Brenda, you had asked me three questions a "while" back:
1- Could you explain what your test showed?
--- The MDS diagnosis is: Multilineage dysplasia and ring sideroblasts. And my IPSS-R score is low intermediate.
2- How are you feeling now on a daily basis?
--- Essentially, i am immunocompromised , and anemic. Thus, always tired, and careful.
And at times, I become moody.
3- Have you had any major symptoms that disrupted your activities?
--- I have always been extremely involved and busy. A little more than a year ago, I was engaged in seven not-for-profits, did my share of the cooking, organised fairly complex trips for my wife and I as well as for our family of 15, read extensively, kept physically active, etc. As a result of the disease, I have resigned from 4 of the not-for-profits, do a lot less cooking, am unable to read as extensively, and have cut back from the travelling. In addition, I try to avoid any large indoor gatherings, and regularly take naps.
But I am able to get on with life. Mentally, it is a challenge, but it is better than the alternative. In addition, I am "preparing". I will soon be 77, and will be celebrating our 55th wedding aniversay in a couple of weeks.
I am also participating in a blood cancer monthly group discussion, and meet with a psychologist on a regular basis. It is not easy, and not always fun, but I feel privileged.