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  #1  
Old Fri Oct 30, 2009, 08:38 AM
georges georges is offline
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Location: Arlington, VA
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I apologize for this post. No need to respond.

Boy, I'm having a hard time. I can't accept what's happening or going to happen to my partner. I can't talk to family and friends any more because I don't want to repeat to them over and over my intense fear and worry. They aren't trained grief counselors so inevitably they'll want to discuss something other than my partner's MDS, but quite frankly it's the only thing on my mind and all other topics feel almost painful like I want to scream. (It's like being in a car with someone else driving and I'm the passenger. They're driving at 100mph, tailgating and swirving while at the same time a small child sits on my lap chatting sensely to me.) Usually it's me crying and sobbing and then they'll say be strong then the conversation turns into "well, we're taking the kids to football tonight, have nice weekend." I considered calling a suicide hotline just to talk to someone without having to then ask each other about weekend plans. I know what my plans are, they've been the same since the whole thing has happened. I'm going to try to be normal. I'm going to try to not panic. I'm going to try to sleep at night without waking up at 2:00 am with my heart pounding out of my chest. I'm going to try and to find the purpose in cooking, laundry, and cleaning. Infact, my weekend plans are not different than any other day. No one wants to hear that after they've just told me they're going to buy pumpkins and crysanthumums to decorate the house for halloween.

I've tried calling the volunteer help line from the AA and MDS foundation, but no one has ever answered. I've called that number for two weeks at least. I figure someone is going to be at a suicide hotline. Certainly they're not expecting me to engage in lite chit chat.

God, please, on Nov. 6th present yourself through the doctor and deliver the news with compassion, and patience. I repeat this over and over.

I'm writing this here because I can't find another outlit for my stress and sadness.
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  #2  
Old Fri Oct 30, 2009, 02:13 PM
leeslay leeslay is offline
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georges,

I understand to a point what your going to. I am the one with the disease and I sure have found out who my close friends are. I feel the same about trying to talk to someone and they listen for a minute and then they are off on their own lives and plans. I understand that everyone has their own lives but it would be nice to just talk to one person who gets it and doesn't say they know what we're going through, and that it will work out.

You and your partner are in my prayers for your next appointment. This website has been a great place for me to go because nobody I know is going through this and I can read others' experiences and relate. Have you tried to speak with your pastor? That might help.

In my thoughts and prayers, Lee
__________________
Lee-39 years old-AA,PNH and chromosome 12 disorder-1 rabbit ATG treatment and 1 horse ATG treatment. Getting my bone marrow transplant on November 23, 2010!!!! Counts as of 12-27-10 HGB 12.0, WBC 7.8, platelets 80, Neut# 3.9(12-24-10)!!! Just a touch of GVHD but back home!

Last edited by Neil Cuadra : Fri Oct 30, 2009 at 05:22 PM. Reason: fixed spacing problem
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  #3  
Old Fri Oct 30, 2009, 05:21 PM
Neil Cuadra Neil Cuadra is offline
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George,

You said yourself that your family and friends aren't trained grief counselors. You need counseling or other direct personal help from somebody who is trained for this kind of thing. You are feeling hopeless and helpless beyond your coping ability, like the runaway car you describe, so it's time to go to people who can help and not just hope you can put it out of your mind. Please, please go to a professional, call the suicide hotline, see a counselor, and don't give up if you don't get through -- call again or call someone else. As caregivers and patients we can sympathize and understand your fears for your partner and how it can leave you in a panic, but you need experts who know how to help you get through this, just as your partner needs experts to treat him. Please tell us that you will get help right now.
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  #4  
Old Fri Oct 30, 2009, 07:18 PM
Hopeful Hopeful is offline
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Location: California, USA
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Hi GeorgeS,

Many cancer centers have a social worker on call that is available to both the patient AND family. Often insurance will even pay for the visit. Trying calling the nurse at the hemotology/oncology office and ask them to connect you with the social worker on staff. It works wonders to talk it out with someone who understands.

Peace and Strength,

Hopeful
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53 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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  #5  
Old Sat Oct 31, 2009, 02:44 PM
Vera W Vera W is offline
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Location: Colfax Ca
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Georges,
MDS is not a death sentence. there are lot's of treatments, a year ago to this date I had my first consult with a transplant doctor and my first vidaza shot. i was scared, I cried every night, I thought I was going to die, I started to do research on every aspect and treatment and it empowered me, I am sitting here today 100% MDS FREE with 100% strong donor cells in my body! Get focused, educate yourself ,Pray, find your inner guidance. Be strong,,all of
these things wtll work for you. My life changed when I realized that i didn't have to die from MDS, i will pray for calmness in your spirit and that the right decisions are made. peace be with you. vera
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09
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  #6  
Old Sun Nov 1, 2009, 05:43 PM
ann ann is offline
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Location: Burleson, TX
Posts: 77
I tried to send you a message but my computer timed out or the forum decided I didn't have much to say. All I wanted to tell you is that most us know just how you feel. That doesn't help but we do. Days when we could slap somebody if they dared to tell us to just trust and all would be good. Now I'm going to tell you the same thing! YOUR PARTNER ISN'T GOING TO DIE TODAY OR TOMORROW. We hope. Live each day as if it were your last and enjoy each other. Go in the bathroom at 1 A.M and cry your eyes out.
Call a pastor, an insurance company's help line, a hospital, just not the suicide
line. Give out, just don't give up. Keep in touch with these wonderful people on the forum and just vent, vent, vent. We all want to at times. God bless
you and try to love the life you have left.
ann
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Ann, wife of Henry 73 year old diagnosed MDS, congestive heart disease and pulmonary edema..
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  #7  
Old Sun Nov 1, 2009, 06:53 PM
Dick S Dick S is offline
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George, I had a real problem with alcohol to the point of death, but I beat that 23 years ago.
I look at it this way with the alcohol......."I have a disease that I will die with, but I don't have to die from it". I feel the same way about my MDS. I'm not going to die today or tomorrow, so I just make the absolute very best with every day I have.
You need to get off your "pity pot" and be strong for your partner. Don't you thing for one minute he would not do the same for you, if the rolls were reversed? If you need professional help, GET IT!, but stop blaming yourself and the disease for what's happening, it's not your fault nor your partners. Trust me from experience, "The will of God is, what IS". Acceptance is a virtue, strive to persue it and get help if you need it.
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Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
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  #8  
Old Sun Nov 1, 2009, 07:30 PM
Lisa V Lisa V is offline
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George, you don't have to apologize for your postings. If writing down what you're feeling and sending it off into cyberspace makes you feel better, then go for it! We may not have the exact right words to say, but we do GET it, especially the spouses and caregivers. Even though we all share common concerns and can help each other, the issues of the person who is not the one with the illness are a bit different than for the one who is sick. I'm not going to say which one is harder than the other, they're just different.

I remember feeling the kind of anger you're talking about. All kinds of well-meaning friends would offer their home remedies, and it just made me want to scream out because they didn't really understand AA. I would snap at people who tried to tell me what he could do to boost his immune system, because it was actually an overactive immune response that was destroying his cells! Were they trying to kill him??? No, of course they weren't, they were just trying to help. And heaven forbid anyone should tell me to just have faith in God or the doctor or whatever and it would all be okay! That was sooooo not what I wanted to hear! On the other hand, if anyone offered to pray for him I was deeply moved and grateful, even though I'm not a religious person. Just the fact that they were showing concern instead of trying to simplify things or sell some kind of quick fix was enough for me.

I would try to distract myself watching TV, but I would just get so furious watching people on talk shows whining about their insignificant little problems, so that didn't help much. I kept staring at the phone numbers of the AA&MDSIF's list of contacts in my area, afraid to pick up the phone. I didn't want to talk to anyone who was doing better than Ken because I knew I'd feel jealous and bitter, but I also didn't want to talk to anyone who was doing worse because I knew it would scare the bejabbers out of me! I wanted to find someone who was in exactly the same situation as me and coping with it, LOL. Well, nobody is ever going to be in exactly the same situation, but I did make some online contacts and that helped get me through it.

The waking up at 2:00 AM in a panic and not being able to get back to sleep? Been there, and so have other caregivers I've talked to. What is it about 2:00? If I could get past that point, I could get through the night, but it was like having an alarm clock go off every night for months!

All I can tell you is IT DOES GET EASIER WITH TIME. I do agree with Neil, though. I hope you can find a good professional counselor who can help. I tried, but our hospital doesn't have a serious illness counselor, which is what we needed. They referred us to their psychiatrist and to a social worker, neither of whom GOT IT. It really is a specialized area, and I hope you can find someone ASAP. I'm worried about you!

Having said, that, try not to snap people's heads off too much for asking about your weekend plans. I know that sort of triviality seems meaningless now, but sometimes if you can go through the motions of having a normal life, you look around one day and realize that you CAN actually have a normal life, regardless of what else is going on. Just a thought.
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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  #9  
Old Tue Nov 3, 2009, 07:57 AM
georges georges is offline
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Location: Arlington, VA
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thank you everyone. I'm feeling more in control today.

I can't express my gratitude enough to you people (some MDS patients and some caregivers). Your shared experiences are helping me cope and are overwhelming. As Ann was saying, he is here today and will be tomorrow. I'm learning to live and appreciate the moment instead of speculating about the future, but at the same time making preparations. Dick, thank you so much for sharing your story. If I'm not mistaken, you are on the AA & MDS foundation website correct? You're sort of famous! Yes, if it were the other way around, my partner would go to all lengths of the world to help me. Neil, I called nurse at the Georgetown University Hospital and asked her for help so she can put me in touch with a social worker as Hopeful had suggested. Vera, you are a walking miracle. I hope a miracle can happen for us too. Leeslay, thank you. My friends and family have been great. I fully understand that my struggle is in my head and has nothing to do with anyone else. I haven't snapped at anyone. You people are the lucky recipients of my meltdowns. Thanks for the prayers and perhaps, although my partner and I are no more worthy of a miracle than anyone else, we will be shown at least a little mercy.

Thank you all so much. I have my list of questions ready for Friday. My partner still hasn't asked me any questions about the diagnosis. I have the AA & MDS foundation patient package that I'll be taking with us to the appointment. My partner hasn't seen it yet because I haven't shown it to him, but certainly he will this Friday.

One of my main questions is, has the doctor treated anyone with the same type of MDS that my partner has, and what has been the outcome? Perhaps that's not a wise question? Any other questions that someone you wished you had asked at diagnosis but didn't have the experience enough to know to ask it?

Also, I want to be able to help other people here just as they've helped me. Once I get on stable footing with this, then I can share what I've learned with others.
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Old Tue Nov 3, 2009, 09:45 AM
Marlene Marlene is offline
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It's good that you are going to ask your doc how experienced he is with treating MDS. I also encourage you both to take the time and get at least one second opinion. You are close enough to go Hopkins. I remember hearing lots of good info on a Dr. Gore out of Hopkins. Don't know if he's still there but many MDS patients spoke well of him. NIH is also close so you may want to explore what they are up to these days.

You want to know what all your options are, and become informed about them.

Regarding outcome and expectations.....You can ask and everyone will have a different story to tell. No one can predict how well you will do, what side effects you will encounter and what problems will arise.

I remember when John was going through treatment, I took mental notes of all the problems others where experiencing with treatment so I could be on the lookout for them. (that's another way of saying "so I could worry about them"). Only to find out that the 15 things I worried about never happen and instead, he had his own unique set challenges. I finally realized that things would come up and we would deal with them. I was comforted to know that we were in the best place for them to be handled by a very experienced and caring health care team. They were quick to recognize problems and able to act swiftly.

I also approached this by breaking down this challenge in smaller segments so I could focus on the most important aspects. Kind of like project timeline. So the first step was to get an accurate diagnosis, then research treatments and docs, then treatment, etc. I then broke down the major steps of the treatment so that I did not worry about what was going to happen two months out.

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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