Friday, December 31, 2010

Christmas Update...

Things have been kind of hectic around here lately and I've found myself with little online time to either post or read blogs.  Keith was here from Austin for Christmas and left on December 29th.  That was also the day that Reid had numerous appointments down at MD Anderson for the latest round of tests, scans, X-rays, etc.  We left the house a little before 8 in the morning and didn't get home until after 6:30 in the evening.  It was also my birthday and the best present I could hope to receive is for Reid's scans to all look good.

As anticipated Reid came home from the hospital on Christmas Eve.  A change in nausea medication seemed to have helped with this round of chemo.  He was able to eat a little and the only problem he had was with the constant fatigue which is to be expected.

On Christmas Day Reid had a 12:30 appointment for the Neulasta injection which is always given 24 hours after chemo.  Keith, Troy, and I took Reid down for that while Jim stayed home.  On Christmas Eve Jim came down with a cold, so we immediately began treating him like Typhoid Mary with everyone avoiding him like the plague.  With Reid's blood counts down after chemo he's very vulnerable to infection, but so far no one else has come down with Jim's cold.

We gave Reid the option of waiting to celebrate Christmas at a later date when he would be feeling better, but he did not want anyone else to have to wait.  There are no small children involved and everyone else was very agreeable to waiting, but Reid wanted to go ahead and celebrate Christmas on Christmas Day.  So, that is what we did after we got back from the hospital.

This is Jim (AKA Typhoid Mary) on the far side of the room opening one of his presents.  He was a good sport and wore that mask up until yesterday.  Meanwhile, I followed him around with disinfectants and hand sanitizer.

This is Reid opening one of his presents.

It was really something for him and his cat Ash, but Zoom decided to check it out first.  It's a remote control spider.

Troy was Christmas Boy this year.  It's a yearly tradition in our family and the person chosen as Christmas Boy hands out the packages.  He was supposed to be wearing the Christmas Boy hat, but we all forgot so he got away without wearing it this year.  This is Troy opening one of his packages.

Jim and Keith always complain about me keeping the house too cold in the winter.  They've lived in Texas too long and no longer remember the colder climates we've lived in, so anytime the temperature outside dips below 65 degrees they complain they're cold.  I bought them heavy bathrobes.

Here's Keith wearing his new robe while opening a gift.

Troy also got a new robe.  Reid didn't because he already has one.  Here's a picture of Jim wearing his new robe with Zoom hanging on.

As is usually the case, there are no pictures of me.  I'm the official family photographer.

I had bought some stuffed pork chops for Christmas dinner and took them out to thaw in the morning.  I didn't want to leave them out while we were down at the hospital, so I stuck them back in the refrigerator and took them out again when we got home.  They were still partially frozen when I put them in the oven so I added on some additional cooking time.  When we cut into them we could still see pink.  I put them back in the oven again for some additional time, but they still didn't look done.  Finally, I decided not to take a chance and threw them out.  Reid's food is suppose to be thoroughly cooked and since none of us could decide if they were cooked enough we couldn't take a chance.  It's was OK...we didn't really miss them.  We had enough other stuff to satisfy our hunger.

We had a nice day.  Even though the tree was put up at the last minute and I had one day to shop everything seemed to fall in place.  Considering what we're dealing with right now things went very well.

Tomorrow Reid has a 7:30 AM appointment at MD Anderson for a blood draw.  His platelets were down on the 29th and will probably be down even more by tomorrow so they need to check.  He'll probably need a platelet transfusion, but that's to be expected with this round of chemo.  Jim is well now, so he'll take him down this time.  I'm going to try and stay up to watch the ball drop in Times Square.  Fortunately, we're on Central Time so the ball drops at 11 here.

Next week will be a busy week with Reid having appointments at MD Anderson on January 3rd, 4th, and 5th.  He'll be seeing both the Stem Cell Transplant doctor and his Oncologist.  I'm hoping and praying that those scans look good.  I'll post updates as time allows, but I'm usually too tired in the evening to get online.

I have a few more pictures of Reid's cat Ash to share.  He keeps us all laughing.

This is Ash pretending to be a turtle.  That's actually a cat bed turned upside down.

And here he is hiding under the Christmas tree.

But Mikey found him!

Sometimes life becomes overwhelming for Ash and he decides to give himself a time out.

I wish everyone a safe and healthy 2011!  HAPPY NEW YEAR!

Wednesday, December 22, 2010

Round Two...

Reid was admitted to the hospital Tuesday evening for the second round of chemo.  As expected, his platelets had gone up to a safe level.  The way things look now he should be coming home on Christmas Eve, but will have to return to the hospital on Christmas Day for the shot that helps build up his white blood cells. 

Keith will be arriving from Austin on Christmas Eve and Troy will come over on Christmas Day, but we expect that Reid will not be feeling well.  After the first round of chemo he was sick for a week, so we will celebrate Christmas at a later date when Reid feels better and Keith is back from Austin.

I probably won't have time to post again for a while.  I hope everyone has a Merry Christmas and you find lots of surprises under your tree!

Circa 1949?

Saturday, December 18, 2010

It's been a while...

I know it's been a while since I last posted, but I sometimes lack the time and/or energy to get something written.  I decided to spend a little time this morning writing an update.

Reid slowly recovered after his last chemo.  This is a stronger chemo and has left him quite fatigued, but at least the nausea gradually subsided.  We thought he'd be having his second round of chemo by now, but his platelets are still too low in spite of a platelet transfusion on Thursday.  The Oncologist said that this isn't at all unusual and we'll just wait until they go up to a safe level for chemo.  He'll have more blood work on Tuesday and another appointment with the Oncologist.  They've got him scheduled for admission to the hospital on Tuesday, so I'm assuming that means the Oncologist is pretty certain the platelets will be up by then.

This has been a busy week with four days spent down at MD Anderson for various appointments.  He was seen in the Stem Cell Transplant Center and we all attended a mandatory class on transplant.  We learned that he'll spend approximately three to four weeks in the hospital and then he'll need a caretaker with him 24/7 for up to another 30 days once he's home.  We might have to rent a place down near the medical center since they're required to be within 30 minutes of the hospital for those 30 days and we're 45 minutes to an hour depending upon traffic.

In order to receive the transplant he must be in full remission.  He'll be receiving more intense chemo when he's admitted to the hospital for the transplant.  This hopefully will destroy all the cancer.  It will also destroy the blood forming cells and suppress his immune system.  Having the transplant makes it possible for him to receive these higher doses of chemotherapy than would otherwise be possible. 

The transplant he'll be receiving is called Autologous which means he'll be his own donor.  His stem cells will be collected, frozen and stored in a laboratory.  Then he'll receive those high doses of chemo to destroy any remaining cancer.  The stem cells are then reinfused and we wait for them to engraft.  The doctor explained that stem cells are like the seeds of the cells.  Once they're infused we wait for them to grow like seeds in a garden.  He assured us that they always grow.

Prior to transplant the stem cells will be mobilized for collection by injections that cause more of them to pour out from the bone marrow into the blood.  They'll then be separated from the blood using some kind of machine and collected in a bag and the rest of the blood returned to him.

You can probably find a much better explanation of all of this here.  My explanation might not be completely accurate, but it's the way I understand things right now.  We were given reading material and a CD, but haven't had a lot of time to absorb all the information yet.

We've decided to celebrate Christmas when Reid is feeling up to it.  The way things are looking now that might not be until February, but we'll wait and see.

We received a surprise last week when the florist delivered a decorated Norfolk Island Pine.  My friend Sherelyn had read that I might not have time to decorate for Christmas, so she sent us a decorated tree.  I stood at the door crying and the poor florist didn't know what to say.  Sherelyn will be glad to hear that we did finally bring a few things over from the storage shed and I plan to do some decorating this weekend.  Of course, it looks like our decorations will still be up in February.

Meanwhile, we took the dog to the emergency clinic late last night.  My sister's package arrived and it included a tin of Peppermint Bark from Williams and Sonoma.  In my wildest dreams I never imagined the dog being able to open a tin box, but Jim and I went out to dinner and when we got back the tin was open and the Peppermint Bark was gone.  I know not to let the animals get near chocolate, but I thought the Peppermint Bark was well protected in a metal tin.  Some of the other gifts had been torn open too, but I believe Sophie might have had help from the cats.  I think they were just playing with the paper.  Anyway, Sophie started vomiting and around midnight or so we decided to take her to the clinic.  Her heart rate was up a little, but not dangerously so, and she was given a shot to calm her stomach.  Never a dull moment.

I'd better go.  I have a lot I'd like to accomplish this weekend.  Wish me luck!

Thursday, December 09, 2010


I had to take Reid down to MD Anderson early yesterday morning for blood work.  Then he had a 9:00 AM appointment in the Lymphoma Clinic for more labs and then a 2:00 PM appointment in the Fast Track Clinic to evaluate how he's been doing.

Yesterday we used the valet parking at MD Anderson so we could get a wheelchair right at the door.  He's been pretty sick with this round of chemo.  He was taken quickly for the blood work and then we made our way upstairs for another lab appointment at  9:00 AM in the Lymphoma Clinic.  While he was checking in at the desk his cell phone rang and it was the lab downstairs.  They made an error and needed one more vial of blood.  So, we made our way back down there for another draw and then returned to the Lymphoma Clinic to wait.  We waited for an hour and a half and all Reid wanted to do was lay down and try to get comfortable.  I went up to the desk a couple of times and finally asked if I could leave my cell phone number and take him downstairs where they have an area where patients can lay down and sleep between appointments.  The lady at the desk said she'd send the nurse out to speak with us.

The nurse came out and told us that they had combined the two labs and he didn't need to be in the Lymphoma Clinic at 9:00.  He just needed to be there for his Fast Track appointment at 2:00.  I couldn't believe what I was hearing.  We had a printed copy of the schedule and I showed it to her.  We had waited an hour and a half.  If things had changed and he didn't need to be there why didn't someone come out and tell us?  Would they have left us waiting there until 2:00?  If he had felt OK it would have been one thing, but he was very sick.  In fact, he rolled the wheelchair into the men's room at one point because he didn't feel well and after about ten minutes I become very concerned, but I couldn't exactly go in after him.  I got up to stand by the men's room door in hopes a man would come by and I could send him in to check, but fortunately Reid came out a short while later.

I was so upset and the nurse apologized.  She asked for my cell phone number and told me to take him downstairs to the area where he could lay down and she'd call if they could squeeze him in before 2:00.  A short while later she called and he was seen by the Physician's Assistant.  All his blood work looked good, but he has to drink more which is difficult with his stomach upset.  She changed the nausea medication and had him increase the anti fungal medication and gave him a prescription for a mouth rinse since he's already developed mouth sores from the chemo.

I took him back to the area where he could lay down and went up to the pharmacy to wait for his prescriptions to be filled.  He was able to sleep for an hour or so while I waited.  I guess we got home around 2:30 PM.

The good news is that he hasn't taken any pain medication since leaving the hospital on Sunday.  I didn't even realize right away, but he told me he doesn't need it.  That means the mass must have already shrunk.  He's using his left arm and thinks he'll be able to type now on the computer.  That's pretty amazing since he was requiring some pretty strong pain meds just to get the pain to a manageable level.

We're having some computer problems, so don't be surprised if I don't post for a while or answer E-mails.  Hopefully, we can get it fixed soon. 

Monday, December 06, 2010

He's home...

We brought Reid home from the hospital last night.  He's very, very sick from the chemo.  It must have been a cumulative thing because we could see his condition change day by day.

He's vulnerable to infection and has to take antibiotic, anti fungal, and antiviral medications in addition to medication for nausea and all of his pain meds.  He woke up around 7 this morning and took some of the meds and went right back to sleep.  He's extremely fatigued.

I'm busy this morning cleaning the house, but my back hurts and I'm worn out from going back and forth to the hospital the last few days.  I just want to have everything as clean as possible to help avoid infection.

I can't even think about Christmas and have no idea when and if we'll get up any decorations this year.  I'd like to, but I just don't know when I'll find the time or energy to go over to the storage shed and bring everything over here and then put it up!  Besides, if all the chemo goes according to schedule he'll be pretty sick at Christmas time.

Tonight he has to be back at the hospital for a shot at 6:00.  This shot has to be given 24 hours after chemo is finished.  Jim is going to come home a little early so he can drive.  I just have too much trouble seeing to drive at night now.

This was the view from Reid's hospital room.  It's a little dark, but the tall buildings in the distance on the right and left are condominiums and I believe the building in the middle is the VA Hospital.
Now I've got to get back to cleaning...

Saturday, December 04, 2010

Saturday Update...

Reid is feeling better than I expected.  He ate breakfast this morning, but his stomach was bothering him this afternoon.  The nurse told him that he needs to tell her so she can give him something right away.  He's in good spirits and was watching TV and napping while we were there.  His pain level has been at a two which is good.  I would say so far things are going very well.

Friday, December 03, 2010

Another Update...

I"m home now from the hospital.  Jim arrived after work and he's going to be staying for while this evening.  When the doctor came in this morning he wanted to know why Reid's chemo hadn't been started.  I think it was a resident with him and he said that the orders had never come up from Admissions with him last night and their pharmacist went down this morning and got them.  When they tried this morning to access his port it was clogged (not a medical term I'm sure, but that's what we say) and they had to put something in it for a hour to unclog it.

A little before 3:00 this afternoon they started the pre-chemo drugs.  They took about a half hour and then they began the first of the three drugs.  I just spoke to Jim and they've started the second drug.  With this one they have to check his blood pressure every hour because it can cause his pressure to drop too low.  I believe this one takes around two hours and then they'll start the third drug.  Then the whole thing gets repeated for the next two days.

The doctor told me that one of the drugs can cause confusion and if he seems confused and doesn't make any sense I should let them know right away.  He also said that would be very unusual in a young person.  I passed that information on to Jim before I left.

Before they started chemo Reid and I ordered lunch from Room Service.  They don't bring the meals to the floor all at once on a cart like they do at most hospitals.  Instead there are menus and Reid just picks up the phone and calls in the order.  I think he can do that from 6:30 in the morning until 10:30 at night.  The guest menu has prices, but other than that the menus are the same and there are lots of choices.  Reid had a pizza and I had a Philly cheese steak sandwich.  It was delivered by a man wearing black slacks and vest and a white shirt.  Kind of like what you'd see a waiter wearing in some restaurants.  It would be really nice if cancer didn't suck.

Jim said someone came in a little while ago and explained about all the medications he'll have to take once he gets home.

I'm hoping he doesn't get too sick from this chemo, but time will tell.  I guess he'll be coming home on Monday now since the chemo got started late.


The hospital finally called around 6:30 last night...just about the time we had decided they probably wouldn't call until today.  We had to wait for Jim to get home from work since I no longer drive on the freeways in the dark.

We got down there around 8:15 and left after Reid got settled in his room.  I would imagine they started the chemo last night, but I don't want to call his room and perhaps wake him up to ask.  It's before seven in the morning here and I don't think he'd appreciate it.  I'll be going down later this morning.

Your thoughts and prayers are appreciated.

Thursday, December 02, 2010

Standing by for Plan B...

Here's how it works.  Reid is to be admitted to the hospital sometime today, but we don't know when.  He had to call MD Anderson this morning and leave his cell phone number.  When a bed is available they'll call him.  I was told yesterday by Admissions that he'll have until 10:30 tonight to claim the bed.  He'd just as soon wait until 10:30, but I don't drive on the freeways at night anymore so earlier is better.  We'll have to call Jim home from work if it gets too late.

The Oncologist told him that the hospital is nice and there's even room service.  Reid would still prefer the Hilton over MD Anderson.  He's not looking forward to chemo again.

This picture was taken last Friday.  Keith made Turkey Soup for dinner and Reid was wearing the shirt Keith gave him.  It kind of says it all.