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.
Hi, Myra
Our family is just a few weeks further into this ordeal than yours is, so mine is definitely NOT the voice of much experience here! I know how overwhelmed you must be feeling now though, and wanted to let you know that I am thinking of you and your husband, and hope that the worry of all of this will become a little lighter as treatment proceeds and you see your husband making progress!
My mom is Dads (67 years old, dx with AML, both induction and consolidation behind him, awaiting transplant) principal caregiver in this situation; she is holding up pretty well, though, and I thought Id share a little of what seems to be helping her. One of the things that she does on a regular basis is to journal a bit about whats going with my dads situation on the caringbridge site. This has been a surprisingly helpful thing for her to do both from a practical point of view and an emotional one: she has been able to keep track of whats going on with treatment, and share updates with friends and family who are concerned and interested in whats happening, but probably dont want to intrude with lots of questions about the details of all that is going on. In terms of the emotional or psychological benefits, it has been so wonderful to have heard from so many friends their love, prayers, well wishes, and concern have helped all of us to feel less alone in our worry about the leukemia and issues associated with treatment. The caringbridge site includes a virtual guestbook she and my Dad (when he is up to it!) check in on a daily basis, which has really lifted their spirits.
Another thing that they do is play games together whether they are in the hospital or at home, so long as he has the energy, they like to enjoy a game or two of scrabble. This is something they did all the time before AML, too, so I think it has helped a lot that theyve been able to continue to enjoy it in the midst of all of these new troubles. Maybe there is a similar activity that you and your husband might enjoy together?
We are fortunate that our family lives so near to the hospital here in Boston it probably gives my mom some relief to leave for dinner each evening and enjoy a visit with the grandkids (she is not sleeping at the hospital, but is staying with us when my Dad is here for treatment). If you are staying at the hospital, I am not surprised if the stress you are feeling isnt even just a bit more intense and persistent. I do hope that you are able to get breaks from time to time my mom will sometimes leave the hospital for a bit (especially if Dad is napping), and see a movie! Another thing that we did as a family was to cover a bulletin board with family photos and pictures of places that are special to us as impressed as we all are with Brigham & Womens Hospital here in Boston, it is still a sterile hospital room, after all, so it seems to have helped both Mom and Dad to have pictures of people and places they love most to take the chill off of the room. The bulletin board is a handy thing to have, as of course weve been able to bring it to the hospital and home again as hes undergone various chemo rounds.
Dad is coping as well as he can, I think. We did get an ipad for him, so if he is feeling well enough, he will read email or watch a Netflix movie. He also reads a lot, which does help alleviate some of the boredom that comes with a long hospital stint. He takes an Ambien each evening to help him sleep, along with an Ativan, which is meant to help him relax a bit and lighten some of the anxiety that has naturally accompanied his situation.
I hope that you are doing okay, and that as the shock of your husbands diagnosis becomes a little less intense, you will find moments of relief and joy to sustain you through this very stressful time. Wishing you and David the very best!
Our family is just a few weeks further into this ordeal than yours is, so mine is definitely NOT the voice of much experience here! I know how overwhelmed you must be feeling now though, and wanted to let you know that I am thinking of you and your husband, and hope that the worry of all of this will become a little lighter as treatment proceeds and you see your husband making progress!
My mom is Dads (67 years old, dx with AML, both induction and consolidation behind him, awaiting transplant) principal caregiver in this situation; she is holding up pretty well, though, and I thought Id share a little of what seems to be helping her. One of the things that she does on a regular basis is to journal a bit about whats going with my dads situation on the caringbridge site. This has been a surprisingly helpful thing for her to do both from a practical point of view and an emotional one: she has been able to keep track of whats going on with treatment, and share updates with friends and family who are concerned and interested in whats happening, but probably dont want to intrude with lots of questions about the details of all that is going on. In terms of the emotional or psychological benefits, it has been so wonderful to have heard from so many friends their love, prayers, well wishes, and concern have helped all of us to feel less alone in our worry about the leukemia and issues associated with treatment. The caringbridge site includes a virtual guestbook she and my Dad (when he is up to it!) check in on a daily basis, which has really lifted their spirits.
Another thing that they do is play games together whether they are in the hospital or at home, so long as he has the energy, they like to enjoy a game or two of scrabble. This is something they did all the time before AML, too, so I think it has helped a lot that theyve been able to continue to enjoy it in the midst of all of these new troubles. Maybe there is a similar activity that you and your husband might enjoy together?
We are fortunate that our family lives so near to the hospital here in Boston it probably gives my mom some relief to leave for dinner each evening and enjoy a visit with the grandkids (she is not sleeping at the hospital, but is staying with us when my Dad is here for treatment). If you are staying at the hospital, I am not surprised if the stress you are feeling isnt even just a bit more intense and persistent. I do hope that you are able to get breaks from time to time my mom will sometimes leave the hospital for a bit (especially if Dad is napping), and see a movie! Another thing that we did as a family was to cover a bulletin board with family photos and pictures of places that are special to us as impressed as we all are with Brigham & Womens Hospital here in Boston, it is still a sterile hospital room, after all, so it seems to have helped both Mom and Dad to have pictures of people and places they love most to take the chill off of the room. The bulletin board is a handy thing to have, as of course weve been able to bring it to the hospital and home again as hes undergone various chemo rounds.
Dad is coping as well as he can, I think. We did get an ipad for him, so if he is feeling well enough, he will read email or watch a Netflix movie. He also reads a lot, which does help alleviate some of the boredom that comes with a long hospital stint. He takes an Ambien each evening to help him sleep, along with an Ativan, which is meant to help him relax a bit and lighten some of the anxiety that has naturally accompanied his situation.
I hope that you are doing okay, and that as the shock of your husbands diagnosis becomes a little less intense, you will find moments of relief and joy to sustain you through this very stressful time. Wishing you and David the very best!
I doubt you will have time to read it now, but if you want to trace my complete story, which started out with the resignation that I was just going to die, so let's get it over with. Things obviously changed and there was a point in time when I decided that this was going to be an adventure. Not a pleasant one to be sure; but I was going to accept the challenge and give it all that I had. You and David need to make that turn if you have not already. Let me cut it here -- we can talk more on this thread later. My journal is on http://Biblethought.org/ -- at the bottom of the home page, called "No Visitors Please" -- that was the sign on my hospital door, for obvious reasons. Take care and we will be in touch -- dave
Thanks so much for your insight and helpful suggestions. I know that I need to lean on others for support. I also know that i have to leave the room for my own sanity, but I have not reached that point yet. I feel that I need to be with David at every point in this journey. This past week, I let my son stay for the night with him, but I found it difficult to be at home alone. I am hopeful that, in time, I will cope better and chart a better course for the two of us.
Dave,
I just starting reading your story and found it extremely helpful. You provided some important information that I found very useful. This site has been a Godsend for me. Thank you all from the bottom of my heart. If I have any questions I will be sure to send them your way.
Myra
I just finished reading your entire story. You are truly a gifted writer and chronicler. Did you keep a diary during your treatment year? Would you recommend it? Also, the story ended in 2010. What happened between then and now? Was it your decision not to have a BMT? My husband is approximately your age. I know that I am getting ahead of myself here. I have been told over and over to take it one day at a time but I can't help wanting to know what will happen down the road. Thanks so much for caring.
Myra
First, I am flattered that you even read it and I appreciate your kind words. I am a professional technical writer (mostly proposals) but I have written three technical books as well, so words come much easier out of my fingers than out of my mouth.
"Did you keep a diary during your treatment year?" No -- writing it up was the furtherest thing from my mind. Survival was the only thing. I did not believe off and on (as you read) that I would survive, so I guess in selfishness, I did not write it up. However, I did a lot of e-mailing with my kids and those who were praying for me, and I gave them a lot of details of what was going on. I decided about the time that I finished my last chemo treatment that I could pull it together and that it might be useful to others. By that time I joined several of these lists (this one is the best), and I kept writing the same things over and over, so I felt like it might be good to get it down for once and for all. So I gathered all of the e-mails together and was able to walk on through it. As I was doing it I really felt that I never wanted to forget it and that it would make me remember. Some people want to get as far away from it as they can and never think about it again, but that is not the way I felt ... it changed my life for the better and I did not want to go back.
"Would you recommend it?" I think it is good therapy -- in a sense all of us on this list are doing it. Maybe not putting together our complete histories, but for sure recalling the lessons of the past.
"Also, the story ended in 2010. What happened between then and now?" Things have gradually gotten better -- I am gaining in stamina -- I can probably do an hour of really hard work (chainsawing and raking the yard -- that has been what I have been doing recently). I know when I am going to hit the wall, and I back off -- I do not expect to be like I was ten years ago. But I am doing fine, am on no meds for AML at all. Just some stuff for thyroid which was an issue a good decade before I was DXed. So, all has been well and will be unless or until I have a relapse. But I just do not worry about that. If I did it would ruin whatever life I have left, so I figure I will deal with that only if I really need to. Things are changing so fast that right now I would not even know what they alternatives are going to be a year from now. So, why bother?
"Was it your decision not to have a BMT? My husband is approximately your age. I know that I am getting ahead of myself here. I have been told over and over to take it one day at a time but I can't help wanting to know what will happen down the road."
Well sort of yes and no. I really did not want to go through it. I have an older brother who is a perfect match, and I did not want him to go thru it either. My onc knew that. But I don't think he was too influenced by that. I really think he was on top of things and knew what was going on in the field quite well -- he has since gone on to a job at the Mayo Clinic. His recommendation was that since, in his opinion, the BMT or SCT would not significantly increase my chances of long term survival, he recommended that we just do the wait-and-see approach -- keep an eye on it, and if things start to go in the wrong direction, deal with it then.
I do not want to make this a recommendation and most on this forum are having transplants or have already had them. They will help you tremendously on through it if you decide to go that way. However, I am glad I made the decision I did, and even if I should relapse tomorrow, I would still be glad. There are risks either way, and the GvHD issues (rejection of the foreign tissue) is almost a certainty, so that is a definite downside that I have not had to deal with. At nearly 70 now I doubt they would give me the option, and I would probably seriously consider some of the alternative treatments options that you can read about on that thread. I am following it closely, but not being too concerned ... one of the tenets of the management book I wrote was: "never make a decision before it is necessary -- more information will become available."
I advise you to get all of your information together and make a list of alternative, with the pros and cons, and then with the help of your medical team I think the decision will be obvious for you as it was for me (even if not the same).
Take care -- dave (http://Biblethought.org/)
Not only is Dave a Biblical scholar, but he has a lot of "seichel," which is a Yiddish word for common sense. Our doctors present the alternatives differently it seems, and our responses to those recommendations have differed as well. I can only speak for myself, but I was very wary of offering my "two cents" when it came to the treatment that I would be getting. Although I am a physician and pride myself with how much I know in various fields, I am not an expert in oncology and most specialties and so my opinions, no matter how well I might understand what I am being told, are really not based on much. I chose to "follow orders." That was best for me, because I don't like menus with more than one entree. I can see that Dave really gave his decision his usual tremendous amount of thought and reflection (he is amazing in that capacity, truly) and actually let his brain guide his decision. So you see that we go about this differently. I don't care if someone calls me an "ostrich," because I really didn't bury my head in the sand; I just let my doctors make the decision about what was best for me. I also have tried (not always successfully) to not read about my disease. I do not know what my classification was (M1, M2 etc.) nor do I care to know. When my loving sister started quoting me statistics during my treatment, I didn't listen to her.
As I once quoted before from Alexander Pope, "A little learning is a dangerous thing," and, as Albert Einstein added many years later, "so is a lot." Think, but trust your doctors and, as our modern sage, Dave, said, "the decision will [then] be obvious."
Love,
Cliff
When I read a post like yours, I am rendered speechless. How could I ever express the emotions of "the fight" as well as you just did? I just can't, and couldn't in a million years.
Love to you and Tina (God Bless You Both),
Cliff
Thank you for your post, It has helped me and i know your words will reach MYRA.
You have a God given gift of words, Thanks for your encouragement and inspiratation.
Love to youand Tina and ( Hugs to your children)
Ben and Sandra.
You are awe inspiring... There is nothing I could add to Myra you said it all and much better than I could.
Blessings to you Tina,
Planxty
How is your dad? He and my husband share the same name and age. David is having his BMB tomorrow. We will anxiously await the results. All the best to you and your family.
Myra
It is thoughtful of you to ask about my Dad. He is doing well right now - a little more than three weeks out from the completion of consolidation. While he gets "winded" pretty easily, and definitely doesn't have the stamina he'd like to have, he is enjoying being at home with my Mom, and feels strong enough to do things like cook, read, watch movies, play games, and chat with friends and family over the phone. I might be wrong about this, but I don't believe he's had a transfusion in about two weeks. He does try to take short walks when he has the energy (and the weather permits). He is coming to Boston at the end of this week for bloodwork and biopsies of both his bone marrow and kidney.
He is now strong enough to play a much more active role in understanding what's going on with his illness, and is doing all that he can to make sense of the risks and rewards associated with a stem cell transplant. It is a very scary thing to contemplate, we are finding, and we are trying to formulate questions for the medical team in preparation for a meeting at the end of the week. Good Friday/Easter will bring us together as a family for the first time since his diagnosis in early January. We are so looking forward to it, and of course will be very mindful that the season brings with it the promise of hope and renewal!
How are you and David doing? I know how anxiously you must be awaiting the results of the bmb. Isn't the stress of this just unreal? I hope that you are feeling less anxious as treatment progresses. I know that those first few weeks had us just walking around sort of stunned by the turn of events. A couple of months in, it is a little easier to relax, and it is more possible to tend to what needs tending (kids, work, house, etc.) Is David doing ok with the chemo at this point? Do you have a sense as to when he might be released from the hospital? Hope that you are taking good care of yourself. Wishing you all the best at this very stressful time!
Robin
How are you doing? I'm familiar with RWJ University hospital. I have been treated there since Dec2011 for two inductions, one consolidation, and SCTransplant (in June2012). The medical staff are very professional. I like them very much.
I know these days must be difficult for David and you, a lot of ups and downs, everyday is a challenge, but hang in there, take one day at a time, and you will get through these very soon. Is David at 4N or 5N? I stayed at 4N for transplant and 5N for the others. I remember the corridors, the visitor room, the kitchen, etc. I walked whenever I could. Getting out of the room is good for the body and mind. Wish you the best. If anything I can help answer, please don't hesitate.
Violet