rambling…..waiting for appt. on Mon……..

[Lolam]

I have read so many articles on the WWW that I have burned all the circuits in my brain. It seems the more info I collect the more confused I get.

Is there a website that would give me the questions I should ask this specialist in case he isn’t very informative?

I understand why so often the caregiver is on this site.

I am so dreading this appt. but yet can’t wait to get this over with.

From what I have read, I guess no matter what I do this disease will still progress over the next 2 years. Then there will be no options.

I am going to the Seattle Center, 6th floor. I know that is the BMT floor so I suppose that is the reason they have me going there. I wonder if they would rush to do that as that is their specialty?

I am discouraged today…kinda of gray outside also, maybe that is why.

I still have infusions for BC every three weeks and I just cannot imagine fighting this disease too. I need alot of patience in the next three days. I overdose on this internet and it does nothing but discourage me.

I have been so optimistic these last four years fighting BC. There was always “one more thing” to try. MDS is so much more daunting.

I am concerned for all of you. If it is not one thing, it’s another!!! I am concerned about Greg’s mom…How I pray she does not have a recurrence of BC! The vicious circle of therapy related MDS is not good. I hope they find better ways to treat and cure cancer in the future.

[Suzanne]

Hang in there Lola, Sometimes things get a little simplier when you start to get specific information about your disease. It is so individual and there is a lot of informtion out there you don’t need to bother with because it won’t apply to your case.
I hear Neil has a good list of questions to ask. He is back now and I am sure he will see your post and email you his list.

[geebeebee]

Thanks so much for the kind thoughts for my Mom, Lola. I know it seems so daunting, but do your best to keep up the hope. Even though Mom is going through more trials and tribulations now, she has had encouraging success with the BMT, and we are very grateful for that.

If you need any info on what she did regarding her stem cell transplant, don’t hesitate to ask. Keep us posted on what they say at the visit.

Best of thoughts,

Greg

[shirlsgirl]

Hi Lola,

Hang in there chickee.I hope tomorrow is sunnier.You are going through so much, it’s no wonder that you are having a gray day. I hope tomorrow is brighter. Please know that you are among friends and feel free to share/vent/ramble anytime…..I sure do

Take care, Jody

[sarah]

Thinking of you Lola, hang in there!

[Terri]

Lola, Hang in there, Bob was diag Aug 03, and really has not gotten any worse, he is doing the Vidaza, Was feeling kind of low and punky, the vidaza where him out for the week he is getting it and then a few days after. Today after a good nights sleep he was up in great spirits feeling pretty good, better then I have seen in months. There are a lot of Ups and downs, BUT don’t give up hope, I keep a journal and I also put my questions in there so on the day of the doctor visit I remember what to ask him. Also its a help because I mark his wkly CBC’s in there and I can go back to any time since diagnosis and see how he is doing.

Let us know how you make out at the doctors.

[Jimbob]

Lola,
Even as you gather negative information, KEEP POSITVE. It is the best medicine. I was told that I could go for 20 years but more likely than not I probably had no more than 11 months. It has been over 2 years (one since SCT) and I AM geting better and better every day.
Docs are doing the best they can but they can and things change almost daily. Much of the information we get on survival rates is so old it is not worth the time it takes to read it.
Besides best wishes for your well being, I’ll be praying for you.
Jim

[Lolam]

Thanks everybody. I promised myself, NO MORE SURFING. Enough is enough. Nothing really new now anywise.

3 more days to wait for this crazy appt. and then I will feel GRRREAT. I think I can handle anything if it is spelled out, it is just the murky gray that drives me bananas.

I went to Riverfront park with my Grandkids today, 6,5,3 1/2, 9mos. We rode on the kiddy rides, they like gramma to go on too! So I did! It even rained on us and we just laughed it off!

How often I have to remind myself, Lola, today you are ALIVE so for heaven’s sake, REALLY LIVE!!

[Lolam]

Thanks everybody. I promised myself, NO MORE SURFING. Enough is enough. Nothing really new now anywise.

3 more days to wait for this crazy appt. and then I will feel GRRREAT. I think I can handle anything if it is spelled out, it is just the murky gray that drives me bananas.

I went to Riverfront park with my Grandkids today, 6,5,3 1/2, 9mos. We rode on the kiddy rides, they like gramma to go on too! So I did! It even rained on us and we just laughed it off!

How often I have to remind myself, Lola, today you are ALIVE so for heaven’s sake, REALLY LIVE!!

[Suzanne]

Good way for all of us to look at things Lola. I too head for granchildren when I feel a little low. My doc reminds me every once in a while when I get wound up to just enjoy my days & the fact that I am feeling really well right now!

[mommachkate]

Hi Lola, It is so nice, that you spent and enjoyed a day with your grandchilgren.Please do not loose hope. Try to reduce your stress, it can only bring on more health problem.My best wishes for your appointment and the treatment. Kate

[Kathryn]

****How often I have to remind myself, Lola, today you are ALIVE so for heaven’s sake, REALLY LIVE!!****

Oh Lola, well said. Children can be very therapeutic… they also help us to see life in a very different way and their love is so pure.

I know what you mean about the gray area. It can drive you crazy searching for info. to make it black or white. I have a daughter w/ special needs and this has been the the case w/ her.

Lola, keep focusing on the positive. Stay strong & keep the faith. I am wishing the very best for you.

Take good care,

Kathryn

[Naomi]

Hi Lola:
I know what you mean about Riverside Park. My daughter loved the carousel. She is now 38 and still loves it. For a long time she had one of the rings from it.
Enjoy the rides.
Naomi

[Author]

Posts