Day 9 . . .

Wow!  Who knew we'd make it this far??  All things considered, I'm doing well.  I was experiencing a little neuropathy (little shooting pains), but that seems to be gone for the moment.  It will probably kick up again after the next infusion.  Mostly, I'm just dealing with a bit of fatigue.  I think the fatigue is exacerbated by the Gabapentin I'm still taking for the Bell's Palsy.  Speaking of which, the Bell's Palsy is almost completely gone.  Woohoo! They'll probably take me off of the Gabapentin next Tuesday when I go in for another follow-up.  My next infusion is the Tuesday after that.

I hope everyone has recuperated from the hustle and bustle of the Holidays.  Our Christmas was one of the nicest ones we've ever had.  Our family felt such an outpouring of love this year.  Sometimes when the weight of this trial feels like it's just too much for our family, the Lord sends angels to bear us up.  Those angels came in the form of extended family members whose kindness and generosity touched our hearts, and friends and co-workers who truly exemplified the true spirit of Christmas.  Thank you.

Now, on to 2012!  Wishing you all a Happy and Healthy New Year full of love and promise.

Until next time . . .

Day 2 ....

I’m doing pretty well with this new treatment so far.  Of course, it’s only been one day.  However, I noticed a couple of days ago that the left side of my face was feeling a little funny.  My smile was a bit off and I wasn’t able to close my left eye tightly. I knew it was a very mild case of Bell’s Palsy now on the other side of my face.  I didn’t say anything yesterday when I went in for my first treatment.  It’s not very noticeable, so I just let it go.  I didn’t want to take any chances that they might not let me on the study.  So, I waited until today when I went in for a blood draw.  I told them it was my birthday, so they weren’t allowed to give me any bad news.  Fortunately, there is nothing in the wording of the study that would cause me to have to quit.  I’m so glad.  No more drama.  That’s my mantra.  NO MORE DRAMA!

Just taking it easy today.  I am a bit tired.  Don't know if it's the chemo or the gabapentin I'm taking for the Bell's Palsy that's making me tired.  Could be both I guess.  It's rainy and yucky outside, so it's a good day to stay in.

I hope you're all ready for Christmas.  I can't believe it's this weekend!  I'm looking forward to it.  Just wish we had a little snow.  

First treatment on new study.

I am so happy to report that all went well today. No headaches, no nausea, no surprises. Woohoo!  Here's hoping the side effects will continue to be minimal.  I go back in tomorrow and Thursday for blood draws, then next week Tuesday and the Tuesday after that for blood draws.  Then we start another round.

Many, many thanks again to all of you for your prayers and well-wishes.

Heartfelt thanks go to our "Christmas angels".  You know who you are.  We have been richly blessed this Christmas season.

I will keep you posted on how things are going.

Love to you all.

CT results a mixed bag.

My CT scan results showed some growth for most of the tumors except for a couple.  The one in my left lung that was causing pain on my left side got smaller as well as one in my right lung.  Strange.  But, that's what makes cancer so hard to predict.  Because of the growth, I won't be going back on the study I was on.  We were given a couple of options.  We could sign the consent for the vaccine and wait 2 weeks while they test my tumor for the antigen, or we could get started on another study next week with a sister drug to a chemo that I've already had.  We opted for this study.  The good news is I showed some response to the chemo, so we're hoping we'll get a good response with this drug.  The not-so-good news is I will lose my hair AGAIN. Other possible side effects include fatigue, flu-like symptoms and neuropathy. Ugh. I'm kind of looking at it as a stop-gap measure - something to get me by until something better comes along.

That's the scoop for now.  Everyone have a great weekend!

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.

Well, strike the last post.

I got a call from Roswell this morning.  Apparently, the final word on that first study is . . . the person ahead of me was not eligible, so I got the slot after all!!  I was shocked because Dr. Dy made it sound like it was a pretty definite no go last Friday.  I go for all the preliminary testing on Thursday.  So, as long as everything checks out, I should be starting treatment sometime next week.  No hair loss and no yucky fatigue to deal with.  Let's hope it works!!

Sending positive thoughts and prayers for the person who wasn't eligible, and hopes for a beneficial alternative treatment.

A slight change in plans . . .

I received a call from Dr. Dy late yesterday afternoon.  I think I neglected to say in my last post that there was one person ahead of me for the one slot left in this study.  We were told that there were some issues regarding eligibility for this person, so they didn't think he/she would get the slot.  Dr. Dy seemed relatively certain that I would get the slot.  Well, it looks like this other person is going to get it after all.  I am a bit disappointed.  But, then again, who knows if it would have worked anyway.

So, on to plan B.  There is another study that I can get into pretty quickly with a sister drug of a chemo that I had earlier this year.  The good news:  My tumors responded to the chemo, so hopefully they'll respond to this drug.  It's administered by infusion at the hospital once every 3 weeks, so less time at the hospital.  The not-so-good news:  Fatigue will be an issue, as well as some neuropathy. And, I will lose my hair.  :(   Oh well.

It might be kind of fun looking for a new wig.  My old one is blond.  I'm just not comfortable being a blond anymore. I kind of like the silver/grey in my hair.  I think I might try to keep that color scheme if I can.  Curly or straight - I'm not sure yet.  I'm open for suggestions!

Clinical Trial

Ken and I went to Roswell for an appointment with one of the doctors who is over their clinical trials.  She (Dr. Dy)  was great.  I dealt with her a little bit the last time we went this route, and she was the one doctor I really liked.

She told us about a clinical trial at Roswell that has one slot remaining.  It starts next week.  I don't remember the name of the drug.  It has a long name with numbers after it.  The paperwork is in my purse somewhere. The idea of this drug is to get into the tumors and cause them to implode or self-destruct.  It would be administered by infusion at the hospital.  The infusion would only take an  hour, but I would have to stay a total of 12 hours so that they can monitor my blood pressure.  Apparently, when they tested this drug on DOGS, their blood pressure dropped.  Yes, I said dogs.  No worries.  They've done plenty of testing on humans, too.  I am not the first.  In fact, to date, they haven't seen any blood pressure problems in people.  But, protocol requires that they monitor us humans closely just in case one of us has a bit of canine somewhere in their family tree.  Kidding.

So, I would go to the hospital one day a week for three weeks, then have the fourth week off.  There are no other major side effects with this drug, so I should be able to keep working and doing normal stuff.  Yay!!  And I can keep my hair!!! (A small tender mercy, but so appreciated!)  They'll do a CT scan every 8 weeks to see how I'm doing.  If there is shrinkage, no progression, or very little progression, I can stay on it. So, here's hoping I have NO allergic reactions, and here's hoping that in 8 weeks I'm in good a shape as I am now, or better!

A couple of things . . .

My husband and I had our first "drain date" last Thursday.  We set up his laptop on the dining room table so we could go step by step along with the instructional DVD.  We laid out all of the paraphernalia on the blue sterile field.  (That's the official medical term.  It's a large blue paper towel, but that doesn't sound as important.)  We turned on the DVD and began the process.  Ken got me all hooked up to the special vacuum sealed bottle, broke the seal, and waited for the floodgates to open.  We got a drip . . . then another drip . . . then two drips.  Very underwhelming.  We thought that maybe we did something wrong, so we went over everything again.  Still, nothing but drips.  We got maybe 20 cc's of fluid.  Quite a difference from the 800 cc's we got with the first drain at Roswell last week.  I was sure there was more fluid in there and thought there must be an obstruction of some kind.   I was particularly concerned because I had plans to go to a fun women's conference in Rochester Friday and Saturday, and I didn't want anything to get in the way of that.

The next day, I called Roswell and told them what happened.  They told me to come in, go to x-ray first, and then go to the thoracic clinic.  I thought for sure they were going to have to flush the catheter somehow, which sounded very uncomfortable to me.  By the time I got to the clinic, they had already seen the x-ray.  I was told it looked great.  My lung is almost back to normal and there is very little fluid left in the cavity!  I was really surprised.  I thought it would take a lot longer for the fluid to dissipate.  That's why I was sure there was something wrong with the catheter.  They did a drain there just to put my mind at ease, and again only got about 20 cc's.  They want me to keep the catheter for a while longer just to be on the safe side which is fine with me.  It should be coming out sooner than later, though, which is awesome!

I left Roswell feeling great and looking forward to "Time Out for Women" in Rochester.  It was held at the convention center there with incredible speakers and musicians.  It's sponsored by our church, the Church of Jesus Christ of Latter-Day Saints (Mormon), but there were hundreds of women there, many of different faiths.  I was so looking forward to the uplifting and inspirational messages and music.  Most of all, I was looking forward to a brief but much needed escape from all things CANCER!  Surprisingly (or maybe not so surprisingly), I found this was not to be.  I discovered that too many people have been touched by cancer in some way for it not to come up.  Dallyn Vail Bayles was a singer there at the conference - a very incredible singer, by the way.  He introduced one of his songs by telling us that he had recently lost two family members to cancer.  One of them was a young mother of two.  Before she passed, she requested that Dallyn sing her favorite song at her funeral called "Better Than I".  Some of the lyrics:

If this has been a test
I cannot see the reason
But maybe knowing I don't know
Is part of getting through
I try to do what's best
And faith has made it easy
To see the best thing I can do
Is put my trust in You
For . . .



You know better than I
You know the way
I've let go the need to know why
For You know better than I

Needless to say, I dissolved in a puddle of tears as he sang that song.  Not sad tears, but incredibly grateful tears.  He was singing exactly what has been in my heart.  The combination of being in a room filled with faith-filled women and listening to music that spoke to my heart was overwhelming.  The Spirit was so strong.

Later in the program, we had the privilege of hearing from an incredible woman who had had 5 major operations in her life due to cancer.  The last one left her completely blind.  She was amazing!  She admitted that after that last surgery, she really didn't feel like she wanted to continue in this life.  But, in time, she found her smile again and was able turn things around.  Some of the stories she told were hysterical.  She was not only a wonderful example of faith and strength, she exuded a love of life and the ability to be truly happy in spite of trials.

No escape from cancer for me.  That's OK.  It is what it is.  I am blessed to be touched by those who have been inspired or strengthened in some way in connection with this crazy disease.

The peace and gratitude I feel is due to the love of God, the Father and His son, Jesus Christ.  That love not only lightens my burden and makes it easier to bear, it causes me to feel true joy in spite of it all. My heartfelt desire is to pay that blessing forward to those who are struggling to understand why these things happen sometimes.

We have a game plan . . . well, almost.

Ken and I met with Dr. Khushalani this afternoon.  Surprisingly, he had just gotten off the phone with Dr. Deshpande.  They FINALLY connected!  Woohoo!!

We discussed several different options.  He feels that I would benefit most by continuing to go the clinical trial route, while perhaps using the Adrimycin as a possible 2nd line of defense.  There are two clinical trials here at Roswell that may be beneficial for me.  One of the trials has only one slot left and another patient is being considered for that slot. If for some reason this other patient turns out not to be eligible, I might have a shot. The other trial doesn't begin for 2 weeks and he's not sure how many slots will be available for that one.  I'm scheduled to meet with Dr. Dy (dee) in the Clinical Trial Dept next week.  She will be able to give us a better idea of what may be available.  If it turns out I have to wait a longer period of time than 2 or 3 weeks to get started on something, Dr. Khushalani suggested a couple of rounds of Adrimycin with the heart protectorant could be an option for the interim.  He would not suggest using Adrimycin as our first line of defense because while I did have a total response to it the first time, the tumors were back within 3 months.  He said if I had gone 6 months or a year without any regrowth, it might make sense to try it again.  Since that wasn't the case, the risk to my heart would most likely outweigh the benefit, even with the protectorant.  However, he seemed to feel all right about a couple of rounds in the interim, if need be.

We felt pretty good after the appointment.  We have met Dr. Dy and feel very comfortable with her.  I hope she'll have some good news for us next week in the way of available clinical trials. In the meantime, I feel good. Ken is becoming proficient at helping me with my catheter.  Hopefully, it will be able to come out soon.  Although, it could be a fun Halloween prop.  Hmmm.  I'll have to give that some thought.

Who knew using this little catheter could be so involved?

Went to Roswell today to learn how to drain this fluid myself.  Well, actually I couldn't do it myself if I had to. It definitely takes 2 sets of hands.  But, before I go into that - I ran into Dr. Khushalani in the elevator.  I asked him if he had heard from Dr. Deshpande yet and he said no.  I told him that he should hear from him today or tomorrow.  Truth be told, I wanted to hold him hostage in the elevator and get Dr. Deshpande on the phone right then and there.  Would that have been too forward of me?

Back to my training session.  The nurse was wonderful.  She went through everything step by step.  Fortunately, the kits come with written detailed instructions, and there is also a DVD showing the whole procedure.  Good thing.  I would never remember on my own. Everything has to be sterile, so you can't touch this or that unless you have gloves on.  There are "clips" and "valves" and we have to know where they go and in which order.  Holy cow!!  My mother was there with me to be my 2nd set of eyes and ears, but she probably won't be helping with the draining at home.  Ken will be my assistant for that. Poor guy.  He didn't sign up for this!

One last addendum - turns out the 2nd pathology report on the fluid came back negative.  So, now the doctors are looking at it as a true negative.  This is a very good thing.  If we can shrink these tumors down with chemo or other means, surgery may yet be an option after all.  Woohoo!!

Thanks to everyone for your prayers and good wishes.  For every new day the Lord gives me, I am truly grateful.

Guess who called??

I was at the gas station filling up my tank yesterday when I got a call from Dr. Deshpande.  He was so gracious.  He apologized up and down for not getting back to me sooner.  He said he has had a crazy week which I don't doubt.  I don't know how these oncologists do it!  Anyway, he went over what we had discussed at our meeting on 9/28.  He has emailed Dr. Khushalani with this information and will follow up with a phone call.  He tried to call yesterday, but the clinic is closed on Saturdays.  He was reluctant to leave a message, so he will call again on Monday.  He reiterated that he would be in touch with me as soon as he connects with Dr. Khushalani.

I guess it's true - the squeaky wheel does get the grease.  Thanks to those of you who assured me that, under the circumstances, it was OK to be a pest.  I will give him till the middle of next week to get back to me.  If he doesn't, I guess I'll go back to being my new pesky self!

I'm a little teapot . . .

I had my catheter put in today.  They drained quite a bit of fluid before they put in the catheter which was quite a relief.  My breathing is almost normal again - yay!  I still have a bit of a cough, but they tell me that's normal. However, I have to cough "gingerly" because it's quite painful around the incision site. Very unsatisfying!  I go back to Roswell on Tuesday to learn how to use my new catheter to drain the fluid myself.  It sounds like the more often I drain it, the quicker the fluid will dissipate altogether allowing my lung to inflate and re-position itself as it should be.  With any luck, I'll be able to have the catheter removed in a month or two. 

I have not heard anything from Dr. Deshpande at Yale.  I'm a little disappointed about that.  I've emailed him, and I called and spoke with his secretary/receptionist on Wednesday.  She took all of my info and said she would give him the message that I was waiting to hear from him.  I was hoping I'd hear something today.  No luck.  Looks like I'll be making phone calls again tomorrow.  I really hate to make a pest of myself, but he is not leaving me much choice.  I'm not angry, just determined. I honestly don't know how cancer doctors do all that they do. It amazes me. As a patient though, I can't allow them to let me fall through the cracks.  I'm anxious to get started with some sort of treatment.   Hopefully, I'll connect with him tomorrow.

Meeting With the Doctors at Yale

All in all, I think it was good day. We first met with Dr. Detterbeck. Charles and Melissa were able to be there as well. Dr. Detterbeck basically told us that, after looking at my latest scans and reports, he felt that surgery was no longer an option. Unfortunately, the fluid in my left lung cavity and the size of some of the tumors have made surgery a no-go. He said the goal now is to try to stabilize and control the disease for as long as possible with chemo and other drugs. That being said, he asked if we would be interested in speaking to one of the oncologists there. He and Charles had already spoken to this oncologist regarding my case, and he said he would be willing to speak to us about some specific options. I was glad for the opportunity to talk specifics. I was so impressed with this doctor. He had such a gentle demeanor and was very approachable. His name is Dr. Deshpande. He went over my chemo and clinical trial history with me, discussing what has worked and what hasn't worked in the past. The chemo that worked the best was the first chemo regimen I tried about a year and a half ago - Adrimiacin (sp). It pretty much wiped out the tumors I had at the time. The problem with Adrimiacin is there is a limit one can have in a lifetime without causing heart problems. I have had my limit. However, Dr. D told me of a drug they can administer with the Adriamiacin that will protect the heart. This drug will lessen the effect of the Adrimiacin on the tumors somewhat, but we think the response would still be worth it. In addition, Dr. D is going to check on a new drug for sarcoma that has been approved by the FDA, but hasn't been released yet. This drug has shown decent results for those with high-grade sarcoma metastases to the lungs. He is going to call my oncologist at Roswell to discuss these options and see if they can work together to get me started. First things first, though. I have to get rid of the remainder of the fluid in my left lung cavity. That should happen sometime next week at Roswell. They're setting up an appointment to drain the fluid and have a catheter put in so that I can drain it myself if the fluid continues to build up. I've been told that I might have to keep the catheter in for a few months until the drainage stops completely. No big deal - it won't interfere with any of my normal activities.

I have to admit that after talking with Dr. Detterbeck, I felt a little down. But, I'm so glad he had the foresight to have us talk with Dr. D. Dr. D. gave us a game plan to follow and a commitment to assist in helping to implement it.

I've had to change my mindset. I am not going to be cancer-free. However, I intend to use all resources at my disposal to control this disease for as long as possible. I left the hospital with a ray of hope today. Anyone dealing with cancer knows a little bit of hope can go a long way!

Yale, here we come . . .

Charles called this morning. Dr. Detterbeck feels that surgery is not an option at this time because of the tumor growth that has taken place over the last 2 months or so. However, he would still like to talk to us regarding my options. Charles seems to feel that if we can shrink some of the larger tumors with chemo or other drugs, surgery may yet be an option in the future. In the meantime, I'm grateful that Dr. Detterbeck would like to meet with us. It will be interesting to get his take on things.

Thanks to all of you for your support and prayers. I'm doing well in spite of the craziness! You know the poem, "Footprints in the Sand"? If you look behind me, I'm sure there's only one set of footprints . . .

Some news . . .

After requesting that Roswell fax my medical records and reports to Yale and Memorial Sloan Kettering, I received word from Memorial Sloan Kettering that they have determined that I would not be a surgical candidate. I didn't ask why. I wasn't particularly surprised. Roswell feels the same way. However, it makes me wonder if things have progressed to the point where Yale will ultimately come to the same conclusion. Charles and Dr. Detterbeck will be looking at my scans and reports this weekend and will be calling us Monday to let us know. We have a tentative appointment to meet with Dr. Detterbeck this coming Wednesday. We'll see if that happens. In the meantime, I'm looking forward to a relaxing weekend. The last few days have been crazy and have taken their toll both physically and emotionally. I need to re-fuel and so does my sweet husband. I honestly don't know how spouses of cancer patients do it. There are times when I feel this is harder on him than it is on me.

It's all in the Lord's hands. Knowing that gives me a tremendous amount of comfort and peace.

Just waiting to hear . . .

We're just waiting to hear back from Yale and Sloan Kettering as to when we can go for consults.  I had Roswell fax all of my pertinent info to both facilities.  In the meantime, I'm breathing a bit better.  The pain is gone - yay!  But, I do have a little bit of a cough.  No biggie.  I went into work yesterday for a few hours, did some laundry when I got home.  All in all, it was a good day.  Today, I'll go into work again for a few hours.  I love that I'm able to do that.  It gives me a sense of normalcy.  The people I work for and with are phenomenal. I could not ask for better.

Also, I have to mention my family.  My husband, my children and their families, my mom, dad and stepmom, my brothers and sister, and all of my extended family - they are my strength.

So that's it for now.  I'm hopeful we'll hear something today or tomorrow and be able to make plans to drive up north.

Things are getting a little crazy . . .

First of all, thanks to my sister for setting this up for me.  It will be much easier for me to just put posts up periodically to keep everyone apprised of my newest health updates.

My latest treatment, a clinical trial, did not work out as we had hoped. It turned out I was very allergic to one of the drugs used in the trial.  Since then, I have had a strong impression that we should revisit the idea of surgery to remove the tumors in my lungs.  I was reluctant to go that route in the past as I knew it would be major surgery, and the thoracic surgeon here at Roswell was encouraging me to continue with a systemic approach (chemo, clinical trials) to see if we could first stabilize the disease in my lungs.  It's been a year and a half and not only am I tired of the side effects and allergic reactions, nothing has really worked as we had hoped.  The tumors are growing.  

We went up to visit our daughter, Melissa, and her husband, Charles, in New Haven, CT a few weekends ago.  For those of you who don't know, Charles is a heart surgeon and is doing a 2 year fellowship at Yale Hospital up there.  He just happens to be doing a thoracic rotation right now.  He has been working with Dr. Frank Detterbeck who is the Chief of Thoracic Surgery at Yale.  Dr. Detterbeck happens to have a special interest in sarcoma.  Charles asked me to bring a copy of my most recent CT scan with me so he and Dr. Detterbeck could take a look at it.  Before they had a chance to look at my scan, Charles felt very impressed to tell me that he felt strongly that surgery was my best option.  Those feelings were confirmed when he had a chance to look at my scan.  In turn, my feelings about surgery were also confirmed.  I knew that was what needed to happen.  So, we made an appointment to meet with the thoracic surgeon at Roswell to discuss the idea of surgery to remove the tumors.  Somehow, I just had a feeling it wasn't going to be an easy process.  Sure enough, about 10 days ago, I started to have trouble breathing.  I was a bit short of breath, wheezing a little and developing a cough.  I assumed I was finally beginning to feel the effects of the tumors in my lungs.  So, I just slowed down my activity some thinking it would be fine until I met with the surgeon.  Unfortunately, the symptoms got worse.  I went down to Roswell, and they did a chest x-ray to see what was going on.  It showed a bunch of fluid in the lung cavity between the lung and the chest wall.  They said it wasn't uncommon for patients with cancer in their lungs to experience this. They did a thoracentesis that day and drew almost 2 liters of fluid out of my lung cavity!  I was told that I would feel immediate relief and my symptoms would disappear.  This did not happen.  I finally went back yesterday and had another x-ray.  My left lung has not fully re-inflated because there is still some fluid in there.  So, we talked about immediate options to remedy this.  We opted for a not-so-immediate option of surgery in about a week and a half where they would do a thoracoscopy (go in with a small camera and see what's going on in there).  Depending on what they find, they would do one of two things - if the fluid shows any signs of cancer, they would drain the fluid and do a pleuradesis which is to put talc between the lung and the chest cavity wall which would act as a glue to adhear the lung to the wall.  This would eventually cause scar tissue to form which would keep fluid from collecting there forever more.  If there is no sign of cancer in the fluid, they will drain the excess and implant a little plastic tube in my side which I can utilize to drain the fluid myself if need be.  Here is the kicker - needless to say, I don't want any more cancer showing up in my body whether it be solid, gas or liquid.  But, if this fluid does test positive for cancer, there go my chances for surgery.  No surgeon would operate as far as I've been told.  The good news is, the preliminary testing they did on that 2 liters of fluid came back negative.  However, I've been told that many times when that happens, it's a false negative. (Killjoys!) We'll just have to keep a positive thought.  Continuing on, I texted Charles with this latest development.  He called me back and suggested I come up to Yale and let he and Dr. Detterbeck do the surgery.  He said that they could do the thoracoscopy as well. If everything looks good, and the fluid still tests negative, they could just open me up right there and take the tumors out.  If not, they can do the pleuradesis and call it good.  One surgery instead of two.

So, we are waiting to hear when Dr. Detterbeck can see me, hopefully sometime next week. Per Charles' advice, we have also put a call into Sloan Kettering in NYC to see if we could get in for a consult there.  I'm in the process of getting copies of reports faxed off to both facilities.  Now it's just a waiting game.  My prayer now is that the fluid that is left in my lung won't increase and make things difficult before I can meet with these good doctors!  I'm still a bit short of breath, but I'm functional.  I'm grateful for that!  I've experienced many of the Lord's tender mercies these last few weeks which have strengthened me, and enabled me to remain positive.  I couldn't ask for more at this point.

A new way to get info out to family and friends!

I thought this would be a good way that Chris could get info out to all our family and friends.  This way, everyone can get it directly from the horse's mouth, and not lost in translation....(which NEVER happens in our family...)  I'm an administrator and so is Chris and Ken.  Everyone is welcome to add their supportive comments, or ask pertinent questions.  If Chris feels like answering them, she will.  I'll never step on her toes and will only post with her permission.  Keep all the prayers coming you can and she'll continue to stomp out this terrible disease with style and grace.  Love you Seester.  You're my bestest friend.

-Barbra