Friday, February 25, 2011

"Day -13" Starts Tomorrow

I was having so much fun with my new Netbook, but then it quit.  Yes, quit.  One minute it was fine and the next minute it wasn't.  It was so new I hadn't even had a chance to drop it yet.  If I was a geek I could probably fix it myself, but I'm not.  So, it will have to wait until Troy comes over.  I had been planning to use it during Reid's hospitalization and while we're living down in the Medical Center, so I'm really hoping Troy can figure out what's wrong and fix it.

Yesterday Reid had an appointment with the doctor that's running the clinical trial.  Reid's stem cell doctor was away, so he saw this doctor instead.  His cold and the shingles are gone, so he'll be admitted on Monday for the chemo and then the stem cell transplant.  He starts the injections tomorrow and will have one each day for three days to try and keep him from having too much trouble with mouth sores from the chemo they'll be giving him.  They keep referring to this as the "really strong" chemo.  This is the chemo that is so strong it will destroy his immune system which is the reason for the stem cell transplant.  We're praying that it will also destroy any remaining cancer.

Reid's stem cell doctor told him a couple of weeks ago that he believes someday this chemo will become the standard for relapsed Hodgkin's.  The doctor yesterday said the results have been promising...especially in patients with Hodgkin's like his.

So, tomorrow he starts the countdown with the first injection and that will be considered day -13.  The days before transplant are minus days and the day of transplant is day 0.  After that the days will be plus days as in +1, +2, etc.  There is a risk of infection while his immune system is destroyed and hopefully the stem cells will engraft quickly and begin to multiply.  He's going to be in the hospital until they feel his numbers are high enough to give him some protection.  That can be two or three weeks from the time of transplant, so he's going to be in the hospital for a while.  He's not exactly looking forward to it, but he's resigned and ready to get the show on the road.

Meanwhile, I'm trying to get some things done before I spend time down there every day with Reid.  Today I mowed the back lawn.  Actually, it was the weeds that were growing and I needed to get them knocked down.  We don't have St. Augustine grass in the back.  St. Augustine is a warm climate grass, but it doesn't grow well in the shade and we have a lot of trees.  Something like Fescue can't tolerate the heat, so I let Monkey Grass grow all over the yard.  Monkey Grass isn't really lawn grass.  It's used as edging and usually grows along borders or around trees.  I just leave it tall around the edges and trees and then mow it shorter everywhere else.  It's slow growing, so I don't have to mow too often.  Hopefully, today's mowing will last a while.

I know some places have had snow again.  I'm sorry to report that I have still not seen a robin, so I don't believe they've started their migration north yet.  Or perhaps they have and I've just been too busy to notice.  Normally, I'd be walking outside a little this time of year, but I just haven't had time.  I did notice violet plants all over the yard today, but no flowers yet.  I also saw a butterfly go by. The trees are all budding though and I'll probably be seeing leaves soon.  It's been in the 70's lately.

Does anyone remember this song?  It goes..."Spring is here said the daffodil; how do you know said the old oak tree."  Every spring I find myself humming it, but those are the only words I remember.  One of the kids sang it in preschool.  It might have been Reid, but I'm not sure.  If anyone has a child or grandchild that sings this song today please send me the words.  Thanks.

Tuesday, February 22, 2011

What's been happening around here...

I finally decided to change my E-mail addresses from AOL to gmail.  Tonight I tried to sign into my blogger dashboard and couldn't.  I kept trying with my DayDreamnWorld gmail address and couldn't get in.  Finally I typed in DayDreamnWorld at the AOL address and it worked.  Now I'll have to go back and change that too before we give up AOL.  I have comments coming to the gmail address, so I thought I was all set.  Guess I was wrong.

This past weekend I looked outside and there were the cats with the armadillo that lives under our deck.  Atticus was following him around and Jem was poised on the roof watching the action below.  It was one of those morning where everything was wet and it hadn't even rained.  I guess that's one of the reasons why this is called a semi-tropical climate.  Anyway, the A/C was running and keeping us nice and cool inside the house.  I grabbed my camera and ran outside to get a picture.  So many cute Kodak moments as the armadillo ran around and Atticus followed him.  I was snapping away and this is what I got.

All of my pictures looked like this one.  I know from past experience to wipe off the lens and keep shooting, but this time the moisture was even behind the lens.  It comes from going quickly from the cool house out into the warm, humid air. 

Keith has been here since Saturday and will leave tomorrow to go back to Austin.  He originally planned this trip thinking Reid would be in the hospital for the stem cell transplant, but it worked out because Reid is feeling a little bit better and we were all able to go out to eat on Saturday.  Troy joined us too for some Italian food at Birraporetti's here in town.  There's also a Birraporetti's in Houston down in the Theatre District and I guess that's why they have all the posters from various shows on the walls here.  Below are Troy, Keith and Reid trying to decide what to have for lunch.

And waiting...

And then I told Jim to take a picture of me since I'm usually the photographer and rarely appear in pictures with the rest of the family.

I never got a picture of Jim and Troy was cut out of this one.  One of these days I'll figure out a way to get a picture of all of us together.

This week Reid has appointments down at MD Anderson on Wednesday, Thursday, and Friday.  If all goes well he'll start the three days of injections he needs prior to chemo to help prevent mouth sores on Saturday and then will probably be admitted sometime on Monday.  We'll find out for sure in the next few days.  His cold and the shingles are pretty much gone, so things are looking good right now. 

I had to change the motel reservations for when he's discharged and we have to live down in the Medical Center.  The place I originally booked can't extend the days because of the NCAA Final Four in Houston April 2-4.  Other places were booked too, but I finally found one that had room.  I actually kept the first reservation too because I think I like that place better and she put us on the waiting list for the extra days.   We're the first name on her list and will get the room if there's a cancellation.  I just have to make sure I remember to cancel one of them nearer the time before I get charged for two places.

My Netbook arrived last week and I'm having fun fooling with it.  It's one of the reasons I decided to go with gmail.  I don't care for reading E-mail from AOL's home page and I wasn't about to put AOL's program on the Netbook.  Although I'm not crazy about the keyboard (it's supposed to be 95% the size of a standard keyboard) it's a trade off for the smaller size and lighter weight than a laptop.  I got the Asus EeePC 1015 from Amazon.  If you're interested you can see it here.  I read a bunch of reviews and ended up getting this one because of  the positive things people said and the longer battery life.  A lot of people suggested upgrading the RAM, but so far it's working OK for me, so I decided to wait and see how it goes.  I even found a YouTube video where a guy shows you how to install it.  It sure looked simple enough, so I might eventually give it a try.  Now I'll have a way to keep in touch while we're away from home.

Monday, February 14, 2011

Reaching Into the Valentine's Day Archives...

I wanted to do a post for Valentine's Day, so I reached back into my photo archives and came up with a couple of pictures.  Some of you might have seen them before.

GinnyEllen ate way too much candy and cookies at the class Valentine's Day party.  The school nurse arrived in the nick of time.

This was another year when the boys got into a fight over GinnyFaith's affection.

Happy Valentine's Day!!

Sunday, February 13, 2011

Valentine's Day Treat

It's time to confess.  We still have our Christmas decorations up.  I'm pretty sure we'll have to buy a new tree next Christmas because the cats have climbed this one once too often.  The lower branches now hang way down and when I try and push them back into place they don't want to go.   If I had all the boxes here at the house instead of the storage place I'd probably have slowly taken some of it down by now, but it's going to involve a bit of time and a truck to get them all over here.  So, for now the Christmas things stay up.  If I wait much longer I can just tell people we put our decorations up early this year!

I still had candy canes left over from Christmas.  I also had some of the candy melts left over from when I made the Christmas Tree candy that I showed you here.  Since it's almost Valentine's Day I decided to make Valentine's Day candy.  It was just a matter of buying a pan with heart shapes instead of Christmas Trees.  These are very easy to make and taste pretty good too.  My picture isn't fancy (or very good), but it will give you an idea of what they look like.  I used one of those Wilton silicone pans that I got at Joanne's.

We've had some really cold weather lately.  So cold that the cats had to cuddle up to stay warm.

But today it is beautiful outside.  I was out in the yard for a while and didn't even need a jacket.  The windows are open for the first time in weeks.  I do believe that Spring is right around the corner.

Reid's cold has continued to get a little better each day.  The shingles look ugly, but they really aren't causing him any discomfort.  We should find out this week what the new game plan is for the stem cell transplant.  Hopefully, it will only mean a one week delay.

We had told Reid last November that we would plan a vacation for him and his brothers.  A way to celebrate the stem cell transplant and something to look forward to during the treatments.  They all wanted to go to Comic Con in San Diego in July.  I had never heard of Comic Con, but I quickly learned that I've apparently led a sheltered life.  Comic Con is very popular and the biggest convention that San Diego hosts.

I believe the tickets went on sale online the first time in November.  Knowing it was a popular event Reid and I each got on a different computer and attempted to buy the tickets.  We couldn't get into the site.  Finally, they announced that their site had crashed and they'd sell tickets another time.  The second time the same thing happened.  I believe we invested two or three hours each time reloading the screen.  Then one day in December as we were walking into the hospital Reid saw on his phone where they had sold 1,000 tickets that morning unannounced as a way to test their new ticket selling procedure.  We were kind of bummed that we missed that opportunity, but waited for the new date to be announced.

Finally, the day came last Saturday.  We had Keith standing by in Austin on his computer and we all attempted to get into the site for the sale.  This is what we saw...again.

We tried again for a couple of hours.  Finally, I had to go out and Reid and Keith became discouraged and gave up.  While I was gone Reid decided to go back again and try one more time and he had success!  He was able to buy tickets for everyone including Jim.  (Well, not exactly everyone.  I'll stay here to take care of the dog and cats.)  Then we started looking for a hotel/motel.  We found that anything close to the convention center is already booked.  Finally we found a place not too far away and locked in a room.  (We might have to take out a mortgage to pay for that room.)  So, Comic Con here they come!  It's July 21-24 2011.  Hopefully, Reid will have regained a lot of his strength by then.  Another reason why we're anxious for the stem cell transplant to get underway.

Now I'm going to go back outside and sit on the deck for a while and enjoy the day.  I'll let you know if I see a robin.  I always know Spring is on the way when I see the robins migrating through here on their way up north.  I usually see the first one sometime in February.

Friday, February 11, 2011

What Next??? Update...Change Of Plans

Last night Reid suspected that he might be coming down with a cold.  He had a slight sore throat...the kind you get when a cold is approaching.  We hoped it was just caused by extra dryness in the house from running the darn heater so much lately.  We've had winters where we only ran it a few days all winter, but lately it's been running day and night for a couple of weeks.

This morning it was official.  He's got a cold and that's bad news right because of the scheduled stem cell transplant.  He spoke to his doctor's nurse down at MD Anderson and was told to get down there right away.  We jumped in the car and were there within a hour.

They drew blood and sent him for a chest X-ray.  He saw the PA and she did a test for flu, but we're 99.9% it's only a cold.  However, he noticed a slight rash yesterday and mentioned it to her because it had spread and encompassed a larger area on his shoulder and chest today.  Much to our surprise we learned that it's shingles.  It hasn't really been painful which she told him was unusual, but it's still shingles.  Hopefully, it won't bother him too much.  He's now taking Valtrex and something else that's for a bacterial infection.  I think that one is being prescribed as a prophylactic.

The stem cell transplant is on hold.  He will not be getting the pre-admission shots and he will not be admitted on Sunday.  On Monday he has to go back to MD Anderson.  I guess then we'll know more. 

I know patients with depressed immune systems from chemo sometimes get shingles.  We are so careful about using hand sanitizer and avoiding crowds, but he finally caught a cold.  This is the first cold he's had since this cancer journey began almost 16 months ago.  It's just the timing for all of this is so bad.

I know they don't want to delay the transplant, but right now there's no choice.  I just wish once he'd get a break.  He's certainly earned it.

Thanks for your support and prayers.

Thursday, February 10, 2011

Moving Ahead With The Stem Cell Transplant

I haven't had a chance to update my blog lately because we've been spending a lot of time down at MD Anderson the past week.  A lot of the time is spend waiting between appointments since they can't all be scheduled one right after the other.  The hospital has plenty of areas to relax with recliners, couches, tables and comfortable chairs.  There are usually jigsaw puzzles to work on too.  In fact, the jigsaw puzzles are also in all the waiting rooms.  In addition there's places to do research, coffee shops, etc.  They've tried to make it as comfortable as possible since everyone has to spend time waiting.

I finally decided to order a Netbook.  I went back and forth for a while trying to decide between a laptop, IPad or a Netbook.  I wanted something that wasn't too heavy to lug around but that could be easily used for E-mail, blogging and surfing the web.  It's taken me so long to order one because I just couldn't make up my mind.  Earlier this week I saw Oprah talking about the IPad being her all time favorite thing and almost went back to the IPad.  Anyway, yesterday morning I took the plunge and ordered the Netbook from Amazon.  It's difficult to keep up with things when I'm down at the hospital all day and too tired at night to get online.  Now maybe Reid and I can use the Netbook to help occupy some of our "spare" time although he already has a phone and Kindle that he uses.  I'm hoping the Netbook gets here quickly.

Now on to what we know about the stem cell transplant.  Last week Reid had a bilateral bone marrow aspiration.  That's two in each hip.  We learned yesterday that his bone marrow is clear.  This week he had all the PET scans again and he still has a few little spots in his chest but they are smaller than they were before.  He's been recovering from the ICE chemo and his blood counts have gone up a little although his hemoglobin was still down but not enough so he needed a transfusion.

He will be admitted to the hospital on Sunday, February 13th.  The days before transplant are considered minus (-) days.  The day of transplant is day "0" and then the days following are +1, +2, etc.  Reid will start at -13 which will be Friday (good thing we're not superstitious) when he must have an injection of Palifermin which helps control mouth sores.  Saturday will be -12 when he gets a second injection and Sunday will be -11 when he gets the third and last injection and is admitted.  (Does this remind anyone else of a NASA countdown or is it only me?)

It has been decided that Reid will not get the standard pre-transplant treatment for recurring Hodgkin's which is usually a chemo regiment called BEAM because it is felt that his disease cannot be effectively treated this way.  His tumor appears aggressive and he was stage 4 at diagnosis.  Instead, he will be part of a clinical trial that MD Anderson is conducting using three other known drugs.  The purpose of the study is to determine the highest tolerated dose of the one drug combined with the other two.  Here's the information about the trial from the government website if you're interested in reading the technical stuff.  Everything was explained to Reid and he was given many opportunities to ask questions.  No promises were made.  They were very careful to say things like, "this may..." and not "this will..."  Of course, these drugs all have pretty much the same side affects as the other chemo drugs he's had...secondary cancers, sterility, etc.  The list goes on and on.  You do what you need to do and Reid signed the papers yesterday.  This particular trial is ongoing and only being conducted at MD Anderson.

I asked and was told that the doctors meet once a week and present their cases.  The cases are discussed and the best course of treatment is recommended for each patient.  We are all comfortable with this recommendation and Reid's decision.

It has also been suggested that he consider a second clinical trial.  He has plenty of time to think about this one as it wouldn't take place until after transplant but would last a year.  This one is a double blind study which means he may or may not get the drug being investigated.  It would mean an IV every three weeks and the usual scans and tests.  However, if he was in the study and relapsed they would be able to put him on the drug if he was getting the placebo.  This trial is for patients with Hodgkin's or at risk for the Hodgkin's to come back.  Reid is considering this one too.  This particular trial is being done at multiple institutions. 

I was thinking the other day that in the last fifteen months Reid has spent almost nine months on chemo.  Within the last week he has started feeling somewhat better from the last round of the ICE chemo.  We actually all went out to eat last night and had a good time.  Now it's time for him to go back into the hospital and start all over again feeling crappy.  It just doesn't seem fair.  Although he has moments of frustration he's usually got a smile on his face and just keeps pushing forward.  For that I'm grateful.

Today we don't have to be down at the hospital for a change and tomorrow he doesn't need to be there until 5:00 for the first injection.  It's nice to be able to rest up a bit before he's admitted for probably three weeks or so.  I did find a place down in the Medical Center this week and have that reserved for when he's discharged.  It's going to be rodeo time in Houston and I found that not everyone honors the medical rates during that time and some places are already booked up.  I'm glad I took care of that last week.

Now we have to all stay healthy.  No one can afford even a cold right now.  We're keeping the hand sanitizer companies in business and so far it's paid off.  When we hear someone sneeze or cough we run away.  I try and go to the grocery store when they're not busy and visit other stores as little as possible.  No more browsing just for the heck of it.  We won't be able to visit Reid if we get sick...especially when he has no immune system and very vulnerable to infection.  Needless to say, Reid especially cannot afford to get a cold or anything else right now.  We would not want to see his treatment delayed.

I'll try and post updates as time allows.  If the Netbook gets here quickly I'll be able to do it at the hospital.

Your thoughts and prayers will be especially appreciated over the next couple of months.

Saturday, February 05, 2011

Stupid Spam Comments

I sometimes wonder if I'm the only one that gets daily spam comments.  I moderate all comments just so I can catch the spam that might slip by Blogger's spam filters and every week I catch some.  The comments are never for a current post, but go back to something posted weeks or months ago.  Some post titles get more comments than others.  For some reason the post entitled My Italian Stone Fruit Collection is especially popular.  Also one of my posts with Christmas pictures from the 1950's that I posted back in 2009 gets quite a few.  Do they really think I'm going to let their comments go through?  If a comment  is even slightly questionable I delete it.

I'm assuming the people that don't moderate or have the dreaded word verification set up on their blogs are getting these comments and don't even realize it.  They are never for a current post and are usually for things like escort services, enlarging body parts, etc.

Today I got this one:

Hi, i simply needed to come here to show you of a super inexpensive service that posts comments similar to this on millions of Wordpress blogs. Just why you might ask, well you may wish to sell a product or service and target webmasters or merely just increase the amount of backlinks your website has that will improve your Google rankins which will then bring your web site much more traffic and cash. Take a fast look at this website for more information.

This one was caught by Blogger's spam filters.  I removed the link to this website, but it kind of explains how people are able to post so many bogus comments.  This is for Wordpress Blogs, but I'm sure they have it for Blogger too.

It's annoying, but I guess I'll just have to continue to delete, delete, delete.  I have a feeling I'm not alone.

Tuesday, February 01, 2011

Even Busier Days Ahead

Reid saw the stem cell doctor yesterday and as things now stand he'll be admitted to the hospital on February 13th for the stem cell transplant.  Meanwhile, he has a bunch of tests scheduled between now and then.

Tomorrow he has another bone marrow aspiration.  On the 4th is the Stem Cell Pre-Amission class and on the 7th there are labs, an echocardiogram and a pulmonary function test.  On the 8th he'll have the PET scans again and a visit with the Social Worker.  On the 9th he has an appointment for HT/WT storage consent  (I'm not sure what this is because we thought he had already signed something before they harvested the stem cells), another visit with the stem cell doctor, and a clinic visit with the research coordinator.  On the 11th he goes in for an injection and we were told he would have those for three days.  That brings us to the 13th when he's admitted for three weeks. 

We were told to start looking for a place to live down near the Medical Center for when he's released.  I've got a list to work off of and they said to get something lined up soon.  Even if he was released from the hospital early we should be able to change the dates.  Places down near the Medical Center are used to being flexible I guess.

I called today to get a hair cut.  I thought I'd better do it now before things get any busier.  And they're saying we might even get snow later this week.  Of course, that excites us because it's a rare occurrence in these parts.  The temperature has been dropping since early this morning and I heard a little while ago that it might even get down in the 20's in Galveston!  I dragged some of my tropical plants into the garage and covered the others with sheets.  I hope I don't lose any.  It's never gotten that cold in the 20 years we've lived here.  We'll let the water drip tonight so we hopefully we won't have frozen pipes in the morning.  Homes here are not insulated the way they are up north.

I can't believe all the snow I'm seeing on the news.  Such pretty scenes, but that's easy for me to say since I don't live there.  I'd just love to grab my sleigh one more time and go down a hill before I'm too old.

Circa 1954

Some years back on a Ginny Doll list we set our dolls up in scenes reminiscent of past events in our lives.  Here's one of my dolls looking like me back in 1954.

Stay warm everyone!