Trying to Cope
February 17, 2005 at 9:13 pm #4191
I’m sorry I haven’t posted here or written to those of you who sent personal messages. I want you each to know it means so much to both of us. I’ve been frantically trying to talk to various drs. and medical research centers trying to come up with anything. I’m sure you also know I would have posted in a minute if we had good news. Mostly it has been going in circles chasing my tail.
THe Dr. is getting very impatient with us trying to decide what to do but it is pretty darn hard when you have no choices. That plus the fact we get different info each time we talk. We had pretty much decided to try Mylotarg and then I clicked on the leukemia site and found such horrible tales resulting from the use of it we both kind of just sat and stared at the wall a bit.
We could go to Anderson, Dr. Estey has been wonderful in trying to help, and try a phase 1 trial of what they don’t even know; but we would have to go there for a month and our Dr. here commented that might be all the time he has.
If there is one thing I have found out and I would suggest to all of you is this. We got weekly CBC’s nothing else. I think it was Terri who said their Dr. does a smear. I didn’t really understand this. If you are trying to keep check on your disease they can do a smear and a cytometry flow which will catch any bad cell far far earlier than just the CBC. I can’t understand why they haven’t done this here. It might not help us now, when there isn’t anything to do, but in some cases time could be critical, especially if you were MDS and worried about transforming. If they had done this when Ron first had the MDS and before he transformed it could have made a tremendous difference. They do it with the same blood test so it’s not like some big deal. So frustrating.
I guess our big question for tomorrow will be: He feels pretty good now, are we burning any bridges just letting him enjoy this time when there doesn’t seem to be anything that will really help and all have bad side effects. We understand that his counts are zip and even with the antibiotics he could get an infection at any minute. But giving any of the meds his counts are still going to be zip plus the other miseries of the drug.
There is so little hope of anything in Houston, Dr. says less than 5-10%, with no one knowing what it will do to him I just can’t think that is the best route especially when Ron wants to be with his family and in his own home as long as possible. Our Dr. here first jumped on it and said go but then mentioned about the month and knew it would be hard to be down there so far from home.
So I guess you can see why I haven’t written, pretty grim. I just can’t help but get hysterical occasionally when I let myself think but I can’t do that when Ron is like he is. Have no idea how he does it. Insists that there will be no gloom and doom and we will enjoy what time we have and not waste any of it on tears. Yeah, right. So, we are going along right now at home with him sipping a little Black Jack now and then, planning a Scrabble and Trivial Pursuit Tournament for the kids and friends this Sunday, if we can get them all well at one time, with all the colds and stuff going around. So we will have some fun and if next week they say he needs to get on something we’ll deal with it then. His mom has a hard time getting around, due to arthritis, so he went to spend some time with her today while he can. To look at him you would still think he was perfectly healthy, a little short of breath but looks good, which is wonderful, but also makes it so unreal. Enough
Thanks for being there, letting me unload. We think of all of you often and send our best wishes.
BarbraFebruary 17, 2005 at 10:26 pm #4192
Barb, I am so glad to hear from You even though the news is somewhat dismal, I wish I had some magical words or could wave a magic wand over you and Ron. Just know we are here.February 18, 2005 at 12:00 am #4193
Hi Barbra, reading your post I can put myself in your shoes, if you know what I mean. Darned if you do, darned if you don’t. It’s a tough situation, to say the least. With mom, she was sure she didn’t want any treatment, the dr told her nothing would cure her and that side effects could in fact make what time she had left far more worse. She chose to enjoy each day as best she could. It really is such a personal decision, some of us would try anything and others nothing. I too wish I had one of those magic wands — No one knows what tomorrow will bring – live for today. Your hearts (and your gut) will tell you what to do — you’ll know.
All the best to you and Ron.
DonnaFebruary 18, 2005 at 12:59 am #4194
nothing about this disease is easy – including decisions that have to be made
know that we are all praying for you and ron
eveFebruary 18, 2005 at 1:41 am #4195
Have read your message over and over. Don’t know what to say. There are times when the words just don’t come.
Do know that Ron and you are in our thoughts and prayers.February 18, 2005 at 3:10 am #4196
Sad About DadMember
I am so sorry. I can’t think of anything to say.
I know that whatever I say will not make you feel any better.
The pain of watching someone you love go through something like this is just so awful.
I am praying for you and your beloved.February 18, 2005 at 3:57 am #4197
Barb and Ron,
I have been anxiously awaiting news. You have been on my thoughts and in my prayers. We have been close enough to where you are to feel your frustration and your pain. Troy’s motto has been “We will win!” We have agreed that “winning” may come to mean meeting the disease on our own terms. You are both fighters! You have fought this thing with everything you have and you still will! I know there are tough decisions to make. You will make the right decision for you! Don’t look back, don’t second guess! Give the monster all you have to give. I believe that you will win! CathyFebruary 18, 2005 at 4:14 am #4198
Barbra, know that you and Ron are in our thoughts and prayers.
SarahFebruary 18, 2005 at 5:00 am #4199
Barbra, we’re all hoping and praying for the best.
GregFebruary 18, 2005 at 5:09 am #4200
Bill and MaryMember
Nothing we say can make the dilema easier and words are so inadequate. However, you and Ron are in our thoughts and prayers. Have a great family get-together and forget this d— disease for awhile.
BillFebruary 18, 2005 at 5:13 am #4201
Dear Barbra and Ron,
I cannot find the words…I’m so sorry.
Hoping and praying for a miracle.
Thinking of you both, JodyFebruary 18, 2005 at 5:42 am #4202
Barbara, It’s so hard to know what to do especially since as you say Ron looks healthy. You have to do what you feel in your hearts. Know that you are in our thoughts and prayers.
KathyFebruary 18, 2005 at 1:49 pm #4203
Thinking about you today and hoping that whatever decision you make brings you both some peace. Being stuck in limbo not sure of what you want to do has got to be very difficult. Remember-“there is no right answer”-one reason Dr’s are saying different things- and do what feels best to you both.February 18, 2005 at 2:23 pm #4204
I’m thinking about you. Take care,
CarrieFebruary 20, 2005 at 1:28 am #4205
You and Ron are in my thoughts and prayers.. Pat
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