Background: Diagnosis and Emotions 2011
We tried not to get too worked up when the concern came from Todd's family doctor about his lower blood counts. The Hematologist, at first, said he didn't think Todd had anything to worry about.
Then, the numbers came back, and it was MDS. We were stunned. The average age of a person diagnosed with MDS is over 60 years old. (Cleveland Clinic, web). Todd was only 42! It didn't seem possible. We were torn by the fact that his prognosis without treatment was about seven years, but then why would the doctor take a "wait and see" approach? This didn't sound right.
Todd really had no outward symptoms. While he might have claimed some fatigue, he had no other symptoms that would make us think something was wrong. We really have to thank his family doctor, who is now retired, for catching the declining blood counts through his routine blood tests. His quick action allowed Todd to be diagnosed so early, before any real symptoms or progression had taken hold.
With a low risk diagnosis, we felt somewhat assured that things would be alright for the time being. However, as the diagnosis set-in, we decided to seek a second opinion.
While Ohio State was closer, we chose Cleveland Clinic because of their reputation for being one of the best Cancer Treatment Centers in the World. We had friends that had been treated there for various conditions with great success.
Luckily, Todd had a two-week recreational trip planned right after the diagnosis, which helped give him time to think about it, and work-out his feelings.
We had to decide whether to tell our children what was going on now, or wait until his condition progressed. Unfortunately, we didn't really get to think it over, as our emotions just spilled over into our everyday lives. Todd was really worried about his future as a dad and husband to our family, and we could no longer conceal the news.
We have always made it a point to have open dialogue in our home and to never lie to our children. We couldn't change that now. They were old enough (10-16) to digest a small truthful amount of what was going on.
I think it was hard for them to grasp what was going on. Todd wasn't sick, laying in the bed all the time, or in the hospital. The MDS was something happening inside of Todd at the molecular level where no one could see it. I think he thought we all weren't sympathetic enough in our thoughts and actions, which caused some tensions, but none of us really understood his emotions. The children didn't understand that Dad needed extra love and comfort. They were just being children, who by nature tend to be selfish. This is not to say that they weren't loving, comforting, and sympathetic. I just think it didn't translate to be enough to him at the time.
Did it affect our family? Yes, but that is life. Todd's diagnosis was there and we had to start adjusting to it, whatever that took. You can't plan for everything. I still don't know whether it has added or contributed to some of the personal issues our children are experiencing today or if growing into teenagers was enough to do that. I hate to say it, but we did have some tough problems with behavior during that time. It was so hard for us to understand, and still is.
I prayed: "Why do we have to deal with all these 'teenage' problems while dealing with Todd's diagnosis. Don't the kids understand we have enough on our plate right now?" But, in all fairness to them, they weren't trying to do that; I understand that now. They were just being teenagers, with their own struggles and limited coping skills.
So, a word of advice if your family is dealing with a cancer diagnosis or crisis:
1. Get counseling. Either individually or as a family; whatever is necessary. Talk about it openly. Ignoring difficult feelings and problems only allows problems to get worse.
2. Expect a lot of ups and downs and a ride range of emotions. This is true for the entire family, but especially for the person diagnosed and for the support person or spouse. If you are the spouse or care-taker of the patient, then rally the wagons and get a group of close friends to support you!
3. Expect regular problems to occur. Life goes on and the children will be children and go through the typical phases and problems that occur with whatever stage of development they are in. Get additional help from family, church staff, and friends. This is the time to start accepting those offers of help.
Sources:
Cleveland Clinic Website
http://my.clevelandclinic.org/disorders/myelodysplastic_syndrome/hic_myelodysplastic_syndromes.aspx
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