Thursday, April 28, 2011

Royal Wedding Countdown...

Yes, I'm one of those.  I admit it.  I'm getting up a little before 3:00 AM CT just so I don't miss a thing. 

Yes, I know about all the Royal marriages that have failed, but I still want to be there.  Yes, it all costs a small fortune and seems kind of ridiculous in these economic times, but I still want to be there.  I just can't help myself.

Even I was a little worried about myself today.  I went over to the storage facility where I have some dolls stored and dug through boxes until I found my Prince Charles and Princess Diana wedding dolls.  Then I went to Party City to see if they had any Royal Wedding stuff, but they didn't.  I at least wanted a British flag, but no luck.

I came home and gave the Royal couple a place of honor on the bookshelf.  I felt Prince William's mother and father should both be present and that's why I put them up.  I stored them away after the marriage failed, but it was time to dust them off and bring them out again.

I was about to take a picture when I noticed someone standing next to Prince Charles.  I knew it wasn't Camilla.

It's actually some action figure that Reid added to the scene.  Yes, my family is poking fun at my Royal Wedding obsession which seems to have gained momentum in the last 24 hours.  I actually found myself humming God Save The Queen today.

It will all be over soon.  I just hope this one takes.

Wednesday, April 27, 2011

"B" as in Betty...

Welcome to Alphabe Thursday sponsored by Ms. Jenny over at Jenny Matlock..."off on my tangent."  For a list of this week's participants and information on how you can join in the fun head over to Ms. Jenny's blog.

This week we are studying the letter "B" as in BETTY.

BETTY is an old fashion name.  It's also my name.  According to one site it's of Dutch, English and Hebrew origin and means God's Promise. 

My name is BETTY...not Elizabeth.  All through school I had to argue with teachers who insisted my name had to be Elizabeth.  It wasn't.  My parents had a deal...Mom would name any girls and Dad would name any boys.  My mother decided to name me BETTY Jean and she insisted everyone call me BETTY Jean.  Sounds like I was born in the deep south, but I was actually born in Hackensack, NJ.

For the first ten years of my life I was called BETTY Jean.  Since then I've spent the last 55 years correcting anyone who calls me BETTY Jean.  It's just plain BETTY.  Come on...BETTY is bad enough without adding the Jean.  I've never liked my name.

According to the Social Security website between 1910 and 1996 the name BETTY was the second most popular girl's name from 1928 until 1934.  We never made it to number one and our numbers have been falling ever since.  I was born in 1945 and BETTY was number 11 that year.  The most recent year they show on their website is 1996 and BETTY had dropped to 919.  I was surprised it was even that high.  If you'd like to see how popular your name is check out the Social Security website.  You can search by a particular year or you can search over a period of years to see how the popularity of your name has changed over the years.  It's kind of fun, so give it a try.

Here are some BETTYs...

BETTY BOOP...animated cartoon character

BETTY Rubble...from the Flinstones

BETTY Cooper...from BETTY and Veronica comic book fame

BETTY CROCKER...who helped me learn to bake and cook

BETTY Grable...the actress and WW II pin up girl

BETTY Ford...the widow of President Gerald Ford

BETTY of my all time favorites

Who can forget Betty White's Super Bowl commercial...

My mother's nickname was BETTY.  She was actually named Carolyn Elizabeth Morris, but the nickname BETTY does not come from Elizabeth.  When she was small her grandmother called her something in German that sounded like BEPSIE and from that people started calling her BETTY.  I love this old picture of her with her doll.  This was probably taken in 1921 or 22.

I don't love this picture.   Actually, this is a hundred times better than my latest driver's license picture, so that tells you something right there.  Don't you just love the hairdo?  I know I put this up on my blog once before, but it's so awful it's worth repeating.  (Mom, why did you let me go out in public that day?)  Yes, that's BETTY Jean in 1954.

Some of you might remember when I recently had a little extra time on my hands and googled my name.  I wrote about it in this post.

Now head on over to Ms. Jenny's blog for this week's addition of Alphabe Thursday.  Don't worry about me if I'm not around on Friday.  I have a prior engagement and I'll be very busy.

Now I'm off to polish my tiara, bake crumpets, and find a good alarm clock.  Cheerio...
PS...Last week I had trouble and couldn't post pictures with blogger for Alphabe Thursday.  I discovered that if I sign out and then sign back in again the problem clears up.  Wish I had thought of that last week.  I'm passing this information along in case anyone else is having trouble too.

Monday, April 25, 2011

Greatest invention since sliced bread...

I'm so excited.  Look at what the Easter Bunny brought...

Yes, our very own portable air conditioner.  I've wanted one of these since Hurricane Ike.  We bought a generator in 2009 and now we have the A/C to go with it.  (Don't look at the mess.  We had to move things around to get it near the window to vent.)

We've been having A/C trouble and the temperature has already been in the 90's this year.  Factor in the humidity and it can get miserable pretty quickly.  All the freon leaked out of our central air because there's a leak in the pipe that runs through the wall and up into the attic.  We had to decide if we wanted them to break through the sheetrock or just run a new pipe up the outside of the house.  We're having them do it the quickest and easiest way...the pipe on the outside.  It looks like they might get it done today.

Much to our surprise Lowe's was open yesterday, so we ran up in the afternoon and bought this portable unit.  It's enough to cool the kitchen and den.  I love it!  It works great.

These little babies will be flying off the shelves if a hurricane heads in this direction.  For once we're ready ahead of time.  The plywood is cut, the generator is on standby, and we've got our portable A/C!

Thank you Easter Bunny!

Saturday, April 23, 2011

A hectic week updated...

On Thursday morning we received an E-mail saying that Reid had definitely qualified for the clinical trial and should be at the hospital by 1:00.  A few minutes before we were to leave Reid received a phone call telling him not to leave until he called the clinical trial nurse and spoke to her first because she was waiting to hear back from the sponsor.  He waited fifteen minutes and called.  She then said not to come until she called him.

Meanwhile, he still hadn't been told anything about another appointment with the doctor, but since we had now been told he had qualified for the trial we were hoping that meant the scan was OK.  We still wondered why it seemed important for him to see a doctor on Wednesday, but again we were hoping all was OK.  Now with the delay we had our doubts again.  We had been told that the trial had to begin on Thursday in order to be in compliance and now everything seemed to be on hold.  We didn't know what was going on.  Talk about an emotional roller coaster ride!

We decided to go down to the hospital and talk with a patient advocate and perhaps she could find out what was happening.  She spoke with the clinical trial nurse and then told us he was definitely in the trial, but because Reid was the first patient at MD Anderson to qualify for this trial some additional information was needed.  We were told that the trial didn't have to begin on Thursday and one or two days later would be OK and we should go home and wait for a call on Friday.

Friday morning Reid received a call around ten telling him to be down there at twelve.  Jim was off work, so we both went with him.  The clinical trial nurse explained to us that everything was ready as far as the sponsor and MD Anderson were concerned but a third party who I guess oversees the trial wanted some earlier scans first.  She said his latest scan had been fine and the doctor's appointment was just to go over everything again.  The trial is supposed to begin seven days after Reid signed the consent form, but because of the additional scans that the third party wanted it was OK to start a day late.  So, Reid saw the doctor, a fasting blood sample was taken, and the drug/placebo was finally started a little before four.  We were home by 6:30, let out the dog and fed the cats, and then headed to Cheddar's for something to eat.  Reid hadn't had anything all day and by then was pretty hungry.

This week we've all been on an emotional roller coaster ride and hopefully things will settle down a little now.  He will be receiving the drug/placebo every 21 days which will require a doctor's visit the day before and then a fasting blood sample each time.  There will be numerous scans done during the trial and once a person has had cancer these scans can be a little nerve wracking, but this will be our "new normal" as they like to say.  Hopefully, all will go well.

I've been blown away by the moral support and prayers we've received once again this week.  Thank you so much!

On Monday he has his regular appointment with his stem cell doctor.  He still has the central venous catheter and is hoping on Monday they will tell him it can be removed. 

I hope everyone has a wonderful Easter day tomorrow.  I thought I'd share some older Easter doll pictures with you.  These are mostly Vogue Ginny Dolls...modern reproductions and vintage dolls from the 1950's.  I know some of you have seen them before, but I haven't had time to play lately so I'll share these again.  Click on the pictures to enlarge.

Happy Easter!

Thursday, April 21, 2011

AlphaBe Thursday-The Letter "A" as in Aghhhhhhh!

Normally this is where I'd insert a picture of the Alphabe-Thursday button which I have on my hard drive, but for some reason blogger won't let me insert any pictures this morning.  I do have the actual button on my sidebar so you can click on that or use this link to go directly to a list of this week's participants.

A is for Aghhhhhhh!  That's what I said (and more) when blogger wouldn't let me upload any pictures from my hard drive this morning.

I had planned on getting a post all ready yesterday and then real life threw a curve ball and I never got the pictures taken.  So, I decided to use pictures that I already had on my hard drive.  That's when blogger threw me another curve ball.

You see, A is also for ASHLEY or ASH as we like to call him.  ASH is actually my son's cat.  He's really cute, but you'll have to take my word for it since I can't insert pictures into this post.

A is also for ARMADILLOS.  You can see a picture of Tex our backyard ARMADILLO on my sidebar.  Actually, I don't believe it's the Tex you see in that picture under our deck now since they seem to come and go.  The current ARMADILLO is probably the third one we've had under there in recent years.  I actually saw him this morning as I was feeding the cats.  He came slowly waddling up the driveway and headed for the backyard.  I guess he was coming home from a long night of scavenging for bugs, but my hands were full of cat dishes and I didn't have my camera handy.  (It wouldn't have mattered anyway since I can't upload pictures to posts today.)

I know this post is pretty lame and AWFUL.  I had planned on inserting all the pictures and then adding text later while I was on my netbook, but it isn't going to happen.  So, please accept this AWFUL post as I attempt to not miss the first day of class.

For information on Alphabe Thursday and a list of this week's participants head over to Ms. Jenny's blog.

Thanks for visiting...Betty

What I know...

We heard back from the clinical trial nurse.  She indicated he's the first one approved to begin the clinical trial at MD Anderson.  I don't believe he'd begin the trial today if there was something in the scan, but I'm not 100% sure about that and hope and pray I'm correct.  She said he should be there at 1:00 this afternoon.  It sounds like he's just showing up for blood work and the trial drug or placebo and won't be seeing the doctor, but we'll find out more when we get down there.  Thank you for your support...Betty

We still know nothing...

We were down at the hospital by 4:00 PM yesterday, blood was drawn, and then we sat in the waiting room until just about everyone was gone.  We knew they were supposed to be squeezing him in, so we weren't too concerned at first.  Finally, we checked with the receptionist and she called the clinical trial nurse who said we should go home.  Reid then got a call on his cell phone while we were still in the parking garage and was asked to wait while this person checked again with the clinical trial nurse.  She then called him back and said he'd meet with the doctor today, but didn't know when.

We are all upset and still don't know what's going on.  No appointment with the doctor has shown up on his online schedule and we've heard nothing from the clinical trial nurse.  It's now almost 9:30 and I e-mailed her last night when we got home asking what he's supposed to do.  So, we wait.  I feel like Reid has been treated rather poorly, but I'm not sure who is to blame.  He's done everything asked of him and on more than one occasion we've jumped in the car and rushed down there.

When I know more I'll let you all know.  Thank you once again for your support.  Betty

Wednesday, April 20, 2011

Bump in the road?

I don't know what's going on, but I do know that as of yesterday everything was in place for the clinical trial to begin tomorrow.

We just got a phone call from MD Anderson saying that he must be seen in the clinic by the doctor that is covering today for the clinical trial doctor.  We'll meet with him at 4:00.  This was totally unexpected and I'm now worried that something might have shown up in yesterday's scan.  Please say a prayer that all is OK and he can proceed with the trial.

Thank you...Betty

Monday, April 18, 2011

Overdue Update

Since moving back home I've kept pretty busy unpacking, cleaning, grocery shopping, making numerous trips back down to MD Anderson, and sleeping.  I probably slept a good part of the first few days.  I also took time to sterilize the kitchen and bathrooms with bleach.  We now have some new more leaving meat to thaw on the counter and all left overs need to be dated and then tossed three to five days later.  All the things we're supposed to be doing anyway, but never have in the past.  Until Reid's immune system recovers we'll be as conscientious with all of this as possible.

We found out last week that he'll have to have all his childhood immunizations again in six months.  He also only has to wear a face mask at the hospital or in real crowded places.

His energy level has continued to go up and his appetite has improved.  Both have a long way to go, but we're seeing almost daily improvement.  He probably lost at least ten pounds in the hospital, so it will be nice to see him gain some of it back.

It sure was nice when we were living at Candlewood and only ten minutes from the hospital.  Now it's an hour each way and we've made numerous trips for blood work, follow up appointments and visits regarding the next clinical trial.

The good news is that Reid's platelets almost doubled last week and reached 50 which was necessary to be considered for the trial.  He met with the clinical trial nurse and the doctor, decided to join the trial, and signed the necessary paper work.  Right now we're sitting in a very crowded waiting room at MD Anderson waiting for his name to be called for a blood draw.  After this he has an appointment for an EKG,  Then tomorrow he'll have more scans and if all goes well he'll start the clinical trial on Thursday.  It's still not a done deal, but we're hopeful he'll be approved to participate.

I do think he's made the right decision.  If approved he'll be the first patient at MD Anderson in this trial although it's a phase three trial.  It's a double blind study being conducted at numerous sites.  He might get the actual drug or he might get the placebo.  However, if he's on the placebo and relapses they will be able to give him the actual drug.  I did some research and learned that the company running the trial has had some positive results with this particular drug in phase one and two and in February applied to the FDA for fast track approval.

I think this drug would be considered targeted therapy.  I'm no scientist, but I try and make sense of the scientific stuff I read.  There's something called CD-30 that's in the Reed-Sternberg cells.  Those are the cells they use to identify Hodgkin's.  This trial drug goes through the blood stream and destroy cells with CD-30 without harming healthy cells. A much better explanation can be found on Seattle Genetics' website.   Now I'm hoping he gets the actual drug, but we won't know.  It's randomized by computer and that will be done this week if all goes well.  Reid, the research nurse, the doctor, those administering the drug or placebo won't know.  Since the actual drug does have some side effects I suspect Reid might be able to tell at some point.

We've moved to another part of the hospital and Reid is now having the EKG.  I won't be posting this until later today when we get home.  I took a few pictures yesterday and haven't had time to get them off the camera and would like to add pictures to this post.  We plan to hang around here for a while in hopes of hearing from the Physician's Assistant about his blood draw results.  If the platelets have stayed up he'll be able to have the central venous catheter removed, and he'd love to have that done today.  So, we're going to stay close by for a while just in case.

Update:  Good thing we stayed around for a while.  Reid got a call from the research nurse and we're now waiting in the Brain and Spine Center for him to see a neurologist.  This clinical trial requires that he be seen by a neurologist and a form  filled out and signed before he receives the drug/placebo.  So, now that will be completed today too.  As far as we know all that's left to be done are the scans tomorrow.  If all goes well he must begin the trial no later than Thursday in order to be in compliance with the trial's requirements.

We're home now and the rest of the day didn't go as well as we had hoped.  After waiting for over an hour  in the waiting room they finally took Reid back.  I waited for him and wondered what was going on.  He said they did some tests and then he waited in the room for the doctor.  After an hour of waiting there she came in but wouldn't fill out and sign the form because she didn't know what it was about.  Reid told her it was for a clinical trial, but that didn't make any difference.  So, when he came out he called the research nurse and she told him to leave the form with the receptionist and she'd come by and get it.  I'm assuming she'll get the doctor to take care of it because it must be done before he can enter the trial.  I'm not sure who is at fault, but Reid's the innocent victim in the whole thing and we're running out of time. 

We stopped at Subway on the way home and had something to eat.  We left the house at 7:15 this morning and finally got home around 4:30.  It was a long day and he never heard from the Physician's Assistant.  Hopefully, she'll let him know something tomorrow and maybe he can get the central venous catheter out after the scans.  We'll be leaving the house again tomorrow at 7:15.

On a happier note Keith has been here since Saturday and will leave for home tomorrow.  Yesterday we went to Lupe Tortilla to eat.  It's a Mexican restaurant that we all enjoy.

This is Reid, Keith and Jim entertaining themselves.  Reid and Keith with their phones and Jim staring off into space.
I asked them all to look my way for a moment and they obliged...

Wednesday, April 06, 2011


It's another long day for us at the hospital.  We've been here since 11:00 this morning and right now Reid is having a 2 hour IV to help prevent something called PCP pneumonia that I guess stem cell transplant patients are more susceptible too.  This will take at least 2 hours, so it will be after 9:30 when we leave.

I can now exhale!  The scan done on Monday shows no Hodgkin's Lymphoma! 

Reid pointed out to me that we've heard that before (and I know that's true), but I'm still hopeful that the clear scans will continue.  I think we're all afraid to get too excited at this point in fear of jinxing his recovery or something. 

We've still got to see those platelets go up without transfusions if he's going to get into the next clinical trial.  This trial is to test a drug that will hopefully prevent or control Hodgkin's in people at high risk for recurrence after a stem cell transplant.  It's a double blind study which means he could get the actual drug or a placebo.  However, if he does relapse and he's not on the drug they will be able to give it to him.  At least that was my understanding when it was originally explained to us.

Anyway, I'm exhaling and enjoying the day (what's left of it).

Tomorrow we move home!  The doctor gave his OK, so we'll be out of Candlewood by noon tomorrow.

Thank you for your prayers and support...Betty

Monday, April 04, 2011

A Long Day...

We arrived at MD Anderson at 11:00 this morning and we're still here as I type this post.  The basketball game is underway and now I'm hoping we get out of here before the game is over.  We can't avoid Reliant Stadium on the way back to Candlewood.

Reid's platelets dropped again which we hadn't expected and he is now receiving a platelet transfusion.  It's been a busy day with a Fast Track Clinic visit and the PET scans which took a big chunk of the afternoon.  I'll be on pins and needles until we get the results on Wednesday from his stem cell doctor.  Please say a prayer that the scans are clear.

We learned today that Reid will not be able to participate in the next clinical trial unless his platelets go up to 50 by day +40.   Today is day +25, so there is still time, but the doctor thinks the platelets haven't engrafted yet since there's been a slow but steady decline since his last transfusion.  So, we wait and hope.

I normally don't drive at night with my vision, but at least we take city streets and not a freeway on the return trip.  It still makes me a little nervous, but we never expected this morning that we'd be here this late.

Thanks again for your support...Betty

Sunday, April 03, 2011

Forget what I said...

I know I said we were staying at Candlewood this weekend because I wanted to avoid Final Four traffic, but we're both suffering from cabin fever and today's events weren't even at the stadium, so we headed home to visit and do laundry.

I snapped some pictures before we left and uploaded them to the computer while we were home.  Here's Reid taking it easy in our apartment's living room.  He's a little thinner than before the transplant, but is eating better now although most things still don't taste quite right to him.

I've been keeping busy in my spare time working on some projects.  I bought this little 1950's era doll on eBay for $10.50.  This is the seller's picture.

I detangled her hair, glued it back down, rolled it, and then heat set it.  Here she is today dressed for Easter and surrounded with some Easter goodies that Carolyn from Carolyn's Rock and Roll Ginnys website sent to me.  Thank you Carolyn!  If you enjoy the small vintage dolls of the 1950's (especially the Vogue Ginny doll) be sure and visit Carolyn's site.  You won't be disappointed.

I've also been working on something for the Fire Flies Doll Convention in June, but that's a secret so I can't show you any pictures.

When we got home Sophie was glad to see us, but we almost didn't recognize her.  Jim had her groomed and she was full of that awful Velcro weed.  I don't know if you have that where you live, but it first showed up in our yard a couple of years ago and it's awful.  It was all entwined in her long fur, so she's got a shorter haircut for now.  (She's actually a Schnauzer.)  Please ignore the bag of dirty laundry in the background.

And sweet Mike wanted his picture taken too!  (The coloring in this picture is a little strange and I should have fixed it.)

And since I uploaded these pictures to Blogger from home and then inserted the text afterwards some of the words are centered and some aren't.  I'm not about to try and fix it because that would probably only make things worse.

Have a good week...Betty

Friday, April 01, 2011

Following my own advice...

Stay in the moment.

That's advice I've given to others.  I try and remind myself daily to live in the moment and experience what is happening RIGHT NOW and not let my silly little mind rush ahead with a lot of "what ifs" which I have no control over anyway.  I've read many articles written by psychologists and other knowledgeable people urging me to live in the moment...and so I try.

Often I fail.

Is anyone familiar with this poem?  It's called Life and was written by Paul Laurence Dunbar.

A CRUST of bread and a corner to sleep in,

a minute to smile and an hour to weep in,

A pint of joy to a peck of trouble,

And never a laugh but the moans come double;

And that is life!

A crust and a corner that love makes precious,

With a smile to warm and the tears to refresh us;

And joy seems sweeter when cares come after,

And a moan is the finest of foils for laughter;

And that is life!

Reid had an appointment in the Fast Track Clinic yesterday and his white cell count went up to 5.2 from 4.4, but his platelets took a slight dip down to 39 from 44, so the Central Venous Catheter couldn't be removed.  He'll have more blood drawn on Monday and if it doesn't go up he'll be given a transfusion of some drug that will help them go up.  At 30 days post transplant there is an antibiotic that they like to put them on to help prevent a certain type of pneumonia.  The drug can't be given unless the counts are good because this drug can also make them go down a little.  Hopefully, between now and Monday those platelets will go up again.
We also learned that they want him to have a CT scan on Monday.  Usually this is done three months post transplant, but sometimes done sooner.  His doctor wants it done now and we'll learn the results on Wednesday when he sees the doctor. 
I'm afraid I'll always have some concern whenever he has a scan done.
Note to self:  Stay in the moment.
Meanwhile, I've decided not to go home this weekend.  Jim wanted to come and stay here so I could go home for a while, but I'm concerned about the traffic with The Final Four and the drive past Reliant Stadium.  I really don't want to get in that mess.  So, Jim will come visit instead.  He won't be able to stay overnight because of the dog and cats, but he doesn't mind the traffic and the drive back and forth as much as me.
I need to get moving here and get out to the grocery store and pick up a few things while the going is good!
Have a good weekend...Betty