Lindzee, I understand exactly where your mind is at. When our backs are up against the wall sometimes it seems we just cant catch a break. We start off on this juncture in life after hearing a diagnosis of AML and reguardless of what we hear or read we still have hope but when we have complication after complication things start to seem hopeless and fear and hopelessness start to rear its ugly head. Try to stay positve comeing on here and expressing how you feel and what is going on will do wonders for your psyche, this place is full of wonderful loving and careing people. AML is a complex disease, it can go from bad to good ........and good to bad overnight. Have trust in your doctors... feavers could come from anything from neutrpinia to infections, its hard to say, if your husband cant get out of bed, ask the doctor if it is allright to move his legs and arms ( laying down and not moveing around can bring other complications ). We are here for you and have been there or are where you are at now....You are not alone....Sending Praayers and Love....Billy and Tina

I totally get it. You guys have been through the ringer - so glad that you came to this board to get support and to talk it out. One thing can lead to another and it can be so overwhelming. When it gets this bad (and it has gotten this bad for lots of people on this board, including myself), the best thing to do is to concentrate on just getting through it and surviving. Don't think about days or weeks, just concentrate on getting through the next hour. I did this a lot, sometimes it was just getting through the next five or ten minutes.

The weird dreams are totally normal - they will pass but you can talk to your doctor about switching pain meds if need be. I was on hydromorphone which made me have the most terrible nightmares and I was switched to oxycotin. Your husband sounds like he is in good hands - have faith. And don't worry about the counts - sounds normal to me at this point. Everyone's experience is unique and different - no need for fear.

We are here for you - please ask us anything :)

Love and light to you. - Julia

Hi Lindzee
You have been through a lot and I can understand how you feel.Things can turn so quickly with AML so just concentrate on getting through the day. Dont worry so much about his blood counts, they will recover, they just need time. Infections and fevers are very common. Try and control his environment. Limit his visitors and make sure you follow a strict low bacteria diet.
Look after yourself as well. I was 47 when diagnosed and my husband was constantly by my side for the first month. After that I made him return to work and made sure he continued to go to the gym and resume his routine.Its important that as a caregiver you look after yourself.The journey to recovery for AML patients is a long one and our caregivers need to conserve their energy and remain physically and mentally strong.
There is hope and many of us on this site are living,breathing proof of this.

Lisa

Lindzee -- we are concerned and praying for you. I had about three points in my ordeal where I felt there was absolutely no hope and panic sort of took me over. I resolved to just throw it on the Lord and take it one day at a time, and that got me through it. I know things are tough, but when the body has been put in a neutropenic situation it cannot fight off the bugs that the normal person handles every day -- hundered, perhaps thousands of them. Things like lung infections are common -- I had them. I also had infections of no known source, which can be worse since they do not know quite how to deal with them. There is not much that you or your husband can do at this point except to be patient and try to get through it.

I also did not get into remission on my first round and can remember it vividly -- it was really catastrophic -- but it should not have been -- I would guess only about 30-40% of those on this list made it to remission after their first induction round. I do not know why the med folks give such optimistic hopes -- they ought to just say "you probably will not make it -- that's OK, most people require a second induction round." I was kind of aggravated at the rounds onc who acted like it was the end of the world when in fact it was not.

As for the nightmares -- I got them just from Tylenol, but they are common from any pain killer. I tried to get off them, although I accepted the Tylenol -- in that case it was worth it. Not sure what to advise here except that if the pain is not that bad to back off the pain killers as much as possible. My kids told me about the really nutty things I would say ... some of them we laughed at afterwards, but while it is going on it is really not a laughing matter. But again, this is common.

I hope this helps -- but it will not help as much as prayer, and I am sure that all who read this are praying for you at this point -- dave

Lindzee,
I was 48 at diagnosis a bit more than a year ago. Low counts, no fears, completely normal at this juncture and although it still causes me angst, I know they recover. I still get treatments and here I am 4 weeks later after a chemo treatment with no white cells and I am neutropenic -it comes back.
Infections, fevers, nightmares. Ah, how I wish you could read the stories my husband wrote. Apparently at one point, I was being taken for a CT of the brain for a change in mental status , I had gotten that bad. Cloth mice running in my room, i held a meeting with my staff and apparently accused people of putting tuna fish in the petty cash drawer.I freaked out, they abandoned the scan and it was all attributed to medication. I was on a vent for 10-12 days for lung issues (acute respiratory distress syndrome).
I am pulling for you. I know that this is hard on you. My husband had a very hard time witnessing everything. I have little to no recollection.I don't remember my husband being there many times either, but he was there constantly. i think the pain meds help us cope mentally. My fevers were worse every night. I hated dark, it brought pain and discomfort.
I do remember saying, God, I cannot do this, you have to handle this for me. I said that and I was not very spiritual before this experience (somewhat, just not overly religious). I would envision the footprints in the sand saying and photo and begged God to carry me through. What I believe.
"Let us pour out our whole soul to God in prayer. God is captivated by our prayers and will come to our aid." All prayer is good when they are accompanied by good intentions and good will.Prayer is the key to God's heart.
My vision was very poor. I was unable to read for a long time. I also hemorrhaged in my eye, so I had a lack(red actually) hole. Perhaps the scariest thing i experienced, but slowly vision returned. Worse was no access to computer or phone (my addictions). I could not watch TV, so I began listening to music. I was not focused enough to listen to books on tape and my mind raced anyway.
I am so sorry this is happening to you and your husband. I am praying. Please hang in there. One minute at a time, then 5 minutes, you will get to the hour and then a day.
Be blessed -Peace, love and hope,
Andrea

I feel so sorry for everything all of you have been through and I am also sorry for meeting under these circumstances, but find comfort in hearing similiar experiences. Makes me feel like what he is going through is not uncommon and that while scary people do get through this. Thank you for taking the time to share your experiences they help more than I can say. Sending good thoughts and prayers to all.

Lindzee,

As everyone has said, the road to recovery is generally quite rutted. I was septic during my first induction, ending up with a fungal pneumonia, bacteremia and a stint in the ICU. And, to add insult to injury, I failed my first induction. Failing the first time does not influence one's chance of getting into remission the second time. I was lucky that I did not develop any transient eye symptoms, although they are common. I did get daily migraine auras without the headaches. I also had plenty of weird dreams, especially when I was very ill during the first induction. In fact, I was frankly delirious. I called my wife at 4 AM one night to tell her to take me home, because "they are trying to kill me."

You have to look at the big picture. Your husband will prevail. Just hang tough. Things will improve steadily. Have trust in your doctors and in God's hand.

Cliff

Better day today. The doctor says his lungs sound better today, they will be performing two tests tomorrow to try to pinpoint the exact type of infection and with adjust his antibiotics as needed. Finally some movement with his white count. He has been steady at .02 today he's at .8. I know that's not much, but just seeing different number is encouraging.

Thank you all so much for your shared experiences , advice and support. You all have been a blessing to me and my husband.

I am so glad to know that things are looking brighter today! The emotional upheaval of AML is just so exhausting, isn't it? It is enormously stressful to swing so wildly from the feeling that things are looking so dire to feeling instead that the outlook might instead be a good one. Will be thinking of you and your husband, Lindzee!

Robin

Lindzee,

So great to hear things are getting better. An anc jump to .8 is great!!! Embrace all positive news!!!

Blessings,

Julie

Lindsey!

The ANC has improved 40 fold. That is substantial. Once the numbers start to rise, the increase ccontinues. Lets keep this rally going!

Cliff

Lindzee -- keep the faith -- things are improving and when those numbers get back up all of the other things will take care of themselves. Hang in there -- dave

Lindzee..... dont panic. Fever and infections are usual, normal, expected after chemo when the patient gets neutropenic. But as my doctor said, the lower the white cells go down, the better since leucemic cells can be killed. Take a deep breath when fever and infection comes, and remember:1) your husband is very young for this desease and it is a big plus on his side and 2) Leukemia can be cured ! other cancers cant.

I became septic with a complication in my colon while having my first induction round. While septic, I had allucinations, I felt I was in different places and talked nonsense. And got deeply deppresed. But once I felt starting better, my mood changed for better too.

Im a strong catholic beleiver, and my faith was the best chemo I could find. I always encourage those going through this to hold to their spiritual beleif.

Please keep us informed and dont panic. Sounds terrible, but we can beat it.

Love

Ana

Thank you all for continued support and encouragment, it has helped me get through some pretty dark moments and kept me from sliding further into panic and fear. We are still working on getting his lung infection resolved; however, he is eating well, walking several times a day, and had a fever free night. We will take every positive and run with it . White count is at 1.0 today. So still climbing. I don't post often yet on others posts because as such a newbe to all this I don't feel I can be of much help yet, but my goal in the future is to pay it forward and be as much help to others as you all have been to me.

Hi, Lindzee. I am a little late to this discussion, but I read through it all, and I am very glad things are looking up! Counts going up (but isn't it awful that they always take so long!?). I just wanted to agree with all those who have commented on the dreams and hallucinations. They are often connected to pain killers, especially any that are opium-derived, but there is also a drug called voriconazol, an anti-fungal med, that is quite notorious for producing hallucinations and nightmares, especially in the IV form. It is a little less potent in pill form. I don't know whether your husband is taking it, but if he is and could be switched from IV to oral, things might get better. (I had a fungal infection when I was admitted for diagnosis, and I believe I have to take this drug for the rest of my life.) But it also helps to switch pain killers if you need to.
That new white count is terrific! 1.0 really means he is on the way, and once it starts to rise, my experience is that it goes more quickly toward the goal.
I really, really understand those "bad" days and moments of hopelessness. Unlike so many on this list, I am not a religious person, so I can't as easily call on God to help. I need to find other sources of hope and support, and other people, especially those on this board and in my treatment team, are very helpful. I just went today to the first AML "survivors" group run at my hospital, and if you have access to something like that, I encourage you to attend. There was an equal amount of attention to patients and caretakers, and it was a very useful and interesting discussion among people ranging from the currently hospitalized, the "waiting for transplant"(me), and two long-term survivors, one at plus 14 years! It was great just to be in the room with her!
I wish you both the best, and while I am sure there will be rough days ahead, it sounds like your husband is getting better every day.

Shoshone