Monthly Archives: August 2009

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

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Hospital Thoughts [from Rachel]

Rachel's big smile (and little eye)

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.

Terry is excited to be home soon.

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

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…

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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.