Bad News Today

“So, I found out today, that my sister has been diagnosed with CML (Chronic myelogenous leukemia). Hmmmm...bad enough as I understand from researching on the internet. Two ways to treat, one being some form of pill. The other being Stem Cell Transplant or Bone Marrow if you will.

Worse news today - I previously was diagnosed with Hep B - could be the tatoo; don't know. I traveled to Nepal before the positive test and had some Hepatitis shots. Tried to donate after the trip and got a denied!

Anyway - I have had the same partner for almost 25 years, no intravenous drugs, no dangerous lifestyle if you discount the tatoo. I am unable to donate marrow for my sister...WTF???

Don't know why I posted....but you are my network here. Yes I have been imbibing.”

“I wish I had some words to make this easier for you, but all I can do is offer my prayers and good thoughts to your sister, you and your family.

I'm sure there are reasons why you aren't "allowed" to donate, knowing them may take time, but I truly believe everything happens for a reason.

Your extended family will be right along side of you, feel free to lean.”

“Man, I'm sorry, I assume there's a list they'll search for donors?

Although I'm guessing you have to wait awhile.”

“Steve - I am sorry. I apologize because I am taking this outside of my sphere and making it public so everyone has to know about this. But the one thing I pride myself in, is that whatever it takes - no matter what - I am there for my family. Unfortunately - when it comes right down to it though, I fail because I can't give the one thing, most important, that is needed. No, this isn't a pity party for me. I know it is my sister who is ill. It is just heartwrenching to know that I can't help beyond saying I am there for you. Yes, I know I need to stay positive because she needs all the positive energy and thoughts possible and she will never know this part of how I feel (for now) so I will do my best. Just difficult.
last edited: 10/05/05 12:41:10 AM”

“You have nothing to apologize for and you certainly haven't failed because you can't be a donor. When my wife went through cancer we were told to talk about it, not to get sympathy but to help understand that we weren't alone and to let others know they weren't alone as well.

Those who read this will be sending their good thoughts and prayers..it helps, believe me. This will be your sisters fight, but she wont be doing it alone. You may not be able to donate, but your support and prayers will be a great help.

I know how difficult this must be, but remember, you're not alone.”

“So tomorrow she goes in to have some bone marrow taken for further testing. All I can say is 'ouch'. Yea...I am not making sense at this point and will go to bed - and want to say thanks to all listening and especially Steve!”

“sandyann- Sending good thoughts and energy to your sister and you and your family. Hang on to your faith. Lots of support and prayers here. - Sooz”

“Sandyann, we'll support you. Love and light to you and your sister.”

“sandyann - Our prayers will be with your family also. You don't really know the reason you cannot donate blood so don't beat yourself up over it. Being there for your sister is the best thing you can do. Hang in there!”

“I'm sorry SandyAnn. I can't imagine how frustrated you must be. Steve is right though, you will be invaluable to your sister just with your support and being there. Best wishes to you both, you have my prayers.”

“Hey, as one with both hepatitis A and B antibodies in my system, I can understand your frustration about being rejected. Unfortunately for me, I know how and when I got it, something for which I can only blame myself. If something was to happen to one of my family, I would not be able to help with organ donation, like kidney, liver, or bone marrow. I am just happy that nothing like that has happened in my family.

I will be sending good thoughts your way, and your sister also. I hope the procedure goes well for your sister tomorrow/today.

You will remember me as RumiDude from the other board and as nihilist at Winterfest. It's a long story, bu I just keep forgetting my passwords to my screen names and so I just start another.

Take care”

“Sorry to hear about your sister. Cancer is a scary thing. My good friend Maggie has brain cancer. Whatever you do, do NOT believe everything you read on the internet. You probably won't find much that is positive. But that does not mean there is no hope. There are many clinical research trials going on and miracles happen every day. Just ask the many cancer survivors out there today.

I will keep both of your in my prayers.”

“Sorry to hear about the bad news. CML is serious, but more people are surviving today than ever because of new drugs like Gleevec and improved transplant outcomes.

If a transplant is determined to be the best option then matched sibling donors are the best option, if one is not found there is a list of donors from the bone marrow registry and they can arrange to find a matched donor. The last I heard, the wait could be few months so it's important to get things moving quickly.

I had an aggressive form of leukemia and had a bone marrow transplant from a matched sibling donor and 7 years later I'm still here to talk about it so it isn't a hopeless situation. It's no picnic for sure and there is complications and risks, but modern medicine has come a long way from 30 years ago when few people were cured of leukemia. Hope everything goes well for you and your sister.”

“Kilgore Trout - I do remember you from Winterfest. Thank you for sharing. It is interesting this stigma that I have attached to myself over this HBV thing. I can't give it to anyone (except through blood) and now I also can't give my organs to a family member. Nice to hear from you again. I keep thinking - it is my sister and she would probably still take my marrow even if there was a risk of catching this. But the logical person in me says there may be more complications than that.

All - thank you all for your kind words. It does help to be able to talk about it with you since I would normally talk to her but she really doesn't want to just keep talking about this with everyone.
last edited: 10/05/05 8:46:30 AM”

“Prayers to you and your family. As one who has lost 4 friends/family in the last 5 years to cancer, I know the pain and fear. But I also know 2 more people that have fought it off and are living normal lives now. Keep up the hope, and smile when your sister can see it.”

“Sandy Ann - I'm sorry to hear about your sister and the obstacle to helping her in the way that you wish to.

If I understand your note, you had some hepatitis B immunization before you tested positive. Could it be that the immunization was for Hep B? If so, then you might have tested positive via an antibody test because of the immunization. That might mean you could still donate for your sister.

BTW: There are a few of us here who have had cancer and are out there backpacking and enjoying life - so please know that people really do rebound. I had mine out in May, 2001 and the only residual efffect thus far is that I need to get blood tests every six months.”

“Good thoughts and prayers go out to you and your sister. I've never been marrow tested but if it helps to be put on a doner list put out a shout. Thats "doner" not "Donner". I don't want on that list. I hear the marrow test hurts but not as bad as being dinner.”

“sorry to hear the sad news. {{{{{{{{{{{{{{{{{{{{Sending healing vibes to your sister.}}}}}}}}}}}}}}}}}}}}}}}}}}”

“Sorry to hear about the sad news. I will send my prayers to you and your family in hopes that you can find the proper donor match.

I am on the national marrow donor list, myself. I joined when one of my sister's friends needed a donor--as an Asian American, the likelihood of finding a matching donor is much less than that of people of European descent. Part of it has to do with religious and cultural beliefs in Asian Cultures about "spirit" and blood. It took a while, but she finally did find a match (in Singapore!)--although she was too ill to actually use the donor marrow. Unfortunately for her, because of the small number of donors in the donor bank it took too long for them to find the right match.

Hopefully, you will have better luck with your sister...

I can understand how frustrating it may be for you not to donate, but hopefully, there are others out there who will match your sister' marrow type. The danger with you giving your marrow (or other organs) to a person needing a transplant probably has to do with her compromised immune system. In other words, in order for her to get another person's marrow, her own immune system essentially has to be destroyed--all good or bad marrow has to be killed off so that the new marrow can be introduced....In the meantime she would have little to no immunity to disease until the transplant takes effect....

Have faith. Stay strong and give your sister positive vibes.

One of my friends has Germ Cell Carcinoma (I guess it's what Lance Armstrong had). He would occassionally send a "letter" to his friends to keep us informed... I couldn't help myself but to laugh sometimes (he can have a very dry wit and be a bit of a curmudgeon sometimes.) He injected some extremely funny humor into his "blogs" to us-- and it really lifted our spirits (and his, too-- Laughter IS a good medicine....

Help your sister look to the future-- find ways to laugh and take time to be with her...
She knows you love her, even if you cannot give her your marrow-- just be open and give her as much moral support as possible.


((((((Hugs)))))”

“Thank you, Thank you all!

Pedxing, When I traveled to Nepal in November of 2002 I had to go through the whole Hepatitus Immunization series. After returning to the states I tried to donate blood as usual to Red Cross. They sent me a letter 'denied'. I am not sure what kind of testing they do, they just denied me forever more.

So, I am trying to find out from Kaiser, if in fact I may have tested positive due to the vaccine series I had been through. Your information is very helpful and it kinda gives me some hope. Again, Thanks.”

“Sandyann - Sending you and your sister "Health and positive thoughts". Visualize you and your sister holding each other in the overwhelming beauty and magical stillness of the winter wonderland that we stood in last New Year's eve. Imagine the power of that moment filling you and your sister with the strength you'll need in the days ahead. Don't forget to keep yourself strong for your sister. Thanks for allowing us to send you and your sister positive energy!”

“I have read this thread three times, sandyann, and I just can't think of what to say. I won't claim I can relate to what you are going through, because I can't. What I can say is that I really feel for you and your situation and wish you all the luck in the world. I would gladly get tested (as I know many have already done) if it would help.”

“Pitts - Honestly I don't know why I posted this. It wasn't in an effort to make others feel bad, sad, or urge them to run out and sign up to be donors.

I really just needed to talk about my feelings with the whole thing. I truly appreciate everybody's well wishes and kind thoughts. Normally - my sister is the one I call when things are overwhelming. Since this is happening to her, I can't really call her and say this is #&%!$ty and cry about not being able to physically help. So I resorted to my other confidantes.

ladyhiker03 - I remember one trip with her up at Mt Thielsen in Oregon. We were sitting in camp boozin it up with tequila when we heard an interesting sound that was kinda like a freight train coming toward us across the lake. When the 'freight train' arrived we discovered it was hail and we just sat there and enjoyed the whole thing.”

“Sandyann - for some people none of this on-line stuff is real. For others, including me, there is a lot of real that goes on here. People have been sharing and posting the stuff of their lives for years now, the good, the bad, the ludicrous and the backpacking! Most people are glad to be able to offer support, and when you post good news, or a trip report from a great trip - people will enjoy it all the more.

Births and deaths and near deaths have had their threads. I have definitely appreciated the support offered here.”

“Dear Sandyann, Everything happens for a reason. The chance you are a match is not guaranteed. There are alot ways you can help your sister.

My brother was just married this past weekend. I wasn't in the Wedding party. He's the last Sib to be married and the only one to be wed after my father passed away two years ago. My Mom said "Its alright I want you to walk me down the Aisle". It wasn't until I was standing there next to my Mom that I realized I had the most Important job of all. Filling my Dads shoes. I don't know why you were placed in the position your in, Just try any look for it. and be there for her.”

“Hi Sandyann.. Just wanted to let you know that I've been thinking about you.....”

“Ladyhiker03, thanks so much. I have kinda been staying away after my outburst the other night. Kind of a lot of emotions at that time.

My sister has been shutting down emotionally on everyone around her because I think she just needs to internalize what she has been told. Good news though, she talks to me, the only one she really shares with, several times a week. She has also agreed to let me go visit her for Thanksgiving so I am happy about that.

I really do appreciate everyone's, and especially you for catching my attention, kindness to me.”

“I've also been wondering about you and your sister. It is wonderful that you are there for your sister and that the relationship allows her to make use of your support in a hugely difficult time.”

“Pedxing, I have spent my time the last couple of weeks really studying up on her illness. She is taking these pills - I think someone mentioned them on this thread - called Gleevec. They cost $80 a day and approx $30k a year. Thank goodness they are covered under her insurance policy for now. They do have some bad side effects and she is experiencing some of them now.

The doctor has ruled out Bone Marrow - so even if I was a match and could donate - they aren't using that treatment.”