Wednesday, December 31, 2008

The Final Update of 2008

I didn't expect to have any additional updates in 2008 but over the last couple of days some interesting things have happened (and I've remembered some things as well) so I thought I'd better go ahead and make the update.

  • It's 6 months and 21 days since the resection of my brain tumor
  • It's 1 day shy of 3 months since radiation completed
I'm not going to do this in my typical update set since I just sent one out not long ago.

First of all I want to update everyone on Coleman and let you know how to get in if you would like to read his story for yourself. A message from his mom last night says they are home and that hospice has been called in so that he can be with all of them. He is still having a great deal of difficulty swallowing and isn't really communicating much. Their goal is to keep him comfortable. Caden is really struggling as the two of them are VERY close as you would expect twins to be.

I could never really give Peggy's update justice so instead I will give instructions on how to access their page. They have what is called a Carepage and basically it allows them to know who is really watching and have a bit of control over who views. Therefore you do have to sign up for it.

  • Click on the following link: Not a member? Click here.
  • (If the above link does not work, go to and click on "not a member? Click here"
  • Fill in the short questionairre to sign up. This is just to make sure that you are an actual person and not some bot
  • Once you have completed the process and signed in, you can go to the following link:
  • This is Coleman's Carepage. From there you can read his latest update or read his entire story if you choose.
  • After you go there the first time, you can go to, sign in, and then click dashboard. You will see Coleman's page as a link and if you visit anyone else while there you can see them too.
  • If anyone would like some of the Carepages I follow after you have done so, just reply to this email and I'll send them on. Not all Carepages are for children or for brain cancer. There are many different issues out there and it makes you realize how lucky we all are.
Ok, now that I have completed that, I encourage those of you interested in Coleman to check in there and you can leave a message of support to the family there as well. They are an amazing family just as all of the families dealing with the "beast" in its many forms. (Yes, I have a Carepage but just recently and it doesn't say much. If you read my blog or emails the Carepage doesn't say much. It's DreamcatcherAmyOrr )

On to things beyond Coleman. Monday I had an eye doctor appointment. It was something that was long overdue anyway but decided since my optic nerve caught some splatter from radiation (and I have macular degeneration in my family history) I had better get established with someone to monitor it. I am certain they were not prepared for a not-quite-30-year-old to have the history I did. I will admit that I should have taken better care of my eyes in the years since I got insurance. I have never had a "real" eye exam and testing even though I have great insurance for it. I have been to eye doctors and I have worn contacts in the past for minor vision correction but it has always been the doctors at Walmart, Sams, or Shopko where they don't REALLY test you. Well this guy did. He ran several tests on my eyes and saw some things concerning. Yesterday he had me return for a "field of vision" test based on what he had seen. Basically my optic nerve is very swollen and points in the wrong direction. I aced the field of vision test but he wants me to see a retina specialist just to get a second opinion baseline. He said he would be pretty certain that it is from everything I've been through but that it is something to further investigate because it could also be a sign of increased cerebral spinal pressure which could be a bad thing and need to be relayed to my Neurologist. His conclusion is worst case scenario, the Neurologist will want a spinal tap to rule out anything more serious. The jury is out on whether this particular patient will allow this until she is certain that her head has recovered at least marginally from radiation. I am glad he is being thorough and cautious but I can still put on the brakes. He says that basically I have pappilledema which can be very serious in most patients. When you put my history into it, it could go either way. From what I've read on the condition, it is sometimes an indicator of brain tumors so it makes sense that it would also be a side effect of multiple brain trauma. Feel free to look it up for yourself if you want to know more. Anyway, I will be seeing a specialist on the 23rd of January to get the second opinion. In the meantime, I'm not too worried about it but it couldn't hurt to pray that it is just from everything 2008 brought us.

In addition to seeing the specialist you might be seeing me with glasses depending on the situation. A couple of years ago I had minor vision issues. (Not even bad enough I would need to have them for driving.) I chose contacts because I sweat very easily and glasses fog up constantly because of it. I wore the contacts until I injured my trigeminal and my eye became too dry and they hurt constantly. I also didn't return to the eye doctor and wore my glasses for the few times I thought I needed them. (I don't think anyone outside of John and my son saw me with them.) Anyway, my vision has apparently gotten quite a bit worse and I will now need them to drive. He said that the good thing is, my vision for what I do most of the time such as the computer, will not be affected and I can remove my glasses during this time. I get the impression I will very rarely wear them at work and only at home when watching a movie or something along those lines. I will have to wear them for driving. So you may or may not see me sporting my old frames with new lenses. It just depends. After I get the all clear from the specialist or have things tested to verify that it is just from all I've been through, he does have some contacts he said I might try if I'd like. Maybe, I'll be able to get back into contacts. We'll see. Either way, I know it is time to take my eyes seriously and get some correction going on in there. (I have noticed quite a bit of change in vision since surgery so I'm not surprised it's quite a bit worse. I also wouldn't be surprised if I have to see him more than once a year for vision changes.)

So there is the breakdown of how the early part of this week has gone. I do have some other things to run by everyone though. I know some of you work in or around insurance (as does my mom but I have two separate opinions so I want someone to help break the tie). Here's the short as possible version of the story. I get insurance for my son and I through my place of employment. John gets his through his place of employment. I have reason to believe that there is high possibility that I will be without a job at some time in the future. (Those of you I work with, I am just looking over my shoulder because we all know it's a possibility in our future especially with the economy.) John's insurance changed this last year and they were accepting a blanket of "we will take anyone even with pre-existing conditions with no waiting period". Although his insurance is quite expensive to add me to, it would be insurance if I were to lose mine. Since I am no longer insurable because of the brain cancer, this may be a one time shot to ensure I have insurance in the future. John and I talked the the insurance guy and presented it in this exact way. He told us that if I were to lose my job, as long as I had certifiable insurance leading up to it, then his insurance would cover me, including pre-existing, with no waiting period at that time. Now I have been denied insurance from this particular company before. My mom thinks there would be a waiting period of at least 12 months. As I've seen in the last year, there is no way we can be 12 months without insurance for me. Just my MRIs cost over $5000. So those of you that have knowledge of this, would you mind seeing what you can find out? Thank you.

John and I have been getting a lot of things done these last few weeks since we have both been home. There's a lot we haven't done that I wish we had the time to do but there will be other days. We have also had a lot of fun. We've watched a movie almost every night, had a few "Scene It" nights, and just had a lot of fun in general. The jury is still out on what we are going to do tonight. Our original plans are to visit our buddies up in Morton for the big New Years Dance but it will all depend on how I'm feeling several hours from now. As much as I enjoy talking with everyone, if I'm too tired to dance, we're probably not going to make the trip. It's hard to watch when you want to be out there. If we don't, rest assured we will have fun here at home. We will probably pig out on junk food and play games as long as I am able to stay awake. I will also call my baby brother if we decide to stay home and maybe he will join us. I will probably have to make the decision by 1ish on what we are doing because I will require a nap before we leave if I am to make it until midnight. If we don't make it up there, have fun everyone and know we are with you in spirit!!!

I seem to think there is something missing that I wanted to say but I'll be darned if I can remember what it is. I'll just give some more details of the month to come and maybe I'll remember what it was...

Tonight - Read above
Tomorrow - Go to Grandma's house for New Year's "Brunch"
Friday - Take cat to vet to have stitches removed
Saturday - Dance
Sunday - 4H meeting
Week of 5th - Follow-up on new meds Monday, therapist Tuesday, dentist Thursday, Soccer Saturday
Week of 12th - Grandma's birthday, Neurologist, and boys dentist on Tuesday, Soccer Saturday, Yallapalooza on Friday and Saturday (Will not be at dance that Saturday. I know I have KP coming up, if it is for the 17th could someone from dance get a hold of me to try to switch days?)
Week of 19th - Retina Specialist Friday, Soccer Saturday
Week of 26th - Soccer Saturday, 4H and Lincoln Museum on Sunday

That's the month of January as of right now. My schedule usually changes on a weekly basis or sometimes even daily so watch the blog for additional changes.

I have completed my series on blessings. Therefore, I encourage you to go back and read the series that began on Thanksgiving. You can read them all by going here: Blessings You may want to read from the very bottom up to get them in order. (You will have to click "older posts" near the bottom to get to the first one)

I never did remember what I was forgetting.

I hope everyone has a fabulous New Years and may 2009 find you and your family happy, healthy, and safe through it's entirety.

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