For those of you keeping score at home . . .

Ken and I went to Roswell yesterday to sign consent forms for the clinical trial vaccine.  When we got there, Dr. Dy said she had just finished a teleconference with the pharmaceutical company that made the medicine from the last trial.  She told us that they are willing to let me get back on the study if my Bell's Palsy is significantly better within the next two weeks.  I would be getting a lower dosage.  After my headache adventure, another participant experienced the same nasty headache.  Because of this, they have determined that the dosage was too high.  Interestingly enough, the reason for this trial was to determine the correct dosage of this particular drug.  Glad I could be of assistance!  So, before I go back on the study, Dr. Dy would like me to have another CT scan next week.  If there is any progression of disease, they won't put me back on the study because it obviously isn't working.  We would look for another trial, probably the vaccine to start with. But, if there is no progression, or if there is some regression, we'll get back on the study again probably starting on 12/13.

In the meantime, I'm waking up each morning hoping the right side of my face has decided to start working again.  So far, not much luck.  Everyone tells me it's looking better, but I don't really see it.  I just want my face back!  On top of that, I've discovered that this condition is a bit painful.  All of the muscles and nerves on the right side of my face hurt.  No fun.  I've gone out of the house a couple of times.  If I don't smile or try to talk, I almost look like I could pass for normal - unless they focus on my right eye which is perpetually wide open with a look of surprise.  I was wearing a patch on that eye at first because it was drying out so bad.  But, my eye has adjusted and is making enough tears so that I can leave it uncovered.  That's a good thing.  I didn't like the patch.  Ayyye, matie!

I hope everyone had a lovely Thanksgiving.  We did.  Now, on to Christmas.  I look forward to that.  Hopefully, I'll be back on the study and it will be going well.  But, if not, that's OK too.  We'll find something else.  It's all in the Lord's hands.  It's very comforting knowing that He is in charge.

This post is entitled, "Another Study Bites the Dust," or "Hell's Bell's Palsy""

So, last Saturday was to be a big day.  Our daughter, Katie, is moving back home and that was the day of the move.  Well, Ken woke up Saturday morning feeling queasy and dizzy.  We had to find someone to take his place for Katie's move.  As we were discussing possible options, I realized that my right eye was not blinking along with my left eye.  I got up to look at myself in the bathroom mirror and, sure enough, my right eye looked like a one-eyed deer in the headlights.  It would not close.  It was then I noticed that the right side of my mouth was drooping just a bit.  Of course, all kinds of things went through my mind.  Was I having a stroke?  Had the cancer gone to my brain, and the CT scan didn't catch it?  Then, I remembered.  The paperwork we received when we first started this study mentioned the possibility of Bell's Palsy when the drug was administered along with chemo.  When the drug is administered by itself, as it was in my case, there had been no cases of Bell's Palsy - until now.  Anyway, I called Roswell and spoke to the doctor on call.  He said to come in, so we did.  He did a few little tests just to make sure it wasn't a stroke.  Once he ruled that out, I couldn't help but notice his amusement at my predicament.  When he asked me to smile big, raise my eye brows, fill my cheeks up with air, it was all quite comical.  Thank goodness it's temporary!  One to two weeks with treatment of steroids and an antiviral med and I should be as good as new.

As for today, I went down for my third treatment feeling good and ready to go only to find out that because I'm taking steroids, they're going to have to take me off of the study.  Apparently, the steroids would water down the effect of the drug, so there would be no point in continuing.  Dr. Dy said there was a small chance we could begin again after I'm done with the steroids, but they would have to get special permission from the pharmaceutical company and that isn't likely.  So, on to plan B.  They are currently offering a clinical trial that is a vaccine.  If my tumor has a particular antigen, I would qualify for this study.  There is a 15% chance that the antigen may be present.  So, they are going to take a sample of the original tumor and test it.  We should find out in the next week or two.  If that doesn't pan out, Dr. Dy said there are more studies on the horizon.  So, it's back to the waiting game.  The good news is:  the MRI they did of my brain yesterday came back negative.  So, that along with the CT scan makes it official - no cancer up there. Secondly, they took the catheter out today.  My left lung is pretty much back to normal, so no need to have it in anymore.  It's so much more comfortable not having a tube protruding from my side!  Thirdly, I've lost 10 pounds!!  Lastly, aside from looking like Phantom of the Opera sans the mask, I feel great. I'm looking forward to cooking with my girls for Thanksgiving and having a great holiday.

May you all have a wonderful Thanksgiving!

Feeling a little better . . .

First, thanks to my sister for her sweet comments.  I am sooo blessed to have the family I have.  I just haven't felt well enough to post anything until today.  Barb, I appreciate your seeing a need and just taking care of it.  Love you bunches!

Unfortunately, the side effects for this treatment were not as advertised.  I have struggled mainly with severe headaches, nausea and vomiting during and after each of the last two treatments.  The headache was so bad during the last treatment, they sent me to have a CT scan of my head to make sure the cancer hadn't spread to my brain.  Everything checked out OK, but they have me scheduled for an MRI this Monday just to be sure.  In the meantime, my main goal is to manage the pain and nausea.  The discomfort lessens as the days go on.  Today, I'm just dealing with the remnants of the headache which is managed pretty well with just Tylenol. Ken and I actually went out and took a walk even though it was a bit brisk.  It was so nice to be out in the sunshine and fresh air.

I will say without any semblance of pride or embarrassment, I am not looking forward to next Tuesday.  My hope and prayer is that I will feel decent enough to enjoy Thanksgiving with my family.  On the positive side, there is no treatment the next Tuesday.  Yay!

There is one other possible positive to all of this.  For several months now, I've been dealing with light to moderate back pain on my left side.  None of the doctors seemed to be too concerned about it, and ibuprofen usually took care of the pain. During the first treatment, the pain in my back became unbearable.  They had to use some pretty heavy duty pain killers to alleviate it. My thoracic doctor happened to stop by as we had an appointment with him that afternoon to remove the catheter.  Unfortunately, I was feeling way too yucky to have him do that.  But he did take a quick look at my last CT scan while he was there. He concluded that the reason I was having the back pain, is because one of the larger masses in my lung was pressing up against my diaphragm.  The best counsel he had for me at that point was pain management.  The good news?  That pain is practically gone now.  I'm hoping against hope that the reason it has dissipated is because the chemo is shrinking the tumors.  Keeping a positive thought.

Many, many thanks for your prayers, calls, cards, and meals.  Please forgive me for not returning calls right away.  I will call soon.  Please know your love and friendship mean more than I can say.

My faith in my Heavenly Father and Jesus Christ remains constant - my joy on my good days, and my strength and comfort on my bad days.

Proverbs 3:5-6   Trust in the Lord with all thine heart; and lean not unto thine own understanding.  In all thy ways acknowledge him, and he shall direct thy paths.

Sisterly love, hopefully this Sister won't be in trouble for posting this....

Hello All,

I know it's been a little while since Chris has been able to post to her blog.  I guess I'm taking advantage of being the blog administrator by doing this, but I feel it's important.  I will give the short hand version with a few of my thoughts added.

I can speak with absolute confidence that all of us adore Chris and have been amazed at her strength, endurance, and positive attitude.  Right now though she's having a pretty rough go of things.  She's wanted to update her blog but honestly has not felt up to doing it.  Leave it to me right Seester?  = )  Here goes....

She had her second round of the new treatment this past Tuesday.  Chris really doesn't feel well, bad headaches, yukky stomach, and overall just exhausted.  She's discouraged.  I know I have a hard time hearing her talk that way because she is always so strong and optimistic, but I've tried to talk to her about this, letting her know it's ok to let us know she's struggling.  Does that make sense?  I'll be honest, I have a really hard time knowing it's getting to her, 'cause gosh, if it's actually getting to her, it must be terrible.  Wrongo.  It's just that my amazing, wonderful, gorgeous, inspiring Sister is human and it's ok for her to be discouraged and have moments, hours, days, weeks, however long, where this really sucks.  Sometimes I think Chris thinks she needs to be strong for all of us, but that's just not her job.  So, let's be strong for her and give her a soft place to fall.  She loves reading your comments and is really touched by the countless people who love and support her.  The number really is countless.  I have never, ever heard of a person who didn't love Chris from the moment they met her.  So.  We're here for you Chris.  Let us be strong for you!  Take a break, rest, keep your feet up, pet Tucker, cry a little, scream a little, laugh at your crazy family, wish your Sister didn't have the password to your blog, whatever helps ok?  It's not team Jacob or Edward this year, it's Team Chris.  T-shirt info to come shortly.  Who wants one?

I better wrap this up.  I'm getting a little too emotional right now to continue and then I'll really get in big trouble for saying too much.  Thanks everyone for putting up with this intrusion, and thanks for loving my best friend so much, my Seester.   

-Barbra

Stand up, sit down, fight, fight fight!

I'm here at Roswell for my first treatment of TL32711.  Really.  Look it up.  Ken and I got here at 6:30 am.  Ugh.  We began our day with blood work.  Then, blood pressure readings laying down, sitting, and standing up.  This was followed by an EKG.  About an hour later, we were moved to a room with a bed for me and a comfy chair for Ken.  They accessed my mediport for future blood draws, then put in an IV in my other arm because the protocol doesn't allow them to take blood from the same side as the infusion. (otherwise they would have used the mediport for both.)  As it turned out, the nurse wasn't getting a very good blood return from my mediport, so she had to use my arm anyway.  Holy cow!  I have tubes everywhere!  So, the routine goes like this:  Every 15 minutes, they have to take my blood pressure, oxygen level and temperature with me laying down.  So, the nurse comes in 5 minutes before to make sure I'm laying flat, then comes in 5 minutes later to take my  readings and draw blood.  10 minutes later, we do it all again.  Then, for added fun, we add an EKG in the mix.  Somewhere in there, the actual infusion took place.  It took all of 30 minutes.  I have another 4 or 5 hours of tubes, blood pressure cuffs, EKG sticky things, and blood draws.  Then it's home to my favorite chair and Tucker (our Siamese cat).

I can do this once a week. It's not so bad.  In time, the days won't be so long.  As long as I can go about living my life every other day but Tuesday, I'm happy.  Life is good.