I had things light up on the PET scan and I find out tomorrow what next. I am scared. I have to say that reading all these blogs does give me hope. It's Sunday morning, and I am looking out the window---my boyfriend Joe has been my rock through all this. I just lit a candle and I am thinking about how everything flickers like that candle.
I find out from Hackensack what happens next. They will probably be giving me a drug called Gemzar if things turn out that cancer is left. I am considering a clinical trial that combines Gemzar with another experimental drug. I really want to get the transplant. I just seem to have so much trouble getting there.
I was very happy with my docs at Hackensack. I am going to Sloan Kettering next week....This has been such a long process and sad a lot of the time. Today looks beautiful out. I am a poet without words. I haven't written a poem in a long while. I should post some poems here. I miss writing. The words have evaporated from my brain. Just love this place so much. I hope God has some good news in store. I need hope so badly......
Sunday, August 3, 2008
Tuesday, July 15, 2008
Hurrying Up To Wait
I have been through the mill when it comes to Hodgkin's this trip. It troubles me. My doctor is ordering pet scans for next week. I am having a lot of pain in my upper region; near my lung. I hope if a bone marrow is needed; he will have the courage to order me to Phila. It is my only chance and I am afraid he will just order more chemo. I am really scared right now. To anyone who reads this, pray for me. Pray for my piece of mind. I have had a terrible time with depression this trip through cancer. Please pray if the bone marrow is needed, I will get it. I just don't think he wants me to go through anymore. But, without it, I fear I will die.
Friday, June 27, 2008
Why Didn't I Realize Sooner?
Why didn't I realize sooner I was sick? I had been tired the better part of a year. I have two more chemos left. I am still exhausted. I admire people who can work and keep going. I am worried they will not be able to help me after the chemo. I talked to someone online who has been through bone marrow. I need to find out percentage of cancer gone.
Poetry doesn't mean a whole hell of a lot right now. I hurt every single day. I can't go on not knowing. If I knew I was going to get the transplant, then there would be some sense of purpose. My appetite is still not the greatest and I still ache. I'm tired. I'm tired of being sick. I don't want to complain. Part of the reason why I keep this blog is to just get out the sorrow without burdening people. I've done that enough already.
I feel like I am on the outside looking in at other's lives. I live on pain killers and hope. Once the hope of a tranplant is gone, I don't know. I don't know at all. Thank God for writing. Thank God for the "thing with feathers" as Emily Dickinson says. The bittersweet part of this is I wish they had found the cancer sooner. Both of my sisters are a match. The next month or two will tell the tale. I am so lonely. If the doctor had pursued it sooner, if I had pursued it sooner....
The nurse tells me I will be better after the chemo. The doctors at Fox Chase look at it as a new cancer so they don't want to do a bone marrow unless absolutely necessary. The lymphoma is all over. I blamed myself about the birth control but the cancer was already starting---started the pills in March and I was already anemic by May or June of last year. When I had the stomach flu last May, I don't doubt it was something else starting inside of me.
Tonight, Joe and Iread at Andrea's bookstore. I wish poetry got me stirred up. It doesn't. I worry about what is going to happen. I don't want to end up like this woman in the chemo room. She is dying. For all intents and purposes, I am dying and they are just using this as "pallative" care to prolong and make my life "easier". If that is the case, I would not have desired this treatment at all. I wish I was more productive in my everyday. I have trouble concentrating with reading and writing: two things I love. I find this journalling comes much easier.
I want to find joy. I do, at night before bed, giving Joe a hug, and snuggling. I am going to UPenn and Strong Memorial for more "opinions". I am so fearful because I know what I am facing is not good at all. I should get going here....I just need prayer. I isolate myself even from Joe lately, except for at night.... Yesterday, I went to the Eucharistic Chapel and broke down. I feel like Jesus in the garden everyday of my life now.
Poetry doesn't mean a whole hell of a lot right now. I hurt every single day. I can't go on not knowing. If I knew I was going to get the transplant, then there would be some sense of purpose. My appetite is still not the greatest and I still ache. I'm tired. I'm tired of being sick. I don't want to complain. Part of the reason why I keep this blog is to just get out the sorrow without burdening people. I've done that enough already.
I feel like I am on the outside looking in at other's lives. I live on pain killers and hope. Once the hope of a tranplant is gone, I don't know. I don't know at all. Thank God for writing. Thank God for the "thing with feathers" as Emily Dickinson says. The bittersweet part of this is I wish they had found the cancer sooner. Both of my sisters are a match. The next month or two will tell the tale. I am so lonely. If the doctor had pursued it sooner, if I had pursued it sooner....
The nurse tells me I will be better after the chemo. The doctors at Fox Chase look at it as a new cancer so they don't want to do a bone marrow unless absolutely necessary. The lymphoma is all over. I blamed myself about the birth control but the cancer was already starting---started the pills in March and I was already anemic by May or June of last year. When I had the stomach flu last May, I don't doubt it was something else starting inside of me.
Tonight, Joe and Iread at Andrea's bookstore. I wish poetry got me stirred up. It doesn't. I worry about what is going to happen. I don't want to end up like this woman in the chemo room. She is dying. For all intents and purposes, I am dying and they are just using this as "pallative" care to prolong and make my life "easier". If that is the case, I would not have desired this treatment at all. I wish I was more productive in my everyday. I have trouble concentrating with reading and writing: two things I love. I find this journalling comes much easier.
I want to find joy. I do, at night before bed, giving Joe a hug, and snuggling. I am going to UPenn and Strong Memorial for more "opinions". I am so fearful because I know what I am facing is not good at all. I should get going here....I just need prayer. I isolate myself even from Joe lately, except for at night.... Yesterday, I went to the Eucharistic Chapel and broke down. I feel like Jesus in the garden everyday of my life now.
Wednesday, June 25, 2008
Loneliness Is The Phrase Hanging In There
I feel as lonely as cereal without milk. I couldn't sleep at all last night. I probably made it to bed around 4. I cry every morning. I get no hope or reassurance for anyone. I get the phrase Hanging In There. In many ways, I am mourning my death. I hurt all over. Everyday. I pray to be optimistic; and I do have moments, like when I am with my writing group or talking about poetry. But, always the cancer is there. I blame myself for taking the pill; for that being the cause of all this torture.
Unfortunately, I started getting tired last June and I took the pill in March....so I can probably blame myself all I want. It serves no purpose really. It serves no purpose at all. If I am dying, I want to know. I want to prepare. It gets rid of the false hope that has been filling my days. I won't let myself go to the end. I would rather go out dying through a transplant or treatment because at least that means I am still trying to live. If this treatment is just a bandaid or to give me a few more months, I never would have done it. It has been hell of my body and my relationship.
I am driving to Scranton to see a therapist today. Joe has gone to do the wash. Daily life goes on. I long for it. All I can think about is how Joe will go on without me. Damn it, I know it's selfish. I still have some hope. But later on in the day, the pain gets bad and hope wanes a bit I don't like the thought of being dependent on others for anything; including my own death. I'd like to go on a day like today---in my sleep. I was just starting to enjoy my life. I had gotten a new job; in which I was so happy because my boss was nice, the hours were good, and I had my weekends off again. I am so tired right now and I hate bitching, even here. I know no one probably reads this; so I suppose it is a good place to bitch. There is hardly anyone who knows what I am going through the third time around. I'd like to connect with another blogger Duane Castro about what he went through and continues to struggle with after his transplant. I have problems because they consider this a new cancer. I am going to post this much and return so I don't lose it....the battery on my computer is very low.
Unfortunately, I started getting tired last June and I took the pill in March....so I can probably blame myself all I want. It serves no purpose really. It serves no purpose at all. If I am dying, I want to know. I want to prepare. It gets rid of the false hope that has been filling my days. I won't let myself go to the end. I would rather go out dying through a transplant or treatment because at least that means I am still trying to live. If this treatment is just a bandaid or to give me a few more months, I never would have done it. It has been hell of my body and my relationship.
I am driving to Scranton to see a therapist today. Joe has gone to do the wash. Daily life goes on. I long for it. All I can think about is how Joe will go on without me. Damn it, I know it's selfish. I still have some hope. But later on in the day, the pain gets bad and hope wanes a bit I don't like the thought of being dependent on others for anything; including my own death. I'd like to go on a day like today---in my sleep. I was just starting to enjoy my life. I had gotten a new job; in which I was so happy because my boss was nice, the hours were good, and I had my weekends off again. I am so tired right now and I hate bitching, even here. I know no one probably reads this; so I suppose it is a good place to bitch. There is hardly anyone who knows what I am going through the third time around. I'd like to connect with another blogger Duane Castro about what he went through and continues to struggle with after his transplant. I have problems because they consider this a new cancer. I am going to post this much and return so I don't lose it....the battery on my computer is very low.
Tuesday, June 24, 2008
Cry In Between The Alphabet
My boyfriend Joe is playing a song we wrote together. I am a writer, first. I have always considered myself so; no matter what the pain in my back or my lack of appetite attests. In layman's terms, I'm probably fucked for life. I have about a year or so to live I am guessing, if I don't get a bone marrow transplant. The trick is you have to have a decent remission. This chemo has been so hard on me emotionally. There are steroids that reek havoc on your heart and soul and spirit. I had been in remission for seven years. My head is bald, my side hurts a hell of a lot, and I am just sad. This isn't the first time and the bone marrow is an iffy proposition. You live in constant fear.
The docs at Fox Chase will not do the bone marrow unless I have a good remission. Until the last cat scan, (I live in the prospect of cat scans) the doc said I was doing better. I still have to take pain killers for the pain on my side. The lymphoma is in my lung and while some has cleared up, it's still hanging out take pleasure in destroying me. It has been hard to be optimistic. The hope in the bone marrow keeps me hanging on. Hanging in. Whatever way you want to describe it. I am so afraid of this limbo period. My appetite is not the greatest so I know that I don't have that much improvement. It is weird to know this may be a document of my dying. But, comforting in a way, too, because on the My Space it doesn't seem the place for such serious talk. I don't know.
Don't trust me. I am an unreliable narrator. I know that everyone around me is having a hard time with this. But, when it has come down to it, it has only been my boyfriend Joe and my mom and Dad that have done the chemo treatments and everything else. I would give up today if not for Joe. He's a bedrock and puts up with my shit on a minute to minute basis. I wish this blog could be about where my writing is going. That's what it used to be about. I miss that. My focus is totally consumed with cancer. She is the third partner in the menage a trois of our lives, Joe says. Joe is an extremely talented poet who I dreamed to share a good life with. Now, we are just muddling through. Today, my parents are married 36 years. I may be lucky to get to 36. I am so sorrowing. Last year, on this date, Joe and I made love for the first time. He told me he loved me. I felt so blessed. I still feel blessed to have him by my side. I feel so awful it has to be this way. The drugs make me crazy and mean sometimes. Actually, a lot of the time. The doctor tells half truths. I have done the most today that I have done in weeks. I wrote a song and wrote a blog. I feel accomplished. Check Joe's work out. Joe Weil. I am half the poet in his and most certainly a quarter of the person. I'm just the gal unlucky enough to let cancer rear it's ugly disgusted pock marked head at me.
I could post poetry here; but I will probably just use this as a place to rant and rave, to complain, or to cry in between the alphabet. I long for a regular day. My jeans hang out on the line, but my side hurts miserably. Thanks for letting me complain here. Pray for a bone marrow for me. Pray for life. I have had a hard one. And if not, at least a happy death. I tell Joe I want to go before I get too bad. I saw a woman at the doctor's office, who, a few months before, was up and about, talking and walking, and so intelligent. At the beginning of the summer, she could barely hold up her head. Her son goes to Holy Cross. Her husband is well built and obviously has a good job. If that happens, well, I will not let that happen. Tonight, I am going to try to see my mentor read at my alma mater. It is over an hour ride and I know I will be exhausted. But, I have to stay in life somehow, even if it's only for bits and pieces, even if the type is broken, the words caught under my tongue.
The docs at Fox Chase will not do the bone marrow unless I have a good remission. Until the last cat scan, (I live in the prospect of cat scans) the doc said I was doing better. I still have to take pain killers for the pain on my side. The lymphoma is in my lung and while some has cleared up, it's still hanging out take pleasure in destroying me. It has been hard to be optimistic. The hope in the bone marrow keeps me hanging on. Hanging in. Whatever way you want to describe it. I am so afraid of this limbo period. My appetite is not the greatest so I know that I don't have that much improvement. It is weird to know this may be a document of my dying. But, comforting in a way, too, because on the My Space it doesn't seem the place for such serious talk. I don't know.
Don't trust me. I am an unreliable narrator. I know that everyone around me is having a hard time with this. But, when it has come down to it, it has only been my boyfriend Joe and my mom and Dad that have done the chemo treatments and everything else. I would give up today if not for Joe. He's a bedrock and puts up with my shit on a minute to minute basis. I wish this blog could be about where my writing is going. That's what it used to be about. I miss that. My focus is totally consumed with cancer. She is the third partner in the menage a trois of our lives, Joe says. Joe is an extremely talented poet who I dreamed to share a good life with. Now, we are just muddling through. Today, my parents are married 36 years. I may be lucky to get to 36. I am so sorrowing. Last year, on this date, Joe and I made love for the first time. He told me he loved me. I felt so blessed. I still feel blessed to have him by my side. I feel so awful it has to be this way. The drugs make me crazy and mean sometimes. Actually, a lot of the time. The doctor tells half truths. I have done the most today that I have done in weeks. I wrote a song and wrote a blog. I feel accomplished. Check Joe's work out. Joe Weil. I am half the poet in his and most certainly a quarter of the person. I'm just the gal unlucky enough to let cancer rear it's ugly disgusted pock marked head at me.
I could post poetry here; but I will probably just use this as a place to rant and rave, to complain, or to cry in between the alphabet. I long for a regular day. My jeans hang out on the line, but my side hurts miserably. Thanks for letting me complain here. Pray for a bone marrow for me. Pray for life. I have had a hard one. And if not, at least a happy death. I tell Joe I want to go before I get too bad. I saw a woman at the doctor's office, who, a few months before, was up and about, talking and walking, and so intelligent. At the beginning of the summer, she could barely hold up her head. Her son goes to Holy Cross. Her husband is well built and obviously has a good job. If that happens, well, I will not let that happen. Tonight, I am going to try to see my mentor read at my alma mater. It is over an hour ride and I know I will be exhausted. But, I have to stay in life somehow, even if it's only for bits and pieces, even if the type is broken, the words caught under my tongue.
Subscribe to:
Posts (Atom)