Wednesday, September 21, 2011

"Keratoconus" and a PET scan

I honestly hate blogging about these kind of things, but I have promised to keep all of you updated about our Journey down cancer row and so many of you ask "how is the hubby"? It's so easy to blog about happy things and things I have created.  I just want to live in a perfect little world, but life is anything but perfect.  I have decided it's about how you handle your imperfect world.  I hope I am handling my imperfect world with class but some days I really wonder.

OK, lets start with me.   I have had some stress added to my world.  Nothing like what my husband is going through, but certainly has added to our imperfect world.  Lately I have felt that wow I just can't see very well.  I felt I really can't see near or far so WOW these soft contacts of mine really need to be looked at. 

So before my birthday in August I made my annual appointment with my Ophthalmologist.  It was time to renew my drivers license and I was sure I could not pass the eye test.  Well there in the Dr office we discovered I have "Keratoconus"  What is "Keratoconus" you might ask.  Well it's an uncommon condition where the cornea which is usually curved becomes thin and protrudes into a cone shaped cornea.  This caused a serious distortion of vision.  So yes I really was not going crazy my vision has really changed.

When I tell people they immediately look at my eyes.
 I promise you my eyes look totally normal.

Keratoconus is an inherited disorder and we have looked back through my family tree and to our knowledge we don't  have any ancestors that have gone blind.  Because it's a degenerative disease the concern is how much worse is this going to get?  That is the question we will never know.  I hope this is as bad as it will get, but there is a potential that I could slowly (hopefully it's very slow) go blind.

Good grief I have way too much scrapbooking, quilting, photography, yardwork and decorating my house to do not to mention all the fun things in life I look forward to and  I need to be able to see such as my kids growing up and starting families of there own.  This just can't be happening.  So that is when I asked the magical question.  "What is the treatment for this"

Well there is no real treatment to stop the disease.  Mild cases can be treated with glasses or hard contact lenses.  As it progresses surgery such as corneal transplant is recommended, but no guarantee it will work.  WELL, I would rather see a little bit than not at all so I told the doc that surgery is not an option and actually he agreed.  So I have been making weekly trips to my Ophthalmologist.  They have fitted me with some hard contact lenses.  Once the hard contact lens is in my eyeball it causes the cornea to form into the correct shape and I can see.  Right not with the hard contact lenses I can see 20/20 once again and it's a great feeling.  These contact lenses are a pain to use and take care of, but if it helps so I can see it's all worth it.  I am crossing my fingers and praying that this will not get any worse. 

Now for Fred.  Well he feels like a million bucks.  Has not felt this good in a really long time.  So we did a PET scan and those dang tumors in the liver and lungs are trying to grow.  So we could wait and just watch, but our Oncologist felt it would be better to hit them when they are as small as possible.

Therefore we will be starting another round of chemotherapy on Friday 9-24-11.  UGGGHHH we have just had it with chemo and didn't want to start up again and rob Fred of how he feels, but at the same time I don't want to get down the road in 3-4 months and wish we had treated.    So here we go again.  This regimen will cause him to lose his hair which he is having a hard time accepting.  I keep telling him bald is sexy.  I am not sure he is believing me.  Anyway, we appreciate the prayers sent our way as always.

Thanks so much for being such great friends.  I could have never made it this far without you.  Have a great day and "Count Your Blessing's"  Even the tiny little ones.


Carla said...

Thanks for the update Lynette. I think of you often!
I wore hard contacts for years - and yes they are definitely a pain, but certainly worth it if it allows you to see 20/20. Hoping that the condition does not progress any further!! Also wishing your husband the best with this next round of treatment! Take care!

Kate W. said...

Lynette --

Sending so much lovingkindness and prayers your way! Hoping that the contacts will continue to work (I had hard contacts for years, too, and yes, they're a pain, but you're right -- anything is worth being able to see!) and that Fred will do as well as possible with this round of chemo. Will keep you all "close to our hearts" while you go through these trials!

Elynn said...

I'm glad the contacs are working for you, Lynette. You guys have had such a rough time lately. I hope things get better and I will keep you and Fred in my thoughts and prayers.

Karen Pedersen said...

Love you and your family so much. You are in my prayers daily and our family prayers daily. Consider yourself hugged from afar today!

Susann said...

I have hard contacts and love them. I see better with my hard contacts than with soft lenses or glasses. I hope you grow to love them also and that they will help to control your condition. My thoughts and prayers also go to your husband and family as Fred starts the next chapter in the War of the Nasty Tumors. Thank you for sharing this very private and emotional part of your life. Thank you the chance to pray for your sweet family!


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