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.






9 comments:

  1. Oh Betty, I'm so sorry!!!! You all have been through enough....I've cried as I read your post. This is a decision a person should never have to make, and especially at a young age like Reid.
    I will pray for Reid, on his making this decision . Prayers for the wisdom/knowledge of his doctors in treating him.
    I wish I could give you a big hug, I know your cup runneth over.
    Love and prayers....

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  2. Betty, I'm glad you were able to tell us how you feel and how your son feels. I feel the pain and anguish you are going through and because I lost some to "c" as well, though the wounds are deep and open and make us tired, WE cannot give up when there is hope!...:)JP

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  3. Betty, I could feel your pain just reading your words! I'm so sorry to hear about Reid and everything he and your family have been through. I'll pray for you and your family and hope that some sort of normalcy returns to your lives very soon.
    You are in my thoughts and prayers,
    Loretta

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  4. Hi, Betty, I think you should just sell the house "as-is", too, although it always looks really nice in your photos. I just wish you didn't have that darn house to worry about, too. Thank God for Keith and that he can work out of the Houston office for awhile, that is awesome. I was hoping you would have some smooth sailing after all of these years, too. I know you must miss Jim so much.

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  5. Oh my dear Betty, You are having to deal with so many things none of us wish to go thru. Your husband and your son. CANCER DOES SUCK! And that has to be a tough decision for him to made. I am just mad at cancer and I feel so darn frustrated - I wish there was more I could do - but I PROMISE to pray. sandie

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  6. I had feared that you were going to tell us some bad news since it had been awhile since you last posted. I hate everything you and your family is going through right now. I feel so bad for Reid because I know he feels like he has the weight of the world on his shoulders. That isn't an easy decision to make and it doesn't make it any easier to make when he knows the hell he will go through doing the stem cell transplant. I will be praying for you and Reid.

    ((((Hugs))))
    Angela

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  7. Oh Betty.

    Betty.

    I am beyond sorry to read this.

    I don't even have any words.

    You are an amazing person. Reid is an amazing person.

    This is so beyond not fair that I am both teared up and angry.

    Can I help in any way?

    Cards for Reid?

    Anything at all.

    Betty.

    You are all in my prayers and will remain there.

    Peace, calm, hope and hugs.

    And try to inhale. Just a little bit.

    Okay?

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  8. (((((<3))))))
    I am so sorry.
    Wish I had a majik wand.
    There is so much cancer surrounding me now. I want ot all to go away. Love you guys.

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  9. Dearest Betty, Reid and Keith; I am so very sorry to read this post. As you can see, I'm rather behind on blogs. My father in law passed away on Aug 10, and we went for his funeral on Aug 25. I will keep you all in my prayers. I will pray for God's comfort and strength in this awful trial. Please give Reid a big hug. Lots of love from Loretta, your CC friend in Canada xoxoxo

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