CAR Treatments

So after a crazy treatment week, I finally have a few minutes to let everyone know what's going on with my eyes.  Last fall, when I was in TX, I was diagnosed with CAR (carcinoma associated retinopathy).  Basically my body is producing a certain type of anti-body to try to fight my cancer and that same anti-body has decided to fight my eyes.  CAR is very rare, my new retina specialist here says he may see a case once every 10 years or so, so he is working with DR S in TX to work on my treatment.

Until about a month ago, my eyes were stable, then I started noticing a dark grey cloud right in the center of my vision in my left eye.  It got bad enough that I quit driving again (I couldn't see the speedometer when I was driving).  I also started having problems reading, I had to take my glasses off to read anything and things had to be about 4 inches from my face.  My vision over all was just getting worse too, so I mentioned it to Dr G and off to a retina specialist I went.

After consultations between Dr G, Dr S & Dr N (new eye doctor) a treatment was devised.  I received a shot of cortisone in my left eye last Friday and I started IV treatments this past week.  I had 3 days of IV steroids and 2 days of IV immunoglobulins (some special anti-body to fight my own body's anti-bodies).  I'll keep getting the steroids and IGIV every 3 weeks for a not yet determined length of time.  And I am scheduled to go back to the retina specialist and get a shot of cortisone in my right eye this next Friday.

This has been just another set back, but I am keeping my chin up because some part of the treatment is working.  The cloud in my left eye is gone and I'm driving again, and I can read with my glasses on again!  I've noticed a big improvement in just one week and am so glad I didn't just shrug it off as bad eyesight.

I will say that I did a lot of complaining this week.  It was very uncharacteristic of me.  I was not happy with 5 days of 4 hour or longer treatments, but I know how important they are and am glad its over.  Next week I have chemo and am hoping it doesn't knock me down too much because I have been feeling amazing and would like to continue feeling this way!

Cupcakes at the Camper

Since I've been feeling so good lately, we've been spending more time at our camper.  The kids absolutely love it there!  They both hate leaving it and Will even worries that every time daddy leaves the house he's going to the camper without him.  Last weekend, we took the kids to a cupcake decorating activity while there and they enjoyed every bite of the yummy cupcakes they decorated.



Will is getting so big!  And independent!

And Julianna is such a grown-up anymore, she says the most adult things sometimes!

Thoughts

This morning my cousin's wife commented on my Facebook about how happy she is for me and in her comment she also said she hopes I have been journaling my thoughts throughout all of this.  I haven't.  Other than my updates here (which are mostly medical), I haven't written down any of my thoughts about this journey, or really any of my thoughts about anything.

So, what are some of the thoughts that run through my head?  Here's a few...

*I will beat this cancer...I've never thought differently.

*Chemo sucks...there's no other way to describe it.

*Joe is the most amazing man in the world...he has held our world together and never complained.

*My kids grew up and I missed it...I missed Will as a baby, he was only 8 months old when I was diagnosed and suddenly he's 2 yrs old.  And Julianna is a little person, I swear she isn't even a kid she acts so grown up sometimes.

*My kids have missed out on a good mommy...neither one remembers me before I was sick, all they know is sick mommy.

*I have more friends than I thought...the number of people that came to my benefits and that have helped my family is huge!

*The friends I have are awesome.

*People really are good...I can't believe the number of strangers that have reached out to us in so many ways, from sending me cards to paying for plane tickets.

*I miss ponytails...I thought I wouldn't miss my hair so much, losing it the second time was harder.

*I don't miss bad hair days...throwing a hat on to leave the house is super easy.

*I like being skinny...although I would have preferred a different way to lose the weight

*My family is super duper.

*My sister may really be a super hero.

*Thank goodness for grandmas...I don't know what we would have done without my mom and Joe's mom, their houses are our kids second and third homes.

*Prayers do work...our family can prove it.

*It's ok if Julianna's bow doesn't match her outfit, or if her pants don't match her shirt.

*I like staying home...having nowhere to go for a whole day is nice.

*I love to hear my kids laugh.

*I will beat this cancer...I'll never think differently.

Remarkable!

I had a CT scan today to check the progress of how well my chemo is working.  Dr G told me there could be 3 outcomes to expect...1 )my tumors may have shrunk some, 2) my tumors could have stayed the same size, or 3) my tumors could have gotten bigger.  Well Dr G's exact words when looking at my scans were "your response to the chemo is remarkable!"

Here's the highlights from today's scans (we don't have all the results yet):

*I've had a lot of fluid around my lungs for the last 6 months and today's scan showed it is ALL GONE.

*My pancreas is still a little enlarged, but has significantly SHRUNK in size since my March scans.

*Dr G showed us a scan that had a HUGE mass in it from March (I'm not sure where the mass is, somewhere in my abdomen)...I mean really big, took up half the scan....today's scan showed it is GONE!

We are still waiting for some of the scan results, but I am confident they will be just as good.  Dr G didn't point out a single tumor or mass in today's scan, NOT ONE!  I am hoping that means once the rest of the scans are looked at they won't show any tumors either!  Dr G said a few times that if I hadn't just had the scans done at his center, he wouldn't have believed they were mine  :o)

He is going to call Dr Z in Texas and discuss what to do next, but he would like to do 2 more rounds of treatment and then possibly stop (at least that's how Joe and I took it)  He said he is just amazed at how well this chemo is working for me.

Thank you, thank you, THANK YOU to everyone that is praying for me and my family.  The prayers are definitely being answered.  God is good!