Hi Myra -
My father battled AML from last May until this January. I was with him every single day during his ordeal and the psychological toll was immense. He was in the hospital for 2 months straight and then I brought daddy home to live with me. I took him to all of his appointments and when he had to be readmitted to the hospital on several different occasions, I stayed with him as much as I could. I was very depressed. It broke my heart to watch what my daddy was going through. I was in a constant state of fear every time he had his blood drawn. I never let my dad know how I felt - I always put on the brave face. I had thought about going on anti-depressants, but I've always been hesitant to take medication. This disease, in my opinion, takes a huge psychological toll on the patient and the caregiver. My dad was prescribed anti-anxiety meds and took them almost daily in the hospital. When he was home with me, he didn't feel the need to take them. I'm here if you need to talk. I went through a range of emotions as caretaker and would love to help you in any way I can. I am thinking of you and your husband. Stay strong and think good thoughts. xo

Hi Myra and David,
It's impossible to answer your questions without answering from the spiritual perspective.
Both Ben and I have accepted The Lord Jesus Christ as our Saviour Ben is Jewish, he realized his true Messiah in October 2007, I Accepted Him in 1990.
The worldly perspective on Trials and tribulations is very different from ours....... In our doubts, fears and anxieties, we absolutely know, when we reach out to the one true God, that, everything will be fine, according to His will.
How do we reach out ?, By reading His word, talking to him and listening to Him. It is amazing how anxiety can strike, in the wee small hours of the morning, Only thoughts like "Wait on the Lord:be of good courage and He shall strengthen thine heart" (psalm 27:14) or.........
"He will never leave me n'or forsake me" (hebrews 13:5)
"He leadeth me beside the still water: He restoreth my soul (psalm 23)
"trust in the Lord with all thine heart and lean not unto thine own undertanding, in all thy ways acknowledge him, and He shall direct thy path" proverbs3:56) Back in Jan 2012, when Ben was diagnosed with aml, God gave Ben that verse in answer to prayer, asking God for direction.... We later realized the next verses to that were "Be not wise in thine own eyes, fear the Lord and depart from evil,It shall be health to thy navel and marrow to thy bones"That total verse gave Ben his answer, to go through with full treatment, for aml.
It is NOT how we cope with things The Lord enables Ben and I to cope with all things. We accept His will and know that we have eternal life, after our physical death.
Well you did ask how we get through!!! No we don't take anti anxiety meds or anti depression meds. We don't dwell on "what might have been" We have a new purpose to keep going it is difficult at times But we have the gift of life...what more is there!

Mira it is a trying time for you and Dave. Your whole life has changed. I look at it as, it can be a change for the better!!
Ben was in the hospital from Jan to end of March 2012, I also stayed with him 24/7 it was horrible going through it, BUT now in retrospect, it certainly was a time for spiritual growth,thank God! Dave should feel the full effect of the chemo soon, You will need to take some time for yourself ,to walk outside and take some long deep breathes,
We are here for you in prayer and in thought,
Your friends, Ben and Sandra.

Myra,

Just to let you know, everything you are feeling is exactly what most caregivers of loved ones with AML feel. It is a huge change in life. It is dramatic. It is usually overnight and blindsides you. I am an AML survivor and I watched my family, close friends and especially fiance go through the ringer so to speak. Yes, it was a time that brought us closer. Yes it was a time that was filled with joy and pain, but sometimes I think it was harder on those I love than it was on me. I made my fiance (who is a DR by the way) go to see someone. Just someone she could talk to. She did not need any meds, but it was a very good thing for her to be able to process what was weighing so heavily on her. I do not really have any advice on meds etc etc, but I know that we are all here for you in every way. Whatever helps you is - in my opinion- a benefit. We are certainly here for you and you will get the perspective from BOTH SIDES. There are many care givers and survivors on this site and we all support each other and we all support you. We already love someone like you who cares so deeply for your husband as he battles this disease which is MOST DEFINITELY battle-able!!!!! Ed

And to speak to the claustrophobia! I was on the 14th floor so the windows wouldn't open for 37 days!! I used to press my face against the glass and pretend it was fresh air. THAT first breath of fresh air was the greatest drug I have ever known! It will come!

Myra and David:

I have been sidetracked for about a week, so let me take the time now to welcome you. I don't have to tell you that this list is full of great people -- you already see that. They have given you great advice already and I will not try to repeat it.

I am 69 and a three-year, three month survivor of AML/MDS with chemo only. I am now in a wait and see mode and if it should come back we will figure out just what to do at that time. I feel my onc made the right choice for me ... I am very glad that I do not have to deal with GvHD, which seems to come with transplants 90% of the time. But I am not advising anything except that you work with your med team and go ahead and get a second opinion if you have any doubts.

Please let us know what questions you might have especially regarding side effects of the chemo. This is the major issue that you are dealing with right now if I have things straight. David will be hitting the bottom fairly soon if he has not already. There will be mouth problems and he will be neutrapenic. Please take the advice of the meds on this and don't take any chances -- mask whenver outside of his room; no visitors if at all possible except care givers (especially no children), and don't even touch anything that is questionable. You absolutely cannot be too careful. Any problems at this point will come from infections, not the chemo itself.

Please let us know how things are going. I would not worry too much about transplant decisions right now -- get the tests as advised by your oncologist, but things will become clearer as you move closer to where the decision has to be made.

We will be praying for you and looking forward to hearing more from you as you have opportunity. We are here for you -- dave

Ed and Dave,

I read your posts 3 times. The sentiment was so tangible. Those of us who have gone through the horrors of diagnosis, the trials of treatment, and the exhilaration of success have become mentors to others so quickly. We have assumed a role that we never wanted, but cherish now, since we know we are helping others. I know that I have repeated this many times, but this website has meant so much to me and I only regret that I didn't know about it in the early moments of my odyssey. But I know about it now.

Ed, your description of the claustrophobic feeling on the 14th floor of MSKCC brings back a strange emotion in me. I too looked out of those windows to the seemingly carefree bustle below, wondering whether I would ever rejoin the "living." And I have, and so will all of the wonderful people who are behind us in this race, but chugging along nevertheless, drawing nearer and nearer, even if by inches, to that wonderful finish line.

Cliff

Cliff, Sandra, Andrea, Ed, Two Boys,
Thanks so much for your responses to my posts. They are the best medicine. Dealing with my husband's anxieties as well as my own is sometimes nearly impossible. Having our lives ripped away from us is surreal. That said, we seem to be getting into some type of routine, if that is possible. His greatest fear at this point is reaching remission after he completes induction. He is keenly aware that it may not happen and that will be devastating to him. He has not had too much discomfort since the chemo began and a nurse told him that if he doesn't have side effects, that means that the chemo is not working. Right now (day 6 on chemo) he doesn't feel too sick. Now that is starting to worry him.

He is so very anxious to get back to the job that he loves so much; I question how realistic that is considering that he will definitely need a BMT. That said, however, I feel that he needs goals and with God's help we will get to the goal line. Another difficult aspect is that from his window he is able to see his alma mater's football stadium where he has season tickets. He so dearly wants to be back in those seats in the fall.

Thanks again. You have lifted my spirits like no one can. I will keep you posted as to his progress.

Myra

Hi Myra -
You are very welcome. We are here to help. I truly believe I was led to this forum - the people on here have become a second family to me and have helped and continue to help me through the darkest time in my life. As for feeling sick during chemo... My dad didn't feel the effects of chemo until about a week or 2 after the chemo. He felt fine while hooked up to the chemo itself. Don't worry if he doesn't feel sick right now - the effects will come later, but David will handle it well! Thinking and praying for you and David. xo

MYRA,

Please, do not take everything in. I was absolutely FINE until about day 10 of induction with no side effects. My induction worked and there is no way to tell or predict. If we fell into every comment it woud tear us apart. Be strong as you are, allow yourself the fears that are natural, but stay away from predicting the future. I can state personally that I DID NOT feel anything into well after my 7day infusion was finished. Everyone is different. Every case is different. sending love.

Ed

Hi Myra, I completely agree with Ed & others... I actually felt better during my induction round than I did the week before I was diagnosed! I was so sick & so full of blasts that the chemo really made me feel better, they kept warning me about how bad things were going to get but it never did & I (against the odds) got into remission. Everyone is different! In prayer, Carla

Myra:

First for the fear -- if he does not make remission after the first induction, this can be traumatic. It was to me and many others. One reason for me is that one of the rounds doctors was so pessimistic. Give me a break -- from my estimates of the people on this list, I would say that half of them needed a second induction treatment and they almost all of them got into remission with that. I did. But I had so much bad news prior to that that I was not expecting anything positive and when it came it was quite traumatic. But it should not have been. The onc should have told me not to worry about it. I don't know why they are so pessimistic. So if it happens, great. But if not, that just normal. Back to induction and he will get into remissioin after the second induction -- I ca almost assure. Very few have not made remission after the second round of induction. Usually there will be down to about 10% blasts but they need to get it down to 5% for them to declare remission. Another induction round takes care of it.

As for the psychological toll on the patient -- it is just the shock that makes you think in an abnormal way. My strangest thing was that I got this feeling that everyone had to be as sick as I was. They could not possibly all be well. They all have cancer; it just has not shown itself yet. Then I looked out the window and saw everyone -- hundreds of thousands of them out there still doing fine. And the number in the hospital might be a few hundred or so ... my logical mind soon overwhelmed my feelings and I realized how rediculous my feelings were. But those are the types of things you go through, and I expect it would be equally as strange for the care givers. Your whole world is turned upside down and your only hope is to somehow make enough sense out of it so you can start to arrange a piece of it at a time -- one day at a time -- one piece at a time.

You are doing that, and that's great. Don't expect everything to be OK in a week, but in a month or so you will fall into a routine that will at least help you keep your sanity.

They figured I was going to be there for a long time and they gave me a big room -- I think it might have been one that was set up for a VIP. I really felt privileged. That was during induciton -- which lasted quite a while for me (I would have to look it up). But when I came back for consolidation they stuck me in a smaller room, and when I came back again, an even smaller one. But after that I was begging them for the smaller room because I found out I could get around to do everything without having to get unhooked all the time, so eventually, I really thought the smaller rooms were great.

Doer your husband do computer work? If not, maybe he can take up learning the computer while in the hospital. I am not sure what would have become of me if I could not keep working. As a technical writer being in the hospital was no problem at all, except when I was seeing double or in the Unit -- but that was not the major part of the time.

Hope this helps -- dave

Myra,

That is the beauty of this website. You ask a question and you get a zillion of the most caring, thoughtful and personal answers. First, let me just say that not achieving remission on the first go around is no tragedy. I tolerated my induction therapy well until I developed a fungal pneumonia and a bacteremia that sent me to the ICU where I was delirious for a week. And then, to top it off, my induction was unsuccessful. Well, I found out then that requiring two inductions DOES NOT CHANGE your chance of cure. David should not even be thinking about not succeeding. With all of our prayers, he will, and if one prayer was missing and he has to do it again, he will succeed the second time. I was successful on round 2 and had few symptoms at all. So please tell David that not having serious symptoms IS WONDERFUL. Most symptoms are due to infections and the like and you don't want those.

We are here to support both of you through this. We all made it through, whether chemo or transplant. I got a transplant, and except for an easily treated bacterial infection during that final phase, I did okay. The most important thing for David to remember is to take lots of really deep breaths, do as much exercise in his room as possible, and walk when they let him out of his "jail cell." If he is tired, have them give him an incentive spirometer (a device they often give to post-surgical patients). That will allow him to take a lot of very deep breaths even when in bed. Shallow breathing when lying in bed is a risk factor for pneumonia. KEEP HIM BREATHING!!! Also, except when I got my conditioning for transplant, I had a very good appetite and ate 3 entrees with each meal. It was a good idea, because I still ended up losing 40 lbs at the end anyway, and at least I started from a good weight. If what I am saying just increases your anxiety, it should not. I was a 58 year old geezer and I got through it all. When it came to the things I just told you, I followed my own advice. It has now been 18 months, and although I am now 60 years old and still a geezer, I am certainly a healthy one.

Love to both of you,

Cliff

To Cliff, Dave, and all my new friends,
Thanks once again for your support and encouragement. Your responses are like oxygen for my soul. Now for a question:

1. Can you discuss the issue of fevers? Last night, his fever spiked to 102 and they immediately did two blood cultures, chest X-ray and urine sample. This am, the doctor said that it could be an infection or a rash inducted fever. Will this happen often? It was very frightening to see them on high alert.

I know that I will have many more questions as time progresses. I can't begin to thank you enough.

Myra

Hi Myra -
Fevers are normal and to be expected. When counts get low, he will more than likely get neutropenic fevers. They run cultures and do x-rays to see if there is a specific infection they can find, but many times it is because the blood counts are low. And you're right - they do run in right away once a fever starts, but that's normal, too. Better to be safe than sorry. He will probably be put on a general antibiotic since he spiked a fever. Not to worry - it's par for the course. Hang in there. Best to you and David. xo

Myra - My Dad experienced fevers throughout the induction round. He was given every antibiotic they had, I think, and a battery of tests had to be conducted to exclude things like shingles, mumps, and some bizarre infection (mylobacterium marinum) that occurs (even if rarely) in people that fish a lot or handle aquariums and such. My Dad is/does neither of these things, but he and my mom do enjoy oystering and clamming quite a bit, and did so, apparently when the leukemia was there and nobody realized it - hence the weird infection. Truly, it was like something out of an episode of House! ;)

In any event, they treated him, just to be safe, for every conceivable thing - and after much worry for us and discomfort for him, he came out of it fine and having achieved remission. I know, the stress of all of this just unreal, and the worry about what is to come can just be overwhelming - but you will get through this phase soon and marvel that it is behind you and things are looking so much more hopeful. I know, easier said than done.

My Dad has experienced a fever since he completed consolidation, too - for which he was re-admitted to the hospital. What we were told would be a two week stay (ugh) turned out to be over in just 4 days, as he recovered nicely and numbers started heading back in the right direction. They don't liken this experience to a roller-coaster for nothing!

Anyway, from what I've read-heard-seen, it is not at all uncommon that a leukemic patient experience fevers at this point. I hope that as others offer their own experience of this aspect of treatment, some of your worry will be alleviated!

All the best,
Robin