Category Archives: Rachel

.::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.

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

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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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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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