So yesterday we tootled off to the Doctor for Steven's regular checkup as well as to sort out some of the issues we had. I won't go into details, but Dr J got our point, there will no longer be two pcr tests done at the same time and we are not actively looking for another doctor :-) We sadly agreed that doctors (generally speaking) do not care about their patients, just the money. It's sad to see this and its difficult to have my child in the care of someone that I believe feels this way too. He is just a number there, someone to see every few months who occasionally arrives with a mother that is not too happy about something.
I really enjoy going to these appointments with Steven, not so much to be in on the appointment, but I love the time we get to chat on the way to and from the office. Steven chats away about all sorts of stuff. Yesterday on the way to the doctor, I had to tell him that his results were still good, going in the right direction but not pcru. Evidently I put it across to him in a way that he felt ok. At first his face got tight and he was frowning, but after a few sideways glances from him, and me burbling on, he relaxed and seemed to ok take it just fine. I really am not worried about his results at all and am really glad he picked up on that.
He will have to take charge a bit more and remind them when he goes in for his OHSU pcr's that they must not send to the local lab as well. This is good too because it gets him more involved in his care and decisions. When all this hit us, the diagnosis and the terror, I took the organising, sorting and deciphering on me. I wanted to save him from having to deal with all this - he had just moved out, just started his life in the real world and I did not want him to have this too. Now, in retrospect, maybe I should not have done this. I don't know. Somedays I think it's right - some days not. But I am slowly handing parts to him to deal with. I do love that he forgets doctors appointments, does not sit and worry too much about this and says things like his little silver z-car is his future midlife crisis vehicle, so he is keeping it! I love when he does not let cml interfere in what he does, how hard he works. I love that he has plans in his mind for 40 years from now.
All day yesterday there was a radio telethon raising funds to send kids with cancer to camp and also to help find a cure. This, of course, was on the radio when I was driving to and from meeting with Steven. Listening to some of their stories made me so grateful about everything. Yes, everything. The announcer has not got a child with cancer and he kept saying how he could not imagine dealing with having a child with cancer, that it must be so difficult, so painful as a parent to watch your child go through this. Geez, he even had me feeling sorry for myself! Until the next story aired - a couple with twins, 3 years old, both with AML. My self pity shrivelled up super quickly!
But yes, at times it is hard, and its harder when I do have bouts of self pity and "if only" etc and then I feel selfish for feeling like that. So I try not to feel selfish, then anger steps in and the selfish feeling follows that again. And so we go around inside my head for a spin. Fortunately those feelings dont last too long any more, but when they are around, they are real. The hardest part is realising that there are so few people that I can talk to about this without sounding like a full on pity party...... and even then, just verbalising or writing it sounds silly.
Yesterday, just listening to that radio show nearly got me weeping openly because of those stories I heard, because I was so grateful, because this was and is not a family I want to belong to and because it's definately not a family I want my kid to belong to. Why did I not turn that radio off? Why did I keep listening and teetering on that edge? Because that's just how life works at times now. It was both good and bad for me - but mostly good to hear through each story how very fortunate I am.
We now have a break until around mid January - NEXT YEAR! before having to deal with another test..... awesome!
Love and light and a good few smiles today