Always Read the Fine Print

"Where to do this--Indiana or Ohio--is a complicated decision for us. Kevin works in another state so we have to weigh that in our planning. We need to know an average treatment day. what treatment is going to look like--how long could he be here for a treatment, what other appointments will there be--excluding possible complications--how often will he need to come to the clinic..."

I don't know how to be more explicit. Twice we asked our questions, each of us with a pencil poised over a notebook where we recorded the answers. We asked for the straightforward answers, no sugar coat, no trickle effect. Just lay it out so we can sort it into a rough plan. (I like a plan; we've established that fact.)

Kevin and I walked out of 2 appointments with the impression that he would have a 3 1/2 hour treatment, go back in 2 days to have the pump removed and see the inside of the clinic again in 12 days for the cycle to repeat. Given the way we asked about scheduling, we guessed he would see the doctor for ongoing evaluation on treatment days.

Today the mailman delivered a schedule from the clinic. The 3 1/2 hour treatments have morphed to 5 hours. Every other treatment week he will go back on Thursday for an injection. Each week off treatment brings a check-up with the doctor or nurse practitioner. He went from the expected 8 appointments for these first 2 cycles to 14.

Kevin is tired of it already, he's dreading it all and this is just one more kick. He thought he had planned as much as possible to accomodate work and health realities and now the clinic has upped its side of the demand.

So now we are rearranging plans for help in the daycare so I can go to appointments with him and travel plans to and from his work in Ohio.

There are definite communication problems between us and the oncology office. I don't know if it's as simple as not using the same terms or if we truly are not being heard. What I've learned from this is to be more explicit. And then say it back. Twice. Use diagrams if necessary.

And read the fine print. I don't know where this information was in the fine print but we had to have missed it somewhere.

I knew being on the customer side of a medical transaction was not going to equate to being "always right"--there are so many things here that are new to our life. Things we don't know enough about, don't like, didn't choose and have to come to terms with as simply being what they are. I can accept that readily. What I didn't expect--and can't accept--is this premise that having cancer should make Kevin blind, deaf and dumb on matters of his own care.