Larry died at 1:34 pm yesterday. Richard, Colleen and I were with him. His cousins Calvin and Bonnie had been able to call and say good bye to him before he was gone. I am so proud of him. He died well. His head had 5 large knots of swelling encompassing the back of it. I pointed that out to the nurse. That and he was struggling to breath, so they got the doctor's approval and started him on morphine. They were able to give him a dose every hour under the tongue. You could see a huge change come over him once he started the morphine. I had not realized how much he was struggling to live and communicate with the world he had known for 60 years. He was trapped inside a body that had turned against him.
Once she gave him the morphine, he quit fighting and struggling and you could actually see him turn and face death. He had been drugged when I got there Friday night with hydrocodone injections every 4 hours. Even though he looked like a zombie, when you looked into those bleary half mast eyes, you could still see him in there. He knew I was there, and he knew who I was.
Everyone at the facility, along with his friends and family who were also taking this journey with Larry all said the same thing, "He was waiting for you." And I could see that my self. He changed completely when I came in and picked up his hand and smiled into his face. A face that within a few short weeks had changed drastically. He had obviously lost a significant amount of weight. He was not eating, and he could only swallow things like milk shakes. Pudding was getting to be more then he could consume. His life was extremes just like it had always been. His brain was shutting down and his physical changes were obvious. The mental state, not so. If you really looked at him and watched him you could see the subtle expressions and emotions hidden deep inside. Even through the drugs I could see that he recognized me, and was happy to see me. My heart aches. I wish it were as simple as we had a "normal" marriage. It was complicated, and the last 3 years we were together we were divorced. But none of that matters to my heart right now. My heart understands that for the first time in 25 years I could not rely on Larry being a part of my life. My mind reminds me of the terrible times, my heart has forgiven those already. My mine still holds those memories as walls and shields for protection. My heart remembers the wonderful times and it aches for the loss. I felt as if I was loosing my husband, not my Ex. I know that I am legally divorced, a divorcee, not a widow. I feel as if I am his widow. We each looked around after the divorce searching for that closeness we had shared for many years. Legal or otherwise, the loss is so real.
I have never sat next to someone as they died. When they unplugged my Mother I could not take it. I left. Larry took me away, he did not want me to remember her that way. I sat next to Larry and sang our lullaby to him. On Friday night he reacted strongly to it, making distress noises and putting his hand up to his face. My first reaction was that I knew I am not a great singer, but come on. I teased about that, and then picked up the song for him. After that we mostly sat there and simply held hands.
I spent Saturday morning together, and again we just sat and I held his hand and rubbed his head, which is how I first realized the change in the shape of his head. He still seemed to relax and enjoy the feel of me running my hand over his head. Simple little basic needs.
Everyone at the Hospice facility were amazing, kind, helpful, knowledgeable and so comfortable to work with. They made Larry so comfortable. Several of the staff made comments about how they had come to like him. He was much more lively then the average person passing through the facility. He was also at the facility longer then many of their patients. And no matter what else you can say about Larry, he was charming.
I spent a little time with Richard and then slipped into my Toy with the top down and aimed north. I needed the open road, the blue sky the solitude. I had just experienced something so hard that I needed to give myself time to process it. It was almost intoxicating to watch the end of Larry's life as he gave himself to the process and freed himself from the pain and prison his body had become. There was a joy, a fleeting joy, and then the reality that he was gone. Relief that he will no longer go through what he has been through these past several years. Relief that I will not get a call in the middle of the night where he has broken down south of Perry, has no money, no gas and has not eaten for several days. But relief does not compare to the grief I am feeling. The deep sense of loss. Twenty five years of joy and laughter and tears and frustration.
And all of those emotions tumbled round in my head and heart and started coming out in weeping and mewing noises. They flew out of the car as I drove north for 3 hours, flying in the wind releasing the pain as my heart broke open. The mewing grew louder and more primal until I felt as if I would hyperventilate and started questing myself if I were going into shock. I would pull over before I had reached those moments. And so I drove and pulled over and wept for years of loss, past and future. And then back on the road mind spinning away with a million details that need to be taken care of. Then stop to call a friend for support. Then back on the road. It made for a long journey.
I allowed my heart to crack and break, to wallow in my grief and loss. I had no control over the noises being emitted from my very deepest darkest self. But I gave into my most primal feelings and as I wept and grieved I could feel that it was for all the loss Larry and I had shared over more then 25 years together. I just gave in and did not try and hold back on any of it. I was alone in my car, and in my solitude I was able to completely let go and release so much pain and hurt. Such intimate moments, that it is even hard to write them down here. To be able to admit that I was able to let go so completely, as well as express such deep searing pain is hard even here now. But I need to release that, and hope that it is respected as my own personal experience of loss and not to be commented on.
When I got home, I sat and wept more. I made a few phones calls when I was able to distract myself away long enough to be able talk. And the entire week has been hard.
Monday I went to work and had my blood drawn and then went to auditions, so a very long day. Tuesday Tamara picked me up before 7 at the McD's around from my house. We got home around 4, so a very long day. Wednesday I met with the nurse and then Dr. M. He told a medical student that he wanted her to meet because I was such an interesting case. I said, "Am I really?" he seemed geniunely surprised and responded that yes, I was a very interesting case. I told him that it was just my life, so I had no idea that it was interesting.
Then he discussed the lab results with me. Not really the best news. My white blood cell count is down and my liver enzymes elevated. Dr. M asked me how long had I been on the Tarceva. He thought it had been a month. It had only been 5 days. That changed everything. He is going to move me down from 100 mg to 150 mg. Sigh, the drug does seem to be working, but too good. Dr. M gave me a shot of growth hormone and sent me home. I was a bit depressed, I admit it. For the most part I feel as if I keep a positive attitude most of the time. I feel hopeful and lucky and gifted most of the time, but I am only human, sometimes I get depressed. And Wednesday into Thursday, I was depressed. I could feel things coming to a close with Larry. I was nervous about my body handling the Tarceva. According to the blood work, my body had not come back enough for me to have a normal IV chemo, so it felt like my options were disappearing, just as I was starting to forget that I am dying. I was starting to look forward to life, and was managing to get the morbid sense of humor under control so that I could focus more on the present instead of constantly worrying that I will not die well.
I tried retail therapy Thursday after having lunch with Geeta. It was wonderful getting to sit and talk and be with someone I enjoy spending time with, that was great. But the shopping did not help. I found a shirt I liked, but none of the pants fit. They were all a little big in an 8, and were 6 inches too short. Ms Denise asked me if I was trying clothes on in the petite section. I told her that I had taken the clothes off of the rack in my area of the store and had roughly measured them by holding them up for comparison. I had to use the fitting room in the petite section, and by the time I got to the fitting area the pants had shrunk up to peddle pushers, or is the correct term, clam diggers? Regardless they were a length unsuitable for my taste and I left with only my shirt. Sigh.
Friday we celebrated Eric's 60th birthday at the office. I brought in pizzas and chocolate cake with sodas. I left right after work and headed down to Brooksville to be with Larry.
I have missed blogging this past week. There was so much I wanted to take off my chest and out of my heart and release into the dance of the words. One night a beautiful thunder storm interrupted my blogging opportunity. Working on Nergal with Judy took another night, depression and plays and work, and life at home as well as trying to step up and get things prepared for Larry. It has been a busy, stressful several weeks. Now the worry and concern I have been dealing with are now replaced with grief and loss and sorrow. But these are emotions that will give way as I find places in my heart and memory to keep the good times Larry and I shared. The bad continues to fade away. I want it to fade away. I want to be careful not to loose the lesson, but to loose to pain. And these past many weeks with Larry have taught me so much about myself and my ability to forgive and forget and to forgive myself for fault I had always put onto him, that I now understand my part in them. Remove the guilt and hate and anger and pain. Emotions that I did not even know I was holding on to.
Today was the Garden Circle. I didn't go. My sorrow is still too close to the surface. I can not predict when I might start to weep, or worse, openly sobbing. It is uncomfortable sharing that grief. I didin't want to be the center of attention. I didn't want to be around people, even these dearest friends of the garden circle. I just couldn't leave the house.
I have been outside for a short time working in the garden. Too short of time to accomplish anything, but still outside in the hot winter/spring sun. And so beautiful. But the need to record this week and take what my mind remembers and my heart still hangs on to. Now it is recorded, shared reluctantly out to the ether, but the need to record it so much more important to heal then to hold on to it and continue hurting.
Now to sit back in the sun, maybe pull weeds, maybe just go back out to the middle of the pasture and lay down with my face in the sun. That is the place Larry and I went to when we found out they had completely removed our little house and all the plants around it on our property on Pine Island. Together we lay on our backs side by side and held hands and remembered all the joy we had in that little house. We sat up and watched the sunset as it painted the western sky. The colors blurring through tears as our past felt as if it had been obliterated from the face of the earth. We loved that little place, nestled into a forest of tropical and subtropical plants filling the air with color and scents intermingled as butterflies floated from flower to flower filling the entire world with an Oz sort of feel. A tiny little home nestled up in the tree tops hidden from the outside world. With a canal weaving in and out of mangroves always flowing out to the warm gulf. Gone.
And now Larry's body is gone, although he still lives in many hearts. And death is back sitting next to me reminding me that it is a fairy tale to believe I will live forever. Or that I will even have the same time as someone else my age without cancer and hepetitus C. Two diseases that make my life, this journey "interesting". And I welcome the healing that comes from driving in my new toy with the top down and the radio on and just releasing the deep sorrow and loss I was experiencing. And it felt like Larry was picking the songs on the radio. At first they all seemed to be about death. No, I don't mean that I was in the mood that everything sounded like death. I mean the songs for 30 minutes all had death in them. Like Stairway to Heaven, Eric Clapton's tears in heaven, and every song in a row focused on loss and death. Then the next many songs were sung about not forgetting someone. Of people leaving, I'm leaving on a jet plane, for example. Finally I realized that I was laughing, not wailing. And I was laughing over the irony of the music choices. I doubt if other people noticed. No, that is not true, they were having a contest where all the songs for 30 minutes had a related topic. I don't know if it was death, but in a bizarre, sick way, it was just what I needed to have a break. To allow my body to rest even just for a moment from the physical and emotional grief.
And my rash has finally shown on my cheeks. Just a couple of red spots, not much to brag about. But it did make me feel better that I had gotten it. I have started having some of the other symptoms, but very mild. I have loss several pounds, but I think that is as much stress as it is the medication.
Once she gave him the morphine, he quit fighting and struggling and you could actually see him turn and face death. He had been drugged when I got there Friday night with hydrocodone injections every 4 hours. Even though he looked like a zombie, when you looked into those bleary half mast eyes, you could still see him in there. He knew I was there, and he knew who I was.
Everyone at the facility, along with his friends and family who were also taking this journey with Larry all said the same thing, "He was waiting for you." And I could see that my self. He changed completely when I came in and picked up his hand and smiled into his face. A face that within a few short weeks had changed drastically. He had obviously lost a significant amount of weight. He was not eating, and he could only swallow things like milk shakes. Pudding was getting to be more then he could consume. His life was extremes just like it had always been. His brain was shutting down and his physical changes were obvious. The mental state, not so. If you really looked at him and watched him you could see the subtle expressions and emotions hidden deep inside. Even through the drugs I could see that he recognized me, and was happy to see me. My heart aches. I wish it were as simple as we had a "normal" marriage. It was complicated, and the last 3 years we were together we were divorced. But none of that matters to my heart right now. My heart understands that for the first time in 25 years I could not rely on Larry being a part of my life. My mind reminds me of the terrible times, my heart has forgiven those already. My mine still holds those memories as walls and shields for protection. My heart remembers the wonderful times and it aches for the loss. I felt as if I was loosing my husband, not my Ex. I know that I am legally divorced, a divorcee, not a widow. I feel as if I am his widow. We each looked around after the divorce searching for that closeness we had shared for many years. Legal or otherwise, the loss is so real.
I have never sat next to someone as they died. When they unplugged my Mother I could not take it. I left. Larry took me away, he did not want me to remember her that way. I sat next to Larry and sang our lullaby to him. On Friday night he reacted strongly to it, making distress noises and putting his hand up to his face. My first reaction was that I knew I am not a great singer, but come on. I teased about that, and then picked up the song for him. After that we mostly sat there and simply held hands.
I spent Saturday morning together, and again we just sat and I held his hand and rubbed his head, which is how I first realized the change in the shape of his head. He still seemed to relax and enjoy the feel of me running my hand over his head. Simple little basic needs.
Everyone at the Hospice facility were amazing, kind, helpful, knowledgeable and so comfortable to work with. They made Larry so comfortable. Several of the staff made comments about how they had come to like him. He was much more lively then the average person passing through the facility. He was also at the facility longer then many of their patients. And no matter what else you can say about Larry, he was charming.
I spent a little time with Richard and then slipped into my Toy with the top down and aimed north. I needed the open road, the blue sky the solitude. I had just experienced something so hard that I needed to give myself time to process it. It was almost intoxicating to watch the end of Larry's life as he gave himself to the process and freed himself from the pain and prison his body had become. There was a joy, a fleeting joy, and then the reality that he was gone. Relief that he will no longer go through what he has been through these past several years. Relief that I will not get a call in the middle of the night where he has broken down south of Perry, has no money, no gas and has not eaten for several days. But relief does not compare to the grief I am feeling. The deep sense of loss. Twenty five years of joy and laughter and tears and frustration.
And all of those emotions tumbled round in my head and heart and started coming out in weeping and mewing noises. They flew out of the car as I drove north for 3 hours, flying in the wind releasing the pain as my heart broke open. The mewing grew louder and more primal until I felt as if I would hyperventilate and started questing myself if I were going into shock. I would pull over before I had reached those moments. And so I drove and pulled over and wept for years of loss, past and future. And then back on the road mind spinning away with a million details that need to be taken care of. Then stop to call a friend for support. Then back on the road. It made for a long journey.
I allowed my heart to crack and break, to wallow in my grief and loss. I had no control over the noises being emitted from my very deepest darkest self. But I gave into my most primal feelings and as I wept and grieved I could feel that it was for all the loss Larry and I had shared over more then 25 years together. I just gave in and did not try and hold back on any of it. I was alone in my car, and in my solitude I was able to completely let go and release so much pain and hurt. Such intimate moments, that it is even hard to write them down here. To be able to admit that I was able to let go so completely, as well as express such deep searing pain is hard even here now. But I need to release that, and hope that it is respected as my own personal experience of loss and not to be commented on.
When I got home, I sat and wept more. I made a few phones calls when I was able to distract myself away long enough to be able talk. And the entire week has been hard.
Monday I went to work and had my blood drawn and then went to auditions, so a very long day. Tuesday Tamara picked me up before 7 at the McD's around from my house. We got home around 4, so a very long day. Wednesday I met with the nurse and then Dr. M. He told a medical student that he wanted her to meet because I was such an interesting case. I said, "Am I really?" he seemed geniunely surprised and responded that yes, I was a very interesting case. I told him that it was just my life, so I had no idea that it was interesting.
Then he discussed the lab results with me. Not really the best news. My white blood cell count is down and my liver enzymes elevated. Dr. M asked me how long had I been on the Tarceva. He thought it had been a month. It had only been 5 days. That changed everything. He is going to move me down from 100 mg to 150 mg. Sigh, the drug does seem to be working, but too good. Dr. M gave me a shot of growth hormone and sent me home. I was a bit depressed, I admit it. For the most part I feel as if I keep a positive attitude most of the time. I feel hopeful and lucky and gifted most of the time, but I am only human, sometimes I get depressed. And Wednesday into Thursday, I was depressed. I could feel things coming to a close with Larry. I was nervous about my body handling the Tarceva. According to the blood work, my body had not come back enough for me to have a normal IV chemo, so it felt like my options were disappearing, just as I was starting to forget that I am dying. I was starting to look forward to life, and was managing to get the morbid sense of humor under control so that I could focus more on the present instead of constantly worrying that I will not die well.
I tried retail therapy Thursday after having lunch with Geeta. It was wonderful getting to sit and talk and be with someone I enjoy spending time with, that was great. But the shopping did not help. I found a shirt I liked, but none of the pants fit. They were all a little big in an 8, and were 6 inches too short. Ms Denise asked me if I was trying clothes on in the petite section. I told her that I had taken the clothes off of the rack in my area of the store and had roughly measured them by holding them up for comparison. I had to use the fitting room in the petite section, and by the time I got to the fitting area the pants had shrunk up to peddle pushers, or is the correct term, clam diggers? Regardless they were a length unsuitable for my taste and I left with only my shirt. Sigh.
Friday we celebrated Eric's 60th birthday at the office. I brought in pizzas and chocolate cake with sodas. I left right after work and headed down to Brooksville to be with Larry.
I have missed blogging this past week. There was so much I wanted to take off my chest and out of my heart and release into the dance of the words. One night a beautiful thunder storm interrupted my blogging opportunity. Working on Nergal with Judy took another night, depression and plays and work, and life at home as well as trying to step up and get things prepared for Larry. It has been a busy, stressful several weeks. Now the worry and concern I have been dealing with are now replaced with grief and loss and sorrow. But these are emotions that will give way as I find places in my heart and memory to keep the good times Larry and I shared. The bad continues to fade away. I want it to fade away. I want to be careful not to loose the lesson, but to loose to pain. And these past many weeks with Larry have taught me so much about myself and my ability to forgive and forget and to forgive myself for fault I had always put onto him, that I now understand my part in them. Remove the guilt and hate and anger and pain. Emotions that I did not even know I was holding on to.
Today was the Garden Circle. I didn't go. My sorrow is still too close to the surface. I can not predict when I might start to weep, or worse, openly sobbing. It is uncomfortable sharing that grief. I didin't want to be the center of attention. I didn't want to be around people, even these dearest friends of the garden circle. I just couldn't leave the house.
I have been outside for a short time working in the garden. Too short of time to accomplish anything, but still outside in the hot winter/spring sun. And so beautiful. But the need to record this week and take what my mind remembers and my heart still hangs on to. Now it is recorded, shared reluctantly out to the ether, but the need to record it so much more important to heal then to hold on to it and continue hurting.
Now to sit back in the sun, maybe pull weeds, maybe just go back out to the middle of the pasture and lay down with my face in the sun. That is the place Larry and I went to when we found out they had completely removed our little house and all the plants around it on our property on Pine Island. Together we lay on our backs side by side and held hands and remembered all the joy we had in that little house. We sat up and watched the sunset as it painted the western sky. The colors blurring through tears as our past felt as if it had been obliterated from the face of the earth. We loved that little place, nestled into a forest of tropical and subtropical plants filling the air with color and scents intermingled as butterflies floated from flower to flower filling the entire world with an Oz sort of feel. A tiny little home nestled up in the tree tops hidden from the outside world. With a canal weaving in and out of mangroves always flowing out to the warm gulf. Gone.
And now Larry's body is gone, although he still lives in many hearts. And death is back sitting next to me reminding me that it is a fairy tale to believe I will live forever. Or that I will even have the same time as someone else my age without cancer and hepetitus C. Two diseases that make my life, this journey "interesting". And I welcome the healing that comes from driving in my new toy with the top down and the radio on and just releasing the deep sorrow and loss I was experiencing. And it felt like Larry was picking the songs on the radio. At first they all seemed to be about death. No, I don't mean that I was in the mood that everything sounded like death. I mean the songs for 30 minutes all had death in them. Like Stairway to Heaven, Eric Clapton's tears in heaven, and every song in a row focused on loss and death. Then the next many songs were sung about not forgetting someone. Of people leaving, I'm leaving on a jet plane, for example. Finally I realized that I was laughing, not wailing. And I was laughing over the irony of the music choices. I doubt if other people noticed. No, that is not true, they were having a contest where all the songs for 30 minutes had a related topic. I don't know if it was death, but in a bizarre, sick way, it was just what I needed to have a break. To allow my body to rest even just for a moment from the physical and emotional grief.
And my rash has finally shown on my cheeks. Just a couple of red spots, not much to brag about. But it did make me feel better that I had gotten it. I have started having some of the other symptoms, but very mild. I have loss several pounds, but I think that is as much stress as it is the medication.
Rest Larry, you died well and good. You were all mine. I used to always say that when he was doing something silly or crazy to show off. And here is the lullaby. It is not the same writing it down as it is, rubbing his head and quietly singing to him as he would go to sleep at night, or sometimes for naps. His feet scraping back and forth on each other.
Lay your head down, go to sleep
close your eyes and still your feet
lay your head down, dreams will come
lay your head down now
Sounds of song birds sweetly sung
gentle breathing of loved ones
soft purrs of fat white cats
warm sunshine, bright moonlight and nap
Lay your head down, go to sleep
close your eyes and still your feet
lay your head down, dreams will come
lay your head down now
Touch your hair and kiss your face
smooth the covers into place
turn the lights down, whisper low
now to sleep
pleasant dreams
my love
Lay your head down, go to sleep
close your eyes and still your feet
lay your head down, dreams will come
lay your head down........ now
Sweet dreams Larry, I will miss you
I am without words except I love you and I am so sorry. Rest in peace Larry.
ReplyDeleteThis is one of the most poignant, beautiful, tender and deeply touching pieces of writing I've been privileged to read. Thank you for sharing. I'm so sorry for the loss of your Larry.
ReplyDeleteThinking of you with love.
ReplyDeleteI'm so sorry for your loss.
ReplyDeleteI too am sorry to hear of Larry's death. I am glad that you were there with him. And that you held hands. What a wonderful thing to be there so that he was not alone. He felt your love, I am sure of that.
ReplyDeleteThinking of you and of Larry.
ReplyDeleteYou both, you and Larry both, did such a wonderful job getting him across that space we all come from and must go back through.
ReplyDeleteI don't even begin to have the words to tell you how I feel about you and your worth in this world.
Even "I love you" doesn't begin to cover it.
So so sorry to hear about Larry. Our thoughts and prayers go out to you. Larry's memory will always be in our hearts.
ReplyDeleteI agree with Maggie...
ReplyDeletean honour to read
hugs to you
the feet scraping back and forth one one another reveals such an intimate knowing of your larry. i know you will miss him. and that is as it should be. still, i am sorry for you loss.
ReplyDeletegrateful for this sharing.