"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 White...one 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.

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!

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!



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

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

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 rules...no 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...

 

...exhale!

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

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

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

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

Another update and the NCAA Final Four - YIKES!

Reid was seen in the Fast Track Clinic at MD Anderson yesterday and everything was looking good.  His platelets stayed the same and didn't go down which was very good news.  It meant no transfusion was necessary and if they go up to 50 (from 44) by his next appointment on Thursday they'll remove the Central Venous Catheter.

I don't know who is more excited...him or me.  He'd love to see it gone because taking a shower is a bit of a hassle since it needs to be covered each time so it doesn't get wet.  It's also always there, in the way, and a constant reminder of what he's been through.  I'd love to see it gone because I do the bandage changes and now that we're living down here I do the daily Heparin flush too.  That was always Jim's job before, but he's back at the house so I do it now.  We're really keeping our fingers crossed that it's out on Thursday.

The fatigue hasn't gotten any better, but that is considered normal at this point and will just take time to improve.  The salty taste that the chemo left him with is better each day and yesterday his old appetite was 95% back.  He lost nine pounds in the hospital, but hopefully it will come back quickly now.

Now we have this to deal with...

We're living around a mile or so from Reliant Stadium and must pass by there to get to MD Anderson.  If there's another way to go I'm unfamiliar with that route or it involves a freeway.

We've been watching them transform Reliant Park and the stadium from The Houston Rodeo to The Final Four.  I would have taken pictures, but I was busy driving and in Houston traffic I must keep focused.  I also have no way to upload pictures on the Netbook.

This will give you an idea of our new traffic headache...

You'll have to click on the map to enlarge it.  We're staying near Main Street and just south of the 610 Loop.  The Medical Center and MD Anderson are located adjacent to Hermann Park and Reliant Stadium is located between here and there.  Taking Main Street is not a good option because it's almost next to impossible to get out in the traffic, so we take the 610 feeder road east to Kirby and go up Kirby to Old Spanish Trail.  (I don't even think they show Kirby on this map, but it runs along the west side of Reliant Park.)  On the east side is Fannin, but that will be just as bad as Kirby when it comes to traffic.  Hopefully, we can time things to avoid the worst traffic.  I hate traffic!

With luck his appointment on Thursday will be it for the week and we can hibernate here until the games are over.

Betty

Day +14 Update...and too much time on my hands!

Yesterday, we were back at MD Anderson for Reid's first follow up appointment with the Physician's Assistant.  His white count had gone down to 9.5 from 13.7 the day before, but this was expected.  His count had been higher from the Neupogen injections and now it all comes from his immune system.  I'll have more peace of mind when it gets up into the normal range and stays there.  We were both surprised that he didn't need a transfusion and she said he didn't need to return until Monday.  We had originally been told he'd have daily appointments including weekends for a while.  We celebrated by sleeping.  No early appointments to keep...YEA!

Fatigue is Reid's constant companion which is also very normal.  It can take a year or more for him to get his energy level back up.  However, he must get up and do some walking each day because of his lung.  His one lung doesn't fully inflate at the bottom since the original mass paralyzed a nerve to that lung.  One of the nurses explained that his new immune system might mistake that for infection and send a bunch of white cells there to fight infection which in turn would cause inflammation.  So, he must work to keep that lung as fully inflated as possible.

Yesterday, he got plenty of walking done at the hospital and then in the evening we walked around the outside of the motel.  Today, he didn't do as well.  We ended up having to go over to the hospital so he could get his lumens flushed since we don't have the supplies with us here.  We'll be getting them tomorrow when we go back to the house to get some things, but they need to be flushed daily or no less than every couple of days.  He was very tired, so he used a wheelchair for the trip into the hospital and then walked to the parking garage when we left.  I suggested another evening walk around the motel, but he fell asleep.

He also doesn't have much of an appetite.  Everything tastes salty to him...even plain water.  This is another chemo side effect and is expected to last a couple of weeks.  He's finally drinking more since I bought those Kool-Aid singles to put in the water.  I've got the refrigerator here stuffed with everything from Carnation Instant  Breakfast, Gatorade, pizza, lasagna, cheesecake, etc.  He eats a little, but says it's hard since nothing tastes right. 

Meanwhile, I found myself with a little extra time on my hands and stayed up late last night and did what bored people everywhere do....I googled my name.  Remember, I have a very common name, but what a life I've had!

I'm from NJ originally and must have had a Tupperware Party that I had completely forgotten about, but thanks to You Tube I now remember.




Bet you didn't  know there's an old British expression that goes, "All my eye and Betty Martin."  I'll admit it made absolutely no sense to me, but it means a lot of nonsense or baloney anyway.

I even have my own song called "Hey, Betty Martin."  It's sung by Joe Liggins and you can listen to my song here.

My alter ego has also been a writer, psychologist, artist and even an accountant.  I've died many times over, but I'll spare you the details. 

I've hardly changed at all over the years.

Yes, that could almost be this Betty Martin.  I actually had glasses like that once.

Then I googled my maiden name and found out that I had been arrested in Florida.  Here's my mug shot.

That's when I decided all this excitement might be too much for my heart and I quit googling.

Thanks again...Betty

Edited on March 29, 2011.  I had called this day +25 in the post title, but it was actually day +14.  I got the actual date mixed up with the post transplant date.

Day +12 Discharged!

Things got a little rocky yesterday with a couple of nose bleeds and swallowing difficulty, but a platelet transfusion and a good night's rest turned things around today.  His throat was much improved and he was discharged around three this afternoon.

We got back to Candlewood Suites and I walked across the parking lot to Taco Bell and got him 4 tacos.  He ate three of them...the first non-soft food in almost two weeks!

We'll be making daily trips to the hospital for blood draws, transfusions, etc., for a while.  That's considered normal at this point.

Thanks again for your prayers and support...Betty

Day +11 and progress being made!

Yes, it's day +11 and there have been some changes.  Yesterday his white count went from .3 to 3.1 and today it's 9.1.  He's now engrafted and no longer needs the Neupogen injections.  He's producing white cells on his own!  It might fluctuate a little, but it won't go down much now.

There is a possibility he could be released tomorrow, but he must be able to drink 2 liters and swallow all his pills.  Right now his throat is bothering him because with engraftment everything starts to heal and new tissue is growing behind the damaged stuff in his esophagus and it's trying to slough off.  It feels as if something is stuck in his throat.  He's been told to try eating soft food...apple sauce, yogurt, etc., to see if that helps.  He also needs to walk around more in hopes of getting this thing dislodged.  And he needs to keep drinking.

I talked him into ordering scrambled eggs and apple sauce for breakfast (he hates yogurt so that's not an option) and he's giving it a try.  Nothing really appeals to him and I've found that making lots of suggestions sometimes meets with success.

Meanwhile, I moved yesterday to Candlewood Suites around 4 miles from the hospital.  I ran to Kroger on my way back there last night and bought a few things.  I'll need to get some more things before he's released.  Today I came here on their shuttle, so I don't have the car.  I hadn't expected things to move this quickly, but I'm glad!

Thanks again for your support!  Betty

Day +9 and Happy Spring!

As I type this Jim and Reid are snoring away.  I'll try and concentrate...but it won't be easy!  Jim has always snored, but with Reid it is something new and I attribute it to the sores in his throat.  However, the good news today is that after many days the throat finally feels a little better.  He was able to drink the milkshake we brought today.  That's a big improvement over yesterday when he had one sip of milkshake and nothing else all day.  The nurse told us yesterday that all of a sudden the throat would feel better and the sores would disappear as quickly as they came.  She knows her stuff.

Today his white count was 1.3 up from .3 yesterday!  He can be discharged when the count is at 2.0, AND he can swallow his pills, AND he can drink 2 liters, AND his fever is normal for 48 hours.  The nurse seems to feel that this will happen soon.

All the nurses here are amazing.  They are excellent at what they do and all seem to enjoy their jobs.  As one nurse put it, "They really take care of us here."  I get the impression that MD Anderson really values their nursing staff.  They encourage all their nurses to get advanced degrees and pay for it...totally.  Then they move them to a higher pay scale.  As one nurse put it, "It's a win-win situation for them."

I just can't say enough about how good the nursing staff is here.  They are on the ball, well trained, and know exactly what to expect.  A very competent and compassionate group. 

Reid did develop a few nodules under his skin three or four days ago and today they biopsied them just to be on the safe side.  We should hear something in a few days.  They could just be another side effect from the chemo or something like a fungal infection.  Some have actually gone away, so hopefully this is just a big nothing. 

The lung culture from the other day never showed anything and that's good news.  His fever comes and goes, but it remains a low grade fever when it comes.  The nurse explained to us that when they start producing white cells the body sometimes mistakes that for an infection and gears up to fight infection with a fever.  After a while things settle down and the fever goes away.

When we arrived this morning he was out of his room taking a walk.  He's walked every day since he's been here except for the three worse days.

He just got up and went out for another walk.

Happy Spring!  For us it's been a good first day of Spring.  Betty

Just a quick update on day +7

Today Reid wasn't feeling as well as he was yesterday, but so far the test on his lung tissue has been inconclusive.  They were trying to grow a culture and as of this morning when the doctor came in nothing had grown.  I'm not sure how long they give it, but I take nothing at this point as good news.  We'll see what tomorrow brings.

His fever had remained very low yesterday, but this afternoon he felt warm and it had gone up.  I'm sure that had something to do with the way he felt.  They had given him Benadryl again for a platelet transfusion.  They always give Benadryl whenever any kind of transfusion is given. I think they said it's done because of the preservatives that are used.  I guess it's in case of an allergic reaction, but Reid hates the way it makes him sleep.  He wants to stay awake!  I think another one of the reasons he was kind of miserable today is because he doesn't want to use the pain killers for the same reason.

The last couple of days have brought on nose bleeds due to a low platelet count, so he has to have platelets and sometimes transfusions.  This is all to be expected at this point.

The good news is that today for the first time in days his white blood count was no longer zero.  Today it was .1.  It isn't much,but it's a start.  We were excited!

The cards continue to arrive.  Someone even sent him a lovely book.  When things settle down I'll try and thank as many people as possible personally, but in some cases I won't be able to due to a lack of address or blog name.  Please know that everything is very much appreciated.  He's really enjoyed all the mail.

Thanks once again for everything.

I've been taking pictures for Reid.  Here are a few:

Whoops...what's going on???  I clicked to add a picture and it brought up a box saying sign in for Google Cloud Picker to select an item from online storage.  What???   I've always added pictures from my computer.  I hope that's just a temporary glitch.  I do have a Picasa album for the slide show on my blog, but my other pictures are on my hard drive and I'd like to keep it that way.

Oh well...no pictures.  Betty

Day +6 update to follow...and help needed for Japan's 4 legged friends

I will try and post an update on Reid later when I'll possibly know more.  He's been running a fever and has part of one lung collapsed, but it is only a small area.  He also has a small amount of fluid in one lung and is on 4 different antibiotics, but a low grade fever remains.  This morning he had a procedure done where they went down and took a piece of lung tissue to try and determine exactly what is going on.  All things considered  he's actually looking better today and he started receiving the Nuprogen yesterday.  My hope is that things will start improving  more soon.  I'll post more as I know more.



Meanwhile I wanted to join in a special relief effort for Japan's four legged friends.  Being an animal lover myself I wanted to participate in this cause. 

Thanks again for your support and prayers and I hope I'll have more to report on Reid later.  Betty

The real Day +4 and this and that...

Today is day +4 and I got ahead of things yesterday when I called Monday day +4.  I guess it was wishful thinking on my part wanting to get this long ordeal over for Reid. 

Today he is still taking pain medication for the mouth and throat sores.  He's in considerable discomfort and doesn't really talk much anymore.  His body is covered with this crusty looking rash and I'm starting to think that the mouth and throat sores are really the same thing only internally.  All of this is caused by the one chemo drug.  The clinical trial is to determine how large a dose can be tolerated along with the other drugs in the study.  This one drug is a bear!

He is now running a fever...101.3.  They took him down earlier for a chest X-ray and I'm hoping the doctor will be in soon with an update.  When we took the pre-admission class one of the nurses told us that most do develop a fever at some point while the immune system is depressed.  Hopefully, this too will pass.

Yesterday he received another stack of mail.  Wonderful cards (some beautifully hand made), inspiring notes and letters, and some adorable drawings by children were in the pile.  I actually saw a half smile on his face as he whispered to me that I should open the large envelope.  Inside a four year old boy had sent him drawings of planes crashing.  Reid could relate since many years ago he did similar drawings.  It's a guy thing I guess.  There was also a very pretty drawing from Mallory.  Thank you everyone!



I did promise you a picture of one of our cats.  I was printing out some information on dolls from a CD so I could take it to the hospital and read.  (My Netbook doesn't have a CD drive.)  Anyway, whenever Zoom hears the printer she comes running.  It doesn't matter where she is in the house.

She loves to try and catch the paper coming out.



There was a little entertainment outside Reid's hospital room one day last week.  Three helicopters landed on the roof below in a period of a couple of hours.  One was Life Flight and I certainly hope the person they brought in is doing OK now.

I've been trying to keep up with the news from Japan.  It's a tragedy of such huge proportions that it's hard to even imagine what life must be like for the people impacted.  For a few years I've followed the blog of a lady that lives in Japan, but was born here.  She's a quilter and I believe I learned of her blog from my friend Karen at SewPrimitive Quilter.  I'm no quilter (I would never have the patience), but Tanya at Taniwa often shares information about her life in Japan and I always enjoy her posts.  She also has six cats and a dog (one less cat than us!).  She was the first person I thought of when I heard the news, but I had no idea where in Japan she lived.  Anyway, she never lost Internet access and has been posting daily reports.  It's very interesting to read her account of the events.  Be sure and go back and read her earthquake posts from the beginning.  (She was actually underground in a stone quarry when everything started happening!)



Thanks again for everything!

Day +4 update

I wish I could tell you that he's improving each day, but unfortunately the opposite is true.  Although not unexpected by the nurses and doctors it has definitely surprised me at how quickly things have changed.

As one of the nurses put it, "It's as if your insides have been run over by a truck."

When I arrived this morning the nurse was just giving him platelets and pain medication.  In spite of him being vigilant with the special mouthwash routine he has developed very painful mouth and throat sores.  Actually, one of the nurses explained the other day that the sores are throughout his intestinal track.  I guess that's where the getting run over by a truck comment comes from.  Today's nurse said the sores are inevitable with the chemo he's had...it's just a matter of the degree.  I know he did everything within his power, but he's still in a lot of pain.  They will be hooking him up later to a pump where he can press a button and self administer the pain medication.  He's on a soft and liquid diet.

Thankfully, as I type this he is sleeping from the pain medication and the Benadryl.  He has also broken out in a red rash and in places has scratched himself raw which is not good with no immune system.  This is also a side effect of this particular chemo.

 Sitting here watching my child (no matter how old, they are always your child) suffer this way is very difficult.  I can't help but question why.  He's been through so much since being diagnosed in October 2009.  He had six months of ABVD chemo, weeks of radiation, almost three months of ICE chemo and now the clinical trial chemo regiment.  This is by far the worst.

If only there was a 100% chance of this working because anything less would be a very cruel joke after all he's going through.

I wish you could meet him.  I realize I'm his mother, but indulge me for a few moments.  Reid is quiet and easy going with a very good sense of humor.  He rarely complains.  I believe these personality traits have helped to get him through some of the rough patches.  But today there's no smile on his face.

The sores will not get any better until he starts receiving Neupogen which helps his body produce more white cells.  That won't be until day +5 or day +7 (in his case the nurse wasn't sure which until she looks it up) and then it will take a few days for the sores to begin to heal after the white count starts to go up.

The nurse has assured him that things will get better even though it doesn't seem that way right now.  He tells me this is Hell and he will never go through this kind of treatment again.  At this point I don't blame him one bit.  I feel helpless sitting here watching.  I am so grateful to Keith for taking time off from work to sit here with me last week.  He went back to Austin on Saturday and I really miss him today with the change in Reid's condition.

Reid also developed a cough a few days ago and is receiving breathing treatments 4 times a day and oxygen for shortness of breath.  This is a little concerning to me, but so far his lungs are clear and that is good news.

All the nurses here are very good, but today's nurse is super good.  Very attentive and caring...the one you'd want if you were feeling like crap.

I got here before the bad weather today which is good since it's getting very dark and dreary now and with my eyes I can't see well enough to drive in the dark anymore.  I might drive locally, but not on the freeways so now I'm worried about getting home.  I hope the weather clears.  I just checked with the motel where we have reservations beginning on the 21st to see if I could check in this week and be closer to the hospital, but it's not possible with the rodeo still in town until the 20th.  I hate having to leave early each day to beat rush hour traffic and darkness, but there's no choice.

Reid's awake now and they just hooked up the pump and a blood transfusion.  It's already helping some.  YEA!

As much as I hate all of this I was reminded yesterday that at least there's a possibility of a cure for Reid.  My friend Connie isn't as lucky.  I found out yesterday that she's been diagnosed with ALS (Lou Gehrig's disease).  Actually, her mother was a friend of mine that I met shortly after moving here in the early 90's.  Annette died of Lou Gehrig's disease around 7 years ago.  Connie was the one that cared for her mother.  Talk about unfair, but no one ever said life is fair.

I feel like I should end this on an upbeat.  I remember my niece who was a television news producer saying that they always tried to end the newscast with something upbeat, but today I'm at a loss.  I do have an adorable picture of the cat to share, but it's on the home computer.  I'll share it soon.

Thanks again for your support and prayers...Betty

Day 0...finally!! and creamed corn??

Finally!  Around 11:00 this morning Reid began receiving his stem cells back.   There were three bags that had to be infused and that's the first bag hanging all the way to the right in this picture.  It took a little over an hour and initially he was sick, but the nurse gave him something for nausea and then he pretty much slept through the whole thing and the rest of the day.  They've been giving him Benadryl anyway because he's had a reaction to one of the chemo drugs and has broken out in a rash.

The nurse stayed with him the entire time.  A nursing student observed.  Needless to say, Reid did not feel like posing for a picture, so you won't be seeing him today.

                                        

The whole thing was very interesting.  The stem cells arrived from the lab frozen in a thing that kind of looked like a cooler inside this white box.  Here he is getting ready to remove one of the bags.  (I'm sorry...I didn't get his name, but he was very nice about explaining everything to me and answering my 1001 questions.)

He thawed the bags as the stem cells were needed.  Here's one of the frozen bags sitting on the counter.  It came in the flat metal box that you can see in the picture and I assume it was to protect the bag from being damaged.  I understood him to say that they're hung by number inside a cryo...something, but we'll just call it a fancy refrigerator here.  Sorry, I'm no scientist.

He placed the bag of frozen stem cells inside what looked like a large Zip Lock bag and then placed them in water to thaw.  I think he told me the water was body temperature, but would drop a few degrees while he turned the bag around and the stem cells thawed.  It probably only took five minutes or less to thaw each bag.

With the third bag he had to take a couple of samples of the thawed stem cells so they could determine how many died during the freezing process.  It's normal for some to die off and I guess they want to have a pretty good idea of exactly how many good cells were infused.

And that was it.  The whole thing was finished in a little over an hour.

Then the entire room smelled like creamed corn.  Even though we were wearing masks we could still smell it.  The preservative that's added to the stem cells causes a smell like creamed corn that Reid's body puts out through his skin.  We were told ahead of time to expect it, and they weren't kidding.

Now it's in God's hands.

And while all of this was going on the nurse came into the room and said, "He's gotten a bunch of cards today," and handed me a stack of envelopes.  Thanks to Jenny over at Jenny Matlock..."off on my tangent" people are sending him cards after she wrote about him on her blog.  He'll have mail to open when he's feeling a little better tomorrow.  Thanks to Jenny and everyone else who read her blog post and responded.

All the caring, concern, and prayers are greatly appreciated.

Day -2 and counting...

Today is day -2 and so far things are going well.  Reid is still in good spirits and joking with everyone.  However, his counts have gone down and today he required his first transfusion.  As the counts continue to go down he will become more and more fatigued, so Keith and I will take a walk with him shortly.  We are told that evidence seems to indicate that the people who exercise and remain active get out of the hospital sooner.  There will be days when he won't be able to do much, so he must remain active while he can.

Here are the pictures I took on Monday when Reid was moved to the new stem cell floor.  He doesn't consider any of this a Kodak moment, but agreed to one picture.  

This is Keith sitting on the couch that opens up into a bed in case someone wants to spend the night.  Keith joked that it was too bad Reid didn't have this room on Sunday when we had the plumbing problems at home.  We could have all moved in and saved money on a motel.  :)  There are 2 TVs in the room and you can see the one in this picture.  The table can be rolled anywhere in the room and is nice for when we eat here with Reid.  I'm actually using it now as I type on the Netbook.

I give up!  I uploaded these pictures to Blogger from home intending to add text from here.  I keep trying to get my text aligned to the left, but it wants to be centered like the pictures and I'm tired of trying to change it each time.  From now on it will be centered...I think!

This picture shows how the room is set up.  It's at least twice as big as the room he had before.

And this is the view.  The building with BCM is Baylor College Of Medicine.  Between Baylor and the building to the right is Rice University's football stadium.  At least I think it's their stadium.

 

The brick building is St. Luke's Hospital.  That's where the Texas Heart Institute is located.   I believe the glass building is medical offices

I think this is part of St. Luke's too.  We'd love to see a helicopter land, but so far it hasn't happened.

That's the update for today.  Thanks again for your prayers and support.  Betty

Sometimes when it rains, it pours and day -4

This is day -4 and so far Reid has been doing well.  He is still eating well and exercising daily.  The stem cell patients are supposed to walk for at least 10 minutes three times a day.  Today is considered a day of rest and he receives no chemo on this day.  So far he's been receiving the same chemo drug, but tomorrow he'll receive something new.  At least that's my understanding.
 
A few hours ago he was transferred to a new room on the 17th floor.  This is a brand new area of the hospital and he's the first patient in this room.  It's probably twice the size of his previous room and has 2 tv's.  One for the patient and one for visitors.  The view of the Houston skyline is amazing.  I've taken pictures and will post them later.  Right now I'm at the hospital on the netbook.  We were kind of surprised when we heard about this move as we did not realize the new section was ready for patients.

His new room number is 1741.  The rest of the address is still the same.

Reid Martin

c/o MD Anderson Cancer Center

Room 1741

1515 Holcombe Blvd.

Houston, TX  77030

I haven't had time to update my blog.  When it rains, it pours.  We had sewerage backing up into the house and spent last night at a motel.  The plumber came this morning and we're OK now...I hope.  It was chilly yesterday morning and I turned the heat on and the carbon monoxide detector went off.  We turned off the heat and opened all the windows.  We actually think the detector malfunctioned.  We bought a new one and turned the heat on and it detected nothing, but we won't run the heater again until it's checked.

It's time for us to go take one of those ten minute walks!  We appreciate your warm thoughts and prayers...Betty

"Day -9" and counting...

I feel like Shorty Powers at NASA giving the countdown.  If you're not familiar with Shorty Powers then you must be young.  During the Mercury days he'd give the launch count down and then after launch tell us that everything was "A-OK."

So far everything is "A-OK" with Reid's anticipated stem cell transplant.  He received the three pre-admission injections which were to help with mouth sores.  The doctor had told him that they would cause a coating on the cells to protect them.  I guess they did because he developed a coating on his tongue which he finds a little annoying and which gives his food little taste.  He also developed a red face which is a side effect of this medication.  Yesterday he looked as if he'd been out in the sun way too long, but today it wasn't as noticeable.

He was admitted to the hospital on Monday evening.  On Tuesday he was given a test dose of one of the chemo drugs and then blood was drawn every two hours all day.  I believe this was to see how his body would react to the drug and how it was metabolized.  This drug can cause seizures, so he had to take anti-seizure medication.  The pharmacist told him that he must take this with the chemo drug and if he's ever unable to keep it down they will give it to him by IV.

Today was day -9 and a day of rest.  No chemo was given and he was feeling just fine.  We ordered lunch from room service and also took a ten minute walk outside the room wearing our gloves and masks.  Reid doesn't have to wear a mask or gloves in his room, but everyone else does.  He only has to wear them when he leaves the room.  He also began a  mouth regiment where he has to gargle four times a day with some special stuff (new medical term).  This is also to help with mouth sores.

Tomorrow is day -8 and that is when the real chemo begins.  His stem cells are scheduled to be returned to him on "day 0" which is March 11th.  We're told that some people consider this their new birthday.

Over the weekend Troy told me to return the Netbook and I notified Amazon that I wanted to get a replacement.  They immediately shipped a new one.  It was here in two days!  I can't say enough about Amazon's great service.  I took it to the hospital today and then couldn't connect to their WiFi.  Reid tried and he couldn't get it to work either.  I was about to call MD Anderson's tech department but decided to try one more time.  A box came up, I clicked it, and it worked.  Unfortunately, I have no idea how I did it and now hope I can get it to connect tomorrow.  We must have been doing something wrong.  It gave me the option of saving the connection and I didn't.  I was afraid that if I did it wouldn't work at the house.  Now I'm kind of sorry I didn't just save the connection for the hospital since that's where I'll be using it most of the time.  Wish me luck tomorrow.

I came home yesterday and went out on the deck to visit the cats.  I looked up and saw this...

Yes, little baby leaves.  Spring is definitely right around the corner.

I also took a few pictures of the cats.  Here's Atticus...

Jem...

and Scout.

I'll try and post regular updates.  It will be a long hospitalization and if anyone would like to send a note or card (nothing else is allowed) the address is:

Reid Martin

c/o MD Anderson Cancer Center

Room 1076

1515 Holcombe Blvd.

Houston, Texas 77030

Thanks for your support and prayers.