Tuesday, August 28, 2012

Moving On Along...

I meant to get a blog post up sooner, but I had to think about what to write.

Last Tuesday Reid had his appointment with his regular oncologist.  When the nurse came in he told her about seeing the stem cell doctor the week before, but she didn't seem to know anything about it.  Then she told him that she had pulled everything up and his doctor was reading it before he came in to talk with him.

The doctor came in and Reid explained to him what was going on and how he had no idea a stem cell transplant was planned for after the Adcetris treatment.  We were both under the impression that the Adcetris would be tried first and if that failed the back up plan would be another stem cell transplant.  I don't believe the doctor had spoken with the stem cell doctor, but he explained that the drug is so new that there's no one accepted treatment plan like there was when he relapsed the first time.  An auto stem cell transplant with ICE chemo first is pretty well accepted as the way to go with the first relapse.  Now we're kind of in uncharted territory with a new drug with the second relapse.  There are different opinions as to the best way to go.

His doctor said that if he felt very motivated about having a stem cell transplant then he should go through with it.  If not, he said he would do what Reid is doing and stay on the drug and see what happens.  There's no right or wrong way to go.  For now he can just think about it.  When I mentioned that the stem cell doctor said he wouldn't recommend another stem cell transplant if he relapsed again, this doctor gave us the impression that it wouldn't be a problem.  He also said if he relapsed he could go back on the Adcetris again and that there were other drugs to try.

To be honest, I don't know what to think.  I've been in a funk for the last two weeks.  In the past everyone was in complete agreement.  This whole thing is unsettling.  I did a google search and found a blog where the gal had just had a stem cell transplant after being treated with Adcetris, but I don't know all of the circumstances.  I've learned over the years not to dig too deep for information since it can be worrisome.  Not everything you read on the Internet is up to date or necessarily accurate.  It can drive you crazy sometimes.

Reid seems to feel a little better now after speaking with his regular oncologist.  He had his treatment and hasn't seemed as sick this time.  The plan now calls for another scan after his next treatment in two weeks.  Needless to say, that will be another stressful period.  I'm trying to think positive and pray that the Adcetris continues to work.

After all we've been through Keith decided it would be a good time to come for a visit.  He drove over from Austin early Saturday morning and left for home Sunday afternoon.  We had a really good time in a little over 24 hours.  We ate, shopped, played a game, and Keith got some things done around here for me.  We went to Walmart and bought a table and bench for this room.  The old table was falling apart and the one leaf was collapsing from the weight of the sewing machine.  Keith put the new table together and we dragged the old one out into the garage.  Then he hung another plate rack in the dining room for me.  So, in a little time we got a lot accomplished.

I wanted to take a picture of Keith and Reid together, but Reid got tired and was sleeping when Keith was ready to leave.  So, I asked Keith to pose for a picture in the backyard this time.  I always take pictures of him by the car as he's leaving.  This is Keith posing by my mobile garden.  We've had tomatoes and jalapenos this year.
Today I told Reid I had to take a picture of him before I wrote this post.  So, here's Reid cleaning up after dinner.

Usually he doesn't start bouncing back until ten days or so after the treatment, but this time he seems to be doing better.  This chemo is still so much easier than the chemos he's had in the past.

Thanks again for your comments, E-mails, and prayers!

Saturday, August 18, 2012

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.