Sunday, August 26, 2012
Anxiety and the Grocery Store
It's been a long time. I've been through migraines and pyschciatrists and pyschologysts and nuerologists and live with headaches almost daily. The only variance is the level. I also have anxiety issues, (I know, I have alot of issues. Poor hubby.) Today's lesson is about the anxiety. (This is meant to be funny, because now, looking back, it is funny, but , then, AUGH!!) The grocery store is one of my nemesis. A lot of people, thin aisles, somebody could touch me, (My personal freak out moment, stupid I know). When Mom was sick, I didn't let anyone touch me but a few select people and only after they had washed their hands and now, its flipped on me. I freak when I think someone is going to touch me. I don't have a problem with people themselves, but too many and too close and the hairs on the back of my neck start creeping. Throw in a couple of things than DO NOT belong in a grocery store and my anxiety level reaches a breaking point and I could hurl.
I worked on Saturday and then went to the grocery store. I dont have kids, so I'm not really mindful of back to school time. I had to park further away than normal, (Neck hairs woke up, no biggie, I can deal. Anxiety level 1). As I walk toward the store, I notice a sign that reads, '300th Celebration of Back to School Shopping!'. (I'm gonna try, I gotta get over this, it is just a freakin' grocery store, no one is gonna touch me. Neck hairs stretching, saying hi to one another. Anxiety level 2) I get to the front of the store and they have a stand that is selling hot dogs and soda and inside the store there are three tables where kids can color pictures, decorate a cookie or make a thing to hang on their doorknob. (Is that a tiger? Yup, that is a dude dressed in a Tony the Tiger costume. That DOES NOT belong in a grocery store. I'm gonna try anyway. I will win. Neck hairs turn on some music. Anxiety level 5) I grab my santizer towel and wipe down my grocery cart and push it into the store. There seem to be 50 kids by those three tables, I'm sure there weren't, but to me there were. I like kids, love 'em actually, but today, eh, my nerves. (Wait, is that a cop? Why do they need a cop? Is Tony the Tiger gonna go ballistic because some kid pulled his tail? Seriously? WHY do they need a cop? Neck hairs are doing the conga. Come on, baby do the conga. I know you can't control yourself any longer. Anxiety level 7 ) I turned around to get the flyer for some coupons and looked at it for a second. (When I turned back to my cart, there was Batman, FRICKIN BATMAN, who DOES NOT belong in a grocery store and he was 6 inches from my face. Anxiety level 10) Anxiety wins. I'm out. Hubby had pizza, I had stromboli.
Thursday, August 12, 2010
The Rest Of The Story
04-29-10
We had a meet and greet with Dr. Prichett, her doctor since she moved to Michigan, on Thursday and she had a CBC done. Dr. Prichett called Thursday night and said that Mom's platelets were low and she neeed to go to the ER. She is still there. Her fever keeps spiking (highest so far 103) and she has recieved 2 volumes (roughly 37 units total) of platelets and 4 units (62 total) of blood. She will be there again tonight. She is in good spirits.
05-02-10
Mom has come home from the hospital and is now settled into the Jackson house. She will not be going back to the hospital and is not recieving any more transfusions or medical intervention. All we can do now is make sure she is comfortable and not in pain. This is a difficult time for Mom and her family and we appreciate all of the thoughts and prayers from her family and friends.
05-05-10
She is still hanging in there. She got up and had breakfast with the family this morning, one of her favorites, biscuits and gravy. She is surrounded by so much love that it brings tears to the eye. My family and I appreciate all the thoughts and prayers. I'll keep updating y'all when I can.
05-08-10
Its the day after my Mothers 68th birthday and life is bittersweet. The whole family has been together off and on for the past two weeks and its been two of the best weeks of my life, but also the absolute worst two weeks I have ever had. I don't even remember the date that we got here or even the first day we got here. We flew in on a Wednesday and went to her new doctor's office and lab for her weekly blood test on Thursday. By Thursday nite, the doctor had called and told us to take her to the ER, as her platelets were dangerously low. She stayed there for a week and a half, got a few more rounds of blood and platelets, keeping her going until my brother, Jay, could get here. She then decided to stop treatment completely and come home on hospice. At the time, I was so impatient for her to make the decision, that I failed to see how hard the decision had to be. As I sit by her beside now and watch her die, I finally realize how strong she really is. We have had to give her so many drugs, it would put down a horse and still, she fights. She has worn herself out, fighting this. And out of all of her kids, I would be the one to fight with her. I fought so hard to get away from her and now I have to force myself to leave her side. I have to fight myself to give her these drugs that turn her into a vegetable, which is what she was the most afraid of. She is a sundowner, which is what they call someone in Mom's condition, alive, but only technically, who becomes extremely restless when the sun goes down. Mom is going through the phase of dying called terminal restlessness. It could be the subconcious giving the last signals to the body to do something, before she dies. I imagine it as a soldier's moment of calm, as he looks around and realizes he is fighting a losing battle, but he gathers his courage and his last remaining strength and charges onward to his doom. The drugs we have to give her to keep her calm and in bed, where she can't fall or hurt herself, are extremely powerful and could be causing hallucinations, which are probably scaring her at night. I just remembered that open closet doors scare her and I shut the ones in her room, maybe that will help. She just yelled 'help me' and when I asked her what she wanted, she said 'water' and those are the first coherant words I have heard from her all day.
05-09-10
I thought yesterday was tough. It ain't nothing compared to the night. Its 3:30 a.m. and I haven't been to sleep yet. We got an hour of peace from Mom. She has had Ativan, Morphine and Haderol and is still kicking. From what my aunt, Charlett, a CNA and my girl Jess, an RN whom I miss terribly, she has had enough drugs to knock out a linebacker. I have tried movies, music, TV, I even tried to read the Bible to her and nothing calms her. I don't know how much longer I can do this. I keep giving her the drugs, though they don't seem to do much. The Celine Dion cd seems to be relaxing her, so I guess its worth the annoyance. This is the time when I get frustrated with her and everyone else. I know Charlett would get up and sit with her if I asked, but she is taking care of her mother too. I hope when she does wake up, that I can sleep all day. I doubt it, but I can hope. Closing the closet doors doesn't seem to have made any differance, but I don't think she even knows where she is. She keeps saying, 'Hurry, hurry' and that she has to go to the bathroom. I had to shoo Pavel out of the room so she would finally go and then Shawna and I had to change her diaper, which is no easy feat. Just when we got it in place, Shawna tried to pull it to adjust it and ripped it, so we had to start all over again. She has told Jay and I that she didn't want anymore rabbits in her room, the ones on the bed were okay, but no more. I hope that the memories of the last few weeks fade fast. I don't want to remember this. I don't even think I'll be able to look at a picture of her for a loooong time.
05-10-10
Mom lost her battle with leukemia yesterday. I really didn't know the meaning of the word bittersweet before now. I am happy that it is over, but sad that it took me so long to realize that she did love me, but had a different definition of love than I did. It was the hardest thing I have ever done. I had to hold her down to keep her from getting out of bed and hurting herself. I KNOW she was embarassed to use a diaper and I KNOW she was mortified to have her daughters change it. I hope I don't remember the last few days. She cried for her mother at the end. I got her last kiss. She trusted me so much. When Dan came in the room and leaned over to talk to her she said, 'Brother, love you' She told me she loved me too. It was Shawna, Tanya and I in the room with her at the end. And so much for not looking at another picture of her. We went through the pictures that Grandmother set aside for her and had to pick out 30 pictures for a DVD for the Memorial Service and ended up with way more than 30. So Shawna and I are going to make posterboards tomorrow. Yay, fun!!! NOT!! I can't seem to keep to one train of thought. I know tonight is going to be another rough night. Every time I close my eyes, I see her. She was so strong. She did not want to give up. She was determined to get out of that bed. The nights terrified her. The minute the light started to change, she got agitated. The worst hours were between 2 a.m. and 4 a.m., she would just freak out. But every time I asked her to open her mouth for medicine and water, she would. I played 'Temporary Home' at the end for her, and not 10 seconds after that, she gasped her last breath, locked eyes with me and died. When I close my eyes to sleep, I see her gasping for breath and saying, 'Ow!' We tried to position her in every position we could think of, but she never was comfortable. She slept the most during the day, and so did I. Even when she was sleeping, she was gulping for breath. She even called 'Help me' over and over. And I was helpless. I see her asking me for help and there was nothing I could do for her. Nothing. I know in my head that there wasn't anything I could have done, but I still feel horrible. I tried to keep water in her, but the hospice nurse said that would actually make it harder for her. I gave her as much as I could and gave her ice chips. She was terrified of this stage. She told me that she knew what this disease would do at the end, and that was what scared her. We had talked about it months ago. I am really freaked out about going home. I want to come back to Michigan. I really miss being around my family. Like I said, this week has been bittersweet. I have had so much fun, but it came with a huge price tag. It was worth it. I wouldn't change anything about the last 9 months. It was painful and horrible, but also beautiful and inspiring.
05-12-10
I am finally on the flight home. I left on April 21 and now 22, days later, I get to go home. I would like nothing more than to shut my brain off and play Sims, but I must get the last couple of days down, before the memories fade. As I hoped, the memories of those last couple awful nights is receding. I can now go to sleep without seeing her so restless and scared or gasping for breath. The hurt is over for Mom, but the rest of us must go on. Her visitation and funeral were held at Chas. J. Burden's and Sons Funeral Home in Jackson, Mi, where my family has gone for generations. Mom was buried in Roseland, also in Jackson. I don't know how to feel now that she is gone. Its surreal. Part of me thinks I should be balling my eyes out, but another part of me feels relief. Relief that she is not hurting anymore. I have learned through all of this that my family, whom I have always considered rough around the edges and no fun, is actually a warm, loving family that rocks. I had so much fun the past three weeks that I find myself focusing on that instead of Mom's death. I shed tears when saying good bye to my aunts, the first time ever. I know that I am going home to an empty house. Pavel will be working alot and there aren't any kids around. There are always so many kids and Dan and Charlett's that I am going to have a hard time adjusting. We had a visitation for Mom on Wednesday. It amazed me how many people were actually expecting to view the body, which I consider morbid. We were asked if we wanted a viewing and Shawna and I stomped all over that idea. I realize that a viewing would have given some people closure, but she didn't look like Mom at the end. I didn't want anyone remembering her that way. The preacher asked if anyone from the family wanted to speak and no one volunteered at the meeting we had with him the day before the Memorial Service, but when I got home, I got a very sweet email story from one of Mom's friends that would have worked, so I called the preacher and told him I would speak. Then I went to write the speech out on notecards and realized it was kind of cheesy and overly religious and there would be no way I could make myself speak those words. So I wrote something and when I said it, everyone started to cry. Not what I meant to do, but it worked. I just listed the things she gave me. Brothers and a sister, aunts and uncles, grandparents and all my cousins. It took me until going through all this to realize that not only is family important, its essential. A couple people came up to me and said that they had wanted to say something about Mom, but couldn't after what I had said. Her very first boyfriend was there, the guy she shared her first kiss with, it was cool to meet him. Landing now and my ears hurt. I'll write about the burial later.
05-17-10
Been home for two days and today is the first day alone in my house and where am I? Hiding in the garage. Everywhere has memories of her. I can hardly bring myself to open her bedroom door. The two times I have tried, I leave the room crying. Everything makes me cry. I have been able to talk to Shawna and Tanya a little, cried both times, but I can't even get a word out if Charlett calls. We were talking about the Memorial Service and I said that this was the easy part, the hard part was done. Charlett told me that hard part was yet to come. The hard part for me was to go home to being alone after weeks of having them around. She was right. This is the hard part. I love my life with Pavel and love him more than I ever imagined loving someone. He is the only person in my life that can calm me by just being there. He has been phenominal through all this. But right now, everything just seems a little paler. Quieter. Calmer. I don't like it. I miss the people running in and out and the phone ringing. Except not here. The phone doesn't ring any more and there are no more doctors appointments to keep, no research to do and I am....lost. Her name is on every email I send at work and I spent the day crying off and on. They have no idea how to treat me at work and I have no idea how to treat them. They have all said that they missed my laughter and jokes. I think I have lost them. I can only smile around Pavel. I feel like he was there with me, so he is the only one that understands. I don't understand. I said that I miss the family more than I miss her, but that isn't completely true. She was the best mom she could have been, it was just that her definition of love was different than ours. Whatever she was or wasn't, she gave me Shawna, Lance and Jay. I would do it all over again, for them. Hell, yeah. This made me realize how important they are, I just wish I could talk to them without crying. My head hurts, I've been crying so much. I should drink some water, rehydrate. I just looked at the pictures of the burial. It was pretty simple. I read an email from Mom's best friend, Charlotte, and placed it and a stuffed twin teddy bear from Lana, Jay put something in there and it was sealed, lowered into the ground and buried. We all shed our tears and said goodbye. Then we started to scatter back to our lives. Sheryal, Leslie, Courtney and Hartlie left first. Then Dan, Tanya, Shawna, Lance, Jay and I went and had lunch on Mom. She told me that when it was all said and done, to buy everyone dinner on her. Lance left to go home, but I don't think he wanted to. I didn't want him to go. But we had lives to lead. Shawna left next and I didn't want her to leave, either. Finally it was mine and Tanya's turn. I did ok until Charlett hugged me and I lost it, just like I'm losing it now. I knew I was coming home to many long hours by myself. We went to Tanya's house and spent the night watching American Idol with her friend, Barb, whom I adore. Tanya was first out, in bed when Lindsey came home. I hung out with Lindsey until 2 am, had to be up be at least 7, but enjoyed every minute of it. Tanya drove me to the airport and I was all good until I got to my gate and had nothing to do. The magazine I was reading wasn't cutting it and then I called Lance to let him know that what got me stopped my security wasn't the cremains in my carry on, but the decorative crab his wife had given me. We laughed for a minute and said good bye. I was ok for a second, then Shawna called and I lost it. They started boarding as we were talking so we said good bye and I cried. I did ok until take off and cried some more as I looked out the window and saw the plane leaving them behind. I can get through this. I have Pavel, and he and I can do anything together. I have my puppies, who love me, and a family that is only a phone call away. I will be ok. Just give me some time. I find I don't want to talk or even chat on Facebook, which is REALLY unusual. I want to be left alone, but the silence deafens me. I went to Geena's tonight, thinking that being around people and little kids would help, but they weren't the right ones. I hope things get to normal soon. This is wierd.
05-20-10
Pavel brought doughnuts to work today. To soften the blow, I think. Will and the kids are moving to Alabama with Jay and Becky. Ryan is going to buy a house and they are going to go on honky dory, leaning on each other and here I am, again. THIS SUCKS!!! I never wanted to be around no family. Even when I lived in Sebring, Helen and Letcher were there and Jay and Becky were only 2 hrs away. Now its 8 and 22 hrs away from everybody. They will get to go to the birthday parties and graduations and I miss out on the kids growing up, again. Today actually started out decent too. Laughed some this morning with the girls at work. Carol said that she is sorry that I am sad and that my back hurts, but she wishes I would get better soon, because the office is too quiet now. I just can't make myself talk lately. At least not without crying. I went and got a massage today and cried. I hate crying, but I can't seem to stop. The more I cry, the more my back hurts. I think there is something wrong with my head. I was able to hang out in her room a little today and decided that the walls really need to be repainted, because the green she chose was.....ew. Just ew. Pavel agrees and Jay told me that he didn't like it either. We have the door open tonight and we'll see how I do. Last night was the first night without sleeping pills and I did okay. Missed my alarm for the second day in a row, though. I just wish I could find a balance. My head hurts. I'm drying the flowers from Mom's service. Gonna do something special with them.
08-13-10
It has been over 3 months since my Mom died. The house feels different. I spend most of my time when Pavel isn't home hanging out in the garage. It's funny. When he is home or Geena or Jessica are around, I'm okay. Its when I am by myself that the memories haunt me. I don't think I'm getting over this very well. I spent the time from when we found out that she had a chance until the minute she died helping her. I never stopped to think about what would happen after. I thought I would come back home and be able to put it in the back of my mind, like I did when Grandmother died. I just got it into my mind that Grandmother was jet skiing in Jamaca. I know she is dead, but now when I think of her, I picture her in an old time bathing suit on a jet ski and I smile. I can't seem to do that with Mom. Maybe its because I wasn't actually there when Grandmother died. I don't know. I can honestly say that I am living through a quasi-hell right now. I say quasi, because when I am with loved ones, I'm good, but by myself, it sucks. Or right around bedtime. Or Sunday nights. I haven't been alone on a Sunday night yet. Just the thought of it makes my skin crawl. And strangers touching me completely freaks me out now. I almost ran into a column because this girl I was walking next to got too close. And forget about shopping on the weekends or the mall at ANY time. Jess asked if it was because I had to be such a germaphobe when Mom was around, but I don't think that is it. I can't stand the thought of someone I don't know touching me. Pavel and I went to Jessica and Todd's house warming party and I was pretty much glued to Pavel's side. I have never been really big on people touching me anyway, but now its ridiculous. I either can't sleep or I sleep through nightmares that make me wake up feeling like I never went to sleep. There are two nightmares, one I had the first time in Michigan on the Thursday before Mom died. I dreamed that I was taking care of Mom while Shawna was fighting cancer, just like Mom. It was one of those dreams that you really cry in, where you wake up with a wet pillow and your eyes swollen shut. I've had that one a couple times, but usually I have to relive the last 3 days of Mom's life over and over. I am either trying to sleep by the foot of her bed or trying to hold her down. Every time I lay my head down to sleep, I hear her asking me how long I thought IT was going to take. Some mornings I wake up with a vague memory of the dream, but this morning, I remembered the whole thing. People tell me that I should just think about something else. What they don't understand is that I could fill my days and nights with all sorts of things, but she is always there, hanging out in a corner, waiting for me to see her again. And I can't remember the smiling, laughing Mom very well. It has gotten better, but I still can't have pictures of her up. I have flashbacks at certain words and phrases. The flashbacks are like a mini movie playing in my head, over and over. I just started group therapy 2 weeks ago and I'm still not sure about it. For one thing, put a pair of glasses on the facillitator and she is Mom. For another, I never really saw myself as a therapy kind of person. I don't know what a therapy kind of person is, I guess I never really thought about it. It's probably going to be good, but it seems to aggravate the nightmares and insomnia. This week we have to bring a picture of our Mom and a memory object. Great. I can't even look at a picture and she wants me to bring a memory object, too? We had to fill out the inevitable paper work and my name and address, all that was written with my usual neat handwriting, but Mom's name? It looked like a 3 year old wrote it. No last name, the first was all I could do. And of course, they wanted how your Mom died. Nice. I lost it right after the paper work was done and cried pretty much the whole time. The second week was easier, only a few tears and I talked more, but honestly, I was so exhausted, I didn't have the energy to cry. My usual nemesis, insomnia, has reared its ugly head again. It is 1:41 a.m. and where am I? In the garage, writing in my journal for the first time in months and seriously considering updating my blog while I'm at it. I have a good life. I have a phenominal husband, who always seems to know what to do to calm me. My girls, Geena and Jess, have been rocks. My family, now that I am finally able to talk to them wihout crying for hours afterward, has been great. I miss them so much it hurts. The good days are starting to outnumber the bad, which is progress. I cry and complain about the last year, but I wouldn't do anything differently. Even the #$%! I am going through now is worth the lessons that I learned. I learned that the family that I have been looking for has been there the whole time. I got to be part of a GREAT family coming together to care for one of thier own. I got her last kiss, she died looking into my eyes and those two memories alone are priceless to me. I got, for the first time in my adult life, to hang out with extended family around. I got to know my Aunt Tanya. That also is priceless. I think I'm still going to have rough days, but after writing this, I feel better about those days. And look forward to the good days. Yeah.
We had a meet and greet with Dr. Prichett, her doctor since she moved to Michigan, on Thursday and she had a CBC done. Dr. Prichett called Thursday night and said that Mom's platelets were low and she neeed to go to the ER. She is still there. Her fever keeps spiking (highest so far 103) and she has recieved 2 volumes (roughly 37 units total) of platelets and 4 units (62 total) of blood. She will be there again tonight. She is in good spirits.
05-02-10
Mom has come home from the hospital and is now settled into the Jackson house. She will not be going back to the hospital and is not recieving any more transfusions or medical intervention. All we can do now is make sure she is comfortable and not in pain. This is a difficult time for Mom and her family and we appreciate all of the thoughts and prayers from her family and friends.
05-05-10
She is still hanging in there. She got up and had breakfast with the family this morning, one of her favorites, biscuits and gravy. She is surrounded by so much love that it brings tears to the eye. My family and I appreciate all the thoughts and prayers. I'll keep updating y'all when I can.
05-08-10
Its the day after my Mothers 68th birthday and life is bittersweet. The whole family has been together off and on for the past two weeks and its been two of the best weeks of my life, but also the absolute worst two weeks I have ever had. I don't even remember the date that we got here or even the first day we got here. We flew in on a Wednesday and went to her new doctor's office and lab for her weekly blood test on Thursday. By Thursday nite, the doctor had called and told us to take her to the ER, as her platelets were dangerously low. She stayed there for a week and a half, got a few more rounds of blood and platelets, keeping her going until my brother, Jay, could get here. She then decided to stop treatment completely and come home on hospice. At the time, I was so impatient for her to make the decision, that I failed to see how hard the decision had to be. As I sit by her beside now and watch her die, I finally realize how strong she really is. We have had to give her so many drugs, it would put down a horse and still, she fights. She has worn herself out, fighting this. And out of all of her kids, I would be the one to fight with her. I fought so hard to get away from her and now I have to force myself to leave her side. I have to fight myself to give her these drugs that turn her into a vegetable, which is what she was the most afraid of. She is a sundowner, which is what they call someone in Mom's condition, alive, but only technically, who becomes extremely restless when the sun goes down. Mom is going through the phase of dying called terminal restlessness. It could be the subconcious giving the last signals to the body to do something, before she dies. I imagine it as a soldier's moment of calm, as he looks around and realizes he is fighting a losing battle, but he gathers his courage and his last remaining strength and charges onward to his doom. The drugs we have to give her to keep her calm and in bed, where she can't fall or hurt herself, are extremely powerful and could be causing hallucinations, which are probably scaring her at night. I just remembered that open closet doors scare her and I shut the ones in her room, maybe that will help. She just yelled 'help me' and when I asked her what she wanted, she said 'water' and those are the first coherant words I have heard from her all day.
05-09-10
I thought yesterday was tough. It ain't nothing compared to the night. Its 3:30 a.m. and I haven't been to sleep yet. We got an hour of peace from Mom. She has had Ativan, Morphine and Haderol and is still kicking. From what my aunt, Charlett, a CNA and my girl Jess, an RN whom I miss terribly, she has had enough drugs to knock out a linebacker. I have tried movies, music, TV, I even tried to read the Bible to her and nothing calms her. I don't know how much longer I can do this. I keep giving her the drugs, though they don't seem to do much. The Celine Dion cd seems to be relaxing her, so I guess its worth the annoyance. This is the time when I get frustrated with her and everyone else. I know Charlett would get up and sit with her if I asked, but she is taking care of her mother too. I hope when she does wake up, that I can sleep all day. I doubt it, but I can hope. Closing the closet doors doesn't seem to have made any differance, but I don't think she even knows where she is. She keeps saying, 'Hurry, hurry' and that she has to go to the bathroom. I had to shoo Pavel out of the room so she would finally go and then Shawna and I had to change her diaper, which is no easy feat. Just when we got it in place, Shawna tried to pull it to adjust it and ripped it, so we had to start all over again. She has told Jay and I that she didn't want anymore rabbits in her room, the ones on the bed were okay, but no more. I hope that the memories of the last few weeks fade fast. I don't want to remember this. I don't even think I'll be able to look at a picture of her for a loooong time.
05-10-10
Mom lost her battle with leukemia yesterday. I really didn't know the meaning of the word bittersweet before now. I am happy that it is over, but sad that it took me so long to realize that she did love me, but had a different definition of love than I did. It was the hardest thing I have ever done. I had to hold her down to keep her from getting out of bed and hurting herself. I KNOW she was embarassed to use a diaper and I KNOW she was mortified to have her daughters change it. I hope I don't remember the last few days. She cried for her mother at the end. I got her last kiss. She trusted me so much. When Dan came in the room and leaned over to talk to her she said, 'Brother, love you' She told me she loved me too. It was Shawna, Tanya and I in the room with her at the end. And so much for not looking at another picture of her. We went through the pictures that Grandmother set aside for her and had to pick out 30 pictures for a DVD for the Memorial Service and ended up with way more than 30. So Shawna and I are going to make posterboards tomorrow. Yay, fun!!! NOT!! I can't seem to keep to one train of thought. I know tonight is going to be another rough night. Every time I close my eyes, I see her. She was so strong. She did not want to give up. She was determined to get out of that bed. The nights terrified her. The minute the light started to change, she got agitated. The worst hours were between 2 a.m. and 4 a.m., she would just freak out. But every time I asked her to open her mouth for medicine and water, she would. I played 'Temporary Home' at the end for her, and not 10 seconds after that, she gasped her last breath, locked eyes with me and died. When I close my eyes to sleep, I see her gasping for breath and saying, 'Ow!' We tried to position her in every position we could think of, but she never was comfortable. She slept the most during the day, and so did I. Even when she was sleeping, she was gulping for breath. She even called 'Help me' over and over. And I was helpless. I see her asking me for help and there was nothing I could do for her. Nothing. I know in my head that there wasn't anything I could have done, but I still feel horrible. I tried to keep water in her, but the hospice nurse said that would actually make it harder for her. I gave her as much as I could and gave her ice chips. She was terrified of this stage. She told me that she knew what this disease would do at the end, and that was what scared her. We had talked about it months ago. I am really freaked out about going home. I want to come back to Michigan. I really miss being around my family. Like I said, this week has been bittersweet. I have had so much fun, but it came with a huge price tag. It was worth it. I wouldn't change anything about the last 9 months. It was painful and horrible, but also beautiful and inspiring.
05-12-10
I am finally on the flight home. I left on April 21 and now 22, days later, I get to go home. I would like nothing more than to shut my brain off and play Sims, but I must get the last couple of days down, before the memories fade. As I hoped, the memories of those last couple awful nights is receding. I can now go to sleep without seeing her so restless and scared or gasping for breath. The hurt is over for Mom, but the rest of us must go on. Her visitation and funeral were held at Chas. J. Burden's and Sons Funeral Home in Jackson, Mi, where my family has gone for generations. Mom was buried in Roseland, also in Jackson. I don't know how to feel now that she is gone. Its surreal. Part of me thinks I should be balling my eyes out, but another part of me feels relief. Relief that she is not hurting anymore. I have learned through all of this that my family, whom I have always considered rough around the edges and no fun, is actually a warm, loving family that rocks. I had so much fun the past three weeks that I find myself focusing on that instead of Mom's death. I shed tears when saying good bye to my aunts, the first time ever. I know that I am going home to an empty house. Pavel will be working alot and there aren't any kids around. There are always so many kids and Dan and Charlett's that I am going to have a hard time adjusting. We had a visitation for Mom on Wednesday. It amazed me how many people were actually expecting to view the body, which I consider morbid. We were asked if we wanted a viewing and Shawna and I stomped all over that idea. I realize that a viewing would have given some people closure, but she didn't look like Mom at the end. I didn't want anyone remembering her that way. The preacher asked if anyone from the family wanted to speak and no one volunteered at the meeting we had with him the day before the Memorial Service, but when I got home, I got a very sweet email story from one of Mom's friends that would have worked, so I called the preacher and told him I would speak. Then I went to write the speech out on notecards and realized it was kind of cheesy and overly religious and there would be no way I could make myself speak those words. So I wrote something and when I said it, everyone started to cry. Not what I meant to do, but it worked. I just listed the things she gave me. Brothers and a sister, aunts and uncles, grandparents and all my cousins. It took me until going through all this to realize that not only is family important, its essential. A couple people came up to me and said that they had wanted to say something about Mom, but couldn't after what I had said. Her very first boyfriend was there, the guy she shared her first kiss with, it was cool to meet him. Landing now and my ears hurt. I'll write about the burial later.
05-17-10
Been home for two days and today is the first day alone in my house and where am I? Hiding in the garage. Everywhere has memories of her. I can hardly bring myself to open her bedroom door. The two times I have tried, I leave the room crying. Everything makes me cry. I have been able to talk to Shawna and Tanya a little, cried both times, but I can't even get a word out if Charlett calls. We were talking about the Memorial Service and I said that this was the easy part, the hard part was done. Charlett told me that hard part was yet to come. The hard part for me was to go home to being alone after weeks of having them around. She was right. This is the hard part. I love my life with Pavel and love him more than I ever imagined loving someone. He is the only person in my life that can calm me by just being there. He has been phenominal through all this. But right now, everything just seems a little paler. Quieter. Calmer. I don't like it. I miss the people running in and out and the phone ringing. Except not here. The phone doesn't ring any more and there are no more doctors appointments to keep, no research to do and I am....lost. Her name is on every email I send at work and I spent the day crying off and on. They have no idea how to treat me at work and I have no idea how to treat them. They have all said that they missed my laughter and jokes. I think I have lost them. I can only smile around Pavel. I feel like he was there with me, so he is the only one that understands. I don't understand. I said that I miss the family more than I miss her, but that isn't completely true. She was the best mom she could have been, it was just that her definition of love was different than ours. Whatever she was or wasn't, she gave me Shawna, Lance and Jay. I would do it all over again, for them. Hell, yeah. This made me realize how important they are, I just wish I could talk to them without crying. My head hurts, I've been crying so much. I should drink some water, rehydrate. I just looked at the pictures of the burial. It was pretty simple. I read an email from Mom's best friend, Charlotte, and placed it and a stuffed twin teddy bear from Lana, Jay put something in there and it was sealed, lowered into the ground and buried. We all shed our tears and said goodbye. Then we started to scatter back to our lives. Sheryal, Leslie, Courtney and Hartlie left first. Then Dan, Tanya, Shawna, Lance, Jay and I went and had lunch on Mom. She told me that when it was all said and done, to buy everyone dinner on her. Lance left to go home, but I don't think he wanted to. I didn't want him to go. But we had lives to lead. Shawna left next and I didn't want her to leave, either. Finally it was mine and Tanya's turn. I did ok until Charlett hugged me and I lost it, just like I'm losing it now. I knew I was coming home to many long hours by myself. We went to Tanya's house and spent the night watching American Idol with her friend, Barb, whom I adore. Tanya was first out, in bed when Lindsey came home. I hung out with Lindsey until 2 am, had to be up be at least 7, but enjoyed every minute of it. Tanya drove me to the airport and I was all good until I got to my gate and had nothing to do. The magazine I was reading wasn't cutting it and then I called Lance to let him know that what got me stopped my security wasn't the cremains in my carry on, but the decorative crab his wife had given me. We laughed for a minute and said good bye. I was ok for a second, then Shawna called and I lost it. They started boarding as we were talking so we said good bye and I cried. I did ok until take off and cried some more as I looked out the window and saw the plane leaving them behind. I can get through this. I have Pavel, and he and I can do anything together. I have my puppies, who love me, and a family that is only a phone call away. I will be ok. Just give me some time. I find I don't want to talk or even chat on Facebook, which is REALLY unusual. I want to be left alone, but the silence deafens me. I went to Geena's tonight, thinking that being around people and little kids would help, but they weren't the right ones. I hope things get to normal soon. This is wierd.
05-20-10
Pavel brought doughnuts to work today. To soften the blow, I think. Will and the kids are moving to Alabama with Jay and Becky. Ryan is going to buy a house and they are going to go on honky dory, leaning on each other and here I am, again. THIS SUCKS!!! I never wanted to be around no family. Even when I lived in Sebring, Helen and Letcher were there and Jay and Becky were only 2 hrs away. Now its 8 and 22 hrs away from everybody. They will get to go to the birthday parties and graduations and I miss out on the kids growing up, again. Today actually started out decent too. Laughed some this morning with the girls at work. Carol said that she is sorry that I am sad and that my back hurts, but she wishes I would get better soon, because the office is too quiet now. I just can't make myself talk lately. At least not without crying. I went and got a massage today and cried. I hate crying, but I can't seem to stop. The more I cry, the more my back hurts. I think there is something wrong with my head. I was able to hang out in her room a little today and decided that the walls really need to be repainted, because the green she chose was.....ew. Just ew. Pavel agrees and Jay told me that he didn't like it either. We have the door open tonight and we'll see how I do. Last night was the first night without sleeping pills and I did okay. Missed my alarm for the second day in a row, though. I just wish I could find a balance. My head hurts. I'm drying the flowers from Mom's service. Gonna do something special with them.
08-13-10
It has been over 3 months since my Mom died. The house feels different. I spend most of my time when Pavel isn't home hanging out in the garage. It's funny. When he is home or Geena or Jessica are around, I'm okay. Its when I am by myself that the memories haunt me. I don't think I'm getting over this very well. I spent the time from when we found out that she had a chance until the minute she died helping her. I never stopped to think about what would happen after. I thought I would come back home and be able to put it in the back of my mind, like I did when Grandmother died. I just got it into my mind that Grandmother was jet skiing in Jamaca. I know she is dead, but now when I think of her, I picture her in an old time bathing suit on a jet ski and I smile. I can't seem to do that with Mom. Maybe its because I wasn't actually there when Grandmother died. I don't know. I can honestly say that I am living through a quasi-hell right now. I say quasi, because when I am with loved ones, I'm good, but by myself, it sucks. Or right around bedtime. Or Sunday nights. I haven't been alone on a Sunday night yet. Just the thought of it makes my skin crawl. And strangers touching me completely freaks me out now. I almost ran into a column because this girl I was walking next to got too close. And forget about shopping on the weekends or the mall at ANY time. Jess asked if it was because I had to be such a germaphobe when Mom was around, but I don't think that is it. I can't stand the thought of someone I don't know touching me. Pavel and I went to Jessica and Todd's house warming party and I was pretty much glued to Pavel's side. I have never been really big on people touching me anyway, but now its ridiculous. I either can't sleep or I sleep through nightmares that make me wake up feeling like I never went to sleep. There are two nightmares, one I had the first time in Michigan on the Thursday before Mom died. I dreamed that I was taking care of Mom while Shawna was fighting cancer, just like Mom. It was one of those dreams that you really cry in, where you wake up with a wet pillow and your eyes swollen shut. I've had that one a couple times, but usually I have to relive the last 3 days of Mom's life over and over. I am either trying to sleep by the foot of her bed or trying to hold her down. Every time I lay my head down to sleep, I hear her asking me how long I thought IT was going to take. Some mornings I wake up with a vague memory of the dream, but this morning, I remembered the whole thing. People tell me that I should just think about something else. What they don't understand is that I could fill my days and nights with all sorts of things, but she is always there, hanging out in a corner, waiting for me to see her again. And I can't remember the smiling, laughing Mom very well. It has gotten better, but I still can't have pictures of her up. I have flashbacks at certain words and phrases. The flashbacks are like a mini movie playing in my head, over and over. I just started group therapy 2 weeks ago and I'm still not sure about it. For one thing, put a pair of glasses on the facillitator and she is Mom. For another, I never really saw myself as a therapy kind of person. I don't know what a therapy kind of person is, I guess I never really thought about it. It's probably going to be good, but it seems to aggravate the nightmares and insomnia. This week we have to bring a picture of our Mom and a memory object. Great. I can't even look at a picture and she wants me to bring a memory object, too? We had to fill out the inevitable paper work and my name and address, all that was written with my usual neat handwriting, but Mom's name? It looked like a 3 year old wrote it. No last name, the first was all I could do. And of course, they wanted how your Mom died. Nice. I lost it right after the paper work was done and cried pretty much the whole time. The second week was easier, only a few tears and I talked more, but honestly, I was so exhausted, I didn't have the energy to cry. My usual nemesis, insomnia, has reared its ugly head again. It is 1:41 a.m. and where am I? In the garage, writing in my journal for the first time in months and seriously considering updating my blog while I'm at it. I have a good life. I have a phenominal husband, who always seems to know what to do to calm me. My girls, Geena and Jess, have been rocks. My family, now that I am finally able to talk to them wihout crying for hours afterward, has been great. I miss them so much it hurts. The good days are starting to outnumber the bad, which is progress. I cry and complain about the last year, but I wouldn't do anything differently. Even the #$%! I am going through now is worth the lessons that I learned. I learned that the family that I have been looking for has been there the whole time. I got to be part of a GREAT family coming together to care for one of thier own. I got her last kiss, she died looking into my eyes and those two memories alone are priceless to me. I got, for the first time in my adult life, to hang out with extended family around. I got to know my Aunt Tanya. That also is priceless. I think I'm still going to have rough days, but after writing this, I feel better about those days. And look forward to the good days. Yeah.
Tuesday, March 30, 2010
Walkin' After Midnight
Once again, can't sleep. Walkin the dark path that is Cancerland. This is the point in another park, people would begin to slow down, enjoy the bird exhibit, pass by some of the exciting rides in favor of getting a hot pretzel with salt and mustard and strolling down the board walk. Maybe trying a couple of the games or getting your palm read. Here in Cancerland, you want to slow down, you try to slow down. You think just a little more time. I'm not ready to know yet. I want one more day. One more lifetime. This part of my park is warped and twisted and unbelievably cruel. We have gone through four months of chemo, innumerable pokes of needles, dripping i.v.'s and the countless beeps that you hear in a chemo room or in a hospital. We have been through multiple blood transfusions, fevers, emergency trips to the hospital and its all been leading towards tomorrow and its not enough time. The bone biopsy was two weeks ago and we have been waiting for tomorrow, well, now today. If the chemo works, she could get a transplant, but if it doesn't there isn't much they can do. And everybody else is asleep and I am FREAKING OUT!!! It's today. I wish this was a movie, this would be the part where they find a cure and everything would be okay again. She would be cured and this wouldn't be happening anymore. I could even handle the part of the movie where she would get a transplant and almost lose it, but fight it back at the end and win and everyone lives happily ever after. But my imagination has been twisted by Cancerland and it wasn't very straight to begin with. Right now in my imagination, we are watching the part of the movie where nothing has worked for her and I have to sit there and I have to be strong and have to pay attention while the doctor tells my mom there are no other options for her. I will have to be her rock, when all I'm gonna want to do is fall apart. I think I have said it before, but I have to say it again, this job SUCKS!!!! Oh, there is one good thing. In the past few days I have learned that the crap I have been stressed about and freaked about, didn't really matter. I have learned a new patience with her that I hope lasts. As for her, she has been acting like the mom I remember. I think all the bad stuff is fading. Like we have finally accepted each other for what and who we are, it sucks that it had to come this late, but at least it did. Well, its after midnight and I am still walking the path in Cancerland,dark and scary though it may be, and will be until the end, whatever that may be.
Monday, February 15, 2010
Arguing with Myself
If any of you has tried to argue with me, you know its hard to get a word in, let alone win the damn thing, so you may have an idea of what is going on in my head. Mom, Lance (my brother) and I went to Mom's bone marrow transplant (BMT) consultation and learned alot. Like a BMT and recovery could take from 2 - 4 years. YEARS, people. I don't know if I signed up for years. There is still stuff I want to do with my life. Like a kid would be super cool. Imagine it. A little one that Pavel and I could mess up in our own special way. That kid would end up running the world. Its so nice to imagine. I have wanted one forever and now have everything I said I wanted when I have one. Married, check. Own house, check. Good job, check. Health insurance, check. Awesome dogs, check. Mother living in nursery, oh crap. I have always believed that you should take care of the ones that are here before you worry about ones that aren't even conceived yet, but 4 years? That would make me 38 and I know that it can be done at that age, but it gets harder the older you get. What is 4 years when you are talking about saving your Mom's life? But, then again, even if her BMT is successful, she still only has a 60% chance of living cancer free. 60% sucks as a test score, but for a survival rate its pretty good. But I want to be a mommy. But I want my mommy to live. This sucks. I know its not just me in this with Mom. I have 2 brothers, 1 sister, 2 aunts and an uncle, cousins and nieces and nephews, but they are all in MI and if I ship Mom up there, does that make me a failure? Does that mean that I am giving up on her? Will she think that? Does that mean that my life and what I want is more important than hers? If she is to stay down here and go through all this BMT crap, could I live with her 24/7 and not go mad? Like padded room insane? Am I gonna disappoint my brothers and sister if I say, "I'm done"? Are they gonna be mad at me? In my heart, I know the answers to the last two. My brothers and sister love me, they won't be mad or disappointed, but it doesn't stop the nagging nasty thoughts that sit in the back of my head and wait for the moment when my guard is down so that they can batter me with this stupid crap again. I tell myself that its ok to think about my life and what I want from it, that its not putting myself first, its just being practical. But when I do think of all I want from life, there just doesn't seem to be a way to do everything. We don't have room for a baby right now and I couldn't take care of Mom and a baby, anyway. Then I start to think that I might not get to have a kid and that just brings me way down, cuz I have wanted a baby ever since my nieces were born. I don't know what to think anymore except, THIS SUCKS!!! What am I supposed to do now? Do I choose myself and my husband to put first, or do I put my mother first? I am so confused.
Sunday, January 24, 2010
Cancerland Insomnia
I have never been really good friends with sleep. It sucks. My husband and sleep are bestest friends. Sleep comes to him before his head hits the pillow and takes him to dreamland peacefully. I have had problems with sleep since childhood. Mom says I used to walk in my sleep and high school was full of months and months of nights with only 3 or 4 hours of sleep. I finally had found a good schedule and had only had a couple of episodes with insomnia in a year (nothing short of a miracle there!!) For me, sleep is an evasive presence that makes me turn into some of the many characters here in Cancerland. Like Disney, we have characters that walk around Cancerland, but they don't shake hands, hug you and you definetly don't want to take pictures with them. Our characters chase you, beat you, exhaust you and try to cause as much terror as they can. Most of the characters are played by yours truly and its usually not too much fun. There is Captain Crank, whom I hate the most. He usually comes out when the insomnia first starts. He is mean, negative and just unpleasant. He really pisses me off because I usually have no reason to put on the cranky pants and I can't make him go away. He makes me imagine pushing Mom's wheelchair into heavy traffic or at least a wall or two. He also makes me think that she could walk, she just likes being pushed. I have to think that the walk is too far for her, because if I ever found out she was making me push her when she could do it on her own, I think I really will lose it. Captain Crank generally comes out when, before I have had my first sip of coffee, my darling Mother walks out of her bedroom at 6:30 in the morning and gives me something to do for her. No good morning, nothing. Just, "Here, I need this done." That just sets the tone for the entire day. I'm not gonna take it anymore. Every time I get mad at her I try to remind myself of what she is going through, but she isn't the only one going through this. She has to treat me better and I have to make her. I am learning that guilt trips affect her just as badly as they do me. I looked at her and told her, "Do you realize that is the third morning, in a row, that you haven't said good morning to me? Just given me something to do?" She must have felt bad, cuz she left me alone for the entire rest of the day. Which was nice. This morning I woke up at 5 and went out on the couch and had just started to fall asleep when she woke me up to ask if it was going to bother me if she took a shower. AAUUGHH!!
All this lack of sleep has brought out another character that I didn't know before. I call her Sierra Sobs-A-Lot. I am not one of those crying girls. Nope, just not me. I don't cry at movies or sappy commercials, nothing. But, oh, this week I found a new side of me. I don't even remember what set it off, but I cried for two and a half days. The first day, Pavel had to come home from work and take care of things. It was a bunch of stupid little things that all happened on the same day and I lost it. I thought I had a break down before, well, that was just a bump compared to this. She called me at work to ask how to put HER crock pot on warm!!! She asks me at least once a day if it is going to bother us if she gets up at night to go to the bathroom. All this came to a head the day that Pavel (my hubby) had to come home. He came home to find both of us hiding in our bedrooms, me with my ET doll. If you know me at all, you know when ET comes out, its BAAAAD!! Ya, ya. I know. I am 34 years old and still have my woobie. Whatever. Never gonna give him up. Pavel had to sit Mom down and explain to her that if Layele (that's me) breaks, the whole of Cancerland will break. That he knows she is lonely, but if I don't get a break from her, I was going to end up insane. More so than I already am, that is. Jerk had to throw that in there, too. His talk with Mom seems to kinda have helped. She still thinks of herself first and everyone else last, but she is helping more and doing more for herself. Maybe. She said she was going to do our laundry so I didn't have too, but guess who is doing laundry on her only day off? Yup, me. I just can't seem to find anything positive to say about her this time. I am so pissed at her for waking me up this morning, that I am having a hard time being nice to her at all. Why would you wake someone up that was having a hard time sleeping? And its your daughter. I thought moms were supposed to care more about their kids more than themselves. I see that in other peoples moms, but not mine. Here I am, doing everything I can to help save her life and she can't even let me sleep? What is wrong with this picture? Did I give up my right to be treated well when I said I would be her caregiver? Does me being her caregiver give her the right to treat me like her servant instead of her daughter? I don't even know if I should post this blog. I feel that you should not speak badly of your family to strangers, but I also want to inform anyone who might be thinking about being a caregiver what they might go through.
It just seems that the world is conspiring against me the last couple of weeks. I can't sleep, therefore I have no energy, therefore my garage is still full of her stuff and I can't get to the stuff that relaxes me. My power tools. Oh, I miss them. I had just gotten them for my birthday in September and Mom got diagnosed in September, so I haven't even gotten to play with them. I went to the doctor for some help with the insomnia and the crying jags and she prescribed me Celexa, an anti depressant with a side effect of insomnia, and Lunesta, a sleep aid that doesn't work for me and has a annoying side effect of yawning. So now I still can't sleep and I yawn every 5 minutes and my mother has reverted to an 8 year old who can't make any decisions for herself. I still have so much to do and no energy to do it. I never realized how much there was to do when someone has an illness like this. Power of Attorney, Living Will, Medicare and insurance papers. Bone marrow biopsies, transplant info gathering, sorting through her stuff, watching her cry, watching her get poked and prodded, taking her to all her doctor visits, it never ends. And then there is the emotional part, which I was never good at anyway. Having to make her make the decision on what to do if she becomes unresponsive. Does she want me to keep her alive or just let her go. If you are reading this, you probably think the answer is easy, let me tell you, its not. She had to sign papers that say that if she becomes unresponsive, to let her die. It was hard just to watch her sign. I can't imagine how hard it was for her. Then that made me wonder if I would have the strength to pull the plug. I know I will have to, but damn, that's my mom. As frustrating and infuriating as she is, she is still my mommy. I am having to watch her waste away, she lost 50 lbs in 5 months, and I have to hold her when she cries and be strong for her, but I am still losing my mommy. I try to end these posts on positive notes, but I just can't seem to find one today. You'll have to forgive me.
All this lack of sleep has brought out another character that I didn't know before. I call her Sierra Sobs-A-Lot. I am not one of those crying girls. Nope, just not me. I don't cry at movies or sappy commercials, nothing. But, oh, this week I found a new side of me. I don't even remember what set it off, but I cried for two and a half days. The first day, Pavel had to come home from work and take care of things. It was a bunch of stupid little things that all happened on the same day and I lost it. I thought I had a break down before, well, that was just a bump compared to this. She called me at work to ask how to put HER crock pot on warm!!! She asks me at least once a day if it is going to bother us if she gets up at night to go to the bathroom. All this came to a head the day that Pavel (my hubby) had to come home. He came home to find both of us hiding in our bedrooms, me with my ET doll. If you know me at all, you know when ET comes out, its BAAAAD!! Ya, ya. I know. I am 34 years old and still have my woobie. Whatever. Never gonna give him up. Pavel had to sit Mom down and explain to her that if Layele (that's me) breaks, the whole of Cancerland will break. That he knows she is lonely, but if I don't get a break from her, I was going to end up insane. More so than I already am, that is. Jerk had to throw that in there, too. His talk with Mom seems to kinda have helped. She still thinks of herself first and everyone else last, but she is helping more and doing more for herself. Maybe. She said she was going to do our laundry so I didn't have too, but guess who is doing laundry on her only day off? Yup, me. I just can't seem to find anything positive to say about her this time. I am so pissed at her for waking me up this morning, that I am having a hard time being nice to her at all. Why would you wake someone up that was having a hard time sleeping? And its your daughter. I thought moms were supposed to care more about their kids more than themselves. I see that in other peoples moms, but not mine. Here I am, doing everything I can to help save her life and she can't even let me sleep? What is wrong with this picture? Did I give up my right to be treated well when I said I would be her caregiver? Does me being her caregiver give her the right to treat me like her servant instead of her daughter? I don't even know if I should post this blog. I feel that you should not speak badly of your family to strangers, but I also want to inform anyone who might be thinking about being a caregiver what they might go through.
It just seems that the world is conspiring against me the last couple of weeks. I can't sleep, therefore I have no energy, therefore my garage is still full of her stuff and I can't get to the stuff that relaxes me. My power tools. Oh, I miss them. I had just gotten them for my birthday in September and Mom got diagnosed in September, so I haven't even gotten to play with them. I went to the doctor for some help with the insomnia and the crying jags and she prescribed me Celexa, an anti depressant with a side effect of insomnia, and Lunesta, a sleep aid that doesn't work for me and has a annoying side effect of yawning. So now I still can't sleep and I yawn every 5 minutes and my mother has reverted to an 8 year old who can't make any decisions for herself. I still have so much to do and no energy to do it. I never realized how much there was to do when someone has an illness like this. Power of Attorney, Living Will, Medicare and insurance papers. Bone marrow biopsies, transplant info gathering, sorting through her stuff, watching her cry, watching her get poked and prodded, taking her to all her doctor visits, it never ends. And then there is the emotional part, which I was never good at anyway. Having to make her make the decision on what to do if she becomes unresponsive. Does she want me to keep her alive or just let her go. If you are reading this, you probably think the answer is easy, let me tell you, its not. She had to sign papers that say that if she becomes unresponsive, to let her die. It was hard just to watch her sign. I can't imagine how hard it was for her. Then that made me wonder if I would have the strength to pull the plug. I know I will have to, but damn, that's my mom. As frustrating and infuriating as she is, she is still my mommy. I am having to watch her waste away, she lost 50 lbs in 5 months, and I have to hold her when she cries and be strong for her, but I am still losing my mommy. I try to end these posts on positive notes, but I just can't seem to find one today. You'll have to forgive me.
Friday, January 8, 2010
The Chemo Room
Ok, so maybe Izwoldo was a little over the top, but you know what? I have not had one single nightmare since writing about him. Works for me. Today we are at the Dr's office getting Mom her chemo. This is nothing like I thought it would be. I thought there would be lots of complicated machinery, painful injections and lots of people crying. Nothing like that. Its a big room in the back of the office, with great big comfy chairs and the nicest nurses. It is very strange how you can get used to things. I never thought that going to chemo would be normal, but it is. I can't imaging being in her position. She has to be so frightened, but she rarely shows it. The nurses here at Dr. Bergier's office are so nice. They call everyone by name and care so much. I thought they would be desensitized by all the people they see, but they are not. Yesterday, one woman who had just finished her round of chemo bled out of her port and the blood went all over her shirt. Instantly, she was surrounded by 3 nurses, one holding her hand, one stopping the bleeding and the other one was cleaning her shirt. It's nice to know that my Mom is in good hands.
The drug they give her to fight MDS is pretty complex. And then there are the drugs they give her to fight the side effects of the other drugs and don't forget the drugs for everything else. Its amazing how much you learn through all this. Not only about the cancer, but about the drugs. The first thing she does is weighs in and has her vitals taken. Then they check her blood levels and then its time for them to access her port, which always kinda grosses me out. A port is a device that they surgically implanted under her skin on her left hand side, just above her heart. It consists of a small chamber and a catheter. The port has an area of self-sealing silicone rubber in the center called the septum. One end of the catheter is securely attaced to the port and the other end is placed into a large vein. First they inject some saline, which keeps her hydrated and keeps the port and its tubes clear. Then comes the drug cocktail of Tagament, Benadryl, Decadron, Aloxi and Vidaza. Tagament and Benadryl are used to combat heartburn and any allergic reactions she may have. Decadron is a steroid medication that also acts as an anti-inflammatory and can help with allergic reactions. Its also used to treat nausea and vomiting and can stimulate the appetite. The side effects are: increased appetite (not bad), irritability (just wonderful), difficulty sleeping (so both of us will be up all night?!?!?) swelling in the ankles (thats ok, cuz she never ties her shoes anyway.), and dizziness (it'll be like hanging out with Paige!!) Aloxi is called an antiemetic, which means that it helps with nausea and vomiting.
Then there is the Vidaza. This one is the cancer drug. It stops cancer cells from making DNA and RNA, thereby stopping the cancer cells from growing. She gets a bag of the stuff dripping into her port once a day, seven days in a row. When you have MDS, your bone marrow makes fewer healthy blood cells and the blood cells it does make don't always work right. Vidaza was the first drug approved by the FDA for treatment of MDS. It may be able to help her bone marrow make healthy blood cells again. She has to go through 4 - 6 months, or cycles, of treatment in order to see any results. Those months are going to be hard for her, she is going to be tired and nauseous. She will still have regular blood transfusions throughout all of this, which means she is still going to be feeling the effects of her blood dropping, as well as any side effects from Vidaza. Treatment cycles are given as long as Dr. Bergier recommends. If it helps, she could be on it as long as it benefits her and the side effects don't make her stop. While she is on it, her blood counts could fall during the first few months. This could make her tired or have a fever. If her fever spikes higher than 100.5, its off to the hospital she goes. By cycle 3 or 4, Vidaza may help her bone marrow make healthy cells again. As a result, her counts could begin to rise. By cycle 5 or 6, her need for transfusions could be reduced. Common side effects are: nausea, anemia (reduced RBC's that could make her feel tired), thrombocytopenia (reduced platelet counts that could cause bleeding for no reason, like nosebleeds or bleeding from the gums), vomiting, diarrahea, constipation and neutropenia (decrease in WBC's. After she cycles through enough, she could get a bone marrow transplant, which if successful, could make her cancer free.
Those are just the I.V. drugs. Then there are her oral drugs. Seriously, she has breakfast and dinner just with pills alone. Right now, she takes 11 different pills, some of them multiple times a day. For reasons ranging from diabetes to acid reflux to sleep aids to 3 different kinds of antibiotics. It is insane. Absolutely nuts and we are only 5 months in. I wonder what its gonna be like in 5 more months.
Tomorrow will be day 4 of cycle 2 for Mom and so far, so good. No major side effects and she is being such a trooper. She is really tired and slightly puffy, but other than that, good, all things considered. And I am ok, all things considered. Slightly insane, but that was always normal for me.
The drug they give her to fight MDS is pretty complex. And then there are the drugs they give her to fight the side effects of the other drugs and don't forget the drugs for everything else. Its amazing how much you learn through all this. Not only about the cancer, but about the drugs. The first thing she does is weighs in and has her vitals taken. Then they check her blood levels and then its time for them to access her port, which always kinda grosses me out. A port is a device that they surgically implanted under her skin on her left hand side, just above her heart. It consists of a small chamber and a catheter. The port has an area of self-sealing silicone rubber in the center called the septum. One end of the catheter is securely attaced to the port and the other end is placed into a large vein. First they inject some saline, which keeps her hydrated and keeps the port and its tubes clear. Then comes the drug cocktail of Tagament, Benadryl, Decadron, Aloxi and Vidaza. Tagament and Benadryl are used to combat heartburn and any allergic reactions she may have. Decadron is a steroid medication that also acts as an anti-inflammatory and can help with allergic reactions. Its also used to treat nausea and vomiting and can stimulate the appetite. The side effects are: increased appetite (not bad), irritability (just wonderful), difficulty sleeping (so both of us will be up all night?!?!?) swelling in the ankles (thats ok, cuz she never ties her shoes anyway.), and dizziness (it'll be like hanging out with Paige!!) Aloxi is called an antiemetic, which means that it helps with nausea and vomiting.
Then there is the Vidaza. This one is the cancer drug. It stops cancer cells from making DNA and RNA, thereby stopping the cancer cells from growing. She gets a bag of the stuff dripping into her port once a day, seven days in a row. When you have MDS, your bone marrow makes fewer healthy blood cells and the blood cells it does make don't always work right. Vidaza was the first drug approved by the FDA for treatment of MDS. It may be able to help her bone marrow make healthy blood cells again. She has to go through 4 - 6 months, or cycles, of treatment in order to see any results. Those months are going to be hard for her, she is going to be tired and nauseous. She will still have regular blood transfusions throughout all of this, which means she is still going to be feeling the effects of her blood dropping, as well as any side effects from Vidaza. Treatment cycles are given as long as Dr. Bergier recommends. If it helps, she could be on it as long as it benefits her and the side effects don't make her stop. While she is on it, her blood counts could fall during the first few months. This could make her tired or have a fever. If her fever spikes higher than 100.5, its off to the hospital she goes. By cycle 3 or 4, Vidaza may help her bone marrow make healthy cells again. As a result, her counts could begin to rise. By cycle 5 or 6, her need for transfusions could be reduced. Common side effects are: nausea, anemia (reduced RBC's that could make her feel tired), thrombocytopenia (reduced platelet counts that could cause bleeding for no reason, like nosebleeds or bleeding from the gums), vomiting, diarrahea, constipation and neutropenia (decrease in WBC's. After she cycles through enough, she could get a bone marrow transplant, which if successful, could make her cancer free.
Those are just the I.V. drugs. Then there are her oral drugs. Seriously, she has breakfast and dinner just with pills alone. Right now, she takes 11 different pills, some of them multiple times a day. For reasons ranging from diabetes to acid reflux to sleep aids to 3 different kinds of antibiotics. It is insane. Absolutely nuts and we are only 5 months in. I wonder what its gonna be like in 5 more months.
Tomorrow will be day 4 of cycle 2 for Mom and so far, so good. No major side effects and she is being such a trooper. She is really tired and slightly puffy, but other than that, good, all things considered. And I am ok, all things considered. Slightly insane, but that was always normal for me.
Sunday, January 3, 2010
Izwoldo
As you travel through Cancerland, you must be wary. Not only is the info gray brick road fraught with twist, turns and landmines, there is also a demon. He is the Wicked Witch, the Evil Stepmother and Freddy Krueger all rolled into one. His name is Izwoldo and he is repulsive. Eight feet tall with green, scaly skin that is blistered and split from all of the evil, nasty thoughts that are just wanting to explode out of his body. His beady red eyes follow you throughout the day and well into the night, waiting, always waiting for you to let your guard down and let him in. When he does get in, he never leaves, he sits there and waits for a doctor or nurse to say, "Maybe she has..." It doesn't matter if you hear what the doctor says, it doesn't even matter if you process the information and relay it to your family. Izwoldo takes those first three words and flies with Superman speed through your brain and releases his poison. The poison spreads into every corner of your brain until you dream horrible things. You could be sitting at your desk at work, calmly doing your work, and his poison fogs your mind. Her body has erupted with nasty pustules and you have to clean her. You imagine coming home from work to find her in the bathtub with her wrists slit or finding her dead in her bed. If, like me, you have a fear of dead bodies, Izwoldo will use that and you will find yourself imagining all the different ways she could die. But worse than that, you find yourself imagining having to call your brothers and sister to tell them that thier mother has died. You imagine them saying that its all on your head. The funeral, memorial service, dealing with the body, its all your responsibility and they won't take off from work to come help you. Not that they can't, they WON'T. Or that they blame you for her death, that she was your responsibility and you didn't do your job of taking care of her. All you had to do was take care of her and you screwed up. Izwoldo will take every one of your fears and magnify it, twist it and amp it up to where you are tormented almost daily. And nightly. The nightmares are the worst you will ever have. Many of them are the ones where you know you are dreaming, but are powerless to wake up. He stands behind you and waits for you to get tired or sick and then makes you snap at your mother or worse, he makes you make her cry. He laughs when you have to tell her that she can't travel and she may never see her father again. He dances with delight when you have to explain to your niece that her Nana might not make it through this. And he whispers with putrid breath all your darkest fears. And makes you feel horrible for looking forward to the end, whatever it may be. He makes you feel guilty for enjoying the times when she is in the hospital and your life is almost normal for a couple days. He rarely leaves you alone and is always poised for attack. He does have bad days, however. Those are the moments that will get you through this. He isn't around when one of her friends from way back calls her and you get to stand outside her door and listen to the joy in her voice. He isn't there when you realize that this crazy situation may bring your dysfunctional family closer than ever. He bolts from the room when he sees that you are enjoying spending time with your mother. He cries in disbelief when he sees your brothers painting her room together and having fun at it. He throws himself on the floor and throws a temper tantrum worthy of any spoiled monster when he sees you and your brothers and sister playing a game of cards and hanging out as adults for the first time, (one of my BEST memories, EVER!!!) He screams in disbelief when your mother starts talking about when she gets better, instead of assuming the worst. Those times may be few and far between, but they make everything else worth it. Makes it worth every second. Those memories will warm your heart and make you smile, even through the darkest times.
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