Lily,

Please don't be depressed over the roller coaster ride of blood counts. We have all been through that, There was a period of time when my white count would drop every other week. Sometimes the slightest virus infection can lower counts. I am glad that I wasn't due for a blood test during my flu, which I am not yet over. I have a feeling that the illness might have affected my counts.

Your counts will go up again. I am sure of that.

Cliff

Thank you Cliff. It is good to hear the reassurance. I had in my mind that I was on the way back to normal. Whatever that is.

You are always so kind to everyone here with your words of encouragement.

Be blessed,
lily

Hope you are feeling much better. I know the flu can knock the strongest of us over for awhile.

Lilly,

Cliff is right I had a cold last week and my counts droped. Last year I went through weekly and bi-weekly labs and neupogen shots. The needle sticks and shots stink, but I always reminded myself that I am the most monitored leukemia patient. Think of yourself as special for the extra attention. The rollef coster definately lteaches patience and how to go with the flow when you have AML. Fingers crossed for normal counts next week!

Trish

Lily: If you were getting close to normal then your counts were probably better than mine, and I have been around for well over three years. My first onc (hero) said that he had seen it before after chemo -- no total full recovery of the platelets and wbc. But out of the neutropenic range and able to live a normal life (whatever that is). My current onc seems afraid for me to do anything different -- its like she is holding her breath. But when I argued that I should come back in three months, she said that would be a no no and would not allow me back for six months. I would not worry too much about it -- hey, you have some really exciting things to live for -- like those kids crawling all over you ... you don't have time to get sidetracked worrying. Let the doctors worry; or better yet, just turn it all over to Jesus ... read Matthew 6. You will be a much happier and healthier person. Take care -- dave

Dave,

My flu has put me behind on my readings, but will read Matthew 6 tonight, so that I know to what you are referring. As always, your advice is spot on to Lily.

Trish,

UGH. So you are in the dropping WBC neupogen fun period. I had to go through that too, but then it just stopped and I didn't need all the needle sticks. The same will happen to your counts. Just another annoying thing that they left out of the "Tranplants are Fun" manual. You know Trish, in a way I am glad that we have all had glitches, for two reasons: (1) It allows us to impart our collective wisdom on others still in the early phases of their cure, and (2) A very nice oncologist/hematologist that I saw a few times, because his office was near my daughter's place (where I was staying for a while), said, "I generally find that patients that experience a few glitches along the way, do better!" That reassured me, and should reassure Lily, you, and all of the other fantastic people on this site.

Cliff

Cliff -- keep battling that flu and don't take any chances with it -- you know it can be dangerous. We really appreciate so much the advice you give on this list especially with your medical knowledge. Hate to hear you are not feeling well -- the flu can be as bad as just about anything. Take care -- dave

Dave,

You are right. I cannot shake the stuffiness and sore throat. I also had a bad conjunctivitis. That is better, the other things are not. I might have to see my internist, because my family is getting on me about being looked at. I do not want to go unless this doesn't get better.

Cliff

Cliff: I hate to sidetrack this thread, but this is important -- perhaps to all. Sooner or later all of us are going to get some bug, and because of our past (numbers or otherwise) we are probably going to have more of a problem then the normal. Please see your doctor -- what can it hurt? If it has gotten down to something bacterial she can give you some antibiotics ... you don't have to take them, but it would be nice to see what is "going around" now. Main advice -- don't jump back to life too soon -- make sure the bug is under control before you start going out and exerting yourself again. It's just not worth the risk. Take care -- dave

Lilly: i hope you are feeling better, by the time beeing. I think than the cancer experience changes our mind in terms of beeing concerned and worried for any change, normal or not. In my last blood test 3 weeks ago, I was terribly scared (and still are...) ......because wbc jumped from 4200 to 6200. OMG I thought, things going wrong again.... Of course, my doc laugh and put me on control every 3 months instead of every 2 month. I argued and battled back but he said "NO, you need to lear to live without fear. Trust me". So, what mean is that we will be always concerned and worried about any change in our health and think the worst thong we can. I been under other minor problems and visited my obgym, scared for an ovarian cancer, and it was colitis. I also visited the orthopedic due to a bak pain, scared about another type of cancer....after 2visits and until he showed my X ray, i understood it was not cancer. So.....I visit a psycologist twince a month to help me overcome my fears. And i have to say that what helps me most is my faith. Im a christian catholic, and reading the Bible every day is a must. Not only reading, but meditating it, trying to listen what God says to me, and praying with confidence and trusting my Father God.

You are all so supportive and I am so grateful. So many times my faith and sanity has been saved just by reading this post of all of your experiences. Dave, so far I am like you. In remission without transplant. The fact that you are three years out is such an inspiration. And the cell counts all over the map. My doc said I can live with this as long as we can keep the immune system out of the basement. If it means shots, then I guess it will be shots.
April 8, 2012 will be my one year anniversary. I was life flighted to OSHU in Portland Oregon. I cannot believe it has been a year. What a ride it has been.
My husband and I took a five day trip just before my lab. I enjoyed margaritas. I don't know if the alcohol and the fatigue from the trip had anything to do with it. So back to no alcohol and resting. Sure was good though. :-)
Thank you Trish, your right, I am absolutely monitered. Nothing gets by my onc. It does feel safe to be monitered so closely. I probably won't like it either when they cut me loose to every six months.
shimauta, I live with the fear also. Trying to do better. Any little ache or fatigue is scary. My leukemia showed itself in my L4 vertebrae. So a low backache, and I am so sure it is the leukemia. So I know this one. With time and prayer I think we can both start to trust again. I am going to read Mathew 6. I am a Christian as well. Raised a Methodist. Now, I just love the Lord and don't worry to much about denomination. Get up at 5:30 AM to pray and meditate. Have to say that this site and my morning prayer time has brought the most peace.
lily

Lily it really is a rollercoaster this 'ride' we go on. At first you are just holding on careful to make it safely to the end and then we begin to worry about the 'structure' and 'mechanics' of it all. I had 17months in remission and I feared relapse with every pain and blood results. My main advice is during that time I actually felt well and had a great quality of life so I wish I had 'lived life' more. I am 18 months now post transplant and it is not without issues if you have read my post so it is still a rollercoaster for me also but I am actively trying to find things that make me happy - after being sick on and off for so many years it is easy to forget about anything but your health. Take comfort that you are being monitored closely and try to leave the worrying to The Lord and your doctors. Enjoy yourself, do whatever YOU want and hopefully you will see less rise and falls on this 'ride' !

And I had the Nupogen shots for over a year - not much fun but they keep you out of trouble!

I admire you being able to meditate, I really struggle with it but I'm going to keep trying!

Nicole

Nicole,
So far I have not had a transplant. The transplant doc is watching me closly for signs of MDS. They believe the AML came from that. My labs for the last 5 years have indicated such. What I have learned most this past year is to live each day as it comes. We have no idea what to expect. none of us do. I just think those of us with cancer are much more aware of it.
What helps me most is my time of prayer and meditaion in the early morning. I meditate to quiet myself. Then I pray. I give my life to the Lord and try so hard to let it go. I pray for peace and acceptance for what is. If it is the Lords will to take me home, then so be it. I just want to be at peace with it. Until then, I will fight with all my might.
What I love most in my life is my grandchildren. Easter was an anniversary for me. On Easter, 2012, I was life flighted to Portland Or. My world changed. It has been a year today. I am so grateful for the time I have been given this past year. I spent Easter with my grandsons, 2013. What a joy. What a difference from last year.
Our journey has been hard. I don't know why some of us have to deal with AML. But I think it changes us in ways that would never have happened otherwise. I am so different now. I don't like the AML and I loathe the not knowing. But I do like what AML has done for my faith in the Lord. My quest for peace.
I too have had my share of Neupegen shots. Got to be old stuff.
I know, ones health becomes total focus. I just try not to let it become my total conversation. That is what is so wonderful about this site. We can share and it is of interest to all. LOL
I will share a pic of Easter.
It is hard to deal with sickness, Do keep trying with the meditation. It is so worth it. Once you get the hang of it, it becomes easier. I go out to our RV where it is quiet. Now when I go out there I immediatley start to calm. I like that.

Be blessed,

lily

Lily,

I have got on the same roller coaster as you, I hoped all the seats were taken but there was one reserved for me. I was on 3 weekly clinic visits but the counts showed raised GGT, ALT and AST. I'm now back to weekly visits 300 miles round trip.

I was also put on an antibiotic for a persistent cough which landed me in the ER with an adverse reaction.im hitting for 8 months post transplant on 13 April and 1 year dx on the 1 may. I'm thinking will this ever end ? Swings and roundabouts!

Love and prayers to you.

Planxty

Planxty,
Congrats on your 8 months post transplant. Your so right, there are lots of swings and roundabouts. And I too wonder if there will ever be an end to it. I now found out that chemo did a number on my bones. Osteoporosis, or rather not quite there, osteopenia. So will pull up my big girl panties and see what I can do to strengthen my bones. But, I am alive and feel pretty good most of the time.
I hope you are feeling better. It really sucks to have to sit in the emergency room.
Love and prayers to you too.
lily