Phil,

I will never be able to see someone die without feeling devastated, although I know that we are all going to some day. But 10 is a bit much. I am devastated for him and his parents.

That's why we have to make the best of every day. Sounds like you are ready to do just that.

Cliff

thanks cliff, i couldnt imagine going thru that kind of pain. One thing i try and do when im in the hospital is not complain. I know theres other patients in there having a harder time than me, so, im thankful and i try and keep my mouth shut. The nurses haggle over getting me as a patient cuz they know im easy to take care of LOL. I told one of em, dont worry ill make you earn your keep LOL

What do you guys think ??

My son lives with his mom in Florida and he was just up here in August right before i was diagnosed. Im wanting to see him during his christmas break so im gonna try and fly him up. I guess im concerned about his thoughts on the issue and im sure he will go with me to Lexington when they admit me for transplant.

I can honestly say... Me being admitted and watching him walk out that door is going to tear me apart emotionally. When he went back to Florida back in August it was so hard on me and knowing that theres no "guarantees" with the transplant is going to way heavy on my mind. Im not saying i dont wanna see him thats for sure, i guess im saying its going to be tough on me emotionally and him im sure as far as him seeing me being admitted. Im gonna call and talk to hiim about it but i wanted everyones thoughts on the matter ? Am i being selfish by wanting him here ? Am i just being silly ?

Phil,

How can you even question having your son be with you when you are admitted for your transplant. If he wants to come, he should come and give you the love and support that you deserve. One of my daughters came to see me almost every day (as did my incredible sister). I couldn't see my son, because he lives in Montreal, and my other daughter was busy in med school. The support of family is like nothing else. You are not selfish to have them be with you.

Cliff

Cliff.. please dont get me wrong, if i could i would have him stay with me thru the entire process, i guess i just worry IF things dont go as planned i dont want him to have a memory of me being admitted in a hospital if that makes sense ?

Just me typing and thinking about it just about brings me to tears. Due to issues between his mother and I we have never had a chance to have a strong father son relationship and when he was here back in August was great and when i got diagnosed and i still remember like it was yesterday pulling away from the house thinking if it was going to be the last time i see my son. It was unbearable for me. I know God is going to pull me thru this, im just trying to protect him..

Phil,

Our children are smarter and more resilient than you can imagine. First of all, you will do great with your transplant and the preparation for it. It is important for our children to understand our mortality and that illness and death are inevitable for everyone. Your son needs to see, however, how you fight this disease with all of your might and SUCCEED. Seeing a father's indomitable spirit can be uplifting to a child. Our children want to know that we are brave and that we don't give up easily. That is what we have tried to teach them from the time they were babies. Now you can prove it.

I have faith in you, Phil, and God has your back.

Cliff

Phil -- Is is just your decision? If so that would be tough. If he has a say in it, then I would leave it up to him. Explain to him the whole situation and be candid and as frank as you can be with him, letting hinm know that if he chooses not to come you will not hold it against him (and of course, that should be the furtherest thing from your mind). If you give him the full scoop and he still wants to come then that is not a selfish act on your part and you can sleep easy knowing that you have done the best thing. There is a lot the two of you can learn from each other, but I would really want it to be his decision if I were in your position. -- dave

Phil -- I am praying for your stepdaughter's friend who lost her son -- what a terrible unimaginable loss. Hopefully God will give her comfort for she will probably not be able to get it from anywhere else. -- dave

Cliff & Dave i totally agree with both of you. I think in a way it would be a good learning experience for my son. Ive always been 100% honest with him since my diagnosis about the good and the bad with the disease. I asked him if he wanted to know the "truth." If something bad was too happen i didnt want him thinking "dad never told me that" He has handled everything very well, we dont get to talk much but when we do i dont harp on my illness, i ask about his school, and try and say silly stuff to make him laugh.

I guess my selfishness kicks in knowing if he does come up i dont want him to leave and that is almost torture to me. I agree i think im gonna talk to him about EVERYTHING and let him decide :)

Phil,
It is so hard with our children, I have to keep reminding myself that God's promises are true and if by some chance God calls me home early, my family are in his capable hands and he will take care of them. That being said, you are young and strong and will do fine during the transplant, but know God has your back no matter what. I think your decision to talk with your son about coming out is a good one. It is a big step you are taking on the road to healing and having your family around you is very important. Seeing you step forward and soldier on is important for your son to see, plus seeing the treatment in reality is much less scary than what our imagination can conjure up. So happy for you that things are moving forward. My Onc is also trying to get me to transplant without another consolidation round, because for me it is literally a "pain in the butt"!
Take Care,
Suzanne

Well, truth be told, I had a conversation with God last night and asked if I could just continue to raise the children he blessed me with for a much longer time. I really don't want to leave them, despite knowing that it could happen to me sick or not.
I remember at one point answering a question from my 16 y/o son. He asked, "mom, can this kill you?" I told him yes. He went to storm out of the room. I called him right back and said, don't do that to me. I could get in the car today, drive to a grocery store and be in a fatal accident, but that won't keep me from food shopping! He sat back down and said, you are right, I guess we just don't know.
Now, that may have been harsh and I cried the moment he left the room thinking about what happened, but he is ok now. We can talk about it, but we choose to just talk about everything else instead.
In terms of our children, Phil and all, I think they are wise. I am open with my two. I remember losing my dad and wishing for another day to have 'that' conversation, 'that' moment and vowed then to not let anything go unsaid.
I also cry every time they walk out of the hospital room and I am left. Sometimes, I don't realize I am crying, but for a single tear streaming from my eye.

Not sure if I helped answer the question you had, but that's my take.
Feel good. Have a great weekend.
Andrea

(Cliff, if you read this, I still cannot see your posts when I log in to the site)

Andrea,

You are an incredible mother, and that is why you cry when you think of ever leaving your children. You made me cry with your post, but then again, almost anything sad or loving does that to me these days.

I felt the same way when my children, wife, or sister VISITED me in the hospital. Every time I would see them, I would smile, and my sister, especially could get me to laugh, and yet, while they were even sitting there, I tried to imagine what they were thinking, how frightened they were for me, how much love they expressed by just taking the hour plus ride to see me (in my sister's case, working a long day with autistic school children, dropping everything to take the bus uptown to the hospital). When I saw them struggling with the gowns and masks each time, that made me cry and I had to stifle my emotions. Families are funny; you can cry for joy, but when they see you lying in that hospital bed, they think you are concealing some horrendous bit of news that you are trying to spare them.

This disease has made us all prematurely confront our own mortality. That is a very difficult thing to do, when you have been used to living an unimpeded life. Now you live a life of blood tests, bone marrow biopsies, taking medications at prescribed times, intense anxiety about getting a cold or GVHD or being in a room where someone is patting his/her nose with a tissue and thinking, "get me out of here!" It is not a normal existence, but, and I am sure those of us who are lucky to have gotten our bone marrows or chemotherapy and now feel reasonably well can agree on one thing, "it gets better." I was always taken with that 3 letter phrase that many young gay teens use as a hopeful mantra these days. It has so much meaning and applies to everyone who is living in fear, everyone who feels different, everyone who aches to hold someone tight when they know that they cannot in the reality of the moment. But things will get better for all of us.

So, if we have people that we love...it is OK, in fact GOOD to feel like crying, because sharing love and respect and a longing to be with family and friends is a cardinal human emotion that I find incredibly beautiful.

A shout out to Phil, Andrea, Suzanne, Trish...and of course everyone else who is at the point where he or she can push back the Lazy-boy into a comfortable reclining position, instead of sitting bolt upright. You know what I mean.

Love,

Cliff

I guess it was Shakespeare or someone of equal status who said that "parting is such sweet sorrow." It is an ironic fact that the more we are blessed the more we hurt when those blessings are taken from us. I lost my mother when I was 17 and my father, who never recovered from that, was gone about a decade later. I am not immune to grief. But the person that I feel sorry for the most is the one who will never have that opportunity because s/he was never blessed with the gift of true love. Let us keep things in perspective. Let us cry when they leave and enjoy that cry -- because it is not just a cry of sorrow -- it is a cry of joy for knowing that they are there and that there is hope that we will have the joy of seeing them again. -- dave

VERY well said Dave ..

I woke up this morn feeling kinda crappy :(. I had my wife look in my throat and she said it had a green tint to it. I quit taking the diflucin and doing the mouth rinses after i got out of the hospital since they flooded me with antibiotics, but, i guess this thrush is not wanting to give up. Im gonna start back on the rinses and pills again and have my Onc look at me on monday. I figured my numbers wohld be up enough to take care of it, i guess not. Urghhh