it down for us. He has bad bed side manners. A warning before you rip tape off someone’s face is always appreciated. If I could- I would to sew bobbed wire into his eye socket and then put duct tape on his face and rip it off without warning for my exam. I would also trim all of his eye lashes off and then reassure him they will grow back just fine. That is just me. And I don’t think it will happen.

We are at the end of the hall- and are basically low maintenance. Just vital and pain meds every few hours- so it kind of bothers me to think that if there was an emergency that they might actually ignore me.

Terry is very interested in the bed pan shower thingy discovered today in our bathroom. I think I might find him trying to use to wash his clothes or something.

I have been Christmas shopping for my family this week. Well actually- Christmas looking. I mean- how awesome would it be to be done with Christmas shopping before the end of August. It would also be nice to get everything shipped to my house and not have to actually go shopping. The only problem- I never know what to get anyone. Suggestions welcomed.

I have the best In-Laws ever. They offered to take Owen the day we got the date and have made this trip easier. I even got a bag of goodies to keep me busy.

I also have the best life group (huge goody basket), friends (best bag of magazines, loaned DVDs, and goodies like socks & hand sanitizer), and caring Dinner Swap group (gift cards and meals this month and I didn’t have to make any). And a few churches around the world who are offering help, encouragement, and prayers- specifically GP, AUMC, & CRFBC. A big shout out to all of the people who have surrounded us with love and prayers- including our family & friends from around the globe who have sent their encouragement.

Oh- and to Mike & Tim- Revelation Remodeling- they built a deck on the back of our house. Seriously- a deck- just like the one we wanted for our landscaping plan- just to say they love us. Thanks to them and their awesome families. We will have you over sometime when everything settles down. How do you really say thank you for that?

(Wow- this turned into an Academy Award speech- we just have so many people who have lifted us up!) So to all of our fans…THANK YOU!!!!

I will be very ready for my own bed and to see friends and family. It is weird being away from everyone. When Owen was born we had an unhealthy stream of visitors. I would like that now…it is lonely after a few days.

Please keep praying. We will be back in STL every 3 months for follow up appointments. At this point we are praying that this treatment is successful and that the tumor is destroyed. We are also praying that the melanoma is not an aggressive form and that with continued screening we will not have to deal with it spreading at any point. And for my vision- to be restored.

We do believe God is with us. And although it is hard to not have questions and doubts- we believe God will lead us through this. There is a reason right? I mean I would not have even gone to the eye doctor and known about this- but I did and now we are praying for God to move.

My thoughts turned mushy- not as funny as Terry. Just know- Terry gets some of his from me!

MUCH LOVE -*Rachel

Terry is excited to be home soon.

Owen's excited for his parents to be home...and to turn 3 on Friday!!!

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…

First 3 days in pictures…

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

Pappy’s

Our great lunch

the smoker

waiting for the oncologist

Cancer Sucks

where we are staying

main entrance

doesn’t she look excited?

right before she left

YES!

the loud people

My TV!!!

Trying to eat

She’s radioactive!