Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
My cell counts have been coming up, ever so slow for the past 2 months. I even reached the low end of normal. My lab was moved to every other week and doc appointments to every three months. I have been thrilled and feeling all back to normal.
Last Thursday lab showed that I lost ground and am back to where I was two months ago. At least I didn't have to have a neupegen shot. But I am back on labs every week.
After a few days of crying I am back on track and starting over.
I know others have been through similar and much worse disappointments..
I am starting this thread to ask those who want to share how they have found peace through it all.
many blessing to you all,
lily
Last Thursday lab showed that I lost ground and am back to where I was two months ago. At least I didn't have to have a neupegen shot. But I am back on labs every week.
After a few days of crying I am back on track and starting over.
I know others have been through similar and much worse disappointments..
I am starting this thread to ask those who want to share how they have found peace through it all.
many blessing to you all,
lily
I guess what I have learned in my 16 months of wonderful remission life was that there is always a positive which feels even better. I might be here for another 25 days, but that first night in my own bed will feel sooooooooo good.
Lily was not this Easter the greatest and sweetest one ever for you?
Planxty when you get home from the 300 mile weekly trip do you not feel sooo good it is over for a week?
I guess as I am headed to transplant, if I live through it, this will be a permanent part of my life and my perspective will be focused on the ''ahhhhhh moment' and not the "oh no" moments that we all have both!
Ed
I loved having a room to myself, where I could talk to my wife, sister, and children without being overheard. Where I could speak to the psychiatrist and cry without feeling like even more of a wimp. I did not like not being able to walk the halls. That was the most fun of all. I was not allowed on the 15th floor, probably because of my VRE.
I am sorry about the rhinovirus. It is annoying to get those those things when you are in the hospital. I had migraine auras every single day, although not always headaches to follow and I had a lot of flashing lights in my line of vision. All that has gone away and your headaches will as well. I know how you feel when your HGB gets down to 7 (their cut-off for transfusion). First of all, it is a good test of your heart! But you feel so tired. Don't let it stop you from at least walking around your room. Use that step thing that PT brings. Do NOT let yourself get out of condition. It takes forever to get it back under the best of circumstances.
I see you have settled on Family Feud. I was addicted to Animal Planet. Same emotion...nothing to do and cooped up like a prisoner. Considering that I got up at 6 (latest) every day and never went to bed before 12 midnight, I am surprised that I didn't go out of my mind with 18 hours of time to fill.
Just picture this....my wife is going to dinner with some former colleagues and I and my eldest daughter are going to go OUT for sushi. No, I won't be eating the raw fish that I crave, but I will have vegetable rolls, dumplings, and cooked things. You too will return to your previous life. It's a slow process, but it happens.
One last thing....a phrase like "I guess I am headed to transplant, if I live through it" is unacceptable, especially to Team Transplant 2013 who will get on your case if you ever utter such words again. And if you think that Andrea, Trish, Ben, Phil, Suzanne and others (ugh, chemo brain!!) are pushovers, guess again. Get ready to be pinned to the mat. And no, while the transplant will be all-consuming for a while, it will not be "a permanent part of your life," at least not a significant part. As time goes by, the prominence of this experience will fade. Just look at my friend Dave Chung, a 15 year survivor (he too got his marrow from his sister), who is an old geezer like me and just moved to Hawaii. I am sure he is "hanging ten" even as we speak and riding the waves instead of being drowned by them. Love you man.
Cliff
Guilty as charged. I strike those iffy comments from the record. WHEN I get out and WHEN i begin my life again is now and forever my mantra.
Ed
I was always in a private room, standard practice for Neutropenic and transplant patients here. Didn't mind the privacy either especially when my kids were visiting. I too got into the TV game shows, never had much time to watch them before!
Nicole
Yes, Easter was very special for me this year.
You hang in there. And you will get through this and live many healthy years.
lily
You are absolutely right. Unfortunately, Eddie will only live to be 120. He will just have to accept that like a man.
Eddie, that is what I wish for you and everyone on this site. We all need to live forever.
Cliff
Thinking of you today.
Lily
Less glad about the other stuff.
And yes, you WILL be fine and will have a new birthday. No ifs.
Family Feud isn't bad for isolation fun. I saw full seasons of Survivor, then several seasons of the Amazing Race. Mindless fun...
Now I can't get near the Amazing Race (although I still love Survivor).
Where I was hospitalized here in Israel, all rooms are single rooms. Which was great (you know, in a chemo, AML kind of way...).
Happy, healthy thoughts,
Abby
I know it has been rough, but your spirit will get you through the worst. Perhaps you would feel better if you stopped watching Family Feud and switched to Animal Planet. I am telling you, I am now an expert on the mating habits of black bears. It's kind of hilarious, because the males start walking like cowboys or like John Waynes. Just during the mating season. Hope you get a chance to watch that episode. LOL. Just kidding. I am a bird lover (seriously), especially when I read a bunch of papers tracing them to the bird-hipped dinosaurs. When I was a kid, I knew everything there was to know about dinosaurs (I wonder if I have Asperger's!!!!). Now it's birds. Whatever. Just a little comic relief. Nothing that you are experiencing is funny. Remember that if there is ANYTHING you need, please let me know and I will bring it next week when I come to the hospital.
Cliff
lily