I took mom to UT today to get her Chemo, but once again her blood was too low to take it. They gave her a shot to bring her blood up and done all the work leading up to giving her a blood transfusion tomorrow, chemo should resume next week. The Lymphoma is keeping her blood too low for treatment for her other cancer, and it is an aggressive one. I talked with Dr Kilgore and Dr Hanna when they checked mom out and the good news is they haven't given up on her just yet. They are trying things differently since the regular just would not work, and mom knows that.
There was five of the original people working there from the days I took my Chemo over 3 years ago. I saw Ruth, someone I had not saw since my treatments. I still remember our first time meeting when Ruth said something like, "If your looking for sympathy you will find none here and I have none. I will help you all I can but I will not feel sorry for you." Or something like that. I'm told Denise is a lot like that by friends who have seen her. Strong but kind, thats what they all were there. We waited in 3 different areas along with others, each waiting their turn. There are those there who are new and scared to death, some in kind of like shock, some in disbelief, and some in confusion. I really don't think there is a wrong way to feel or a right way to feel, one just does.
The last wait was at the end of the Hallway, in a little room, along with others. Most had someone with them. There was a lady who had been "cured" and it came back in her female parts. Her husband was with her, a big, strong, rough looking man... yet gentle. Several of the ladies were either bald or partially bald, and this one lady was bald and in a wheelchair. She looked in her thirties maybe early forties, but not old by no standard. She wasn't able to do radiation again and the chemo wasn't doing it solo either so they were trying out an experimental drug. She said it was her only choice, her only chance. One could see the worry in her husband's eyes yet one saw peace in her eyes and resolve in her calm voice. She was hoarse as was another lady. At first everybody sat in silence but my big mouth stopped that, even mom participated in the conversation, which really didn't have a theme and struck at some things most do not speak of. I thought it also important that we have a laugh and a lot of smiles. Most days it physically hurts to talk and the more I talk the worse it can get, but this, this was worth it I believe. The time passed by so much faster and for a moment people seemed to be with others that had a new normal forced upon them. I started the conversation with the lady's hair loss and told her how beautiful women are when they are bald. Her husband jumped in saying he told her that many times over. The other ladies who were older started in, some with hair, some just getting hair back.
I wasn't joking either, though I made a few jokes about my own feelings of when I was bald, and how my hair once back started to relocate. There is a beauty that most people acquire that screams out when one looks at their face. One hears listening to their words a peace, resolve, and true beauty, one that far exceeds the fake beauty of those who are held to be beauty in worldly aspects. My hair is long now and my beard fairly unkept, so they had no clue that I had been where they are now. As I told the ladies, if someone looks at me and this is all they see, they don't see me. One lady said that it was different for a woman to lose her hair. I corrected her and said I had always prided myself on my hair and one of my worse fears was to go bald, most men do. She said she had never known that.
We discussed fears and pains, hopes and trails... these things one usually doesn't discuss with those unaware. That includes close family and yes, even doctors and medical trained people. It is a bond that ties much like those who serve in war say they have as well. At the same time, by several people discussing these things their loved ones see and hear things they would normally not see or hear, which opens a deeper support level they can give. It also helps one know that they are not in a boat alone in a storm that rages on. Never have I ever seen that much hope, courage, fear, despair, kindness, hurt, healing, loneliness, love, peace, turbulence, faith in one place all existing at the same time. Never have I seen that much love and hope in people who some would think have little hope, and the evidence of God, and how close and personal one can become with the Creator. I had forgotten that. This is something listening to preaching won't get, going through the motions won't get, or speaking and reading won't get one. This is true and very personal faith. Anyone can praise Him when things are good, but not just anyone can praise Him during trials and tribulations... and that is sad. By the time this horrible disease strips away all one has, their pride, independence, safety, security, and usually financial, only one thing remains, Grace. In the loss of self one finds God, the real God. I can not imagine what one would do if they don't, nor would I try too.
So anyway, after we left a few hours later we stopped and ate at Applebee's... big mistake. Tonight me and mom both had acid reflux and for the first time since I cut the Prednisone in 1/2, I went back to a full dose of 10mg. The swelling was getting just too bad and tonight I can hardly breathe again. Whatever these restaurants are doing to our food, or crappy food they are serving, I'm out. Mom's worse fear too came true coming back as I dozed off or blacked out a few times, luckily with nobody on the sides of us when we drifted over. I think that came from lack of sleep though a little. I think it may be time to see a doctor about this arthritis, maybe even get my knees fixed. Injuries over the years to my knees, shoulders, elbows, and neck, throat, added to the arthritis the Lyme Disease left me with maybe its time to address. Last nights rain and season changing though is always rough. When we got back I done what is becoming a normal thing, something I had never done before, took a nap. :) Thing change I guess as we get older and more miles on us.
There was five of the original people working there from the days I took my Chemo over 3 years ago. I saw Ruth, someone I had not saw since my treatments. I still remember our first time meeting when Ruth said something like, "If your looking for sympathy you will find none here and I have none. I will help you all I can but I will not feel sorry for you." Or something like that. I'm told Denise is a lot like that by friends who have seen her. Strong but kind, thats what they all were there. We waited in 3 different areas along with others, each waiting their turn. There are those there who are new and scared to death, some in kind of like shock, some in disbelief, and some in confusion. I really don't think there is a wrong way to feel or a right way to feel, one just does.
The last wait was at the end of the Hallway, in a little room, along with others. Most had someone with them. There was a lady who had been "cured" and it came back in her female parts. Her husband was with her, a big, strong, rough looking man... yet gentle. Several of the ladies were either bald or partially bald, and this one lady was bald and in a wheelchair. She looked in her thirties maybe early forties, but not old by no standard. She wasn't able to do radiation again and the chemo wasn't doing it solo either so they were trying out an experimental drug. She said it was her only choice, her only chance. One could see the worry in her husband's eyes yet one saw peace in her eyes and resolve in her calm voice. She was hoarse as was another lady. At first everybody sat in silence but my big mouth stopped that, even mom participated in the conversation, which really didn't have a theme and struck at some things most do not speak of. I thought it also important that we have a laugh and a lot of smiles. Most days it physically hurts to talk and the more I talk the worse it can get, but this, this was worth it I believe. The time passed by so much faster and for a moment people seemed to be with others that had a new normal forced upon them. I started the conversation with the lady's hair loss and told her how beautiful women are when they are bald. Her husband jumped in saying he told her that many times over. The other ladies who were older started in, some with hair, some just getting hair back.
I wasn't joking either, though I made a few jokes about my own feelings of when I was bald, and how my hair once back started to relocate. There is a beauty that most people acquire that screams out when one looks at their face. One hears listening to their words a peace, resolve, and true beauty, one that far exceeds the fake beauty of those who are held to be beauty in worldly aspects. My hair is long now and my beard fairly unkept, so they had no clue that I had been where they are now. As I told the ladies, if someone looks at me and this is all they see, they don't see me. One lady said that it was different for a woman to lose her hair. I corrected her and said I had always prided myself on my hair and one of my worse fears was to go bald, most men do. She said she had never known that.
We discussed fears and pains, hopes and trails... these things one usually doesn't discuss with those unaware. That includes close family and yes, even doctors and medical trained people. It is a bond that ties much like those who serve in war say they have as well. At the same time, by several people discussing these things their loved ones see and hear things they would normally not see or hear, which opens a deeper support level they can give. It also helps one know that they are not in a boat alone in a storm that rages on. Never have I ever seen that much hope, courage, fear, despair, kindness, hurt, healing, loneliness, love, peace, turbulence, faith in one place all existing at the same time. Never have I seen that much love and hope in people who some would think have little hope, and the evidence of God, and how close and personal one can become with the Creator. I had forgotten that. This is something listening to preaching won't get, going through the motions won't get, or speaking and reading won't get one. This is true and very personal faith. Anyone can praise Him when things are good, but not just anyone can praise Him during trials and tribulations... and that is sad. By the time this horrible disease strips away all one has, their pride, independence, safety, security, and usually financial, only one thing remains, Grace. In the loss of self one finds God, the real God. I can not imagine what one would do if they don't, nor would I try too.
So anyway, after we left a few hours later we stopped and ate at Applebee's... big mistake. Tonight me and mom both had acid reflux and for the first time since I cut the Prednisone in 1/2, I went back to a full dose of 10mg. The swelling was getting just too bad and tonight I can hardly breathe again. Whatever these restaurants are doing to our food, or crappy food they are serving, I'm out. Mom's worse fear too came true coming back as I dozed off or blacked out a few times, luckily with nobody on the sides of us when we drifted over. I think that came from lack of sleep though a little. I think it may be time to see a doctor about this arthritis, maybe even get my knees fixed. Injuries over the years to my knees, shoulders, elbows, and neck, throat, added to the arthritis the Lyme Disease left me with maybe its time to address. Last nights rain and season changing though is always rough. When we got back I done what is becoming a normal thing, something I had never done before, took a nap. :) Thing change I guess as we get older and more miles on us.
