Thread: So scared
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Old Wed Apr 15, 2015, 07:56 AM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
KristinR,

Very sorry to hear about your diagnosis. I think that the suggestions you have already received are great ideas. Finding out that you may have a marrow failure disease is a tough transition, but one that you will prevail over. I tend to be a little on the verbose side, but I will try to keep it short here.

Obsessing about numbers is a very normal start for most of us as patients, but it is probably one of the more futile exercises that we go through as we have no control over where they are on any given day. Fluctuations happen in normal marrow.

My shrunken versions of advice: The disease is not your fault. What you are capable of doing on any given day represents the limitation of your physical well being and your mental/emotional well being, so it is important that you exercise control over what you can control and that you let go of what you cannot, without guilt. If you are fatigued, rest. Explain to the people around you the impact of your physical and/or emotional state, and take the steps needed to overcome them each day. This has been the hardest part for me and I am over 1 year past transplant. I have three children and what I have learned to do is to occasionally catch up on TV by marathon, to spend a lot of time on the couch cuddling up with them, and when I have it, make sure that I put out a good breakfast, lunch, or dinner.

My favorite phrase is to enjoy what there is to enjoy and to endure what there is to endure in life. AA and MDS give this a whole new perspective. I have been the 18 hour per day worker - some days I only put out 2 hours of work, but it is what I've got for the day and I give it all during that time.

You asked about positivity and encouragement - Focusing on one day at a time, making sure that you don't let your good moments of the day pass you by, giving yourself a list of things to do that have small and large accomplishments in them helps me tremendously. I always want to win. Sometimes winning is that I spent an hour on the couch with one or all of my daughters watching a show and hearing them laugh is that victory. I am not a fan of TV, but I love to see the kids laugh and interact. I also love to see them get it all together and make dinner or lunch. Other days - high energy days - I will get out and go shopping, have a nice date with my wife, go to the gym for an hour or more, work on the car, clean up part of the house......i go with the ebb and the flow, that way when I look back on the week - I won.

It is a different life but one that you can enjoy and live fully until your treatments are finished and you are cured of the disease.

The other positivity notes - find a doctor/team of doctors that you trust and respect and that respect and trust you as a patient. Having the right team makes all the difference. I received 3 different opinions and went with the team that made me feel like they had my success in mind. We have had a dozen bumps in the road, but in most cases, we knew of the possibilities, so the changes weren't quite as jarring as they could have been.

I failed again at keeping it short, but hope that this helps.
Dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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