Tag Archives: eye cancer

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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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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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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