Dale called mid-day all excited because his blood levels went up, from yesterday's 300 to today at 2800, so he felt better and he would get a bit of jello and broth. He felt good. Notice the past tense there. Once I got to him after work, he had the jello and broth and once again, it became a bout of diarrhea quickly. His system not only has rejected blood for a few days, it rejected the bit of jello. What in jello could bring diarrhea on? He is pretty discouraged with his poor body acting so poorly. Neither of us had a real good nights sleep & rest apparently, because we have been pretty fragile through our days.
Dale told the physicians to work on the bone marrow transplant insurance issue--they gave him a bit of hope with a word of sometimes it could be "waved." We will work on that part. He knows enough to ask questions of caregivers and is receiving some answers. Makes it better for him to understand what is going on.
Today I felt very supported by co-workers: one sheepishly came to my office this morning and told me others may not know what to say, but that he cares. Whoa. That means a lot to me. Another one who I saw during the day who I had asked to burden him with another duty he normally would not accept, as I thanked him, he told me "Only for you, Jan, only for you." Another Whoa. That means a lot to me. Another told me she read this blog and Dale's blog and it was really a love story between us. Whoa. Yet others come by extending warm wishes, hugs, and listening ears, and walking buddies. Whoa, once again. My extended family of friends at work. Thank you. I need you. Thank you.
Tuesday, August 30, 2011
What else?
My visit yesterday was sad. Dale's body is not taking in the red blood like it should. When he was admitted to Huntsman from the University's ER Saturday, they said his count was zero. I nodded and have no idea what that means. The nurse last night explained a bit. The absolute neutrophil count was zero, up to only 200 yesterday (300 this morning) and should be 1500. They have given him at least 4 pints of blood that I know of, platelets, and antibiotics, and then eventually nutrients of some sort in a big white bag (TNC?). He will not be able to eat anything until the colitis and diverticulosis is in check as well as other things I have no knowledge about. Then they will gradually bring liquids for him, then "thicker" liquids and so on until his system can handle food.
She told us there were at least five other patients on the floor that had the same issues and so it is not unusual. I think it is unusual. It is for us. Not in the game plan.
Insurance for the bone marrow transplant called and said our insurance says it is out of network and will not cover it. HUH? Out of network? The U of U and Huntsman not in same network? Really? Insurance is another hassle to deal with on this journey. I will be asking a lot of questions today and figuring out what else to do. Tri-care Prime vs Tri-care Standard is the level of insurances that are conflicting about networks and coverage. How can insurance pick and chose if health care is necessary?
People ask what they can do for us, and my only reply is that I have no idea, and that this is all a mess. I am barely surviving moment to moment. Stress is powerful and overwhelming, yet a mechanism for survival. It is manifesting itself in my total existence.
She told us there were at least five other patients on the floor that had the same issues and so it is not unusual. I think it is unusual. It is for us. Not in the game plan.
Insurance for the bone marrow transplant called and said our insurance says it is out of network and will not cover it. HUH? Out of network? The U of U and Huntsman not in same network? Really? Insurance is another hassle to deal with on this journey. I will be asking a lot of questions today and figuring out what else to do. Tri-care Prime vs Tri-care Standard is the level of insurances that are conflicting about networks and coverage. How can insurance pick and chose if health care is necessary?
People ask what they can do for us, and my only reply is that I have no idea, and that this is all a mess. I am barely surviving moment to moment. Stress is powerful and overwhelming, yet a mechanism for survival. It is manifesting itself in my total existence.
Monday, August 29, 2011
New room view
Next room view. Was hoping for season changes before next room change but not so. Blood transfusion abounds this visit.
Sunday, August 28, 2011
Watching Dale slowly die
Huntsman Cancer Center gave him blood and oxygen through the night. His voice is better, he is more stable. Duh! They take blood out for test after test, his bone marrow is compromised because of the chemo and they expect him to keep developing blood enough to build up for next chemo. Seems it should be standard procedure to add a pint of blood on the way out, "needed" or not. Maybe no one else in their data collection has had so much going on, but I suspect, we should have been advised better on expected recoup issues.
I made it home by 11:00 PM, should have called Mom, but did not-I barely made it in myself. It took everything I had to drive safely home. I kept praying that people would stay out of my way as I drove. They did and I also remembered where I live. Auto pilot.
Watching Dale slowly die is a lousy experience. I don't care what people say. It is lousy. He may recover in a year or more, he may not. He may get a few more months of life granted because of the cancer treatment. He may not. Amazing science does not know nor tell the whole story. There is so much more to cancer treatment than the hospital and medical sides.
This week Dale had constant watch from great neighbors giving their time to him. I can't thank them enough. This is going to be a long long process. I don't see them continuing with so much assistance for all of that time. If this is wearing on me, it must be wearing on them. However, they may have more heart, compassion, and time than me. I am thinking how to reconfigure rooms and furniture to make Dale more comfortable and able to be alone a little between hospital stays or at least feel like it is his space.
I made it home by 11:00 PM, should have called Mom, but did not-I barely made it in myself. It took everything I had to drive safely home. I kept praying that people would stay out of my way as I drove. They did and I also remembered where I live. Auto pilot.
Watching Dale slowly die is a lousy experience. I don't care what people say. It is lousy. He may recover in a year or more, he may not. He may get a few more months of life granted because of the cancer treatment. He may not. Amazing science does not know nor tell the whole story. There is so much more to cancer treatment than the hospital and medical sides.
This week Dale had constant watch from great neighbors giving their time to him. I can't thank them enough. This is going to be a long long process. I don't see them continuing with so much assistance for all of that time. If this is wearing on me, it must be wearing on them. However, they may have more heart, compassion, and time than me. I am thinking how to reconfigure rooms and furniture to make Dale more comfortable and able to be alone a little between hospital stays or at least feel like it is his space.
Saturday, August 27, 2011
Temperature up
What do I write about now? ER rooms are long, uncomfortable visits. Temperature was up, zero energy, and infusion port had open blisters so here we are. I need a nap. We had already been to VA Hospital for some hearing loss tests (unrelated to mantle cell) early this morning so this is second trip. What happens if I get sick? I have a headache myself, but I don't count though. I am on call all the time. I suppose any caretaker is.
The last two days, Dale's blood pressure has been okay, weaker each day, and only small bouts of diarheea. I learned how to flush out the port but the dressings look infected to me. Maybe that is where temperature comes from. White blood count is down enough she said to be concerned. Dr. Is talking with hematology for further instructions. I may be going home alone. Sleep sleep sleep is what I need. He sleeps. I wait.
Huntsman stay it is. Now we wait for that to happen.
The last two days, Dale's blood pressure has been okay, weaker each day, and only small bouts of diarheea. I learned how to flush out the port but the dressings look infected to me. Maybe that is where temperature comes from. White blood count is down enough she said to be concerned. Dr. Is talking with hematology for further instructions. I may be going home alone. Sleep sleep sleep is what I need. He sleeps. I wait.
Huntsman stay it is. Now we wait for that to happen.
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