Newest Expectation

I got the news today. My newest grandson will be born sometime around Memorial Day. His name will be John Paul after my son's favorite Pope. So I guess I'll leave all the pink frillies on the shelves.

Weird

My ex is here, and with the odd mood that I have been in it's enough to put me over the edge. But while we were talking about Laura's death he told me that he and his new wife had been talking and if I should get sick again I could always go stay with them. They would take care of me. This is weird on all sorts of levels.

Thank God for Hospice and Long Term Care insurance!!!

Here's to You Mrs. Robinson

She reminded me of an ornate bone china tea cup. She was tiny and fragile, but beautiful and quite capable of standing the hot water. Her spirit was elegant, and she dressed herself in tact and kindness as much as in the designer clothes that she was somehow able to find at outlet malls and thrift stores. She came into the support group around the same time that I did. Her diagnosis was not much different from mine. She only had one tumor and fewer positive nodes, but she was er/pr- and her2/neu+++ like I was. We took the same chemo, but mine was dose dense and only lasted 4 months where her's was stretched out for the full six months. I was never offered the option of a lumpectomy, but in the beginning that is what she had. Though, in the end, she was never able to get a good reconstruction and opted later to have bi-lateral mastectomies. My radiation was targeted to reduce the scatter and had three fields and no boost, so I only had to endure 28 treatments. She had the boost and went for the full 33. After it was all done and we'd met, we decided that if we hadn't beat the cancer, we might as well just rejoice in the time we had left. We had talked about walking the 3Day together, but it was the weekend after she had the bilaterals, so she didn't go. We decided that we should do it together another year, but that year didn't come. After the 3Day my health met some challenges, but her's went into a tailspin. First they found metastisis on her spine and then her ribs. The subsequent radiation treatments were much harder for her than the original ones. But before she was finished with it they found mets in her lungs and then in her brain. She said that we should still rejoice in the time we had, afterall we'd gotten to know each other. Last night, while it was snowing a beautiful wet snow, Laura Robinson went home to be with the Lord. This is awful! My friend is gone and my heart is aching. I can't believe that I can't just get on the phone and say "meet me at Starbucks" or "let's go see that movie". But it is much worse than that! I am shaken in the very core of my being. Once again I am faced with the brutality of the disease that we shared, and again I must confront my own mortality. This doesn't describe it...there are no words that accurately recount the layers of my grief or my terror. Tomorrow night when I put my arms around her children, will they wonder why they are burying their mother and my children still have theirs? Will they be willing to accept whatever comfort that I might find to bring to them? Will they want to see me there? Would it be worse if I didn't go? Would they think that I didn't care about their mother? I care, but I'm made self consious by the disease that we shared and only I survived. And my friend is gone, and they no longer have a mother because we were two of one in seven.

Laura said "Keep living, don't let this make you dead while you are still walking around." So, here's to you Mrs. Robinson. It will be hard to go on without you.

Blue

He was blue when I first saw him; not breathing. His tiny hands were clenched in what almost looked like a rage against being thrust from the only world he'd ever known. But it seemed like almost an eternity before he let loose with what almost seemed to be a whispered wimper, but he started turning pink. The nurse didn't hand him to me as I'd been expecting. Instead the whisked him away to a warmer where they could do whatever they needed to to keep him pink and breathing. But even then, there seemed to be something wrong. The blue tinge hung around his lips and ears and around the fists he kept clenched. There was an indented triangle just below his rib cage when he tried to breathe in and it was apparent that he was working too hard to get air into his lungs. The doctor didn't say anything to me. He barked orders to everyone around, but it seemed like other than working to clean up the mess of my body, he didn't acknowledge that I was there. Tears came, family came and went, the helicopter came and left with the small bundle that I'd barely gotten to see and not hold at all. Later, much later that week I finally got to hold him. He'd already been away from me. He'd already had a surgery. He was still working hard to breathe, but he finally opened up the fist that he kept clenched; it unfurled like a leaf in early spring. His finger were tiny, indescribeable, but all there. Tiny fleck on the ends were what his fingernails looked like. It has been 25 years, but I still can bring to mind the miracle of his tiny hand unfurling. His hands are large now and the fingers are long. He is skilled at so many things. I have his artwork on the wall of my cube. He plays the bass and guitar and piano. He can shoot a tow missle into a building that he can't see and he can bind up the wounds that are caused by the aggression of hatred. When he gets to be home he can cook meals for his son. Today is Matt's 25th birthday. He is celebrating it in Iraq.

End of the Week

It's the end of the week and I feel like I have done a bit of chasing my tail all week. I wanted to end it with a clean desk and a fresh start next week, but that isn't going to happen. What did go well this week was the doctor appointments. On Monday I saw my Oncologist and for the first time since I've met him, he's significantly lengthened the time between our appointments. I see that as a good thing. On Thursday I had an appointment with a new doctor that I will most likely make my new primary care doctor. I like her, but I'm going to think about it for a bit, and I am going to go to a few more of the doctors on my list. The biggest hold up with her is the Hospital that she's affiliated with. I've had a bad experience with them and I'm not too keen on spending anymore of anyone's money with them. I would really hate to be in the situation of needing to be hospitalized and being there. I wonder if going in there being assigned to a hospitalist that is answering to my PCP would make a great deal of difference. I did discuss this with her, hoping that she'd be able to assign me to a doctor at another hospital. While she didn't come right out and say it, I do think that she's under contract to refer her patients to them. What she did say was that in the event that she hospitalized me there and I felt that my care was undesirable I could call her office and she'd be there to mediate the situation. How much power would she really have? The trouble is, I do like her. And the office staff seemed easy to work with. The good thing about it was that I had 2 doctor visits this week without acquiring any more diagnosis' or needing any further testing. I'd like to make this a the norm for the year. I keep telling myself to make the small changes and maybe the large frustrations will go away.

Off and Running

The new year started with less than a bang. I was invited to parties, but after the holidays, I was just done. So I stayed home in my flannel pj's and watched a marathon of "Jon and Kate plus eight" on TV and thought about what it is that I want to accomplish this year. After careful consideration over a bag of microwave popcorn, I didn't come up with much of a plan; read five books, face up to things that are causing me unhappiness and see what I can do to change them, etc... It didn't take long for one of the things causing me low grade irritation to rear it's head. I didn't have refills left on one of my regular prescriptions, and the benefits pharmacy contacted my doctor for me to get it renewed. My doctor ignored the request. It wasn't unexpected, they always ignore the request. Ten days later I get an email from the pharmacy asking me to contact the doctor about the prescription and when I call, the receptionist tells me that I have to see the doctor to get a renewal. It always happens this way, but this was for a medication that the prescription hasn't changed on in 35 years. I can buy it over the counter, but it's cheaper to get the prescription. So, on Wednesday when I got back to work there was the email waiting for me. I called the doctor's office and was told that I'd have to come in and see the doctor for a renewal. I pointed out that I'd seen the doctor in November, and this was for a medication that was essentially an over the counter drug. Nothing doing...I have to see the doctor. So when I was put through to the scheduler I found out that my doctor wouldn't be available until March 3, I could get an appointment with the one doctor in the office that I don't like on Jan. 22. I should get the medications over the counter until then. I sat on the phone for about a ninth of a second and decided that this is something I can change. As a result, I'm back in the primary care grocery store. I went to the database for my insurance company and looked up doctors by specialty, and location. Then I went to the survey that my insurance company provides. Generally I don't trust survey's . If you are reading survey results you are reading mostly the oppinions of whomever has an ax to grind. The rest will be from a few gracious people who are in love with whatever is being surveyed. You never will hear from the 99% of people who have a middle of the bell curve, well rounded oppinion. With that in mind I chose 10 doctors who had glowing survey results and began calling. The first 3 were no longer taking patients. The next one, I got the menu and was trapped in it for about 5 minutes until I decided that I really wouldn't want to deal with it if I was sick. The next one, the phone was answered by a person. I asked her if there was a way that I could come in and meet the doctor without having to sign up for a physical. No, there isn't, but I made an appointment to discuss one of my pre-existing zebras with her. Thinking about it now, it's probably a good idea. I can get her ideas on the situation, and see if she and I are compatable in this area. Hopefully she will be as great as everyone who answered her survey thinks she is and I won't be seeing a doctor a week for a while. I was kind of unhappy that there isn't any real method to doctor shop. We are supposed to just randomly pick someone either through reports from our friends and family or whatever other method of casting the lot we can come up with. People shop for churches, and new cars. They try them out before they jump in with both feet. But for someone whom you are to trust with your health, you get a tip from Aunt Myrtle or close your eyes and let your fingers do the walking in the yellow pages. Then I started thinking about it from the doctor's point of view. It has got to be a bit like being a sitting duck. What happens when someone comes in whom they just can't stand. Or just someone who won't trust them, or lies or won't do what they say...they don't get a chance to screen patients either. I have an appointment for Thursday with the new doctor. I plan to be honest and upfront with her about the fact that I am doctor shopping. I will use the appointment to discuss where I'm at with the problem that I came in for and I will make a decision from there. It would be nice if at the end of this I actually do have a doctor that I feel good about going to.