Saturday, September 24, 2011

Coming Together

Things are finally starting to come together. 

The last 2 days have been really rough.  I started having really bad muscle spasms in my back and stomach (bad as in curled up in a ball crying when they would happen).  I spent all of Thursday night sitting on the couch watching TV propped up by a million pillows because they were so bad I couldn't even lay down in bed to try to sleep.  When I went to my first appointment yesterday, they got so bad Joe had to get me a wheelchair and took me to supportive care (the department that helps patients with pain or any non-chemo related issues). 

I was crying and a complete mess.  They gave me an injection of morphine and an anti-inflammatory while I was there, and after 20 minutes I was feeling much better.  I left with 2 new meds, an anti-inflammatory and a muscle relaxer specific for spasms.  I slept most of the afternoon and evening and then from 9:30 to 5 this morning!  I feel amazing after all that sleep!  And the best part is that I haven't had any muscle spasms!

So my meds have finally been worked out as far as pain goes.  I hate that I am taking so many medications...4 just for pain & spasms (I normally refuse to take meds, I just don't like to take many) but this time I don't care because they are actually working!

I'm excited that we are going to pick my parents up from the airport this morning.  I can't wait to see some family other than through Skype.  My dad is only staying through Wednesday, and then he and Joe will fly back home, but my mom is going to be staying with me for at least the next 2 months.  We are moving into our apartment tomorrow, I can't wait to be out of a hotel room.  The apartment is super nice, but rent is so much higher here than back home.  One of the main reasons we chose it was because it has a shuttle to and from the hospital and to the grocery store (my mom and I won't have a car here).  It's also great because its set up for patients so it is completely furnished and stocked with "everything but your clothes".

I still have to get a spinal tap done (we had to cancel yesterday's appointment due to being in supportive care) and we are waiting on pharmaceutical approval on 2 of my chemo drugs (if we'll get them free, our insurance approved everything except those 2 drugs), but otherwise I am tentatively set to start treatment on Friday.  I'm happy to get started and get this all over with, but I'm not looking forward to months of chemo and being away from Joe and the kids.  We were able to get 2 free round trip tickets on Southwest for me to use anytime between now and the end of December, so hopefully I'll be coming back for visits soon!

All in all things are finally coming together and I am so glad!  Thank you so much to everyone that has been praying for us, sending us love, good vibes, and any other good thoughts!  I still believe this is where I am meant to be and that Texas is where I am going to finally kick this cancer's butt!

Thursday, September 22, 2011

Making Plans

I hate making plans when you really have no idea what's going on, but that seems to be the way things go around here.  So we've started making plans. 

We will not be flying home on Saturday like we had originally planned.  I am getting a spinal tap Friday afternoon, and will highly doubt I will be up for flying the next morning.  I also meet with Dr S Friday morning to find out exactly what treatment she wants to do for my eyes and she had said the other day she wanted to start it ASAP.  Our insurance has approved one of my chemo drugs (the other 2 we applied to get for free from the pharmaceutical companies and should know by Friday if we'll get them free).  At that point I will probably start my treatment next week.

So, all in all, we really don't have any idea exactly what's going on and yet we are being forced to make plans as though we do.  My parents are flying out here Saturday morning, my mom is going to stay with me during my treatments since Joe has to go back to work.  We've extended our hotel stay and our rental car.  We are waiting to hear back about an apartment for my mom and I to move into for the next 2-7 months.  And we need everything solidified before next Wednesday when Joe and my dad will fly home.  We're making these plans in the hopes that everything doesn't fall through.

Some good news we got today, after seeing eye specialist #4, Dr W, she said my CAR is very very early stage and she is very optimistic at this point because other than my night blindness they can still correct my vision to 20/20 with lenses.  That means I have very little vision loss so far.  Basically, my blind spots are very large in each eye, but the other eye can still compensate for it.

Some other possible good news  happened when Joe got an unexpected call from Dr H back in Ohio (who is on vacation and called from his house) That he feels confident if MD Anderson can work it out and our insurance plays nicely, that after my first cycle (2 months) I could get my remaining cycles at the Clinic, which mean I could  be home for them!  I would just have to fly out here the beginning of each cycle to be evaluated.

And so we keep making plans, not really knowing what exactly is going on.

Saturday, September 17, 2011

This is Where I'm Meant to Be

My last update talked about Dr S and my possible miracle...well, it didn't turn out to be the miracle I hoped for (there had been a teensy weensy itty bitty chance I had been misdiagnosed and had an auto-immunne disorder rather than cancer...too bad that didn't end up being the case!).  But seeing Dr S was still a great thing.  It turns out I have carcinoma associated retinopathy (CAR).

Basically, CAR is the result of someone with cancer producing a certain type of antibody that attacks the retina and eyes, eventually causing blindness (its very rare...go figure!).  The good news is that Dr S is hopeful that since I'm young (this usually only occurs in older people) and it has been caught at a very early stage (I have minimal vision loss so far) that treatment will stabilize my eyes and keep my vision from getting worse.

The bad news is she may want to start treatment right away which means I may not be coming home between my consult & when I start chemo :o(  I'm obviously going to do whatever she wants me to, but it will sure be hard to not come home & see my kiddos. 

I am still in the clinical trial, as long as insurance goes through.  I meet the requirements to get 2 of the 3 chemo drugs free, so I'm hoping for that, then insurance would only have to pay for one of them and my standard of care.  We'll know more this week after another eye consult & testing, a spinal tap, meeting with Dr S again and finding out about insurance.  So, I'll update again when we know more, but I know this is where I am meant to be.

Please keep praying!

Thursday, September 15, 2011

Miracles on the Horizon!

There is still so much I can;t tell you right now, but here's what I can.

As of right now I am scheduled in a clinical trial!  The trial takes 3 current chemo drugs and uses them together to see if the outcome is improved.  Unfortunately, that protocol would require me to be in Texas 3 weeks at a time and then I could be home the 4th week.  Then back for 3 weeks off for 1.  This would be for at least 4 months.  That's a lot of time away from home :o(  But we've alreafy started coming up with a plan if thats the way things go.

Now on to the beginning of my miracle...Joe just happened to mention to Dr Z that I had some retinal issues over the summer.  To make sure it wouldn't interfere with the trial I was sent downstairs to see an opthamologist.  But not just any opthamologist....she's also a neurologist...Joe calls her our very own "Dr House"  We spent 7 hours in her office...7 stinkin' long hours....but in the end it was worth it.  She found out I am having a lot more vision issues than I thought.  I knew I was having trouble seeing in the dark, and that I have major amounts of floaters, but she also found  out I have an unusually large blind spot in each eye (think instead of the size of the tip of you finger, mine is about the size of an open hand.)She also found swollen optic nerves, as well as a number of other problems.

So what does it all mean?  She had me go get some bloodwork today to check for a host of things no one has ever checked for.  She also had me go get an ultrasound of my eyes and an ERG (they put electrodes on my eyes...don't worry it didn't hurt at all!).  Her worst case scenario is that I have carcinoma related retinopathy, or basically b/c I have tumors my body is fighting my eyes, and had it not be caught I could have lost my eyesight.  Miracle #1!  My opthamolgist in Ohio said my eyes were fine just the beginning of July. She says we can now save my eyesight!  Best case scenario I don't want to share just yet.  It has a slim to none chance, but I am holding out hope for the chance.  Let's just say it would TOTALLY change my life!  And by totally I mean its HUGE!

Right now, we're basically "on call"  We"re waiting for Dr S to call with what she found, we're waiting to hear back from Dr Z if I can go ahead with the trial, and we're waiting to hear from our study coordinator exactly what the details would be.  But it all hinges on Dr S.

Now besides all that I had a few other perks that made my day...I found out with this trial I won't need to get a port placed...WOOHOO!!!  One less surgery!  I also found out I may be able to stop my lovenox injections twice a day...YIPPEE!!!  But again the biggest news of the day was Dr S possible new theory.  Its killing me not to share, but we want to wait until there is actual news to share.

On a kiddo note...I MISS THEM!  We skype with them every night before bedtime and it has definitely least me :o)  Julianna went to her second day of preschool yesterday (she missed the actual 2nd day b/c she was sick) and when Joe's mom dropped her off she cried and cried "Grandma, don't leave me here!" over and over., it broke Joe's mom's heart.  But when she got picked up, she was all smiles and even had a ladybug stamp for good behavior!

Will is dealing with a yeast infection right now and his favorite part of treatment is getting to run around naked for a little bit each day.  I really hope when we get back we'll be able to keep clothes on him!  Haha!  Both kids have enjoyed playing with cousins, trips to the apple orchard, checking out Oma & Opa's baby cows and so much more.  I know they are having a great time, but it still gets to me when Julianna asks when we're coming home from "this vacation thing".I really miss them!

Well, folks, I promise that as soon as we have a definite answer and plan as to what is going to be happening here I will let you all know.  But in the meantime, pray like you've never prayed before for Dr S and my miracle!  Thanks everyone!

*sorry for any typos, I'm typing in the dark while Joe is sleeping.

Saturday, September 10, 2011

Hello Texas!

We arrived safely Thursday afternoon, after a few mix ups which included almost missing our plane(even though we were at the airport 3 hours early!) because the gate changed at the last minute, arriving at a different airport than Joe thought (we came into Bush and he thought we were coming into Hobby) and trying to get a rental car since we were at a different airport.  But everything worked out and we are here!

We met with Dr Z for my consult today and basically he scheduled some testing for me on Monday and I will see him again on Tuesday to hopefully get a plan of action.  He did say some things that sounded promising (about my health and type of cancer), but I'm not going to share until I know more and understand them for sure.

So Joe & I have the weekend to have fun.  We're not sure what we're going to do, maybe some museums or something (since I can't do a ton of walking yet).  I keep telling him this is our honeymoon.  Haha!  When we got married, we didn't go on a honeymoon, instead we took our money and bought our first house.  At the time, it was an excellent decision and we were so glad we did it.  We promised for our 5th anniversary we'd take the honeymoon we missed.  Well, this year was 5 years and life had other plans that didn't include an exotic getaway.  Even though this trip doesn't include a beach, or room service, or romantic settings, but rather hospitals, testing and lots of paperwork, it is our first trip without the kiddos.  Every chance we get we comment about how much we're enjoying our honeymoon...heehee!

And speaking of the kiddos, thank goodness for Skype!  Julianna has skyped with us several times each day.  Today she AMAZED me and went through all her alphabet flashcards out of order and got them correct!  She's such a smartie and I'm so glad I'm not missing out on anything while we're here!  We also got to say bedtime prayers with her tonight which was wonderful!  Will also loves to chat with us, mostly just blowing kisses :o)

I hope I'll have more info for everyone soon (and really good info at that!).  Please keep saying prayers, I really believe I am meant to be here right now and that my miracle is just around the corner!