My partner's doctor confirmed he suspects MDS.

[georges]

Hello, and especially to Neil. I don't quite know what to say but I'm devastated that my soul mate has MDS. The bone marrow biopsy will tell us how serious, but the doctor did say that is his primary diagnosis. I'm so sad, worried, afraid, and lord knows all other emotions. Did I cause this? Was I a crappy person and this is god's revenge? Maybe if I'm nicer to people he'll recover? I know it's not logical but I think of all these things at once. I wish it were me. I'm ready to die. Why couldn't it have been me?

[Dick S]

You DIDN'T cause it and you can't CURE it, but please don't contribute to it, so stop blaming yourself. Your emotions are normal. Your dying won't help him live. He needs you now more then ever, so be strong and hide the tears and be the strong one. My only advice to you is trust the doctors, do what they say and pray, that's what I do every day. Good luck, go with God and we will all pray for you and your mate.

[Neil Cuadra]

George,

I know from your previous post that this diagnosis is what you feared. Clearly, getting the MDS diagnosis is still a huge shock, and you and your partner must be reeling. Many of us have had this shock, but everyone reacts in their own way and copes (or not) in their own way.

I don't know what will help you the most, but I can tell you what helped me: learning all I could about the disease and its treatments, and doing my utmost to work with my wife and her doctor to take care of her. There are more choices of treatment now than ever before and success rates climb every year so I see many reasons for optimism.

As to the cause of his MDS, most patients don't get an answer to that question. Unless he had known exposures to toxins or previous chemotherapy, it may the result of random genetic mutations that we all experience throughout life, which are usually benign but sometimes result in disease.

The best suggestions I have for your partner are to rely on doctors and a treatment center that have lots of experience with MDS and to work with the doctor (and you) as a full partner in his own care. I think that patients who help with the decision-making and who understand what's happening to them, from both the disease and from the treatments, make their own luck -- and that it makes a difference.

The best suggestion I have for you is to use all the support available to you from your family and friends, online sites like this one, community services in your neighborhood, and your partner's treatment center. That includes getting professional consultations, if they will help, to address the emotional issues that patients and caregivers all face in some form. You need to find what helps you cope so you'll be able to help your partner. No matter how much support you get from people over the Internet who have been in a similar situation, it's not a substitute for face-to-face help.

How are your partner's spirits? Please keep us posted.

[georges]

Sorry for yesterday's despair. I am trying to keep that from my partner so I let it out on the net. My partner's spirits are quite good. I think that is because he doesn't fully understand what he has, but then again, you never know someone's true strength even after living and sharing life's ups and downs for 23 years. It's just that yesterday was the day after the doctor told us his initial diagnosis is MDS. Later that evening when we turned off all the lights to go to bed my parnter asked me, what did the doctor say I have? I said, MDS. He says, oh okay. I couldn't help looking at my partner as a child. It broke my heart, but I didn't show that to him hence my dispairing remarks yesterday. I basically vented my dispair here so I'm sorry it wasn't very uplifting. Our family is basically my aged parents so I try not to "unload" too much on them. My father and mother insist that he can have their bone marrow, it's naive but very touching. My partner's parents died when he was a teenager.

His bone marrow aspiration is tomorrow. Then Nov. 6th 2009 we will be told what type of MDS he has. Lord have mercy on his sweet soul. And thank you so much for providing this outlet for people going through this. I wish everyone here the best. I have read many of the stories and they have provided feeling of hope to me. I know we can manage this desease and I know I can come here for information to help us.

Thanks again,
George

[Gloria J]

Hello George, I can imagine how you both feel after such devastating news. But, don't despair, and, Neil offered you great advice - take it to heart. Read and talk to as many people as you can, and don't let the doom and gloom you might read scare both of you.

Every day there are new advances and treatments available for all of these awful bone marrow diseases, you just need to find the one that will work for your partner.

One other word - ask, no, demand, the best bone marrow biopsy person they have to do his biopsy tomorrow. That procedure in itself can be overwhelming, and you and your partner don't need that on top of everything else you're dealing with.

Best of luck for an easy time tomorrow, and know that everyone here is pulling for you both.

[Lisa V]

George, I don't have any medical advice for you but I just wanted to add my voice to the others. Your despair is familiar to all spouses/partners/caregivers whose loved ones have just received a diagnosis like that. I remember breaking down at the drop of a hat, and having to go into the other room to cry so my husband wouldn't have to see me looking at him with big sad eyes. There are stages of grief with an illness, just as there are with a death or any loss, but your partner is still here, so don't ever lose sight of that.

Hopefully with time you will find a coping mechanism. For me, as for so many others here, it was learning everything I could about the disease and getting as involved as I could with his treatment. I am forever grateful to the nurse who took me aside and told me to keep asking the hard questions and that I could be his biggest asset if I acted as his advocate. She could see that his style was passive avoidance and mine wasn't, so she pointed me in the right direction. I really believe this has helped both of us immeasurably. It not only gave me something to do with all of that chaotic emotional energy, but my research and online interaction with others has helped us both to gain clarity and to make informed decisions. Often at his appointments I had information at my fingertips that his doctor did not have. I'll never have the fuller understanding or experience of a medical professional, but I also don't have any other patients to distract me, just one very important one!

Of course it is human nature to find reasons to blame onesself or make bargains with God, but you obviously know that's not rational. More importantly, it's not really helpful, either to him or to you. Neither is jumping to conclusions based on your co-worker's experience. MDS is kind of a catch-all category for a bunch of related hematological disorders, and every case is different. Once you find out what category of MDS he has, you can focus on what his options are and what the prognosis may be. Statistics may help you come to terms with what you're up against, but they're not gospel. People confound them all the time, and medical science continues to improve and come up with new options. By the time statistics have been recorded, they're already obsolete.

Your life has changed for good, this is undeniable and sad, but the best thing you can do now is to figure out how you're going to live it from now on. This won't happen overnight. It's an ongoing process, but I think you're on the right track looking for answers and people to talk to.

I wish you both all the best.

[JEZ]

I have AA but did not know this at the time I went in the hospital the first time. The doctor said to a resident right in front of my husband and I that she thought it was lymphoma. For a week we thought I had cancer. In that time, it was soooo important to me that he be strong although in our relationship I am usually the one who takes charge.... it was only later that he told me he cried many times with his sister who was his release and person to vent to. When he was with me he was my rock... we did shed many a tear together but he was still the one who kept us strong... I also went through a bad bout of depression after my treatment for AA with ATG... he was my rock thru that as well. As for God, I believe if you need a miracle, God will give you one. If not, he won't. It is not something that is in our hands. I also experienced unbelievable grace and insight and closeness to God and my family in my hardest times. I believe with all my heart that God is LOVE not judgment in this wilderness.... I hope you experience that in the midst of your sorrow. My heart is with you and your partner.

JEZ

[georges]

You are all so incredibly strong people. I'm really trying to be. I've managed to not break down in front of him, but I have moments of sheer panic when it starts to occur to me that he doesn't understand what he has. He is a workaholic so I don't think he's done any research into this. I've been researching it and so I feel like we are at this point where I know and he doesn't. I can't tell him. Call it weakness, but I can't do it. I'll let the doctor do it. I don't know what to do. I need help. I can't go on for a month like this waiting for the results of his bone marrow biopsy. The bone marrow aspiration is today. I love him so much it's unbearable to witness this. I need to find help. I keep crying every, in the car, at the gym, in the shower, on my walk to metro, in the bathroom at work, at my desk. I can't eat without wanting to vomit. My nerves get so bad I can't control my bowels. I've managed to hide this from him. I hugged him this morning before leaving for work. I held him close and tried to remember his feel, smell, and face. I then walked outside and cried the whole way to metro.

Today, is bone marrow aspiration day. We will get through it. I'll hug and hold him all day when the procedure is over. Tomorrow we are going to visit my parents.

Thank you all so very, very much. You're all incredibly strong people.

[Dick S]

George, I am surpised that no one has mentioned getting the information package from the Apalstic Anemia and MDS International Foundation. They are right in your area in Rockville MD. Go to www.AAMDS.org and get your packet, it is a wealth of information that can greatly help you and your partner cope with this disease.
HTH

[Marlene]

I too couldn't stop the tears. I think I lost 10 pounds in the first 3 days of the discovery of John's bone marrow failure. They too jumped to the conclusion of cancer. John was admitted immediately for 4 units of red cells and two platelets. I went home and cried. I thought exercise would get it out of me but didn't. I felt I needed to get a grip if I was gonna be able to help him so I looked in the mirror, red eyes and all, and talked directly myself...did a little tough love one-on-one. And then laughed at myself because I looked pretty ridiculous....I then knew I was going to be able to garner the strength I would need. This crying was born out of shock and fear. Even though I still had many days of breaking down afterwards, it was different in that I wasn't crying all the time. Sometimes it was just to release my stress, sometimes over the sadness felt, sometime over my powerlessness to help him and sometime because it just breaks your heart to see someone you love go through such difficult times. I even cried at the kindness of family, friends and strangers who were there for us. It was very overwhelming emotionally.

You will get through this.
Marlene

[Hopeful]

GeorgeS,

I am sorry to read what you and your partner are going through.

Until you get the BMB results back, and dysplasia or cytogenetic abnormalities are seen in the marrow, I don't think a doctor can make a definitive MDS diagnosis.

In the early days, when my doctors were trying to figure out what I did or didn't have, I also searched the web for possibilities. The worry made me sick. I think the best thing for you to do right now, for your own sanity, is to "step away from the computer". Wait until you have your feet on the ground again or until you get the BMB results back, and then do your research.

Although the doctor said you won't have results for a month, they should have preliminary results in about 2 weeks (just not the cytogenetics). Don't be shy about asking for these results early.

Never give up!

[georges]

I am going to contact them as soon as I get back home and I have a minute alone. God I hope they can help me. I appreciate everything that everyone has posted, I sincerely do. I'm alone this morning. Everyone is still asleep. I had a restless night. My gratitude to each and everyone of you.

My partners bone marrow aspiration went well. Hopeful - I'm afraid to ask for the results two weeks from now. I'll wait. Thanks.

God bless all of you.

[Jill2008]

Dear Georges,
You are not alone. You're in the right place to get all the information and support you need. I was told by my Family Doctor that I could have one of a number of things. At one end was a vitamin B12 deficiency and at the other was Leukemia. It was four days before Christmas and I remember crying all the way home in the car. All I could think about was if I would ever see my youngest of three daughters graduate from high school or if I would get to see my first grandchild. This by the way, has come true. She was born on August 31st and I was there for her arrival.
It took 6 months of seeing a local hematologist and finally a referal to Stanford to be diagnosed with MDS. My husband and I both held it together until we hit the parking lot. I became obsessed with trying to figure out what caused me to get this disease so young. Was it my job working as a dental assistant for nearly twenty years, the pesticides used on our food, the environment or just a stroke of bad luck? For a short period of time, I had to be prescribed medication for anxiety and insomnia.
The AA&MDS International Foundation has two great, easy to understand booklets: Your Guide to Understanding MDS and What To Expect From Treatment. Stanford also provided us with a great book 100 Questions and Answers About Myelodysplastic Syndromes, which is available online.
Your in my thoughts and prayers.
Jill

[ann]

George, I hope you are doing better and have found a little peace. I remember over 20 years ago when my husband was in the hospital and we had been told he had bladder cancer. I was standing at the end of the hall looking out the window watching it rain and crying. A sweet lady came up and put her arms around me and said the words that I will always say to my self again and again "Honey, he isn't going to die tonight, nor tomorrow, enjoy all the days you have left." We have and still are enjoying each day since he was diagnosed with MDS in June/09. I rmember the first night we went to bed and cried together and talked about our life togeher. We have been married 53+ years and I cannot remember my life before him. But after he had gone to sleep those words came to me again. Honey he isn't going to die tonight, nor tomorrow, enjoy all the days you have left. Some of our days are worse than others but until the Lord calls one of us home, we are
going to enjoy each other fully. God bless you and your partner. I have no idea what your ages are, but that has no bearing on how lost you will be without him, but enjoy each day from this day forward.
ann