Doesn't want to know

[Bossywife]

My husband cancelled his myeloid gene panel test in June. He told me he doesn't want to know if he's dying and he's afraid of they start treatment, he will start feeling crappy.

I'm torn between respecting his wishes and frustrated that he thinks treatment will make him feel worse. I have read only good things. Or am I in denial. Ugh.

[DanL]

This is a tough situation. I think that I understand your husband's position as I had a period of time of continuously worse news that seemed to last for over a year -every time I went in, there seemed to be something else. It is hard to stay positive in the face of a news cycle that is dark. That being said, ignorance of a problem will not make the disease disappear, and foregoing treatment may or may not improve quality of life. What I can share directly is that treatment with Vidaza and Rituxan had very little negative impact on my quality of life, and I have met several people whose lives have either stayed the same or improved and probably lengthened as a result of treatment, and a few who have seen an overall decline with the former group being the larger number.

It is a highly personal decision, but I would say support him and give him time and data to get there. I always reverted to facts and best-odds to reinforce my conviction about pushing forward.

I wish you and your husband strength, courage, and conviction with any decision and action you take.