It has just been so long. Just so many things have happened. But I will be able to sum them up very quickly. Summer of 2011 was the best. Never felt so good as long as I can remember. Enjoyed Italy in a way I cannot describe. Had fun down the Cape, had time with my kids and husband, worked out at least three times a week, and worked 30-40 hours a week. But most of all I was away from Dana-Farber on a hiatus from chemotherapy. Then the pre-Labor Day scan happened and the results made my heart melt, my stomach sink, and my body convulse with sadness. The scan was worse than expected with tumor growth in my liver and in my lungs. And it doesn't take an oncologist to know that it was to be back to chemotherapy. So I did as any good patient would do and I held it off for as long as I could. I needed a few more weekends. So I went to a wedding, bonded more with Jay's dog, Carla, went to New Orleans to give my daughter a blessing before she moved and had a few more dinners out with my husband and Mario.
At this time treatment has resumed for a couple of months. Not first line treatment. That wore itself out. I should say it wore me out but my life was rejuvenated after the summer so my cancer wore the treatment out BEFORE it wore me out. After almost 90 treatments I guess it was expected. Oh, no. wait a minute - the expectation was for me not to survive it but I still stood. In fact I stood strong! So now it is second line treatment and I have never felt this negative in my whole cancer journey. I feel guilty about having less hope than I have ever had. I feel just terrible that my mood has been down, I don't feel like being social, and I am just anticipating doom.
This week is a big week. I get a scan then find out results. The guilt I feel about not being optimistic weighs heavily on me. Having this turmoil because I don't feel the way I want is probably worse than just feeling the way I feel. But this inner storm will be over when the scan results are reviewed because the results will dictate how I will feel. It's very simple, positive results, positive attitude, negative results, negative attitude. Never will be things so cut and dry. (LOL).
Everyone says I still look good - I keep blaming that on the lipstick!
Monday, November 7, 2011
Saturday, July 30, 2011
Strength from Cancer
I haven't posted in a very long time. Just such a busy summer. I have been off chemotherapy for about 6 weeks and I am trying to enjoy and really feel every minute of it. Feeling healthy and strong is such a gift. As with everyone, the future is so unknown. I try very hard not to think of it. So as I spoke of so my times the future can be my delusional world. But this summer is no delusion, it is my reality. I am strong-I can work and play with such ferocity!!!
Today I look at some of the gifts that cancer gave me: I have developed closer relationships with my friends and family. I can tell them how much I love them, I can be me- the new me, the greatful me and the much more appreciative me, not taking for granted these people that help give me strength. I also think I have developed a closer relationship with God-I actually argue with him, debate with him, plead to him, respect him and just have plain old conversation. Since my cancer diagnosis I have developed an amazing strength - this feeling is so unbelievable. After almost four years of chemotherapy treatments (something like 87 treatments) I am alive and kicking harder and stronger than ever before. Now I can notice more details - the sky, the grass, my house, my patients, mindless entertainment, the shear beuty of music, the vivd color of red in my lipstick...I could go on and on but I think you can get the picture. I can't believe I have let myself really love a dog- thanks Jay, thanks Mario - I think cancer let me open my eyes to the beauty and wonder of animals. I have learned not be judgemental - for every negative I may think I need to find a positive - it is not always easy but it is an exercise that keeps me at peace.
This list of gifts is not complete and comprehensive but they are great examples. There is such a contrast between life without chemotherapy and the freedom of this summer. It makes me be more thankful for all that I have, all that I see, all that I love. Although this is temporary freedom I see it as such a recharge. I can really count my blessings and try to find some good in things that really upset me. I feel this inner peacefulness through any struggle. My motto has been "don't sweat the small stuff." And even the big stuff is something I can handle. We only have so much energy and I try not to waste mine on petty things. I feel I didn't need cancer to learn to appreciate things, but I have to say it gave me the strength. I can't go so far as to call it a gift but bad things bring about good things if you are open, willing to change and use your strength. I guess cancer was the catalyst, the kick in the pants to this newfound strength. I am flexing my muscles and I am not going to be taken down without a fight.
Today I look at some of the gifts that cancer gave me: I have developed closer relationships with my friends and family. I can tell them how much I love them, I can be me- the new me, the greatful me and the much more appreciative me, not taking for granted these people that help give me strength. I also think I have developed a closer relationship with God-I actually argue with him, debate with him, plead to him, respect him and just have plain old conversation. Since my cancer diagnosis I have developed an amazing strength - this feeling is so unbelievable. After almost four years of chemotherapy treatments (something like 87 treatments) I am alive and kicking harder and stronger than ever before. Now I can notice more details - the sky, the grass, my house, my patients, mindless entertainment, the shear beuty of music, the vivd color of red in my lipstick...I could go on and on but I think you can get the picture. I can't believe I have let myself really love a dog- thanks Jay, thanks Mario - I think cancer let me open my eyes to the beauty and wonder of animals. I have learned not be judgemental - for every negative I may think I need to find a positive - it is not always easy but it is an exercise that keeps me at peace.
This list of gifts is not complete and comprehensive but they are great examples. There is such a contrast between life without chemotherapy and the freedom of this summer. It makes me be more thankful for all that I have, all that I see, all that I love. Although this is temporary freedom I see it as such a recharge. I can really count my blessings and try to find some good in things that really upset me. I feel this inner peacefulness through any struggle. My motto has been "don't sweat the small stuff." And even the big stuff is something I can handle. We only have so much energy and I try not to waste mine on petty things. I feel I didn't need cancer to learn to appreciate things, but I have to say it gave me the strength. I can't go so far as to call it a gift but bad things bring about good things if you are open, willing to change and use your strength. I guess cancer was the catalyst, the kick in the pants to this newfound strength. I am flexing my muscles and I am not going to be taken down without a fight.
Monday, May 23, 2011
A Miraculous Year
Just a little story - When Mario was about 4 years old we got one of those fighting fish that lives alone and swims around in a vase. When we got the fish we wanted to prepare Mario in case the fish died. So we told him that fish don't always live very long and for him to enjoy watching the fish while we had him swimming around the vase. After our little talk he would get up every morning, look at the fish, and proudly announce "he's not dead yet!" Well it's my birthday today. In fact, the 4th since I have been told I had StageIV Colon Cancer and there was no cure. I was told of the minimal treatment options - immediate surgery and then chemotherapy to prolong my life. Life expectancy was 2 and a half years. Well, I wake up this morning and I say to myself, "I'm not dead yet." In fact I feel very much alive. I've already been to the gym for a work out. I plan to work 30 hours this week. I will help Mario with his homework, attend at least one of his baseball games, and watch some mindless television. I will also spend time dog-sitting with Jay's new puppy. And yes, for many of you that know me I did say dog-sitting.
Well a year older is a blessing, especially when you have your health. In most ways I really try to fit in that category. As my oncologist says "You are just a healthy person that happens to have cancer." Most days I believe him. Although there have been some times that I truly wanted this fight to be over and I think - a healthy person with cancer, that's bulls$#%, healthy and cancer is just an oxymoron and should never be spoken in the same sentence.
There are many people that have this dreaded disease of cancer that I think about today and often. I pray for them every day. Many have died with this disease, many are dying. But I need to say that I know nobody who has given in to this disease without a valiant fight. I have seen other healthy people deal with very bad cancers. It is inspiring. However, it is even sadder when they die or they can't fight anymore and I have shed and will continue to shed many tears.
But today is my birthday! I received a beautiful gift from my husband, not just the earrings (but I need to say they are gorgeous) but the whole idea that he continues in his love affair with me throughout these past four years of the unknown. I really love you Michael.
And to all my readers and fans - thank you for all the birthday wishes, and thank you for all the love and support over this past year. For without it, this year that has truly been full of joy, sickness, strength, sadness, health, laughter, love, and tears never would have been a reality. And you know what - "I'm not dead yet!" Oh and one more accolade - thank you red lipstick for sometimes helping me to look better than I feel. Hugs to all of you.
Monday, April 25, 2011
Beliefs
Another long time has passed since I wrote on this blog. Had many thoughts throughout these past weeks but a little lazy about finding the time. We just had Easter at my house yesterday. Last Easter was very quiet - But not this Easter. Michelle and Jay were home. (Also a new addition, Carla, Jay's chocolate lab puppy). Looking at my two oldest now makes me smile. They have achieved...they are moving forward...they just make me so proud I want to well up with tears (oh, and smile at the same time.). Then Mario...such a little genius that just needs to learn to harness his energy...he will achieve...he will move forward.
So having my house full continues to be so important - it makes me think that year after year this is going to happen. But then those stupid ghosts come creeping in. But the ghost is a little different on this holiday. She is a little stronger. She sees strength in her children. She see strength in her husband. The ghost of holiday's past is very proud, still profoundly sad that she can't be there but she knows that death is an inevitable part of life. Those that we love die but through it all life goes on. And to paraphrase something my nephew Andrew wrote - Beliefs in God, beliefs in family, and beliefs in friends will get you through. For those that don't know, Andrew in my 12 year old nephew who at 8 years old was witness to the death of his then 11 year old brother. Sometimes we get strength from some of the most phenomenal places!!!!
There have been other sad things over these past weeks - friends getting new cancer diagnoses, the death of my special friend Alexander at 20 months old from a cancer he was fighting since he was 8 months and the death of a man that was in my cancer support group. Somehow life will move on for each and every one of those living and fighting. Life will move on for those left on earth. My friends will battle cancer, Alexander's parents will walk the minute by minute walk of life, and families and friends under God's graces will continue to survive with the memories.
Everyday there are terrible tragedies. There are enormous ones like in Japan and there are other enormous ones, yet not as publicized such as Alexander's death a few weeks ago and my nephew Timothy's death over three years ago. How about my terminal cancer diagnosis just a month after Timothy died - a tragedy added to another tragedy. Prayer, love, support, and yes my red lipstick are things that keep life going in the face of such devastation. But my nephew Andrew put it very nicely and very succinctly Beliefs in God, family, and friends will get us through our darkest times. Hey Andrew, didn't you forget the red lipstick???
Monday, February 28, 2011
A Good Day
I have to say that it is pretty funny how much energy you can muster when there is something you really want to do. "Not feeling very well" is pretty much my status quo. But somehow or other I have been able to laugh, socialize, go to Church, shop, cook, clean, wear my high heels, put on my red lipstick, and work - maybe not as much as I like but never the less, I still have these parts of my life. It was a good day yesterday because I did every one of these things (except work).
Don't get me wrong. I have periods of sadness, pain, and weakness. (If you a readers of this blog I have no need to tell you about it.) I have the need to feel, these feelings. But I can understand the importance of taking advantage of the days that feel normal; the days that are status quo. Those are the days to push, to forge on ahead, to live life, to be hopeful and to be thankful.
So today is one of those days and I am compelled to write about it. Just a normal day and I rejoice! Thinking of my last scan and hearing the word "calcifications" for the first time and I rejoice! Attending Sunday Mass and I rejoice! Having dinner with my family and I rejoice! Fresh, clean sheets on the bed and I rejoice! Looking at my husband and children's pictures and I rejoice. Shopping and finding a bargain and I rejoice! Thinking about my career in healthcare and I rejoice! There are so many things in my life that are good. Not just good, but great. Today I will continue to notice the good things and put the scary, bad things aside.
So today is one of those days I feel alive. I feel like I will beat this cancer. I realize that I have already beaten the odds. I will continue to rejoice the good things in my life. And today I will also pray for those that see nothing but darkness in their lives. Everyone deserves a little light and in the midst of bad things you may have to dig for that light, or even wait for that light. And when it flickers just push to make it shine. Have a great day everyone. I've climbed through the darkness yet another time. I've made status quo feel wonderful!
Tuesday, February 22, 2011
The Ghost Came for a Visit
I am feeling very sad and very guilty today. I am thinking about my son Mario's needs. OK, he is almost 12 but he still has a need to be entertained. It is school vacation week and I just can't seem to fill that need in him. I have been making attempts but they seem to be very feeble in comparison to the personal dimensions of his need. He has said to me on many occasions that he wishes I was like the old mom. He remembers me being like the energizer bunny - very happy memories. I hear his engine rev even when he is tired. Just last night he took Mario snowtubing with the Nazarro Center. Over the weekend he just occupied his time, being able to get him to where he needed to go, picking him up - reallt being such a great father. Then here I am - "Sorry Mario, I have treatment." I go to bed at night thinking I'll have a stronger day tomorrow - but it is usually wishful thinking and I feel just awful. But I keep on trying and that's all I can do. ALL I CAN DO - those words hang heavily in my head: just as the pins and needle feelings hang heavily on my fingers and toes, feelings of nausea hang heavily in my belly, and feelings of low self-worth hang in my thoughts.
The ghost of me appears again. Everybody snow-tubing with Mario including Michael, Carl, Sofia, Ernie, Maria, Jenna, Evan, TJ, and Nick. All having a good time, enjoying eachother's company, laughing with the kids, adults cold, children just playing in the cold. There's all the actions, there's all the feelings that I want to be a part. And where's the boy's mother???? Last night I was the ghost in the trees.
So today, Mario and I made Candy Apples. We were working on this project at 8AM. I was physically and emotionally present and it felt good. But a few hours later I hear him on the phone telling Alan, a good friend of the family who lives in our neighborhood, "my mom really can't do anything much with me today. She doesn't feel good and she is tired. Can I come hang with you?" We were in the room together when he made this call, though tried hard to muffle the conversation, knowing it would inflict some pain if I heard him talking out loud. What a considerate boy!
So I spend the afternoon feeling sad and guilty. I try so hard to be the normal mom. I try so hard to offer entertainment to my beautiful Mario. I think that I failed today on both counts. But now I spy the candy apples, I spy the core of the one he has already eaten. Mario I love you, it is not fair that you have a mother who is sick but the reality is that I love you as much as I could even if I wasn't sick. and even when I am not there my thoughts will always be and even when I leave this world my ghost will never stop enjoying your moments. And sometimes the ghosts seem to come out early, just to see how it feels.
The ghost of me appears again. Everybody snow-tubing with Mario including Michael, Carl, Sofia, Ernie, Maria, Jenna, Evan, TJ, and Nick. All having a good time, enjoying eachother's company, laughing with the kids, adults cold, children just playing in the cold. There's all the actions, there's all the feelings that I want to be a part. And where's the boy's mother???? Last night I was the ghost in the trees.
So today, Mario and I made Candy Apples. We were working on this project at 8AM. I was physically and emotionally present and it felt good. But a few hours later I hear him on the phone telling Alan, a good friend of the family who lives in our neighborhood, "my mom really can't do anything much with me today. She doesn't feel good and she is tired. Can I come hang with you?" We were in the room together when he made this call, though tried hard to muffle the conversation, knowing it would inflict some pain if I heard him talking out loud. What a considerate boy!
So I spend the afternoon feeling sad and guilty. I try so hard to be the normal mom. I try so hard to offer entertainment to my beautiful Mario. I think that I failed today on both counts. But now I spy the candy apples, I spy the core of the one he has already eaten. Mario I love you, it is not fair that you have a mother who is sick but the reality is that I love you as much as I could even if I wasn't sick. and even when I am not there my thoughts will always be and even when I leave this world my ghost will never stop enjoying your moments. And sometimes the ghosts seem to come out early, just to see how it feels.
Monday, February 14, 2011
Happy Week
I am only going to say good and positive things on this post. Having limited treatment 2 weeks ago and no treatment this past weekend really gave me a chance to feel like I was on a mini-vacation. Very mini, but I know how to pack a lot into the times I am feeling good. With chemo every week those times have been limited but I'm not going to complain because I had such a jam-packed two weeks. It was such a respite from a pretty sickly existence. Met with past and presents firends. And I mean past - there were friends from Franciscan Children's Hospital where I held a job 20 years ago. Friends from before Michael and I were married. Present day friends mixed with friends from the past. Past friends that have been with me throughout the many years of my life. Family, mixed with firends. I wish I could list all the names but I am afraid that I will miss someone. I would never want to offend anyone. But you all know who you are. There were many friends that I did not get to so I am saving that for my next weekend off. I know who you all are.
So tomorrow I work, as well as the next and the next. They will be all good days. Then Friday comes and I will get hammered with the poisons that keep me alive. But I won't digress (or regress). So I give myself a big pat on the back for not letting a spare minute of my "well" time go by without filling it in a positive way. So as I sit in my chemo chair on Friday, wearing high heels and sporting my lipstick I will run my mind over the past 10 days that have brought me nothing but joy. And then I will plan for the next time I get so much as a week's break. It will keep me happy.
Perspectives differ for me now than they did when I first started treatment. Before it would be "one week, only one week" now "thank you for that one "long" week." I try to be grateful for everything. I am grateful for everyone that takes the time to read this blog. For many reasons I write and for many reasons people read. I continue to be grateful for my red lipstick. Both make my smile just that much more prominent.
One last thing Happy Valentines Day to all my fans - I've taken your hearts, wove them into a blanket and am feeling myself wrapped up in them all. Just another thing to broaden the smile on my face.
So tomorrow I work, as well as the next and the next. They will be all good days. Then Friday comes and I will get hammered with the poisons that keep me alive. But I won't digress (or regress). So I give myself a big pat on the back for not letting a spare minute of my "well" time go by without filling it in a positive way. So as I sit in my chemo chair on Friday, wearing high heels and sporting my lipstick I will run my mind over the past 10 days that have brought me nothing but joy. And then I will plan for the next time I get so much as a week's break. It will keep me happy.
Perspectives differ for me now than they did when I first started treatment. Before it would be "one week, only one week" now "thank you for that one "long" week." I try to be grateful for everything. I am grateful for everyone that takes the time to read this blog. For many reasons I write and for many reasons people read. I continue to be grateful for my red lipstick. Both make my smile just that much more prominent.
One last thing Happy Valentines Day to all my fans - I've taken your hearts, wove them into a blanket and am feeling myself wrapped up in them all. Just another thing to broaden the smile on my face.
Monday, January 24, 2011
Another Blog Entry
My last post was over a month ago. My mind has been racing and when this happens, putting thoughts down in words in any coherent fashion just gets so complicated. But here is my attempt.
- My mind can't help thinkng about two friends also fighting cancer - Alexander (18 months) and Mike (about my age) - keep them in your thoughts and prayers. And a friend that lost her husband through cancer just about a year ago - keep Kelly and her 3 children in your thoughts and prayers as well. And while I'm on the subject - just found out that a friend of mine from my previous support group has run out of options - will you keep Doug and his wife Betty in those prayers as well. Oh, and add my sister's husband - keep Wade in your thoughts and prayers. Then I just got a call from a friend, asking me to call a friend of hers to offer support because this friend a of a friend has just recieved a cancer diagnosis. Then my friend Heather who continues to battle stage 4 breast cancer - this woman is awesome, actually started her own support group when she couldn't find one that was able to meet her needs. A few more prayers for her please. And just one more person - someone who found me on line (most likely through this blog) who lives way up in Alberta, Canada. She honored me by asking me to be her mentor through her cancer journey. We do have a lot in common. Her name is Wafa. Please add her to your prayer list.
Then there are the many people who I see at Dana-Farber. Week after week of chemo is very draining on me but watching those at Dana-Farber fighting their own battle with cancer is inspiring. Please send prayers to all those nameless people as well.
Most people that are reading this can add to my list. Most people have a cancer story or two or three or four etc., etc.,. As I've said before, I see such examples of strength in other people and they just keep on going. I'm going to venture that what gets them through is the love, support and prayers from their friends and family. Also from the prayers of strangers, friends of friends of friends.
Cancer is not the only disease in this world that causes suffereing. It is one of many of the horrible afflictions that make valliant attempts to wear down the mind and the body. There is heart disease, brain injury, degenerative nervous system diseases. With this cold, cold weather upon us I think about those without shelter of their own. In these rough economic times I think of those without food and without gainful employment. Friends and family, please offer your prayerful expressions to them. On and on the list can go - mental illness, what a demon it is!!! Those that fight wars, families of those that fight wars - keep that stream of prayers coming.
I don't think life was really meant to be easy. Sometimes I wonder if it is just meant to be tolerable. Then I open my eyes and arms really, really, really wide and see love, feel good thoughts, and understand the value of prayers.
Sharing in eachother's joys and sorrows is the glue that bonds us all together. Where are the joys in this blog entry - an upcoming Franciscan Children's Hospital reunion, a night out with family at Fuddrucker's, a new and satisfying job for my daughter, my Women's Health Group at work, a friend's daughter's wedding, a new baby, lipstick... I should probably elaborate on these kind of things on the next post. But I mention them now because I know they are there.
I just composed a blog entry - I see a flight of ideas but I do see some common threads. So as my son is being taught in 6th grade language arts - end with a clinching statement to pull everything together. Can anybody think of one????
- My mind can't help thinkng about two friends also fighting cancer - Alexander (18 months) and Mike (about my age) - keep them in your thoughts and prayers. And a friend that lost her husband through cancer just about a year ago - keep Kelly and her 3 children in your thoughts and prayers as well. And while I'm on the subject - just found out that a friend of mine from my previous support group has run out of options - will you keep Doug and his wife Betty in those prayers as well. Oh, and add my sister's husband - keep Wade in your thoughts and prayers. Then I just got a call from a friend, asking me to call a friend of hers to offer support because this friend a of a friend has just recieved a cancer diagnosis. Then my friend Heather who continues to battle stage 4 breast cancer - this woman is awesome, actually started her own support group when she couldn't find one that was able to meet her needs. A few more prayers for her please. And just one more person - someone who found me on line (most likely through this blog) who lives way up in Alberta, Canada. She honored me by asking me to be her mentor through her cancer journey. We do have a lot in common. Her name is Wafa. Please add her to your prayer list.
Then there are the many people who I see at Dana-Farber. Week after week of chemo is very draining on me but watching those at Dana-Farber fighting their own battle with cancer is inspiring. Please send prayers to all those nameless people as well.
Most people that are reading this can add to my list. Most people have a cancer story or two or three or four etc., etc.,. As I've said before, I see such examples of strength in other people and they just keep on going. I'm going to venture that what gets them through is the love, support and prayers from their friends and family. Also from the prayers of strangers, friends of friends of friends.
Cancer is not the only disease in this world that causes suffereing. It is one of many of the horrible afflictions that make valliant attempts to wear down the mind and the body. There is heart disease, brain injury, degenerative nervous system diseases. With this cold, cold weather upon us I think about those without shelter of their own. In these rough economic times I think of those without food and without gainful employment. Friends and family, please offer your prayerful expressions to them. On and on the list can go - mental illness, what a demon it is!!! Those that fight wars, families of those that fight wars - keep that stream of prayers coming.
I don't think life was really meant to be easy. Sometimes I wonder if it is just meant to be tolerable. Then I open my eyes and arms really, really, really wide and see love, feel good thoughts, and understand the value of prayers.
Sharing in eachother's joys and sorrows is the glue that bonds us all together. Where are the joys in this blog entry - an upcoming Franciscan Children's Hospital reunion, a night out with family at Fuddrucker's, a new and satisfying job for my daughter, my Women's Health Group at work, a friend's daughter's wedding, a new baby, lipstick... I should probably elaborate on these kind of things on the next post. But I mention them now because I know they are there.
I just composed a blog entry - I see a flight of ideas but I do see some common threads. So as my son is being taught in 6th grade language arts - end with a clinching statement to pull everything together. Can anybody think of one????
Tuesday, December 7, 2010
Old Life / New Life
I so badly want my old life back. This thought hits me in the morning when I go back to bed after Mario heads off to school. I would love to be getting dressed and going to work. I feel it after I wake up. Just taking a shower, getting dressed, and putting on lipstick should not be followed by a nap. Can't stand not having energy. I long for my old life when Mario gets home from school and I don't have the strength or the clear thought processes to work with him on his homework. Oh, how I wish I could celebrate, I mean really go out and celebrate my daughter, Michelle for her new job in Public Relations and my son , Gennaro (Jay) nailing down a job in finance 3 months before graduation. Over the weekend my husband did the housework, carted Mario where he needed to go, and put up the outside Christmas Lights. Oh to have my old life - to enjoy the mundane as well as the occasions that call for celebration. I missed Mario's basketball game and with this thought I long for my old life. Tried to work-out a little, just at my home. Nausea and fatigue followed. Oh, how my life used to be different!
I am very sad that I have treatment every week! It keeps me from living my old life. Not a fast paced, jet setting, magazine style life. Just the everyday things that I once took for granted. Work, housecleaning, homework time, family celebrations, kids sports, church, and excersize seem to be the things I long for. Life before chemo - It teased me for the last couple of weeks. I continue to lament about quality vs. quantity.
For every piece of my old life that I did not appreciate, for every friend and family member that I overlooked, for every day to day task that I complained about I feel the need to be apologetic. For all were the best in my life. Lessons learned through my cancer journey have been very simple, humbling, and profound. I really had it as good as it gets.
I am not being ungreatful for the things I have now or the things I gained as cancer continues to take its course. There is a different kind of closeness with my friends and family; I am sincerely greatful for all my human interactions; the days I make it to Mario's games are never met with "oh, do I have to go"; the good conversations with Michelle and Jay are replayed in my mind over and over; if I go out to exercise or work I am taken back by how it normalizes my life; and looking at my husband with sincere gratitude fills me with satisfaction.
Today I will try to appreciate the things my new life brought me and stop feeling sorry for myself because I can't have the old life. I will do this right after I take a little nap. Posting really makes me tired.
I am very sad that I have treatment every week! It keeps me from living my old life. Not a fast paced, jet setting, magazine style life. Just the everyday things that I once took for granted. Work, housecleaning, homework time, family celebrations, kids sports, church, and excersize seem to be the things I long for. Life before chemo - It teased me for the last couple of weeks. I continue to lament about quality vs. quantity.
For every piece of my old life that I did not appreciate, for every friend and family member that I overlooked, for every day to day task that I complained about I feel the need to be apologetic. For all were the best in my life. Lessons learned through my cancer journey have been very simple, humbling, and profound. I really had it as good as it gets.
I am not being ungreatful for the things I have now or the things I gained as cancer continues to take its course. There is a different kind of closeness with my friends and family; I am sincerely greatful for all my human interactions; the days I make it to Mario's games are never met with "oh, do I have to go"; the good conversations with Michelle and Jay are replayed in my mind over and over; if I go out to exercise or work I am taken back by how it normalizes my life; and looking at my husband with sincere gratitude fills me with satisfaction.
Today I will try to appreciate the things my new life brought me and stop feeling sorry for myself because I can't have the old life. I will do this right after I take a little nap. Posting really makes me tired.
Tuesday, November 9, 2010
Thanksgiving - My Saving Grace
It has been a while since I wrote but now I feel the need. I can't help but to contemplate the "quality vs. quantity" question that keeps bothering my brain. I don't just think it in those words but there are so many thoughts and questions to contemplate - all that bring me to "quality vs. quantity." These thoughts include "you are strong so keep fighting this thing", "what are you trying to prove", " does this make sense", "with a good scan I have to keep going," how much longer can I live this tortured life", " I don't want to check out earlier than I have too.", "How much more can I take", "is all this post-chemo reactions really giving me life", "these decisions are just too hard", what is best for my family"...and on and on my mind will race.
For me, sleeping is the only thing that can calm these racing thoughts. Thankfully these days sleepings comes easily, as a side effect of the chemo and anti-drugs. But it only helps me to avoid big time thoughts and decisions. But it can be such a peaceful state - free from pain, worry, and cares. So I wonder more if death will be like a peaceful sleep. Slow down brain because I really don't want to go there. So I remember that I just need to live a little at a time so that life doesn't feel so overwhelming. I've got something to get me through the month of November - I look forward to Thanksgiving. And yes, Thanksgiving at my house, as has been the tradition for many years. So I know that I will be safe in November because I've got a show to put on. I understand that the ghosts will most likely appear, but over these last couple of weeks, they have been appearing at a frightful rate anyway.
So back to where I started - "quality vs. quantity" - It just depends on the day, depends on the mood, depends upon how much reality I can escape. For I feel a very deteriorated quality of life. But now I have Thanksgiving to focus on - the holiday, the tradition, my family, the food. And yes, there will be wine to drink which can drown the sound of the whine in my heart. And as an added bonus - I have the Friday after Thanksgiving off from any chemotherapy - Thank you again Thanksgiving.
For me, sleeping is the only thing that can calm these racing thoughts. Thankfully these days sleepings comes easily, as a side effect of the chemo and anti-drugs. But it only helps me to avoid big time thoughts and decisions. But it can be such a peaceful state - free from pain, worry, and cares. So I wonder more if death will be like a peaceful sleep. Slow down brain because I really don't want to go there. So I remember that I just need to live a little at a time so that life doesn't feel so overwhelming. I've got something to get me through the month of November - I look forward to Thanksgiving. And yes, Thanksgiving at my house, as has been the tradition for many years. So I know that I will be safe in November because I've got a show to put on. I understand that the ghosts will most likely appear, but over these last couple of weeks, they have been appearing at a frightful rate anyway.
So back to where I started - "quality vs. quantity" - It just depends on the day, depends on the mood, depends upon how much reality I can escape. For I feel a very deteriorated quality of life. But now I have Thanksgiving to focus on - the holiday, the tradition, my family, the food. And yes, there will be wine to drink which can drown the sound of the whine in my heart. And as an added bonus - I have the Friday after Thanksgiving off from any chemotherapy - Thank you again Thanksgiving.
Tuesday, October 12, 2010
Moderation
It's 7:30 AM, got Mario off too school (I just love that kid), and I am lying here feeling a mess. I keep saying. "Get up and make yourself move" "Why aren't you working today?" Why aren't you at the gym?" "Shouldn't you be doing housework?" But there is complete exhaustion at this point. And all I did was wake up with my husband and Mario, get Mario breakfast, made him lunch, told him to brush his teeth, and kiss him good-bye. Could anyone guess...possibly 100 calories expelled. But I have no energy! I also have hair that continues to fall out in small chunks, skin that is peeling off my face, and lips that feel so swollen because I have mouth sores in the inner part. And that is only what is wrong with my head and my face! (Not even near a complete physical exam.)
My mind continues to talk with two different voices - one is telling me get up, don't go back to sleep, the day is just starting, you'll feel better if you just make yourself stay up. And at what cost - possibly a great day with me dancing on the rooftop saying that all I needed was a little push. The other part is watching me dance on the rooftop, calling me a fool, and watching me tumble down to the ground and add to my self-deprecating feelings.
Unfortunately there is no way to "will" yourself to wellness. I keep trying to do that and when it works I'll let you all in on the secret. What a great Nurse Practitioner I would be if I could teach my patients to will themselves to wellness. What a gimmick! Could they will themselves to thinness, will themselves to strength, will themselves to beauty, maybe even will themselves to equality. (W0w, Will yourself to equality - that is something to ponder, but I'll save that for another time. I think my brain is too tired to ponder right now.)
There has got to be something positive to be said for that pull yourself up by your bootstraps, a good kick in the pants to get yourself going, not sitting around feeling sorry for yourself attitude. But if you don't tread slowly and carefully then you'll end up falling off the roof that you just saw yourself dancing.
Everything in life is a balancing act. Everything in moderation. You need goals but you also need reality in those goals. This is the way I plan to get through the rest of my life. (At least this is today's plan) Set up small goals - each small goal should get you closer to a large one. Now I need a short nap - My ultimate goal is to get out of the house today and accomplish some sort of errand. How will I do this - just put one foot in front of the other. Get up after my nap, take a shower, clean all my hair out of the drain, brush my teeth, get hold of myself once the stinging from the toothpaste on the mouthsores subside, then time for makeup to cover the skin problems created by chemo, and lastly put on my red lipstick in an effort to look like I have sexy, botox injected lips instead of just covering up some of the cosmetic damage from the internal mouthsores. Within these steps I have to remember to put some clothes on to cover this body that has been recently neglected by lack of exercise.
I didn't want this post to be negative. I was really hoping it would tell everyone that I was dancing on rooftops, dressed to the nines wearing a great big red lipstick smile despite the way chemotheray and cancer dance in my body. Unfortunately I'm not there yet. I'll try to be easy on myself, and try to intellectualize the effects of chemotherapy on the body and the mind. But as all things should come in moderation but my chemotherapy has not. I've been on chemotherapy, almost consistently, for the past three years and now I have this power schedule of chemo every week. That's not moderation. That's total immersion. So now I have a bright side to end this entry. The amount of chetherapy I've had is enough to kill anyone. But I'm still very much alive, still trying to fight to have a normal life. I'm just a little slower and a little tireder than before. So the nap sounds good but I promise all my friends and family that I will be awake later finding something else to beat myself up about.
My mind continues to talk with two different voices - one is telling me get up, don't go back to sleep, the day is just starting, you'll feel better if you just make yourself stay up. And at what cost - possibly a great day with me dancing on the rooftop saying that all I needed was a little push. The other part is watching me dance on the rooftop, calling me a fool, and watching me tumble down to the ground and add to my self-deprecating feelings.
Unfortunately there is no way to "will" yourself to wellness. I keep trying to do that and when it works I'll let you all in on the secret. What a great Nurse Practitioner I would be if I could teach my patients to will themselves to wellness. What a gimmick! Could they will themselves to thinness, will themselves to strength, will themselves to beauty, maybe even will themselves to equality. (W0w, Will yourself to equality - that is something to ponder, but I'll save that for another time. I think my brain is too tired to ponder right now.)
There has got to be something positive to be said for that pull yourself up by your bootstraps, a good kick in the pants to get yourself going, not sitting around feeling sorry for yourself attitude. But if you don't tread slowly and carefully then you'll end up falling off the roof that you just saw yourself dancing.
Everything in life is a balancing act. Everything in moderation. You need goals but you also need reality in those goals. This is the way I plan to get through the rest of my life. (At least this is today's plan) Set up small goals - each small goal should get you closer to a large one. Now I need a short nap - My ultimate goal is to get out of the house today and accomplish some sort of errand. How will I do this - just put one foot in front of the other. Get up after my nap, take a shower, clean all my hair out of the drain, brush my teeth, get hold of myself once the stinging from the toothpaste on the mouthsores subside, then time for makeup to cover the skin problems created by chemo, and lastly put on my red lipstick in an effort to look like I have sexy, botox injected lips instead of just covering up some of the cosmetic damage from the internal mouthsores. Within these steps I have to remember to put some clothes on to cover this body that has been recently neglected by lack of exercise.
I didn't want this post to be negative. I was really hoping it would tell everyone that I was dancing on rooftops, dressed to the nines wearing a great big red lipstick smile despite the way chemotheray and cancer dance in my body. Unfortunately I'm not there yet. I'll try to be easy on myself, and try to intellectualize the effects of chemotherapy on the body and the mind. But as all things should come in moderation but my chemotherapy has not. I've been on chemotherapy, almost consistently, for the past three years and now I have this power schedule of chemo every week. That's not moderation. That's total immersion. So now I have a bright side to end this entry. The amount of chetherapy I've had is enough to kill anyone. But I'm still very much alive, still trying to fight to have a normal life. I'm just a little slower and a little tireder than before. So the nap sounds good but I promise all my friends and family that I will be awake later finding something else to beat myself up about.
Saturday, September 18, 2010
No Life
I'm watching the world go by me, trying to join in, hoping to feel happiness, wishing to feel something. But I feel like the ghost again, hovering over a world in which I am not a part. You see may see me. Today someone at Dana-Farber told me I really looked pretty, I had someone tell me I looked youthful, someone else said "can you believe it, I'd never pick you in a crowd as someone with cancer." I go to the mirror to look what people see and it is only a very tired shell of a person that wears red lipstick to appear as someone with life.
Is it all that chemotherapy in my system that makes me feel so unreal? Maybe it's the unbearable tiredness. It could be just this mad depression that I will go to my grave denying. Or could it be true that I am really a ghost. Because if it is really true that I have to have this chemotherapy every week I can never be me again. I'm so glad I got to shine this summer because the ghost that I am is not really me. The contrast is almost too sad to bear.
Is it all that chemotherapy in my system that makes me feel so unreal? Maybe it's the unbearable tiredness. It could be just this mad depression that I will go to my grave denying. Or could it be true that I am really a ghost. Because if it is really true that I have to have this chemotherapy every week I can never be me again. I'm so glad I got to shine this summer because the ghost that I am is not really me. The contrast is almost too sad to bear.
Wednesday, September 1, 2010
The Stupid Gift of Cancer
By now most of my readers should know the results of my scan. If not I will sum things up as they stand. Tumors are growing so I need more chemo. (Call me or check facebook for details) Although it is not easy by any stretch of the imagination I try to focus on the positive. I searched for something positive in my scan results so I started by thinking "at least it didn't go to my brain." But I could only recieve comfort from that for so long. Weekly trips to Dana-Farber are about to begin. Is there something positive - Oh yeah, I really like to talk to my nurses and Dr. Abrams, my oncologist, is a great guy. That thought was dashed very quickly from my mind. The reality is that because I will be on a clinical trial I will meet with research team doctors and nurses - all of whom I do not know. I guess there is something good in that because I will meet more wonderful Dana-Farber staff. How about this - because I will need so many rides into Dana-Farber I will get to see different friends and family, as I impinge on their generosity and time for rides, on a frequent rotating basis. Then I thought about the many fun times I've had with friends and family and we weren't even going to Dana-Farber for treatment. And this is where the "aha" moment hit me. It was easy and made perfect sense. I would do a type of thought stopping and substitute any negative thoughts with a happy memory from this past summer. I'd like to share some of those happy thoughts. (They are in no particular order.)
1. Michael, Mario, and I staying at the Hard Rock in Las Vegas. We were really rocking.
2. Inside the Hoover Dam with Mario and Michael. Mario was so fescinated he was able to tell you exactly how the generators worked when we finished the tour.
3. Also the helicoter ride over Lake Mead and the Hoover Dam. I was with Mario and he was speechless with awe. And as his mother of his eleven years, I have never seen him speechless.
4. With Mario and also with Maria, her two boys and my brother-in-law Carl- Aerosmith at Fenway. I reminded Mario that peole always remember their first concert. His memory will be Aerosmith at Fenway with his mother!!! I think that is pretty funny.
5. Early summer, I was invited to Betty's pool. Of course, I took the liberty of inviting Kathy. Mario again was with us. I brought a bottle of wine. It was 1PM...well fast forward to 7PM, Betty, Mario, and I still at the pool with three empty bottles of wine. Mario was just very polite asking "Mom. when you finish that glass of wine will you please come in the pool with me.
6. Michelle and I had quite a few days of shopping our "special stores."
7. With Joann met Sarah in Kittery and had such a nice supper, overlooking a little ocean inlet.
8. How can I forget Baltimore - Jen, Joann, Anna, Lisa, Irene, and myself - we ate, drank, and laughed over and over again. By the way, Joann was very brave and with some assistance from ativan and friends she flew for the first time in over a dozen years.
9. Anna, Carole, Lorraine - we had wine and or'derves with Debbie on her front porch. The view - my house. You don't have to travel far to have a nice evening.
10. Another Magical evening with Maria on Fourth of July. There was sangria, food, Michael, TJ, Nick, and Carl. I also made a new friend. Fireworks, friends, food, and family are a priceless combination.
11. The many weekends down the Cape, spending time with my kind and generous in-laws (Adeline, Gerry, Sofia, and Ernie) and my beautiful neice Jenna and handsome nephew Evan. Family has been everything.
12. My brother Steve turned 50 and my mother turned 80 this summer. A family backyard barbecue at my parents was a great event.
13. My gorgeous 17 year old neice Angela was baptised into her Church. I missed the Baptism, I was very late for the party but I had great conversation with my brother, his wife, and two of their friends from their church. And I think I might have convincd someone to stop being afraid and to get a screening colonoscopy.
15. The Lea Sophia jewelry party that never was - The jewelry lady cancelled but Lisa still hosted her party without the jewelry but with plenty of food, wine, and friends.
16. I told you this list is in no particular order - I'm back at the Cape, it is beginning of summer, the beach is crowded, so everyone sits as one happy group. Corona Lights (the signature drink of my summer), and all my Cape friends and family...This was a perfect beach day.
17. I managed to get five flat tires this summer - one on the way to the Cape, one on the way home from the Cape, one on my way to Church, and two on my way to the gym. Thank you Triple A, Jimmy (Tammy's husband), Dom, Julia, Michael, and Michael again. (Not a fun memory, but a memory none-the-less.)
18. Seeing Michael Flanagan (mrf) perform. His proud mother, his beautiful sister, my beautiful daughter, and her devoted boyfriend were all there. Michael was playing the piano and at that point a transvestite was singing. I looked at my daughter and said "Being in a gay bar, with my daughter, her boyfriend, and friends from the Cape, watching Michael play with a drag queen singing has to be one of the oddest, funniest, and happiest memories of the summer.
19. Meeting Michelle for lunch on Newbury Street - I got through the security in her building just by saying that I know she works in administration, she has long dark hair and she is very, very pretty. The security guard knew exactly who I meant and he sent me to the fourth floor.
20. Now I'm back in Vegas - so sorry for the confusing list. My son Jay and three of his friends met us there. I did not see Jay without a smile on his face.
21. (We'll stay in Las Vegas) Riding thrill rides with Mario and Michael.
22. And visiting the pawn shop where "Pawn Stars" is filmed and seeing the old man. That was quite a thrill to see a real movie star.
23. I'm going to add "working a lot" in my happy memories. Anna, Nick, and Vivian are the greatest people to share an office with. Nick and I worked on "Chlamydia, the Musical." Vivian and I learned that a ride in my convertible at lunch time rejuvanated us for the afternoon. And Anna we are more beautiful than Nick. Oh yeah, we saw patients as well.
24. Anna taught me how to do minor surgery - Does anyone need an ingrown toenail to be cut?
25. My friend Nancy, her baby is very sick with cancer - that is very sad, but going out for tea in China Town and having dinner at the Horseshoe Cafe were supportive times for the both of us. We also had more than a few laughs (like normal people) as well.
26. You can't have a summer without the Red Sox - Michael and I went for our 26th wedding anniversary - Yeah!! Then I went with Vivan and Carol from work and my son Mario. We missed the top of the first because we were running late and when we got into Fenway the score was 6-0 Reds Sox losing. I continue to cheer when I see Tim Wakefield.
27. The Fisherman's Feast where Michael, Mario, and I went with Deb and Bruce and met up with Maryann and her family - a wonderful reunion and celebration of Michael's birthday.
28. St. Anthony's feast where I met many of my North End facebook friends. And seeing Frankie-I love you! And you bear part of the responsibility of getting Michael and I together. And in pure Frankie style, said to my daughter's boyfriend Travis "you owe me." Stephanie - great to see you out of gym clothes.
29. I also can appreciate feeling healthy and strong. Steve, Chris, Melanie, Drew, Krista, and Susan (who I feel I have to include) were all part of my "work-out happiness at 6AM.
30. Lunch at the Langham with Maria. It's always magical when I'm with Maria.
I'm sure I missed some of happy times in my life with a chemo-free summer and missed some of the names that should be in this post. But I am only human. If I wasn't human I wouldn't have this stupid cancer. So I'll end this post, put on another application of red lipstick and smile as I review this summer. Sometimes bad things open your eyes really wide to the good things - Could that be a gift from cancer. Even if it is, I believe from the deepest part of my heart and soul that cancer is still stupid.
1. Michael, Mario, and I staying at the Hard Rock in Las Vegas. We were really rocking.
2. Inside the Hoover Dam with Mario and Michael. Mario was so fescinated he was able to tell you exactly how the generators worked when we finished the tour.
3. Also the helicoter ride over Lake Mead and the Hoover Dam. I was with Mario and he was speechless with awe. And as his mother of his eleven years, I have never seen him speechless.
4. With Mario and also with Maria, her two boys and my brother-in-law Carl- Aerosmith at Fenway. I reminded Mario that peole always remember their first concert. His memory will be Aerosmith at Fenway with his mother!!! I think that is pretty funny.
5. Early summer, I was invited to Betty's pool. Of course, I took the liberty of inviting Kathy. Mario again was with us. I brought a bottle of wine. It was 1PM...well fast forward to 7PM, Betty, Mario, and I still at the pool with three empty bottles of wine. Mario was just very polite asking "Mom. when you finish that glass of wine will you please come in the pool with me.
6. Michelle and I had quite a few days of shopping our "special stores."
7. With Joann met Sarah in Kittery and had such a nice supper, overlooking a little ocean inlet.
8. How can I forget Baltimore - Jen, Joann, Anna, Lisa, Irene, and myself - we ate, drank, and laughed over and over again. By the way, Joann was very brave and with some assistance from ativan and friends she flew for the first time in over a dozen years.
9. Anna, Carole, Lorraine - we had wine and or'derves with Debbie on her front porch. The view - my house. You don't have to travel far to have a nice evening.
10. Another Magical evening with Maria on Fourth of July. There was sangria, food, Michael, TJ, Nick, and Carl. I also made a new friend. Fireworks, friends, food, and family are a priceless combination.
11. The many weekends down the Cape, spending time with my kind and generous in-laws (Adeline, Gerry, Sofia, and Ernie) and my beautiful neice Jenna and handsome nephew Evan. Family has been everything.
12. My brother Steve turned 50 and my mother turned 80 this summer. A family backyard barbecue at my parents was a great event.
13. My gorgeous 17 year old neice Angela was baptised into her Church. I missed the Baptism, I was very late for the party but I had great conversation with my brother, his wife, and two of their friends from their church. And I think I might have convincd someone to stop being afraid and to get a screening colonoscopy.
15. The Lea Sophia jewelry party that never was - The jewelry lady cancelled but Lisa still hosted her party without the jewelry but with plenty of food, wine, and friends.
16. I told you this list is in no particular order - I'm back at the Cape, it is beginning of summer, the beach is crowded, so everyone sits as one happy group. Corona Lights (the signature drink of my summer), and all my Cape friends and family...This was a perfect beach day.
17. I managed to get five flat tires this summer - one on the way to the Cape, one on the way home from the Cape, one on my way to Church, and two on my way to the gym. Thank you Triple A, Jimmy (Tammy's husband), Dom, Julia, Michael, and Michael again. (Not a fun memory, but a memory none-the-less.)
18. Seeing Michael Flanagan (mrf) perform. His proud mother, his beautiful sister, my beautiful daughter, and her devoted boyfriend were all there. Michael was playing the piano and at that point a transvestite was singing. I looked at my daughter and said "Being in a gay bar, with my daughter, her boyfriend, and friends from the Cape, watching Michael play with a drag queen singing has to be one of the oddest, funniest, and happiest memories of the summer.
19. Meeting Michelle for lunch on Newbury Street - I got through the security in her building just by saying that I know she works in administration, she has long dark hair and she is very, very pretty. The security guard knew exactly who I meant and he sent me to the fourth floor.
20. Now I'm back in Vegas - so sorry for the confusing list. My son Jay and three of his friends met us there. I did not see Jay without a smile on his face.
21. (We'll stay in Las Vegas) Riding thrill rides with Mario and Michael.
22. And visiting the pawn shop where "Pawn Stars" is filmed and seeing the old man. That was quite a thrill to see a real movie star.
23. I'm going to add "working a lot" in my happy memories. Anna, Nick, and Vivian are the greatest people to share an office with. Nick and I worked on "Chlamydia, the Musical." Vivian and I learned that a ride in my convertible at lunch time rejuvanated us for the afternoon. And Anna we are more beautiful than Nick. Oh yeah, we saw patients as well.
24. Anna taught me how to do minor surgery - Does anyone need an ingrown toenail to be cut?
25. My friend Nancy, her baby is very sick with cancer - that is very sad, but going out for tea in China Town and having dinner at the Horseshoe Cafe were supportive times for the both of us. We also had more than a few laughs (like normal people) as well.
26. You can't have a summer without the Red Sox - Michael and I went for our 26th wedding anniversary - Yeah!! Then I went with Vivan and Carol from work and my son Mario. We missed the top of the first because we were running late and when we got into Fenway the score was 6-0 Reds Sox losing. I continue to cheer when I see Tim Wakefield.
27. The Fisherman's Feast where Michael, Mario, and I went with Deb and Bruce and met up with Maryann and her family - a wonderful reunion and celebration of Michael's birthday.
28. St. Anthony's feast where I met many of my North End facebook friends. And seeing Frankie-I love you! And you bear part of the responsibility of getting Michael and I together. And in pure Frankie style, said to my daughter's boyfriend Travis "you owe me." Stephanie - great to see you out of gym clothes.
29. I also can appreciate feeling healthy and strong. Steve, Chris, Melanie, Drew, Krista, and Susan (who I feel I have to include) were all part of my "work-out happiness at 6AM.
30. Lunch at the Langham with Maria. It's always magical when I'm with Maria.
I'm sure I missed some of happy times in my life with a chemo-free summer and missed some of the names that should be in this post. But I am only human. If I wasn't human I wouldn't have this stupid cancer. So I'll end this post, put on another application of red lipstick and smile as I review this summer. Sometimes bad things open your eyes really wide to the good things - Could that be a gift from cancer. Even if it is, I believe from the deepest part of my heart and soul that cancer is still stupid.
Wednesday, July 28, 2010
Opposite Emotions
I really feel I need to write this now but I really feel that I need to rest my mind.. I really feel the love and support I get from family and friends and I really feel empathy for those that don't have it. I really feel that my life has had (and continues to have) a purpose. I really feel that if given more time I can always upgrade that purpose. I really feel that this world can be cruel and unfair but I really feel that there is something better after this. I really feel pain but then I really feel comfort. I really feel happy but feel sadness looming over me. Opposing emotions!!! Just what the f*&k do you do with them????? Oh, that sounded a little angry but it is an honest question. Let's just say that I am frustrated because I can't find an answer that will make me happy.
I've been squirming in my seat in an effort to find my comfort zone somewhere in the middle. But what I've decided over the last couple of days is that there really is no more comfort zone. Coping with the reality of a terminal disease has made me too in tune to how I feel. I get flooded with thoughts and feelings, not just randomly but simultaneously. The more I try to beat the sadness down, the farther in sadness I sink. The more I want the happiness to sustain me I find myself in tears.
Now here comes the part I really don't understand. I thank God for my turmoil everyday. I am alive and I really feel. I really see with eyes so open. But with that comes a price because I feel that I see truth. I see the truth about myself, my relationships, my life's goals. Lately I've been able to see the world go on without me. It brings some feelings of joy and happiness. I see that the world doesn't exist just because of me. I see that there will be lot's of fun times and new memories after I am gone. Life will not stop. I experience both sadness and happiness when I face the realities of life after Rosanne. I am ecstatic to still be alive and fighting but I am horrified at the thought that I will be saying good bye! But I find comfort in the thought that I will never truly leave you. My spirit will remain and I want everyone to share in that comfort. (Or maybe I just fantasize it is a comfort)
With that I will end this post. I began with a sense of anxiety. Writing and sharing gives me a sense of peace. And again I find two more opposite emotions.
I've been squirming in my seat in an effort to find my comfort zone somewhere in the middle. But what I've decided over the last couple of days is that there really is no more comfort zone. Coping with the reality of a terminal disease has made me too in tune to how I feel. I get flooded with thoughts and feelings, not just randomly but simultaneously. The more I try to beat the sadness down, the farther in sadness I sink. The more I want the happiness to sustain me I find myself in tears.
Now here comes the part I really don't understand. I thank God for my turmoil everyday. I am alive and I really feel. I really see with eyes so open. But with that comes a price because I feel that I see truth. I see the truth about myself, my relationships, my life's goals. Lately I've been able to see the world go on without me. It brings some feelings of joy and happiness. I see that the world doesn't exist just because of me. I see that there will be lot's of fun times and new memories after I am gone. Life will not stop. I experience both sadness and happiness when I face the realities of life after Rosanne. I am ecstatic to still be alive and fighting but I am horrified at the thought that I will be saying good bye! But I find comfort in the thought that I will never truly leave you. My spirit will remain and I want everyone to share in that comfort. (Or maybe I just fantasize it is a comfort)
With that I will end this post. I began with a sense of anxiety. Writing and sharing gives me a sense of peace. And again I find two more opposite emotions.
Monday, July 5, 2010
A Glorious Beach Day
It feels the best to feel completely alive! I just don't know how to explain it. My brain is as it should. I am having so much fun. Almost every one of my senses are active and acute. (I say almost because I always have that lingering neuropathy in my fingers. I guess nothing is really perfect.) But at the beach this weekend - I really felt the beach and lived the beach for the first time in a couple of years. Chemotherapy can really deaden your senses - but not this summer!
Now back to the beach. I really heard the ocean and all it's power again. I smelled the sea air and even the smell of seaweed brought a smile to my face. As there were complaints of too much seaweed on the beach I was able to chuckle and think "if that is your biggest annoyance then let your life go on." My ears were filled with muted conversations, squeals from children and adults alike as they ventured into the warm ocean water, radios blaring our beloved Red Sox' game, and the clear voices of friends and family making conversation and offering food and beverages. My eyes were wide open to look at the faces of new friends, old friends and family members all a year older and a year wiser, babies experiencing the sights and sounds of the ocean for the first time, and my beautiful strong Mario swimming out to the bouys with such stamina and confidence. Then how about the tastes of the beach. Yes! there are tastes. How about the ice cold Corona Light topped off with a lime, the salty snacks that everyone always seems to share, and the fresh fruit Ahh, nothing but refreshing!!!!! I felt the beach - I felt the pebbly, hot sand under my feet and on my hands, the cold of the ecean on my toes, that rock that you step on. Ouch, but oh such a good and familiar ouch. Then the sun, the wonderful, awesome feel of that miraculous ball of fire 93 million miles away! And who could not love the hugs and kisses of friends that we think about all year but tend to see on a seasonal basis. My senses were completely alive even though there was a little haze on my brain, not from chemo, but from the couple of bottles of Corona Light (comlete with lime). A haze that should be there on such a glorious day at Popponeset Beach.
As I was sitting there elated in my own world, some sadness with intertwined with warm memories crossed my mind. There were peole from years past that weren't there - Mr. and Mrs. Meuller who always took their late walk down the beach - Mr. Meuller who passed away a few years ago, then his wife not soon after. Then there were the Connely's. Mr. and Mrs. Connely were permanent features enjoying their house on the water. Both gone but the memory of them sitting on their deck, overlooking the ocean, greeting all as they entered the heavenly world just on the other side of the sea wall. Then Megan's father, Mr. Halloran. Although he has not been with us on this earth for many years his smiling face and talkative style passes through my mind. Jim Laroo, so young when he died. Husband of Lori, father of Greg and Kate. I remember many years ago about hearing the news of his brain tumor. - unable to do or say anything that could make things better. But I can still see him playing on the sand with his kids and mine and probably a few kids he didn't even know. Muriel Wade - another beautiful woman - she opened the beach, first one down there. Long gone but never to be forgotten. I think of the DeSimone's, Vera and Ted with memories that would make you cry because you felt such a connection. Vera, who never really went to the beach, and Ted, standing at the top of the seawall stairs as if overlooking his kingdom. And this year is was George Harris, Sr. Although sick for the last couple of years, he passed away last week. Friend, father, and grandfather. Physical prescence not there but his spirit will always live.
My senses were open, my thoughts were alive, my memories so clear. I thank my mother-in-law-and father-law for their foresight into the next generation in keeping their house at the beach not only for them but for their children and their spouses, their friends, their grandchildren, their granchildren's friends and on and on and on.
Although I have not traveled the world I cannot imagine a place more awesome than Popponeset Beach. A big thank you for Dr. Abrams, my oncologist who gave me the summer off from treatment so I can have "quality of life." He has a great understanding of quality vs. quantity - one that I share so immensely. Yes, I was there yesterday, at Popponest Beach, sporting my red lipstick and a periwinkle color two piece suit with my ghost right there sharing my whirling, hot, and sensational Corona laced mind.
Now back to the beach. I really heard the ocean and all it's power again. I smelled the sea air and even the smell of seaweed brought a smile to my face. As there were complaints of too much seaweed on the beach I was able to chuckle and think "if that is your biggest annoyance then let your life go on." My ears were filled with muted conversations, squeals from children and adults alike as they ventured into the warm ocean water, radios blaring our beloved Red Sox' game, and the clear voices of friends and family making conversation and offering food and beverages. My eyes were wide open to look at the faces of new friends, old friends and family members all a year older and a year wiser, babies experiencing the sights and sounds of the ocean for the first time, and my beautiful strong Mario swimming out to the bouys with such stamina and confidence. Then how about the tastes of the beach. Yes! there are tastes. How about the ice cold Corona Light topped off with a lime, the salty snacks that everyone always seems to share, and the fresh fruit Ahh, nothing but refreshing!!!!! I felt the beach - I felt the pebbly, hot sand under my feet and on my hands, the cold of the ecean on my toes, that rock that you step on. Ouch, but oh such a good and familiar ouch. Then the sun, the wonderful, awesome feel of that miraculous ball of fire 93 million miles away! And who could not love the hugs and kisses of friends that we think about all year but tend to see on a seasonal basis. My senses were completely alive even though there was a little haze on my brain, not from chemo, but from the couple of bottles of Corona Light (comlete with lime). A haze that should be there on such a glorious day at Popponeset Beach.
As I was sitting there elated in my own world, some sadness with intertwined with warm memories crossed my mind. There were peole from years past that weren't there - Mr. and Mrs. Meuller who always took their late walk down the beach - Mr. Meuller who passed away a few years ago, then his wife not soon after. Then there were the Connely's. Mr. and Mrs. Connely were permanent features enjoying their house on the water. Both gone but the memory of them sitting on their deck, overlooking the ocean, greeting all as they entered the heavenly world just on the other side of the sea wall. Then Megan's father, Mr. Halloran. Although he has not been with us on this earth for many years his smiling face and talkative style passes through my mind. Jim Laroo, so young when he died. Husband of Lori, father of Greg and Kate. I remember many years ago about hearing the news of his brain tumor. - unable to do or say anything that could make things better. But I can still see him playing on the sand with his kids and mine and probably a few kids he didn't even know. Muriel Wade - another beautiful woman - she opened the beach, first one down there. Long gone but never to be forgotten. I think of the DeSimone's, Vera and Ted with memories that would make you cry because you felt such a connection. Vera, who never really went to the beach, and Ted, standing at the top of the seawall stairs as if overlooking his kingdom. And this year is was George Harris, Sr. Although sick for the last couple of years, he passed away last week. Friend, father, and grandfather. Physical prescence not there but his spirit will always live.
My senses were open, my thoughts were alive, my memories so clear. I thank my mother-in-law-and father-law for their foresight into the next generation in keeping their house at the beach not only for them but for their children and their spouses, their friends, their grandchildren, their granchildren's friends and on and on and on.
Although I have not traveled the world I cannot imagine a place more awesome than Popponeset Beach. A big thank you for Dr. Abrams, my oncologist who gave me the summer off from treatment so I can have "quality of life." He has a great understanding of quality vs. quantity - one that I share so immensely. Yes, I was there yesterday, at Popponest Beach, sporting my red lipstick and a periwinkle color two piece suit with my ghost right there sharing my whirling, hot, and sensational Corona laced mind.
Sunday, June 20, 2010
Living in a Delusion
I think I am living in some sort of delusional world. I was told I had a terminal cancer 2 yrs. 8 months ago. I was really sick. Then I had surgery and I was sicker. Then I had a portacath placed for chemotheray and I was scared. Then I started chemotherapy and I was sick. But I fought and fought and would do my best to feel good in between treatments. In my delusional world I would feel great everyother week, not realizing how sick I really was (am). I enjoyed vacations with my family, vacations with my friends, holidays that I hosted, holidays that I didn't host. I've gone out to dinners, laughed a lot, increased my exercise progam, and continued to work. I'd put that red listick on and strut around. I would feel like life is pretty good. All the while I would keep referring to my delusion and ask the questions "How can I be sick? Do I feel like a woman with a terminal cancer inside my body? Do I look like a woman with a terminal disease?"
I'm on my quality of life chemo break and am loving it!! I'm living my delusional life of not being ill. It's much easier when I don't have chemotherapy to think about. I'm making use of every minute. I don't want to waste a second. Many times throughout this early part of my break I've asked again "How can I be sick?"
I'm wishing to live this delusion until the end. But there are times when reality sneaks in - that little pain on my right side, the curly hair on my head, on Sundays at Mass. But most often I live the delusion of health. Everytime a commercial comes on TV about a cancer center I say cancer is for other people, not me. Everytime I feel that little pain in my side I blame it on sit-ups, and during nighttime prayers when I pray for others with cancer, not thinking to pray for myself.
But something happened while I was at yesterdays Red Sox game. Pre-game ceremonies included a tribute to the riders of the Pan-Mass Challenge, a fund-raising bike-ride across Massachusetts to benefit the Jimmy Fund. I turned to my husband and said "Do I really have a disease that is so bad that billions of dollars are raised for the goal of finding a cure?" In my mind, I felt a silence and a little chill run through my body on a glorious sun-filled afternoon at Fenway Park. I think at that moment a little reality snuck into my delusional world. So there I sat - wearing a tank top to to show off my new-found muscles, with styling goup in my hair to show-off my new found curls, leopard print shoes to show my style, and red lipstick that adds to my smile and the reality of my life was bringing it all to an ugly state. I looked at myself and thought "what are you trying to prove?" I looked at my husband and felt like crying for his loss. I was never so happy to hear the words "PLAY BALL". I was snatched from reality and put back into my delusional world. And what a great afternoon it was!!!!
I'm on my quality of life chemo break and am loving it!! I'm living my delusional life of not being ill. It's much easier when I don't have chemotherapy to think about. I'm making use of every minute. I don't want to waste a second. Many times throughout this early part of my break I've asked again "How can I be sick?"
I'm wishing to live this delusion until the end. But there are times when reality sneaks in - that little pain on my right side, the curly hair on my head, on Sundays at Mass. But most often I live the delusion of health. Everytime a commercial comes on TV about a cancer center I say cancer is for other people, not me. Everytime I feel that little pain in my side I blame it on sit-ups, and during nighttime prayers when I pray for others with cancer, not thinking to pray for myself.
But something happened while I was at yesterdays Red Sox game. Pre-game ceremonies included a tribute to the riders of the Pan-Mass Challenge, a fund-raising bike-ride across Massachusetts to benefit the Jimmy Fund. I turned to my husband and said "Do I really have a disease that is so bad that billions of dollars are raised for the goal of finding a cure?" In my mind, I felt a silence and a little chill run through my body on a glorious sun-filled afternoon at Fenway Park. I think at that moment a little reality snuck into my delusional world. So there I sat - wearing a tank top to to show off my new-found muscles, with styling goup in my hair to show-off my new found curls, leopard print shoes to show my style, and red lipstick that adds to my smile and the reality of my life was bringing it all to an ugly state. I looked at myself and thought "what are you trying to prove?" I looked at my husband and felt like crying for his loss. I was never so happy to hear the words "PLAY BALL". I was snatched from reality and put back into my delusional world. And what a great afternoon it was!!!!
Monday, June 7, 2010
In a New York Minute
In the blink of an eye my happiest moments turn into such sad feelings. Every laugh that I have turns quickly into tears. Even a simple smile makes it way upside down and turns into a frown. You see, I am living day to day, moment by moment, trying to take in all the day has to offer. But everytime I feel joy then I become sad. I am not able to sustain the good feelings. When I think I am loving life then I think of losing my life - very sad indeed.
I was playing with my beautiful son Mario this weekend. We were laughing, being silly, acting like we were the only two in the world just loving each others company. It was a moment that made life worth fighting for. But then he said "This is another memory that I will have when you pass away." Silence, sadness in our hearts. But in that blink of an eye we were back to our silliness.
So now I realize it can work both ways. I can turn off my sadness because there is more happiness to enjoy. I wish that is was as flowing as the "happiness to sadness" feelings. "Sadness to happiness" requires effort. Hapiness to sadness just happens. My son Mario is so brave when he faces the sadness he feels but goes on to live his life carrying his great burden. He has taught me a lot and just keeps teaching me about how to stop my sad thoughts and just move on. So it's happiness to sadness and back to happiness again. It's a cycle. Thank you Mario for showing me the way back to my life - to live for the moment.
Oh how life changes in the blink of an eye. How quickly parents who teach their children become parents who are taught by their children. In a New York Minute everything could change. How those lyrics by the Eagles ring so true.
One more thing - I love you Mario (And that is one thing that will never change even after I pass away.)
I was playing with my beautiful son Mario this weekend. We were laughing, being silly, acting like we were the only two in the world just loving each others company. It was a moment that made life worth fighting for. But then he said "This is another memory that I will have when you pass away." Silence, sadness in our hearts. But in that blink of an eye we were back to our silliness.
So now I realize it can work both ways. I can turn off my sadness because there is more happiness to enjoy. I wish that is was as flowing as the "happiness to sadness" feelings. "Sadness to happiness" requires effort. Hapiness to sadness just happens. My son Mario is so brave when he faces the sadness he feels but goes on to live his life carrying his great burden. He has taught me a lot and just keeps teaching me about how to stop my sad thoughts and just move on. So it's happiness to sadness and back to happiness again. It's a cycle. Thank you Mario for showing me the way back to my life - to live for the moment.
Oh how life changes in the blink of an eye. How quickly parents who teach their children become parents who are taught by their children. In a New York Minute everything could change. How those lyrics by the Eagles ring so true.
One more thing - I love you Mario (And that is one thing that will never change even after I pass away.)
Saturday, May 29, 2010
I'm a ghost again. Watched my husband and son get ready for a wedding that was on MY side of the family. But I'm sick with Chemo. I can't go so my ghost get restless and went anyway. Saw my family asking Michael "how are you doing?", Are you doing OK with Mario", "Is it hard to live alone?" Michael was right to the point in answering these questions - "no", fine,", "Not so much hard but different." As he's answering the questions his mind is not there. All he keeps thinking about is that he just buried his wife last week, what am I doing at this "f#$%ing wedding!" My ghost yells "I'm with you baby but I miss you terribly." You see that when I'm a ghost nobody can see me or hear me but somtimes they feel your prescene. I think Michael did because I saw him smile for no apparent reason after I said those words. Be it me on this earth or my ghostly spirit Michael and I will always be connected. Our life together has been fun, stressful, full of suprises, complicated, and deep. We survived major crises and we lived through my illness to the very end. Dear Michael, if you can feel my spirit or hear my words I want you to know that I will always love you and my ghost will always be there to support you. We will stay connected forever.
Tuesday, May 25, 2010
Irony
Everyday that I work have the privilege of seeing pieces of the lives of others. Many of these people live uncertain lives in what I feel is a very uncertain world. Very often I wonder what drives them to go on, what makes them successful, what makes them resilient.
These people have names, faces, and feelings. Are they American born or immigrants. If immigrints are they legal or illegal? Are they litterate or illiterate? Did they graduate fom college or did they stop school in 5th grade? The truth is, I really don't care what the answers are to these questions. They are all human beings in need of some sort of "health care" that I have been destined to provide. Social statistics are irrelevant.
In this blog I don't feel the need to talk about my cancer. I have been given many gifts - intelligence, compassion, tolerance, and patience. These gifts are what has allowed me to do the work that I do and as a result of my vocation to stand in awe of those that suffer, survive and even come out on top. I stand to learn a lot from those that elevate me to a status that I do not feel worthy. Isn't it ironic?
These people have names, faces, and feelings. Are they American born or immigrants. If immigrints are they legal or illegal? Are they litterate or illiterate? Did they graduate fom college or did they stop school in 5th grade? The truth is, I really don't care what the answers are to these questions. They are all human beings in need of some sort of "health care" that I have been destined to provide. Social statistics are irrelevant.
In this blog I don't feel the need to talk about my cancer. I have been given many gifts - intelligence, compassion, tolerance, and patience. These gifts are what has allowed me to do the work that I do and as a result of my vocation to stand in awe of those that suffer, survive and even come out on top. I stand to learn a lot from those that elevate me to a status that I do not feel worthy. Isn't it ironic?
Tuesday, May 11, 2010
Thank You!
Gurgle, gurgle, gurgle goes my stomach, tingle, tingle, tingle through my fingers and toes,, ouch, ouch, ouch evertime I brush my teeth - just sounds of my everyday life. Thank you chemotherapy!
Every other weekend losing 5 days of my life - Thank you chemotherapy!
Loosing my hair then having it grow back different than my own - Thank you chemotherapy!
Being too sick to attend events and parties - Thank you Chemotherapy!
Anixiety to the point of insomnia every other Thursday - Thank you chemotherapy!
Having a port-a-cath implanted in my chest that is a constant reminder of my disease - Thank you chemotherapy!
Do I sound angry? - maybe. Do I sound grateful ?- I think not! Do I sound sarcastic? - most likely.
Have you ever thought you couldn't live without something (or someone). Usually it's a material desire, a beloved friend or family member, or a God of some type. It could be any type of want. In any case when I've ever said I can't live without something it is usually a positive image.
Now I have another "can't live without". This one I didn't choose. This one is not positive, but I'm told it is the only thing that will keep me alive. So I'll say it out loud "I can't live without chemotherapy." Why? Well just let me say "Thank you cancer!" Stupid Cancer
Every other weekend losing 5 days of my life - Thank you chemotherapy!
Loosing my hair then having it grow back different than my own - Thank you chemotherapy!
Being too sick to attend events and parties - Thank you Chemotherapy!
Anixiety to the point of insomnia every other Thursday - Thank you chemotherapy!
Having a port-a-cath implanted in my chest that is a constant reminder of my disease - Thank you chemotherapy!
Do I sound angry? - maybe. Do I sound grateful ?- I think not! Do I sound sarcastic? - most likely.
Have you ever thought you couldn't live without something (or someone). Usually it's a material desire, a beloved friend or family member, or a God of some type. It could be any type of want. In any case when I've ever said I can't live without something it is usually a positive image.
Now I have another "can't live without". This one I didn't choose. This one is not positive, but I'm told it is the only thing that will keep me alive. So I'll say it out loud "I can't live without chemotherapy." Why? Well just let me say "Thank you cancer!" Stupid Cancer
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