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!
Thanks for your responses. I can't tell you how much it means to speak with those who are walking in our shoes.
Robin,
It's encouraging to hear that your dad is doing well. I worry about the fact that my husband is nearly 68; however, that said, he tolerated the first induction quite well. We are awaiting the BMB results which should be either tomorrow or Monday because of the holiday. After reading the posts on this site, we are convinced that he may need a second induction. For him, the worst side effect is being trapped in a small room in the hospital. He wants to go home so badly. He misses his job, our grandchildren and our home. Robin, I wish the very best for your dad, you and your family. I appreciate your support and encouragement.
Violet,
How wonderful to hear from you knowing that you were treated here. We are currently on 4N. We have been pleased with the doctors and staff. We had no choice as to which hospital to go to since David was instructed to come here ASAP after a routine blood test in Princeton. Did you get a second opinion? If you would, please share your story with me so that can tell my husband about you.
Myra
Are David's counts up yet? You can ask the nurse to give you the blood test report. They gave it to me everyday. My problem with the first induction was because when WBC went up but not neutrophil counts. Be patient. Baby step, one day at a time.
Violet
We live in West Windsor as well - how coincidental! David's counts are not up yet. He is receiving platelets and red blood today. I am still staying at the hospital but going home twice a week to take care of things. I took a leave of absence from my job which allows me the luxury to be here with him. The days can be long. Many friends and family want to stay with me but I really prefer to do it alone at this point. I'm getting much stronger since this nightmare began. I wasn't eating or sleeping but have been forcing myself to stay strong. Any advice which you could share would be appreciated. Thanks for caring. I have learned that "baby steps" is the only way to proceed.
Myra
I hear you both. Being trapped is definitely the hardest part. In fact I feel like I am out on bail. I go in tomorrow for what will likely be 30-40 days. While I can't believe this is happening to me again, I do know some tricks. I often skyped or face-timed with people on the outside and made them take deep breaths for me. I did exercises in the hallways, and walked as much as I could and made my vistors special time. My fiance and I read a book together and had our own little book club. That gave me so much to look forward to when she was able to visit me. As you said days pass, hours roll by and you can't wrap your head around the trauma. But enough days and enough hours and David will be free again. As I will. As we all will. The counts will rise when the rise. This time I will NOT anticipate every blood test so when good news comes I will be thankful for it.
love to all.
Ed
It may seem corny, but let the German guy with the guitar come in and play Beatles tunes or whatever. I liked him immensely. One day, he brought two music students with him and we all sang. They will not let you up on the 15th floor where the piano, arts and crafts things etc. are. They WILL bring you scrabble etc.
As I have said in other posts, we all have different ways of surviving trauma. Mine was to repress the memories. The days all blended into each other and the time passed. I imagine that is how people in real prison spend their time. You know it is no fun, but you are very strong and philosophical about things, and those attributes will stand you in good stead. I tend to be a "winer," but not about my health and about living through experiences that are frightening, depressing, and altogether surreal. I really feel that I handled my anxiety well (lorazepam was helpful and I actually took that and an ambien at night); I also stayed up as late as I could and bargained with the nurses about my vital sign hours. I played puerile tricks on the nurses aids. And I did as much exercise as I could stand. One creep of a doctor actually reprimanded me for moving so fast and circling the floor for so long. When your ANC returns and you can go out of your room, you will feel reborn. Eddie, you will get through this well. The only bad part is that I will have to drink hospital coffee when we have our much talked about meeting over coffee.
God Bless You, man.
Cliff
Ed
You are an amazing individual! Despite your recent setback, you still find the time to reach out to others with your advice, support, encouragement and helpful suggestions. I know that you and your fiencee will have the courage and strength to weather the storm. God bless you.
Myra
I take my lead from Ollie and Dave. They have always given so much of themselves. Cliff followed with his constant love and support, and so many others. I have looked at the other threads on this site and there really sin't ay group like this one. As Ollie once said...Were in this one together. I have to say, getting an IV put in and peeing into a plastic bottle today was internally brutal. Seeing my loved one sit in a chair and watch me in treatment broke my heart. I had put this behind me and now it is in front of me. I love everyone on this thread. We share something that is unbreakable. CLIFF do you remember Hilda? She kind of runs the 12th floor Chilean lady? She was trying to remember you but I only knew to say Cliff, he is a doctor.....
I will walk these halls and think of you. Pic line is in. A new chemo protocol starts tomorrow called MEC. This WILL get me into remission. I am confident. How is David doing Myra? Sending my love.
You are amazing, as Myra has said. You lean on all of us. I am here 27/7 to answer even the most trivial of questions regarding treatment. I am surprised you got a Picc line. I had a triple port Hickman type inserted into my jugular vein on the right. It really was easy to take care of. I would just cover it with that plastic stuff when I showered.
Of course I remember Hilda. I am not so sure that too many people up there would remember my name. YOU MUST see if you can get Paul and Christina as your nurses. They are two wonderful people. Get Paul to tell you about his wonderful wife, who, in the midst of having her own children wanted so much to adopt a child as well that they now have three children close in age who are equally loved.
Christina is a caring, adorable, Philippina. The nurses are wonderful there and the nurses aids (mostly Jamaican) were my pals. I loved them all. That's why I was always playing tricks on them. That's what you can do to people you love, not people that you care little about and who care little about you. These wonderful people made an intolerable situation tolerable. Every time I come to Sloan for an appointment, I go up to the 12th floor and ask for Paul and Christina, and every time I have only found Paul working at that moment. So....if you see Christina, please give her a hug for me.
I will be sure to visit, if you are up to it. Right now, I am certain that I have the flu. I got Tamiflu and a Z-pack from my internist, and discussed it with Kim, Dr. P's wonderful nurse. I don't feel sick enough to take either and feel that I am actually recovering pretty well. Even though I will be wearing a mask, I don't want to be sick with anything should I come to NY.
Eddie... as you know well, this group has the ability to rivet its attention on those who need the most love and support. Today, that someone is you, but soon it won't be. Why? Because you will do so well that your well-being will be taken for granted.
Thinking of you.
Cliff
You are so amazingly selfless - asking about David while confronting your own difficult situation. Truly remarkable! I am happy to report that David's preliminary path report showed that he is in remission after the first induction. We were so happy that our doctor told us late last night and that we didn't have to wait until Monday because of the holiday. He starts his shots today. Not too sure what they entail but whatever gets his counts up so that we can go home sounds great to me.
My prayer list has broadened and you are at the top, Eddie. During this Holy Week, I pray that God continues to give you the courage and strength have you have consistently shared with others.
Myra
I am so happy for David and know that I will soon have that same emotion for Eddie as he slays this fire-breathing dragon called AML.
God Bless all of you out there,
Cliff
That has lifted my spirits today. TOday is my 45th birthday and today I began chemo and got a picc line and a full body CT scan and a birthday cake from the entire nursing staff. What a day. I love you guys and to be honest, hearing remission is the most important word in the world. Send Dave our congrats. Cliff. I will reach out to christina and paul!
Ed
I was soooooooooooooo happy to hear about David from Myra this AM as were you. I want to do a dance (Harlem shuffle??) when you tell us that YOU are in remission.
As I think I told you, or perhaps posted somewhere else, the one downside of this website for me is that I truly get depressed when I hear that anyone has hit a really big speed bump in their health. When I read about you, I went into a tailspin, until I learned who would be taking care of you. I admire the doctors at Sloan, but am particularly partial to Dr. Papadopoulos, She is just a wonderful human being. Her secretary, Ashley, who is also amazing, will be starting Physicians Assistant school at Baylor in a few months. She and I have a special bond, fueled by the fact that she never forgets to do anything and puts up with my requests for whatever. I will miss her. Then there is Kim, Dr. P's nurse. When you meet her, tell her that I said her glasses look "hipster." What a team. You may be sorry when you get totally well again, because you won't be seeing them as often.
Eddie, I think that a bit of Ollie's soul now resides in you. Your selfless concern for others, your spirit, your sense of humor....that is so Ollie. That's why you will fly over all the moguls and navigate all of the speed bumps with ease. Why? Because WE NEED YOU!
I hope that you will let me visit, although there were times that I didn't want to see anyone. I think you are so past that attitude mentally. It took a long time before I would see anyone but my immediate family and my sister, who I love so dearly. It's amazing, she is such a hypochondriac, and yet she made me feel like myself again, as we recalled memories from our childhood and laughed ourselves silly!
Right now, I would only visit my worst enemy (and an enemy who hasn't gotten a flu shot). Isn't it great to be able to complain about something trivial. You'll be there soon. I just know it.
Cliff
PS: Ask for 3 entrees with each meal and eat as much as you can. I didn't find the food too bad. Give my love to Christina and Paul. Paul was the one who shaved my head for me and Christina put up with my shenanigans. Two wonderful people.
Myra, Yeah! So GLAD to learn David is in remission. It was nerve wrecking while waiting, wasn't it? Congratulations. Be patient. Stay strong and positive.
Violet
Cliff, does the fact that he still has a blood infection interfere with this? He is still very frustrated that he is on so many antibiotics and the fever has still not broken.
Thanks so much,
Myra