I'm relieved to report that I am getting my brain back in order. I'm accepting that I am middle aged. I'm actually taking a long look at many aspects of life. For instance, Steve has interviewed for a job in OKC. It would require us living apart until such time as I decided to pursue a job there. I don't know when -- or if -- that will ever happen. But I've decided I can't worry about that anyhow. I've got bigger fish to fry.
Today I took Dad to his appointment with Dr. A. We are so so sad that Dr. A is moving to Tennessee. But I digress. Dad called me shortly after 9 to tell me they'd called to say they could see him early. He was at Waffle House having his coffee -- something he rarely does these days. But he'd had his chest x-ray and time to kill so drove over to WH to drink with his buddies. I hurriedly left my office to meet him at the clinic. The temp was in the 70's and there was a pleasant breeze. I told Dad how good he looked. I meant it too. His color is back. He's gained a couple of pounds. He laughed and said it felt good to see his friends.
When Dr. A came in, it was the usual review. Dad told him about the incredibly painful leg cramps he's been having for the last couple of weeks. His potassium and other numbers all looked really good. Dr. A supposed it could be dehydration. He asked dad what he drinks at home during the day. Dad said Pepsi. Dr. A asked how many. Dad said around 4. I've never heard a doctor yell out before but Dr. A did it. I'm sure everyone in the clinic heard it. Then he started laughing. It was a contagious laugh from deep in his gut. He said that's why you're dehydrated. Caffeine is a diuretic and you take diuretics and you need to be drinking water or juice... not caffeinated drinks. He laughed and laughed. Then he told Dad to limit his soda to 2 a day. Dad laughed along. Then he stepped out to call the radiologist about the x-rays.
When he returned, he was beaming. It seems crazy to say that about a doc but he was. He told us that the mass had not grown any in the last 2 weeks and in fact, according to the radiologist, it was "fractionally smaller". He said it doesn't appear to be a cancer if this is the case. He was so pleased that the drug cocktail he and Dr. Homsi had contrived was working. I only wish he wasn't leaving now. Anyhow, he will see dad one more time in mid April before he relocates his family to Tennessee.
Dad returns to another x-ray and to see Dr. Homsi in 2 weeks. If it keeps going, I think his prognosis will imrprove. He was so happy as we were leaving. I knew it was a good day before the visit but he was on cloud 9 after it. And he swears he'll modify his soda intake. Dad admitted he wasn't truthful with Dr. A about the number -- and that it was more like 6 or 8 a day. He laughed again about it. And he was pleased that his gaffe made Dr. A laugh so darn hard. He's going to miss these doctors too. They've saved his life.
Looking back now over the last 5 months and 21 days since I first signed the papers to have dad resuscitated, I have wondered why I did that. And the doctors in ER were so grim about his prognosis. But he wanted (and wants) to live. Each time he came into consciousness he would proclaim he had to live to care for Mom. And live he did. My sisters and I went with our gut. It's been a long road -- and it will continue to be a hard road. But we'll take these little victories when we get them. Today was a victory.
Tuesday, March 22, 2011
Thursday, March 10, 2011
It continues to grow
This week has been a doozy. I took dad for lab work, CT and a doc appointment. I don't think I've mentioned that his doctor, one of the 2 we really like, is leaving... and the other is in negotiations but expects to leave also. Today we saw the one who hasn't yet made up his mind.
The CT showed the mass in his lung has grown about a half inch since January. Dr. H said he isn't quite sure why. The biopsies have not shown cancer but it can't be ruled out. It may be that the fungal infection in his lung is masking a cancer. The only real way -- and we've known this all along -- is to do a surgical biopsy where a wedge of his lung is removed and tested. Dad won't likely survive such a procedure becuase his lung is too brittle. So the 3 options for now are to do surgery (yeah, well not really), do nothing (lt it grow and he'll die from it sooner rather than later), or continue to throw drugs at it and hope something stops it.
Last week, I finally got word from Pfizer that he was approved for the RSVP program and getting the $3k a month drug (60 pills) free through December. His co-pay was nearly $1000 a month so this saves him about $9000 this year.
Anyhow, he's taking vfend (mentioned above). The problem with this infection is that it could be bacterial as well. If that's the case, he needs a steroid. But steroids make fungi grow. So he is getting vfend and a steroid and a low dose antibiotic to help maintain balance. This will likely mess up his stomach in a week or so which means we have to be on the lookout and catch that early if/when it does.
I just called the doc's office a bit ago. Dr. H had said that normally in a lab, the petri dishes are grown 3 days then destroyed. In this case, he wants to grow it out longer to see if anything else shows up. So I was asked to call and remind them to tell the lab to save it. So that's done.
My oh my, life is throwing curve balls. Dad and I are in pretty good shape after all the poking and prodding. He goes home and I head back to work. I am pleased becuase we are ahead of schedule -- only missed 3 hours of work this time. I had forgotten to turn the volume up on my ringer so missed a call. It was mom calling for the doc's report. Unfortunately (or fortunately depending on how you look at it) she forgot to hang up the phone. So I heard the conversation that followed. She was crying and talking about personal things -- like moving to another house. This has been a point of contention with them since they sold their home and Kris sold hers and they all moved in together. It's something mom wanted. But now she wants their own place. And we can't figure out why. She is completely incapable of taking care of herself -- she can't effectively use a fork. She's still in denial about blindness and hoping to regain her vision. I let her hang on to that hope most of the time though sometimes I just want to yell at her to stop with it. But she has nothing else to really cling to. Except all the little nagging things that dad does.
One of those things has to do wtih an affair she has imagined him to have. Lord help us all, this affair supposed happened recently and with a lady from church. Lord help us, did I saw that already? Mom brings this delusion up regularly and it drives us all nuts. Somehow I am the one who told her about it and now I am denying it. Anyhow, she's afraid she's going to lose dad to this fictious person.
Rather than drive to work, I detoured to their house. I sat on the couch and told mom all teh things the doctor said. She thinks the doctor is incompetent though he has worked for MD Anderson. Conversations digress with her rather rapidly. But I hang on. When she gets mad, she gets up and uses her walker and walks to the potty chair in the bedroom. Sure enough, she raised her lift chair and did just that -- and griping about it all the way. She wants dad to have the surgery. I told her that was foolish since he would likely die. She's adamant. I left her on the toilet and went back to the den. I apologized to dad though I don't really know why. I guess I am just sorry that we are all in this mess. But they are so lucky to have me and my sisters. He knows it. Mom doesn't. I hope that if I am in their condition someday that there will be someone to take care of me. But I'm getting off topic here.
So I talked for a few more minutes with dad and then headed to work. I don't know if this welbutrin is starting to work though I think it is. I have anxiety issues at night still... they haven't calmed down yet. I am in a constant state of fog which I attribute to the meds slowly changing up the firing patterns of the synapses in my brain. I don't know if it's better to be dulling the edge or not. I'll give it another week.
The CT showed the mass in his lung has grown about a half inch since January. Dr. H said he isn't quite sure why. The biopsies have not shown cancer but it can't be ruled out. It may be that the fungal infection in his lung is masking a cancer. The only real way -- and we've known this all along -- is to do a surgical biopsy where a wedge of his lung is removed and tested. Dad won't likely survive such a procedure becuase his lung is too brittle. So the 3 options for now are to do surgery (yeah, well not really), do nothing (lt it grow and he'll die from it sooner rather than later), or continue to throw drugs at it and hope something stops it.
Last week, I finally got word from Pfizer that he was approved for the RSVP program and getting the $3k a month drug (60 pills) free through December. His co-pay was nearly $1000 a month so this saves him about $9000 this year.
Anyhow, he's taking vfend (mentioned above). The problem with this infection is that it could be bacterial as well. If that's the case, he needs a steroid. But steroids make fungi grow. So he is getting vfend and a steroid and a low dose antibiotic to help maintain balance. This will likely mess up his stomach in a week or so which means we have to be on the lookout and catch that early if/when it does.
I just called the doc's office a bit ago. Dr. H had said that normally in a lab, the petri dishes are grown 3 days then destroyed. In this case, he wants to grow it out longer to see if anything else shows up. So I was asked to call and remind them to tell the lab to save it. So that's done.
My oh my, life is throwing curve balls. Dad and I are in pretty good shape after all the poking and prodding. He goes home and I head back to work. I am pleased becuase we are ahead of schedule -- only missed 3 hours of work this time. I had forgotten to turn the volume up on my ringer so missed a call. It was mom calling for the doc's report. Unfortunately (or fortunately depending on how you look at it) she forgot to hang up the phone. So I heard the conversation that followed. She was crying and talking about personal things -- like moving to another house. This has been a point of contention with them since they sold their home and Kris sold hers and they all moved in together. It's something mom wanted. But now she wants their own place. And we can't figure out why. She is completely incapable of taking care of herself -- she can't effectively use a fork. She's still in denial about blindness and hoping to regain her vision. I let her hang on to that hope most of the time though sometimes I just want to yell at her to stop with it. But she has nothing else to really cling to. Except all the little nagging things that dad does.
One of those things has to do wtih an affair she has imagined him to have. Lord help us all, this affair supposed happened recently and with a lady from church. Lord help us, did I saw that already? Mom brings this delusion up regularly and it drives us all nuts. Somehow I am the one who told her about it and now I am denying it. Anyhow, she's afraid she's going to lose dad to this fictious person.
Rather than drive to work, I detoured to their house. I sat on the couch and told mom all teh things the doctor said. She thinks the doctor is incompetent though he has worked for MD Anderson. Conversations digress with her rather rapidly. But I hang on. When she gets mad, she gets up and uses her walker and walks to the potty chair in the bedroom. Sure enough, she raised her lift chair and did just that -- and griping about it all the way. She wants dad to have the surgery. I told her that was foolish since he would likely die. She's adamant. I left her on the toilet and went back to the den. I apologized to dad though I don't really know why. I guess I am just sorry that we are all in this mess. But they are so lucky to have me and my sisters. He knows it. Mom doesn't. I hope that if I am in their condition someday that there will be someone to take care of me. But I'm getting off topic here.
So I talked for a few more minutes with dad and then headed to work. I don't know if this welbutrin is starting to work though I think it is. I have anxiety issues at night still... they haven't calmed down yet. I am in a constant state of fog which I attribute to the meds slowly changing up the firing patterns of the synapses in my brain. I don't know if it's better to be dulling the edge or not. I'll give it another week.
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