The Bad "C" Word and other stuff...

I've been busy for a while trying to get some much needed stuff done around the house.  We had let things go for years.  First we had my Dad with Alzheimer's living nearby and that required almost daily visits for a long period of time.  Then Reid was diagnosed with Hodgkin's and more recently Jim was diagnosed with prostate cancer and lost his battle. So, getting stuff done around here wasn't exactly our first priority for a number of years.  Everything overlapped and there was never a break in between to have a somewhat normal life and get things done.

So, I finally hired painters for the dining room and then had a handyman put up crown molding (which I probably should have done first).  Afterwards I had to caulk and paint the new molding.  It took me forever because: 1.) I'm old, 2.) I'm tired, 3.) My back bothers me, 4.) I had to trim bushes and do some yard work,  5.) I still have to vacuum, dust and grocery shop occasionally 6.) I wanted to watch some of the Olympics.  7.) My friend, Coletta, visited from California!  I forgot to take pictures, but she brought me roses and Ashely said they were delicious.

Anyway, the dining room is done...sorta.  I still have stuff to be hung.  I can do some of it, but I asked Troy today if he could come by someday and hang the stuff that needs those molly bolt things.  Hopefully, in the next couple of weeks that will all be done.

Meanwhile, Reid received a call from MD Anderson about coming in to see the stem cell doctor this past week.  We did think that was a little odd since he had been sent back to his regular oncologist for the Adcetris treatment.  We both decided it was probably just a routine follow-up visit and so he went down by himself to see him. Normally I go with him if he's receiving test results or having a treatment and might not feel well enough afterwards to drive.  This time I did not go with him.

Much to our surprise the stem cell doctor told him that he needs a donor stem cell transplant while the Adcetris is still working and before his tumor becomes resistant to the drug.  This came as a complete surprise to us as we had been of the impression that the Adcetris alone had a 30% chance of giving him a cure and if not a donor stem cell transplant would be a back up plan.  The doctor said that if the Adcetris hadn't worked at all he wouldn't have even recommend a stem cell transplant.  The stem cell transplant will give him a 40-50% chance of a cure.  Needless to say, we're devastated by this turn of events.  Reid is not even sure what he'll do.  He already knows that the stem cell transplant will be hell.  He's done it before.  They practically had to kill him to in order to try and cure him.  (At least it seemed like that!)  Is it worth the extra 10-20%?  He's just not sure anymore.

He hasn't felt well for years.  This is his third round of chemo and even though the Adcetris is much milder than the past chemo it's still not a walk in the park.  Besides, prior to transplant he would have to be admitted again for the "really strong" chemo that will end up destroying his immune system.  The last time that was pretty horrible.  He developed a scab that ran through his entire intestinal track from his throat on down.  It was extremely painful...not anything like a normal sore throat and they had to hook him up to a pain pump. He wasn't able to eat.  The whole ordeal was pretty horrific. Then he developed pneumonia while his immune system was suppressed and at first didn't respond to the antibiotics.  So, we know what to expect the next time.  Reid remembers hearing that a donor stem cell transplant also means a longer recovery period.

If  he decides on the transplant Keith will have to come from Austin for a week so they can harvest his stem cells for Reid.  Then Keith will come back for the transplant and work out of a Houston office so he'll be here to help me.  They won't even consider doing a transplant unless there are caretakers.  Once again, he'll have a long hospitalization and then we'll have to live down in the Medical Center for a while.

My heart breaks for Reid.  He's been through so much already and it just doesn't seem fair.  Most people his age don't have to make life and death decisions.  It's very difficult to watch your child (and they're still your child no matter how old they get) have to endure so much. This has to be his decision.  I will not twist his arm or try talking him into it.  I've seen what he's already been through and can't be that selfish.  Whatever his decision I will support him 100%.

To be honest, I'm worn out and  hope and pray I'll have the strength and endurance to give him the support he'll need in the months ahead.  I had so hoped after losing Jim that we'd be able to get back to some sort of normalcy in the coming months, but I guess that won't be happening anytime soon.  We're going to desperately miss Jim's support this go around.  I am thankful that Jim died not knowing that Reid had relapsed.

It's been years since we've had any normal carefree days.  I think back five years or so and how we took those kind of days for granted.  It seems like once the "the bad C word" enters your life there's no going back.  Life becomes one big emotional roller coaster ride.

And I had put off having the interior slab work done on the house until the end of October when it would be cooler.  Now I might have to postpone that again and there are so many other things that need to be done around here (like new attic duct work and a new kitchen counter and sink) that I didn't want to have done until the house was level.  I sometimes think I should just sell this house "as is" and walk away.  I just don't have time to get everything done.

 For those of you who have supported us with your warm thoughts and prayers...THANK YOU!

We'll see what Reid's regular oncologist says on Tuesday.  It will be another long day down there.

A Long Day With Good News...

Yesterday Reid saw his oncologist at MD Anderson and got the results of his latest scan.  The scan had been done on the 5th, so we had been nervously awaiting the results for five days.  This scan was done to see if the Adcetris was working.

We left the house at 10:15 for his 11:15 blood draw.  The doctor's appointment was scheduled for 1:00, so there wasn't really time to go anywhere.  We plopped ourselves down in the waiting room and waited.  He didn't get called back until almost 1:45, but the Physician's Assistant came in and gave us the news right away.  His scans looked good!  The spot on his lymph node had gotten smaller and there were no new spots.  (Gosh...I didn't even think to worry about new spots.)  The liver numbers that had been elevated in his previous blood work had now returned to normal. All good news!

His appointment for the infusion was at 3:00, but they were running 1 1/2 hours behind, so we waited again.  They went ahead with the infusion at the reduced level of the drug that they used the last time.  It sounds as if this is the level they'll keep him at from now on.  The infusion takes a half hour, but they won't order the drug until he's had his vitals taken and he's in a room with the IV ready to go.  It's my understanding that the drug has to be thawed and if for some reason he can't receive the infusion they don't want to waste it.  So, we had to wait for the Adcetris to come from the pharmacy.  I don't remember what time we got out, but we stopped at Subway on the way home and picked up a sandwich for him.  He hadn't eaten all day.  I think we were home at 7:00.  It was a long day, but the news was good so we weren't complaining.

Remember the dining room that I started painting before Christmas last year?  I've been trying to get the dining room ready for the painter that I've hired.  I decided at the rate I was going I'd never get it done. The walls where the china cabinets are have been painted, so those pieces of furniture won't have to be moved and I won't have to pack up the china and glassware again.  But, I've been busy today taking down pictures, shelves, and moving smaller pieces of furniture out of the room.

I've decided that I have too much stuff.  I used to weave baskets and there are baskets all over the place.  This is the pile I took out of the dining room.  Perhaps I have too many baskets?

And too many bears?  This guy is a permanent fixture in the dining room because I have no other place to put him.  He's really a Christmas bear that I won years ago at a Hallmark store.  I just can't seem to part with him for some reason.

And Reid's cat Ashely has been enjoying all the dining room action.  He likes a bird's eye view.

Here's some more stuff that I dragged into the hallway to get it out of the way for now.  The hallway is going to be an obstacle course until the painter is done in the dining room.  You can see some of my dolls in the hallway.  I have too many of them too!

The painter is supposed to be here Friday and Saturday.  I sure hope he gets it done on time.  I'll be glad to get the room back in order.

Meanwhile, we've had a lot of rain.  After last year's drought we're not about to complain.  Everything is nice and green now.  My poor outside cats are getting tired of hanging out in the garage.  It cleared up a little and Blackie and Baby came out, but I guess they don't care for the wet ground.  They've taken refuge on the top of Reid's truck.

I always keep towels on the deck chairs for them.  As soon as it cleared up I put dry towels on the chairs, but I guess they don't realize it yet.

I've got a few more things to get out of the dining room and tomorrow I'll vacuum it so we don't get cat hair in the paint.  I'm off to bed early tonight.  I just wanted to quickly get a post up to share our good news.  Thanks again for every one's prayers.

Happy 4th of July!

Wishing everyone a safe and happy 4th of July!  

Moving along...

Reid had his second Adcetris infusion a little over a week ago.  He felt kind of yucky up until today, but now he's starting to feel better.  They did reduce the drug by 36 or 37%.  I asked the nurse, but can no longer remember if it was 36 or 37%.  That struck me as kind of odd.  Why not 35 or 40%?  Must be some kind of formula they use, but the drug was reduced because of a couple of liver numbers that had gone up.  The doctor has him scheduled for a scan on July 5th to see if the drug is working.  Reid and I were both a little concerned about him being scanned so early into this treatment.  We both would prefer to believe the drug is working for a while before he's scanned.  I'm not sure if that makes much sense to anyone that's never dealt with cancer before, but for those of us waiting for scan results it makes perfect sense.  We would prefer to delay the stress for a while longer.  Please keep Reid in your prayers.

I was thinking the other day how quickly life changes.  I had gone to Keith's in Austin for a weekend in April.  When I returned that Sunday I was only in the house a couple of hours when I took Jim to the emergency room.  I never even had a chance to tell him about the trip.  I do remember driving home that Sunday and thinking to myself what a good idea the trip had been.  Keith had some time off from work and suggested that I come to Austin for a break before Jim had another round of chemo and Reid had his biopsy.  They had all encouraged me to go.  Keith and I had such a good time and I felt so well rested.  I had absolutely no idea what was to come.

I finally took the time to look at the pictures the other day.

Keith and I visited the Lady Bird Johnson Wildflower Center.  The bluebonnets were just about shot and it rained a little, but there were no crowds and we thoroughly enjoyed ourselves.

There are trails and we enjoyed hiking.  I believe this was an underground cave along one of the trails.  It was a while ago and I know we saw a sink hole and a cave. 

Maybe this is the sink hole???

Even without a lot of wildflowers it was very scenic.  I would love to go again someday.

We also visited an overlook that weekend.  There are some cliffs and you hike up to the top and the view is wonderful, but I only know that because Keith took pictures.  I chickened out.  I was afraid of slipping and falling, so Keith took my camera and hiked to the top.

Little did we know how much our lives were about to change.  Sometimes ignorance is bliss...as the expression goes.

Thank you Keith for such a nice time.  I probably forgot to tell you.

Father's Day 2012

I was torn about what to do this Father's Day, but knew I wanted to go somewhere else.  I thought about going to Austin for the weekend to visit Keith, but Reid was scheduled to have chemo on Tuesday and I knew he wouldn't  feel up to making the trip.  Then his chemo was canceled because of an elevated liver number in his blood work and rescheduled for this Tuesday.  So, after talking it over we decided to drive to Brenham, Texas and meet Keith there for lunch.  Brenham is about half way between Austin and Houston and took us about an hour and 40 minutes to get there.  One hour of that time was spent driving across Houston!

This is Keith and Reid taking it easy in downtown Brenham.

I didn't want the day to go by unrecognized either, so I had a present for each of the kids.  I gave Troy his present on Saturday and Reid got his before we left home.  Keith got his when we met in Brenham.  They each got a framed picture of the three of them with Jim.

We ate at a placed called the Brenham Grill and we all thought it was very good.  We had a good time and we'll probably do it again one day.  The drive wasn't that bad...especially on a Sunday when traffic is lighter.

When Keith came to visit the end of May I had a special gift for him, but forgot to take a picture.  I made sure to take one in Brenham.  Keith and Troy were tested and if Reid should need another stem cell transplant Keith is a match and will be the donor.  He teases Reid about it all the time.  He's told Reid that once he has his stem cells he'll be able to read his mind and know exactly what he's thinking.  I don't believe there's any medical evidence to prove that, but the two of them have a lot of fun joking about it.  Since I'm a little nervous riding in the car with Keith I got him a bumper sticker for his car.

We do have fun sometimes in spite of everything.

And I was in a store the other day and bought myself a present.  I figured I'd better buy it myself before one of the kids saw it and bought it.

I hope everyone had a nice Father's Day.

Moving along...

I guess I'm moving along, but at a snail's pace.  I've gotten a lot accomplished, but still have lots more to do.  I hadn't paid a bill in almost 44 years.  Jim was an accountant and it just made more sense for him to do it.  I've had to set up my own system and so far it's working out OK.  I still have some big decisions to make, but I'm taking my time and not rushing into anything.  I did join a Griefshare group at a local church which has been helpful.  We're all in the same boat (so to speak) which really helps.

Reid had the Adcetris infusion and although it's not nearly as difficult as the chemo he's had in the past... it's not exactly a walk in the park either.  He's had waves of nausea, but at times he's felt OK too.  He's been able to eat which is a big change from the regular chemo.  I don't imagine he'll be loosing any weight this time.  The fatigue is a problem, but has improved a little this week.  Last week when we went to the store I had to drop him off at the door and pick him up again when we were done.  He just didn't have much energy at all.  This week that has improved a little too.  Next Tuesday he'll have the second infusion.

Keith came last Thursday and stayed until Sunday.  We had a really nice visit.  Thursday was his birthday and we all went out for dinner at an Italian restaurant.  That was his choice and it seemed appropriate for someone born in Italy 43 years ago.  How time flies.  I found it a little sad without Jim though.

We had a little rain while Keith was here and a branch broke off and got caught up in the pecan tree.

It was a bit of a problem since it was hanging above the mailbox and I was afraid it would fall down and hurt someone.  It had broken off pretty high up in the tree and fallen quite far before it got stuck.  I don't know if you can see in this picture where it kind of peeled off, but I guess the weight of the pecans had something to do with it.

Keith went out and got to work.  That thing was stuck real good.

He couldn't just yank it out, so he ended up having to saw some off before it would come down.

We lugged the biggest piece to the backyard and broke up the rest so the trash men would take it away.  If we ever need to get out the chain saw we'll cut up the piece we put in the backyard.  For now it can just stay there.  The cats enjoy using it as a scratching post anyway.

As Gilda Radner used to say, "It's always something."

I'm so glad the primary election in Texas is over.  We have something called the "Do Not Call List" in Texas, but the politicians wrote the law and excluded themselves.  I can't even begin to tell you how many robo calls we received. I lost count, but I would guess at least 30+ in the two weeks leading up to election day.  I haven't been sleeping well and one afternoon I decided to lay down for a little while and there were three calls during the hour and a half that I attempted to sleep.  I even got a robo call from the former mayor, the current mayor, the Governor...all on behalf of the candidates they were supporting.  Some didn't even respect Memorial Day.  I believe I got three calls that day.  I think the law should be amended and we should be allowed to opt out of political calls too.  Does anyone listen to recorded messages anyway?  People put themselves on the "Do Not Call List" so they don't get disturbed.  If they want my vote they need to show me that they respect the intent of the Texas "Do Not Call List" law.  I don't want robo calls from anyone.  I've even E-mailed both county political parties in past years asking them to stop, but I've never received a reply.  This year I E-mailed the mayor and asked that the calls stop, but I received no reply from him either.  It's just an attitude that says to me, "We're better than everyone else and can do as we darn well please."  This isn't a Republican or Democratic thing.  They all do it!  I think it shows a lack of respect for the voters. 

This is the only place I've ever lived where the politicians have a sign contest.  This was taken outside city hall.  Do they think the candidate with the most signs wins?  Maybe it's the candidate with the biggest sign?

I know in past years I've seen city workers taking them down the next day.  Personally, I think there should be a limit to how many signs each candidate can put up on city property and then they should have to take them down after the election.  Maybe limit the size too.  Do they do this where you live?  What about the annoying robo calls?

This is one of my pet peeves.  Thanks for letting me vent!

Update to my previous post...

Reid received a phone call from the stem cell clinic a little while ago and was told that Keith is a match.  So, if at some point he needs another stem cell transplant he would receive Keith's stem cells.  Of course, my prayer is that it never comes to this and that the Adcetris puts him into remission forever.  There are no long term studies because the drug is new, but I'm praying for forever.

The big reveal...

Before I head off to bed I thought I'd post an update.

Today was the big reveal.  Actually, when Reid checked his MD Anderson schedule online this morning he saw where he had a blood draw, doctor's appointment and an infusion for SGN-35 (Brentuximab Vedotin) listed for today.  We knew that SGN-35 (Brentuximab Vedotin) was Adcetris and that had to mean that he had been given the placebo in the trial.  Of course, when we got down there the doctor also told him.

He had the infusion and so far he's feeling fine.  In the past when he received chemo he was sometimes sick on the drive home, but Adcetris doesn't have as many side effects as other treatments.  Hopefully, that will last or at least any side effects won't be as bad as in the past.

Adcetris received accelerated approval from the FDA last summer because of promising results.  Approximately 34% of patients went into complete remission and 75% had positive results during one of the studies. I believe it's actually the first new drug for Hodgkin's since the 1970's.  It's a rare cancer with normally a high cure rate, so not much research is done. I'm grateful that Adcetris has become available at this time. My hope and prayer is that Reid goes into remission.  We're due for some good news one of these days.

He goes back now every 21 days for an infusion...just like he did for the clinical trial.  I believe there can be as many as 16 infusions, but there might be less.

No new news...

I was hoping I'd have something new to report on Reid, but I don't.

We went down to MD Anderson yesterday and saw his regular oncologist. They still didn't know whether or not Reid had been on the placebo or the actual drug in the clinical trial. His oncologist thinks he probably was not on the real drug since he had no side effects, but we still have to wait for the actual reveal before he proceeds with any treatment. So, he'll be going back down next week and hopefully we'll know something for sure by then. The doctor did say that if he hadn't been on the Adcetris they would probably start the infusion then.

Meanwhile, we're trying not to get our hopes up too much so we won't be too disappointed if he needs to have another stem cell transplant.

Keith and Troy have both had blood drawn to see if they could be potential stem cell donors. Yesterday, Reid had quite a bit of blood drawn and we're assuming that's to get his blood typed (or whatever it's called) too.

So, we really don't know anymore than we did two weeks ago.

I'm grateful that Jim didn't know any of this and was able to assume Reid was OK before he died. He was always very optimistic and although he knew Reid was scheduled for a biopsy he always assumed the best.

I also feel very positive right now. I think Reid is going to be OK. Thank you for your prayers!!




Meanwhile, I wanted to share this site with you again. I know I've posted it in the past, but it's time for an update. I've been following this live cam of Peregrine Falcons that nest on top of an office building in Jersey City, NJ for a number of years. This year three eggs have hatched. Be sure and read the Nest Box News for updates.

http://www.njfishandwildlife.com/peregrinecam/jcp-live.htm

I told the kids to watch for the Falcons when we flew in and out of Newark Airport last week. We didn't see them, but I knew they were there.

Another update...

I feel like I've made some progress.

Since last posting we've made a quick trip to New Jersey for Jim's burial. It was a very nice graveside service with military honors. We saw many relatives and friends and got to visit and share memories. We flew up last Friday and back on Sunday. Needless to say, we were a little exhausted afterwards.

I've spent the last week trying to get a lot of paperwork done. I've also spent a considerable amount of time on the telephone. There's just a lot to do. I'm trying to wade my way through Medicare since I'll be coming off Jim's work policy shortly. Lots to read and try to understand. That kind of thing was always Jim's department.

Reid and I were mistaken about his doctor's appointment. We thought he had an appointment this past Wednesday, but discovered our mistake Tuesday evening. His appointment is this coming Tuesday. Oh dear...I mistakenly made an appointment at the bank on Tuesday and now must change that one. How did we get so mixed up?

I've started writing thank you notes in between everything else. I just hope I'm able to adequately express my heartfelt appreciation to everyone.

Thank you for your prayers and support.

Life isn't fair...

...but no one ever said it would be.

We found out this morning that Reid has relapsed.  Yes, the Hodgkin's is back and my heart is breaking.  What next?

We don't know whether or not Reid was given the new Hodgkin's drug, Adcetris, in the clinical trial.  If not, that will probably be the first treatment option.  They didn't know yet since it takes a little time (paper work) to get it revealed.  Meanwhile, another transplant is also an option, but this time using donor cells.  They're going to go ahead and test Keith and Troy to see if one of them will be a match.

I just get so sad thinking about all that Reid has been through and yet 99% of the time he goes through it all smiling.  I would not be so nice.  Our goal is to get him well and that's where we are going to focus our attention.

We'll certainly be spending more time again down at MD Anderson, so the E-mail sitting in my mailbox might not get my attention anytime soon.  One of these days I will get caught up, but between clinic visits and handling the things that must get done since Jim's death it will probably take longer than I originally anticipated.

I'm also busy trying to get the house cleaned for the house sitter too.  I'll be back!

Thank you for your support and prayers.

Another Update...

I want to thank everyone for their warm thoughts and prayers.  I just don't have time right now to reply to everyone personally, but hope to catch up eventually.  Reid and I spent a good chunk of time yesterday coordinating flight plans, booking flights, reserving a car, and finding a hotel in New Jersey.  I've also made arrangements for someone to stay at the house while we're gone.

The funeral on Saturday went well and we all came away from the experience feeling good knowing how well loved and respected Jim was among friends and colleagues.  It really helped us immensely.

Reid had his core needle biopsy on Friday and had an appointment scheduled to see his doctor yesterday, but they called and said the results weren't back yet.  He's been rescheduled to see his doctor tomorrow instead.  We've had any potential surgery postponed for now.

Most of our early pictures are slides, but Troy scanned a few for the funeral.  I thought I'd share some here.  We've had a lot of fun going through the old pictures.

This is Jim picking lemons in Sicily circa 1970.  He looks like a kid!

This one was taken when we visited Capri.

This photo was taken shortly after I came back from Naples after giving birth to Troy.

We've always had so many fond memories of our Navy days in Sicily.  It was a great time in our lives. and something we spoke of often.

This photo was taken in 1976 in Virginia Beach, VA.  By then Reid had joined the family.

I'll be out of contact for a while.  There's just so much to do right now.  Jim was an accountant and he always paid the bills.  I'm wading through everything and trying to pay what's due now.  The first bill I ever paid was the funeral bill, but I think things will work out OK.  It will just take time.  Eventually, I'll be back.  Thanks again...

Thank you for your prayers...

Things are moving along, plans have been made, and the funeral will be tomorrow.

My sister arrived yesterday from North Carolina.  We still don't know when we'll be able to go to New Jersey for the burial.  Reid's core needle biopsy is today down at MD Anderson.  Based on those results he may or may not need surgery tentatively scheduled for next week.  He's trying to see if they can change the tentative surgery date to the following week so we can all go to New Jersey together.

The kids and I worked on Jim's obituary and were pleased with the final result.  You can read it here.  Meanwhile we've been going through old photographs for the funeral.  The early years were all on slides, but yesterday Troy scanned some slides so we'll have those too.  We've had fun looking at the old photos, sharing stories, and having some good times recalling the past.

Thank you for your prayers and support.

Family Update

Early this morning my husband died.  Jim had entered the hospital through the Emergency Room late Sunday afternoon.  Yesterday he was moved to Intensive Care and we had hoped the crisis would pass, but it was not to be.  It was totally unexpected. His kidneys shut down and that led to other complications.

He had worked all last week and I had even gone to Keith's in Austin for a few days.  When I returned on Sunday he was complaining about being exhausted and I thought he might be anemic from the chemo.  He also had shortness of breath, so I took him to the ER and he was admitted.

I'm thankful that he went quickly and didn't suffer.  The kids are all here now and we're going to be making funeral plans tomorrow.  He will be buried in New Jersey.  We're all kind of in shock right now.

I haven't been reading E-mails and probably will end up going in and deleting in order to catch up.  Reid will be having a core needle biopsy this Friday and possibly surgery the following week. There's a lot going on.

I'll post updates here.  Things are pretty hectic right now.