Been a wild day, but an eventful one. Me and Denise went to UT to my appointment with Dr Bushkell that Sally recommended. We both liked him. I stripped down (except the underwear) and he examined me, can't recall word or term, but Denise said it meant all over or wide spread. I also had him check my scalp and the sores and hair loss, which he said something about stress and that was causing all that. Had him freeze a place off my forehead and he cut a place off my back, I'm assuming he stitched it back, not sure. He decided to take a biopsy of my left leg and I'm to do fasting blood tests Monday. Maybe that is how they stage this type of Non Hodgkin's Lymphoma, not sure there either. Him and Denise talked, I just listened, Denise will interpret all of it for me. Thing is, some comfort may be on the way. He prescribed a special shampoo, creams, ointments, and something to relax me a bit at night to go to sleep... which ain't likely to happen just yet. I told him I was one of Dr Zic at Vanderbilt patients, but it is just too far to drive, ain't like it can be cured anyway. Zic is a good doctor and one of the leaders in this type cancer.
So I have my blood tests Monday and combined I guess with the biopsy, they can stage it. Bushkell knows Zic and he said he was going to talk with him. I have a Narrow Band UVB machine, but side effects are Squamous Cell Carcinoma, aka, what my throat cancer was, and I pray I am using the correct term... was. He stitched up my leg, said he could tell I was feeling it and asked if I was ok. I told him I could feel it but I've felt worse, not a problem. I think I may have screwed up the area though tonight. If I did I did, its a small hole any way.
From Sunday night until Thursday night, 9 1/2 hours sleep, slept right through the storm Thursday night, got in bed probably about 12:30-1:00am and tonight, probably 2am by the time Megan is suppose to call to update me again on mom. I come back home about 9pm, but by 11pm mom was back in A Fib and sick at her stomach, so back I went, then again at 12:15 to measure out the med dose to help her with the pain. Now she is nervous and loaded with anxiety, so I wait for Megan's call that may come at 2am to see if the pill I had Megan give her that I already prepared works. I stand ready to go back up there to attempt to figure out yet another dosage.
So now for something that happened today.
We got back from Knoxville and when we got home Megan had company, Tina, Charlie, and William were there. Mom was staring at the ceiling, we were all more of less just talking. Megan went into the Kitchen to eat the food we brought for her. Out of the blue, as clear as a bell, mom said, "Is Gene out there?" It all got quiet. "Is Gene out there in the garage?" Tina spoke softly and said yes. "Is he ok?" Again Tina softly said yes, he is fine. Mom made a few more questions and statements, then wanted to know if dad was smothering and wanted somebody to check on him. Then she ask if dad was dead. The room was quiet. She said, "Anthony, tell me the truth, is Gene in the garage?" I thought and finally told her, "No, he's not in there momma." "Is he dead? Tell me the truth." I said, "Yes, dad has been dead almost 4 years now mom." She was silent. "Dad is ok though, he is great, he is in Heaven with God now, but I'll bet he is looking down."
"Is he smothering?" mom asked. I thought about when he was on the ventilator, mom worried about him smothering, that has worried her so much. "No, he isn't hurting anymore, he is probably singing and dancing. You will see him again one day, so will I and all the rest of us... in God's own time though. Where daddy is nothing can ever harm him or even bother him now. I'm sure he will be waiting for us one day, just as I'm sure he is watching down at us." The room grew quiet again and mom stared at the ceiling silently, her mouth moving from side to side, she just laid there. Finally she said, "So Gene is dead." I said, "Yea mom, dad is dead, but he is alive in the real world."
I still don't figure just what happened. I maybe should have lied, but then again she demanded the truth. No tears ran down, she seemed to be satisfied, either that or came back into her mind. Maybe it was her way of testing us, or maybe she saw something we didn't. As the day progressed, so did mom. She done so well today after that. Tonight though Megan calls, I've been up there twice since I left, and expect a another time. I just called and mom is better. Thank God. After 2 days of no eating and hung somewhere between life and death, today became a good day as she came back to herself.
It is a hard job trying to figure out what to give, when to give, and how much to give. You want to keep her comfortable yet cognitive. I have no idea what meds do what in power, but Denise has told me and the Hospice nurse labeled all the meds and what they do. I know what it is like to be where mom is, but I never knew what it is like to be where Denise was/is. When we started this we knew, and was told, the burden would be on us for caregivers. Would it have been easier to care for mom here, yes. Did we have a spare room, yes. Was that what mom wanted, no. The 1st two questions together do not, I repeat, do not, equal the last one. Is that what she wanted, she wanted to go home. I was the same way, if I were to die, I wanted to be home. It is hard when one doesn't want to send them into lala land, yet leaving them in pain isn't good either. What works today may have to be altered tomorrow. Each night, when I say my prayers before I sleep, my prayers now include a plea for help. To allow me to do no harm while at the same time take care of mom, who knows, maybe even build her up. But that seems impossible now, we seem to not be able to get her out of A Fib. The heart looks to get her before the cancer does.
This has led me to an even deeper understanding and respect for Denise and any caregiver. It is hard to fight death every day, hard to be sick, hard to even see the light at the end of the tunnel after so long. But I tell you truth, as straight as I can, it is equally hard to be the caregiver. It is so hard to see a loved one struggle and slowly wither away, and not be able to stop the pain. Life is full of moments, yet few moments define one and change one. This is one of those things and you will never come out of it without scars. Scars can signify a battle turned bad, or badges of honor. We may not get to pick these moments but we do get to pick how we become after the changing moments have passed.
So I have my blood tests Monday and combined I guess with the biopsy, they can stage it. Bushkell knows Zic and he said he was going to talk with him. I have a Narrow Band UVB machine, but side effects are Squamous Cell Carcinoma, aka, what my throat cancer was, and I pray I am using the correct term... was. He stitched up my leg, said he could tell I was feeling it and asked if I was ok. I told him I could feel it but I've felt worse, not a problem. I think I may have screwed up the area though tonight. If I did I did, its a small hole any way.
From Sunday night until Thursday night, 9 1/2 hours sleep, slept right through the storm Thursday night, got in bed probably about 12:30-1:00am and tonight, probably 2am by the time Megan is suppose to call to update me again on mom. I come back home about 9pm, but by 11pm mom was back in A Fib and sick at her stomach, so back I went, then again at 12:15 to measure out the med dose to help her with the pain. Now she is nervous and loaded with anxiety, so I wait for Megan's call that may come at 2am to see if the pill I had Megan give her that I already prepared works. I stand ready to go back up there to attempt to figure out yet another dosage.
So now for something that happened today.
We got back from Knoxville and when we got home Megan had company, Tina, Charlie, and William were there. Mom was staring at the ceiling, we were all more of less just talking. Megan went into the Kitchen to eat the food we brought for her. Out of the blue, as clear as a bell, mom said, "Is Gene out there?" It all got quiet. "Is Gene out there in the garage?" Tina spoke softly and said yes. "Is he ok?" Again Tina softly said yes, he is fine. Mom made a few more questions and statements, then wanted to know if dad was smothering and wanted somebody to check on him. Then she ask if dad was dead. The room was quiet. She said, "Anthony, tell me the truth, is Gene in the garage?" I thought and finally told her, "No, he's not in there momma." "Is he dead? Tell me the truth." I said, "Yes, dad has been dead almost 4 years now mom." She was silent. "Dad is ok though, he is great, he is in Heaven with God now, but I'll bet he is looking down."
"Is he smothering?" mom asked. I thought about when he was on the ventilator, mom worried about him smothering, that has worried her so much. "No, he isn't hurting anymore, he is probably singing and dancing. You will see him again one day, so will I and all the rest of us... in God's own time though. Where daddy is nothing can ever harm him or even bother him now. I'm sure he will be waiting for us one day, just as I'm sure he is watching down at us." The room grew quiet again and mom stared at the ceiling silently, her mouth moving from side to side, she just laid there. Finally she said, "So Gene is dead." I said, "Yea mom, dad is dead, but he is alive in the real world."
I still don't figure just what happened. I maybe should have lied, but then again she demanded the truth. No tears ran down, she seemed to be satisfied, either that or came back into her mind. Maybe it was her way of testing us, or maybe she saw something we didn't. As the day progressed, so did mom. She done so well today after that. Tonight though Megan calls, I've been up there twice since I left, and expect a another time. I just called and mom is better. Thank God. After 2 days of no eating and hung somewhere between life and death, today became a good day as she came back to herself.
It is a hard job trying to figure out what to give, when to give, and how much to give. You want to keep her comfortable yet cognitive. I have no idea what meds do what in power, but Denise has told me and the Hospice nurse labeled all the meds and what they do. I know what it is like to be where mom is, but I never knew what it is like to be where Denise was/is. When we started this we knew, and was told, the burden would be on us for caregivers. Would it have been easier to care for mom here, yes. Did we have a spare room, yes. Was that what mom wanted, no. The 1st two questions together do not, I repeat, do not, equal the last one. Is that what she wanted, she wanted to go home. I was the same way, if I were to die, I wanted to be home. It is hard when one doesn't want to send them into lala land, yet leaving them in pain isn't good either. What works today may have to be altered tomorrow. Each night, when I say my prayers before I sleep, my prayers now include a plea for help. To allow me to do no harm while at the same time take care of mom, who knows, maybe even build her up. But that seems impossible now, we seem to not be able to get her out of A Fib. The heart looks to get her before the cancer does.
This has led me to an even deeper understanding and respect for Denise and any caregiver. It is hard to fight death every day, hard to be sick, hard to even see the light at the end of the tunnel after so long. But I tell you truth, as straight as I can, it is equally hard to be the caregiver. It is so hard to see a loved one struggle and slowly wither away, and not be able to stop the pain. Life is full of moments, yet few moments define one and change one. This is one of those things and you will never come out of it without scars. Scars can signify a battle turned bad, or badges of honor. We may not get to pick these moments but we do get to pick how we become after the changing moments have passed.
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