That's what my OB said. Six months ago she called me with the results of my breast biopsy and said I had to come to her office right away. "I have some news for you and it's not wonderful."
That's why when I heard my husband say the same words to me over the phone about a week ago my heart dropped through the floor. "It's not wonderful." Really? Seriously? You're kidding right? Dear God no - not cancer, not again. We're not even done with it yet. I still have 6 weeks of radiation to get through. It can't be cancer. It doesn't happen like this - twice in one year! Maybe it's just a coincidence Maybe "It's not wonderful" doesn't mean cancer. It really just means "it's not wonderful" instead of "life the way you've known it is over. . . again."
My husband has cancer.
He tells me I'm supposed to see the bright side of all of this. It's bladder cancer. Highly curable, easily treatable blah blah blah. They told me all that when I got breast cancer. . . six months ago. Besides, I don't know why I am supposed to FIND the bright side to cancer. I don't want my husband to have cancer. I don't want him to go through this - I don't want anyone to go through this. . . I don't want to lose my husband. I waited thirty five years to find him for crying out loud and now I get two years with him and we've both got cancer? What's up with this?
We went away for the weekend to the mountains. Said screw the money and got a nice hotel and enjoyed ourselves for three days. Saw some really beautiful stuff. It was very strange though. In the back of my mind I knew the whole time we were just avoiding reality and we had to get back home. Home to cancer. More doctors, more invasive procedures, more surgeries and chemo treatments. More sick, sick, sick now both of us at the same time. More babysitters. More asking for help. Help help help. . .
He says "Mine won't be nearly as bad as yours was." But we all thought mine wouldn't be so bad remember? Remember at the start of all this when I put together an exercise calendar with all my friends to help me stay healthy during chemo? Ha ha ha ha! . . .More dread. More fear. More worry. The Bible says we're not supposed to fear or worry - but give me a break here.. .how am I not supposed to worry? Everyone says leave everything in God's hands. Well you know what I DID! And now we both have cancer. . .
And where is all this going? I mean - when you get hit with cancer twice in one year is Heaven sending you a message to get your affairs in order??
Beautiful baby girl. Will her parents live to see her first Communion? Will either of us be around when she needs us? What the heck is going on? I keep trying to focus on starving people in third-world countries. Compared to them I've lived a life of luxury and ease. What'a little cancer compared to living in slums and not having any food to give your babies??. . . Everybody has to pay the price for sin somehow right?
But then I am terribly jealous of my friends who are stressing about stupid mundane things. A teenager having a difficult time adjusting in high school. . . an adolescent acting up. . .too many committments and not enough time. . . car problems. . . annoying people. Boy I wish someone would annoy me. I'll take it! You can have cancer!! Trade you any day. Just let my husband be okay. Let my husband be okay. . .
Tuesday, July 5, 2011
Tuesday, May 17, 2011
This Used to be my specialty, Part III
So Factor Three is just a fancy shmancy name for something I've come up with on my own. Something I discovered, and frankly never factored in. It's the unexpected factor in all of this. The big surprise.
No, I don't have a deep feeling of closeness to God as I always have.
No, I don't have a blind and joyful faith that I have always had.
No, I'm still not sure I believe prayer makes any difference anymore.
But I suddenly do have other people. I'm not sure how to describe this, but it's like, when all those other people I've prayed for all my life were sick, it was like they needed MY faith to uphold them. And now I am sick, in trouble and weakened spiritually, and suddenly I'm being uphelp by all of their faiths.
They are praying for me and offering Masses and sufferings for me. I have fourty choir children offering up sacrifices for me. One mother came up to me and told me of how her four year old daughter Gianna fell and scraped her knee. When mommy asked if she was okay, the girl replied "It's okay mommy, I offered it up for Mrs. N." Gianna is upholding me somehow.
When I told Pam I was afraid the chemo wasn't working, she said "Who cares about the chemo?! Jesus Christ will heal you!" Pam's faith is stronger than mine right now. Pam is upholding me somehow.
I'm not sure I can effectively explain all of this - I think it is another one of those mysteries of faith that we'll never quite understand or at least not until Heaven. But I know it is true. I am weak now, but those who love me are strong and are rallying for me, for my life and for my soul. I don't feel close to God, but I feel this so deeply, so confidently that it touches my heart very much and it almost replaces the comfort of faith. I am upheld by the community of God. Even in faith we are not alone.
No, I don't have a deep feeling of closeness to God as I always have.
No, I don't have a blind and joyful faith that I have always had.
No, I'm still not sure I believe prayer makes any difference anymore.
But I suddenly do have other people. I'm not sure how to describe this, but it's like, when all those other people I've prayed for all my life were sick, it was like they needed MY faith to uphold them. And now I am sick, in trouble and weakened spiritually, and suddenly I'm being uphelp by all of their faiths.
They are praying for me and offering Masses and sufferings for me. I have fourty choir children offering up sacrifices for me. One mother came up to me and told me of how her four year old daughter Gianna fell and scraped her knee. When mommy asked if she was okay, the girl replied "It's okay mommy, I offered it up for Mrs. N." Gianna is upholding me somehow.
When I told Pam I was afraid the chemo wasn't working, she said "Who cares about the chemo?! Jesus Christ will heal you!" Pam's faith is stronger than mine right now. Pam is upholding me somehow.
I'm not sure I can effectively explain all of this - I think it is another one of those mysteries of faith that we'll never quite understand or at least not until Heaven. But I know it is true. I am weak now, but those who love me are strong and are rallying for me, for my life and for my soul. I don't feel close to God, but I feel this so deeply, so confidently that it touches my heart very much and it almost replaces the comfort of faith. I am upheld by the community of God. Even in faith we are not alone.
Wednesday, May 4, 2011
This used to be my specialty, Part II
I remember a couple years ago reading about some newly discovered letters of Mother Theresa which disclosed honestly her complete lack of feeling anything close to God for the last twenty some years of her life. Many people misunderstood this as a sign of her being a fake. Intellectually I understood that this discovery would bring her closer to Sainthood, but emotionally I had no idea just how dark a dark hour could be.
I guess right now I feel like I'm going through my "dark hour of the soul" with faith. It's not that I don't believe. I do. I don't have any doubts about my beliefs either. It's just that I don't have any assurance of Him or His love. I feel very alone and empty. Which is a very interesting dilemma. At this time, the scariest time of my life so far, shouldn't my faith be upholding me? Isn't this why I've invested all those years of prayer, study and church? If not for this than what? What's the point of faith if at the first sign of struggle one collapses like a flower in the wind?
My grandfather used to say that religion is of the will and not of the emotion. Perhaps the reality is not that I've lost my faith, but that faith is not what I thought it to be. Perhaps what I was experiencing my whole life, a feeling of joyful contentedness, constant comfort and companionship, perhaps these things are just feelings, emotions, as fleeting as a young lovers passion. And feelings are not the substance of faith. Feelings are just beautiful flowers blowing in the wind. They blow here and there and die and grow in season, but they are fickle.
So faith is an unknown substance. Here I had listened to that Gospel Parable all my life about building my house on solid ground and thought "I've built my house on solid ground." Now I look to see in the first heavy rain that the grounding I thought I had is washing away in the tide. . . but there is another foundation under my fortress, holding it up against the wind and rain. . . there is another, better foundation. I will call it Factor Three.
I guess right now I feel like I'm going through my "dark hour of the soul" with faith. It's not that I don't believe. I do. I don't have any doubts about my beliefs either. It's just that I don't have any assurance of Him or His love. I feel very alone and empty. Which is a very interesting dilemma. At this time, the scariest time of my life so far, shouldn't my faith be upholding me? Isn't this why I've invested all those years of prayer, study and church? If not for this than what? What's the point of faith if at the first sign of struggle one collapses like a flower in the wind?
My grandfather used to say that religion is of the will and not of the emotion. Perhaps the reality is not that I've lost my faith, but that faith is not what I thought it to be. Perhaps what I was experiencing my whole life, a feeling of joyful contentedness, constant comfort and companionship, perhaps these things are just feelings, emotions, as fleeting as a young lovers passion. And feelings are not the substance of faith. Feelings are just beautiful flowers blowing in the wind. They blow here and there and die and grow in season, but they are fickle.
So faith is an unknown substance. Here I had listened to that Gospel Parable all my life about building my house on solid ground and thought "I've built my house on solid ground." Now I look to see in the first heavy rain that the grounding I thought I had is washing away in the tide. . . but there is another foundation under my fortress, holding it up against the wind and rain. . . there is another, better foundation. I will call it Factor Three.
Wednesday, April 27, 2011
This used to be my specialty, Part I
That's a line from the final monologue in the film Jerry Macguire. "This used to be my specialty. I was good in a living room." Jerry is trying to explain how he feels so completely off balance because what he used to feel so confident in, is now strangely so difficult for him.
That's how I feel now. I recently emailed a friend a two-liner about my inner fears that the chemo is not working. I have no visual evidence that it is, we've never found a lump, and my cancer breast does not appear to be getting any smaller. After post-lactation deflation, the cancer breast remains a frightening 1/4 larger than my non-cancer breast. I check faithfully every morning. So I told a friend about my fear.
In response she reprimanded me for putting my faith in the wrong place. She said that chemo and all its suffering is just something I had to go through to grow and become whatever He has planned for me. But chemo will not cure my cancer, she said. Jesus Christ will cure my cancer.
Of course she's right. I've been a person of deep faith my whole life. It was my spiritual strength. Others have told me for years how "inspired" they've been by my "great faith." I've always remarked that where others were strong in love or joy I was always strong in faith. It was my thing. It was my living room.
So now, where is my faith? I mean I heard the voice right? So why all the doubt? Why all the fear and worry? Why the constant thoughts of fear and doubt and despair? This used to be my specialty.
In a way I suddenly sympathize with the guy in that poem "Footprints in the Sand." Where the heck are You? Now I'm living not day to day or hour to hour, but minute to minute. I don't know if I can make plans for next year, next month or next week. And there's that dread feeling. It's no joy ride thinking that something inside you is growing and slowly killing you and there is nothing you can do about it.
Google has become a terrible fuel source for this fear. I do searches and all I get is my fears confirmed. When I was diagnosed with ER+ cancer everyone told me that was a good thing because it responds really well to the AC chemo. Everyone lied apparently, because EVERYONE on Google says the exact opposite. . . So research and science bring me NO consolation. Well meaning survivors and friends and family can't console me. I would say there IS no consolation, but intellectually I know better. "Lord to whom else shall we go?"
That's how I feel now. I recently emailed a friend a two-liner about my inner fears that the chemo is not working. I have no visual evidence that it is, we've never found a lump, and my cancer breast does not appear to be getting any smaller. After post-lactation deflation, the cancer breast remains a frightening 1/4 larger than my non-cancer breast. I check faithfully every morning. So I told a friend about my fear.
In response she reprimanded me for putting my faith in the wrong place. She said that chemo and all its suffering is just something I had to go through to grow and become whatever He has planned for me. But chemo will not cure my cancer, she said. Jesus Christ will cure my cancer.
Of course she's right. I've been a person of deep faith my whole life. It was my spiritual strength. Others have told me for years how "inspired" they've been by my "great faith." I've always remarked that where others were strong in love or joy I was always strong in faith. It was my thing. It was my living room.
So now, where is my faith? I mean I heard the voice right? So why all the doubt? Why all the fear and worry? Why the constant thoughts of fear and doubt and despair? This used to be my specialty.
In a way I suddenly sympathize with the guy in that poem "Footprints in the Sand." Where the heck are You? Now I'm living not day to day or hour to hour, but minute to minute. I don't know if I can make plans for next year, next month or next week. And there's that dread feeling. It's no joy ride thinking that something inside you is growing and slowly killing you and there is nothing you can do about it.
Google has become a terrible fuel source for this fear. I do searches and all I get is my fears confirmed. When I was diagnosed with ER+ cancer everyone told me that was a good thing because it responds really well to the AC chemo. Everyone lied apparently, because EVERYONE on Google says the exact opposite. . . So research and science bring me NO consolation. Well meaning survivors and friends and family can't console me. I would say there IS no consolation, but intellectually I know better. "Lord to whom else shall we go?"
Friday, March 11, 2011
Identity Crisis
"Who am I anyway? Am I my resume? That has a picture of a person I don't know." A line from the musical A Chorus Line that has always stuck with me. Suddenly I feel like that character, staring blankly at his 8X10 black and white glossy that he paid a fortune to get made, and wondering if it really portrays me, who I am. . . and the big question that lurks behind every head shot decision is really "who AM I?"
My whole life when asked this piercing question, I've always given the knee-jerk answer that I am "A Child of God." I wish I could say I'd given that answer out of absolute certainty. It seems that's how we start in life, just a child of God. We come out and we don't even know we are a daughter or a sister. We have no aspirations and no fears, no relationships. We are nothing but "A Child of God." However, as life moves on we begin to identify ourselves. First as a daughter and sibling, a grandchild, a niece, but then as a student, a friend, a worker, a Catholic, a musician, a singer, a teacher, a friend, a performer, a scrapbooker, an herb gardener, a wife, a mother. . . Sometimes we get side tracked and have personal identities that shouldn't be there: an alcoholic or a drug abuser, a gambler or a glutton, a sex addict, a liar, a thief, a cheater, a hypocrite. . . and on and on. Hopefully we try to shed ourselves of some of these identities. . . for many in our culture, our identities circle directly around our appearance. I have beautiful hair, I have beautiful skin, I'm thin, I'm fat, I'm short, I'm tall. . . So that's who we ARE. . . .
But perhaps, true holiness, TRUE holiness is shedding ourselves of ALL our identities except that first one. I can honestly say that cancer is doing for me something like what a nun or monk does for themselves as they enter their order. They give up all their identities. They renounce all earthly relationships, throw out all their hobbies and possessions, cut their hair and don unflattering clothes, and commit to a lifestyle of obedience and put all their attention day and night to that one big original "I am a Child of God."
Cancer has taken my identities from me. First I was healthy, and I am now a chronically sick person. If you've never made this leap, you cannot imagine how difficult and traumatic it is to go from "super preferred" to "hanging on by a thread." As I write this, I am sick to my stomach the day after chemo and two days after my third surgery this month. I have an electric drug pump automatically pumping meds into my body which I carry everywhere, along with my throw up bucket. It's official I am no longer a healthy person. Identity taken.
Cancer has taken my beauty. I am bald, and I look like a freak. My weight fluctuates between the steroid induced weight-gain and the inevitable weight loss post chemo treatments. I am too tired to dress fancy everyday or do makeup. I save these energy sapping efforts for Sunday Mass and teaching days.
Cancer has taken my energy. I no longer want to exercise, most days I struggle to pick up my baby girl. Many days, because of the dopiness caused by the drugs I don't dare try. I have no power to do the laundry or clean the house. I have not made my husband a meal in months. I have to helplessly sit on the sofa for days at a time, watching stupid tv. Reading often takes too much energy. . .
Cancer has taken my career. Two conductors who had hired me to sing large gigs this Spring have called and out of necessity fired me. It's completely understandable. I'm too high risk. But I've cancelled the rest. It's just not fair to them.
Cancer has taken my singing voice. I have no energy to sing. I don't know what is wrong with me. My friend in NY who is going through all the same treatments I am, has enough energy to continue singing and training. I try to sing to my little baby and I can barely whimper out her little nursery rhymes.
Cancer has taken my financial independence. I am teaching when I can, but cancelling more often because I am in the hospital or too sick and tired to appear before people. I'm officially a drain.
I am no longer a scrapbooker or an herb gardener. I am totally unavailable to my family - I can barely call occasionally to give them updates. I am not a godmother or an aunt anymore. Am I a mother? Today I shipped my child out to someone else's home because I couldn't care for her. Yesterday and tomorrow her father will do everything. Will I be well enough this time to care for her at all?
With all of this comes this unexpected grief. When you get cancer, you have to grieve yourself. All of these are identities that you have to watch die and let go of. One by one. Might they all return someday? Possibly, but saying good bye to a husband who is off to Afghanistan for a year can't be easy either can it? And neither she nor I know if they'll be back. It might be a permanent departure.
I had to grieve. First my health, then my fertility, then one by one as the weeks have gone by, another part of me and then another. The process always the same for each identity you have (and you don't realize how many you have until they start peeling away). "Oh no! Not that! I can't live without that! I want to be a mommy again!" Then "I don't want to lose my hair! I've had it my whole life!" Then the rest one by one, each with their own grieving process. It takes months. I'm not done yet, I'm sure of it.
It takes me time. But some people don't seem to need to grieve. My husband doesn't seem to grieve anything. When they told us we'd probably be infertile, It took me weeks of crying and anger to accept the chemo treatments with an open heart. My husband said "okay" in the first doctor's office, and that was it. Weeks later, we got into a huge fight, our first since marriage, when he told me to give up my children's choir because it would put me at risk for serious illness. The only time I can ever remember fighting seriously with him. He was fine with it, right away, and didn't understand why I stubbornly held on to my hopes. . . .Eventually I got both my oncologists to say I could do a rehearsal once every other week. . . but still, I'm not their director anymore.
So you grieve each new time. And just when you think you've stripped yourself of all your identities, something else comes up and you're stripped of that too. I wonder if it is fair to compare the cancer experience to that of the concentration camp victim. They too are stripped of all their identities. Everything, family, looks, clothes, jobs, Independence, down to their very humanity as they are slowly starved to death. In Victor Frankle's holocaust book called Man's search for Meaning he describes how, at the end of that stripping there is always something that the soldiers couldn't take away: your right to choose good or evil. He theorizes through his own camp experience, that his conscience never left him and no matter what, he was always himself because of that one thing, his freedom to choose good or evil.
Is this getting back to the bare minimum? Is this the "Child of God" I've always said I'd be? Stripped of everything I was clinging to, I'm left with my utter dependence on Him and my will to choose right and wrong. No hair or singing voice to hide behind. No popularity or world approval. No daughter to love.
And that is the clincher (in case you're all so depressed that you now want to commit suicide). I'm still here. I mean, there still IS a me under all those identities. I still like purple, and I sill laugh at my husbands jokes. I have no idea who I am anymore, but I am still here. And as I am stripped of my relationships one by one, to myself and to those around me, I find that the one original relationship is still there. It's a mess. It's in pieces all over the floor, covered by anger and resentment, and occasionally now trust and hope. But that one relationship "Child of God." doesn't seem to vanish no matter how hard cancer tries.
Funny, that nuns and monks choose this. With joy no less. I think I'm beginning to get that now. And a part of me hopes (Note I'm using the word hope again, but possibly in a more healthy manner now), that when my hair grows back and my life is restored after all of this, that I will hold on to that ONE relationship, and keep all the others loosely attached somehow. Love and love and love some more, but never again identify myself by worldly standards. And never never judge anyone else by them either. Mother Theresa saw each person as a Child of God, whether Hindu or Catholic, whether healthy and beautiful or dying of AIDS. She saw them all as what they were when they got here. And what they would leave this place as.
So all this grieving is actually a cause for rejoicing. There is, somewhere deep inside of me, a slight shallow "thank God!" that is echoing through my heart. Because as crazy as this sounds, I never want to go back.
My whole life when asked this piercing question, I've always given the knee-jerk answer that I am "A Child of God." I wish I could say I'd given that answer out of absolute certainty. It seems that's how we start in life, just a child of God. We come out and we don't even know we are a daughter or a sister. We have no aspirations and no fears, no relationships. We are nothing but "A Child of God." However, as life moves on we begin to identify ourselves. First as a daughter and sibling, a grandchild, a niece, but then as a student, a friend, a worker, a Catholic, a musician, a singer, a teacher, a friend, a performer, a scrapbooker, an herb gardener, a wife, a mother. . . Sometimes we get side tracked and have personal identities that shouldn't be there: an alcoholic or a drug abuser, a gambler or a glutton, a sex addict, a liar, a thief, a cheater, a hypocrite. . . and on and on. Hopefully we try to shed ourselves of some of these identities. . . for many in our culture, our identities circle directly around our appearance. I have beautiful hair, I have beautiful skin, I'm thin, I'm fat, I'm short, I'm tall. . . So that's who we ARE. . . .
But perhaps, true holiness, TRUE holiness is shedding ourselves of ALL our identities except that first one. I can honestly say that cancer is doing for me something like what a nun or monk does for themselves as they enter their order. They give up all their identities. They renounce all earthly relationships, throw out all their hobbies and possessions, cut their hair and don unflattering clothes, and commit to a lifestyle of obedience and put all their attention day and night to that one big original "I am a Child of God."
Cancer has taken my identities from me. First I was healthy, and I am now a chronically sick person. If you've never made this leap, you cannot imagine how difficult and traumatic it is to go from "super preferred" to "hanging on by a thread." As I write this, I am sick to my stomach the day after chemo and two days after my third surgery this month. I have an electric drug pump automatically pumping meds into my body which I carry everywhere, along with my throw up bucket. It's official I am no longer a healthy person. Identity taken.
Cancer has taken my beauty. I am bald, and I look like a freak. My weight fluctuates between the steroid induced weight-gain and the inevitable weight loss post chemo treatments. I am too tired to dress fancy everyday or do makeup. I save these energy sapping efforts for Sunday Mass and teaching days.
Cancer has taken my energy. I no longer want to exercise, most days I struggle to pick up my baby girl. Many days, because of the dopiness caused by the drugs I don't dare try. I have no power to do the laundry or clean the house. I have not made my husband a meal in months. I have to helplessly sit on the sofa for days at a time, watching stupid tv. Reading often takes too much energy. . .
Cancer has taken my career. Two conductors who had hired me to sing large gigs this Spring have called and out of necessity fired me. It's completely understandable. I'm too high risk. But I've cancelled the rest. It's just not fair to them.
Cancer has taken my singing voice. I have no energy to sing. I don't know what is wrong with me. My friend in NY who is going through all the same treatments I am, has enough energy to continue singing and training. I try to sing to my little baby and I can barely whimper out her little nursery rhymes.
Cancer has taken my financial independence. I am teaching when I can, but cancelling more often because I am in the hospital or too sick and tired to appear before people. I'm officially a drain.
I am no longer a scrapbooker or an herb gardener. I am totally unavailable to my family - I can barely call occasionally to give them updates. I am not a godmother or an aunt anymore. Am I a mother? Today I shipped my child out to someone else's home because I couldn't care for her. Yesterday and tomorrow her father will do everything. Will I be well enough this time to care for her at all?
With all of this comes this unexpected grief. When you get cancer, you have to grieve yourself. All of these are identities that you have to watch die and let go of. One by one. Might they all return someday? Possibly, but saying good bye to a husband who is off to Afghanistan for a year can't be easy either can it? And neither she nor I know if they'll be back. It might be a permanent departure.
I had to grieve. First my health, then my fertility, then one by one as the weeks have gone by, another part of me and then another. The process always the same for each identity you have (and you don't realize how many you have until they start peeling away). "Oh no! Not that! I can't live without that! I want to be a mommy again!" Then "I don't want to lose my hair! I've had it my whole life!" Then the rest one by one, each with their own grieving process. It takes months. I'm not done yet, I'm sure of it.
It takes me time. But some people don't seem to need to grieve. My husband doesn't seem to grieve anything. When they told us we'd probably be infertile, It took me weeks of crying and anger to accept the chemo treatments with an open heart. My husband said "okay" in the first doctor's office, and that was it. Weeks later, we got into a huge fight, our first since marriage, when he told me to give up my children's choir because it would put me at risk for serious illness. The only time I can ever remember fighting seriously with him. He was fine with it, right away, and didn't understand why I stubbornly held on to my hopes. . . .Eventually I got both my oncologists to say I could do a rehearsal once every other week. . . but still, I'm not their director anymore.
So you grieve each new time. And just when you think you've stripped yourself of all your identities, something else comes up and you're stripped of that too. I wonder if it is fair to compare the cancer experience to that of the concentration camp victim. They too are stripped of all their identities. Everything, family, looks, clothes, jobs, Independence, down to their very humanity as they are slowly starved to death. In Victor Frankle's holocaust book called Man's search for Meaning he describes how, at the end of that stripping there is always something that the soldiers couldn't take away: your right to choose good or evil. He theorizes through his own camp experience, that his conscience never left him and no matter what, he was always himself because of that one thing, his freedom to choose good or evil.
Is this getting back to the bare minimum? Is this the "Child of God" I've always said I'd be? Stripped of everything I was clinging to, I'm left with my utter dependence on Him and my will to choose right and wrong. No hair or singing voice to hide behind. No popularity or world approval. No daughter to love.
And that is the clincher (in case you're all so depressed that you now want to commit suicide). I'm still here. I mean, there still IS a me under all those identities. I still like purple, and I sill laugh at my husbands jokes. I have no idea who I am anymore, but I am still here. And as I am stripped of my relationships one by one, to myself and to those around me, I find that the one original relationship is still there. It's a mess. It's in pieces all over the floor, covered by anger and resentment, and occasionally now trust and hope. But that one relationship "Child of God." doesn't seem to vanish no matter how hard cancer tries.
Funny, that nuns and monks choose this. With joy no less. I think I'm beginning to get that now. And a part of me hopes (Note I'm using the word hope again, but possibly in a more healthy manner now), that when my hair grows back and my life is restored after all of this, that I will hold on to that ONE relationship, and keep all the others loosely attached somehow. Love and love and love some more, but never again identify myself by worldly standards. And never never judge anyone else by them either. Mother Theresa saw each person as a Child of God, whether Hindu or Catholic, whether healthy and beautiful or dying of AIDS. She saw them all as what they were when they got here. And what they would leave this place as.
So all this grieving is actually a cause for rejoicing. There is, somewhere deep inside of me, a slight shallow "thank God!" that is echoing through my heart. Because as crazy as this sounds, I never want to go back.
Thursday, March 3, 2011
It's okay to hope again
In the movie Sharshank Redemption, Morgan's Freeman's character says that hope is a "dirty word." For the last three months I've finally understood that line. I've been so torn in my personal faith because I've thought "if it's God's Will that I die- why should I hope for life? Isn't that a contradiction of faith?" My whole life I've said "Thy Will be done" and now suddenly I'm supposed to say "unless it means me dying and leaving my husband and daughter without a mommy?" I've really been torn over this. I don't think I've uttered a sincere "Thy will be done" for three months now. . . .
So I've been intensely struggling with what "Hope" really is. Is it the patient and joyful waiting for what you want? Or is it the patient and joyful waiting for His Will? If it's the former, no problem, I'm all over it. But if it's the latter, and real holiness is hoping for whatever He wants for you. . . how do you joyfully wait for what you don't know? My husband points out that I'm supposed to assume that, because God loves me, no matter what, it will be for the best. And deep, deep in my heart I guess I can say I believe that. I can visualize us all standing around in Heaven someday, eternally blissful, and saying "Oh yeah I get it now" to everything that didn't make sense to our earthly eyes. But from where I'm standing now, there are some outcomes to this situation that I simply don't want to believe are for the best, and the numero uno is the outcome where I end up out of my daughter's life. I don't want to trust God, that she will be better off without me. And I certainly am not hoping for it. . .
In any case this morning He let me off the hook. After three months of seeming silence, I finally heard His voice in my heart. It was like feeling sweet gentle rain after months of drought. Sceptics will question what I'm about to write as a bunch of hogwash, and they are welcome too. But I don't. I just know. I don't believe - I know. It was His voice. That familiar voice that comes with automatic caller ID. One doesn't have to ask who's talking. Every cell in one's being recognises the sound of the voice that called them into existence.
"I'm going to cure you of this, and you will live to be the mother I've created you to be."
I've heard the voice several times in my life - sometimes more clearly than others. One time I heard it so loud and clear that my bones literally shook with it. But I think I know now, that was because He was dispelling the evil thing that was following me. However these months, I've been so waiting and hoping to hear with confidence His voice - part of my spiritual battle is that I've heard nothing and figured He wasn't participating in all of this somehow. Or that He didn't say anything because He had no good news to share with me. Or worse, that He wanted me to be a Saint. I'd say I felt abandonned, but I know that's ridiculous. I felt afraid to hope. I felt like Morgan's Freeman's character. Hope was a dirty word.
But now I know His will is for me to live. Now I know that He has more plans and dreams for me. Now I just have to endure whatever suffering is part of all this treatment, and get through it all. But at least now I know and believe there is a "through it all." I mean, It's okay to hope again, and I don't have to be a Saint to do it. that's what I mean when I say "He let me off th hook."
So I've been intensely struggling with what "Hope" really is. Is it the patient and joyful waiting for what you want? Or is it the patient and joyful waiting for His Will? If it's the former, no problem, I'm all over it. But if it's the latter, and real holiness is hoping for whatever He wants for you. . . how do you joyfully wait for what you don't know? My husband points out that I'm supposed to assume that, because God loves me, no matter what, it will be for the best. And deep, deep in my heart I guess I can say I believe that. I can visualize us all standing around in Heaven someday, eternally blissful, and saying "Oh yeah I get it now" to everything that didn't make sense to our earthly eyes. But from where I'm standing now, there are some outcomes to this situation that I simply don't want to believe are for the best, and the numero uno is the outcome where I end up out of my daughter's life. I don't want to trust God, that she will be better off without me. And I certainly am not hoping for it. . .
In any case this morning He let me off the hook. After three months of seeming silence, I finally heard His voice in my heart. It was like feeling sweet gentle rain after months of drought. Sceptics will question what I'm about to write as a bunch of hogwash, and they are welcome too. But I don't. I just know. I don't believe - I know. It was His voice. That familiar voice that comes with automatic caller ID. One doesn't have to ask who's talking. Every cell in one's being recognises the sound of the voice that called them into existence.
"I'm going to cure you of this, and you will live to be the mother I've created you to be."
I've heard the voice several times in my life - sometimes more clearly than others. One time I heard it so loud and clear that my bones literally shook with it. But I think I know now, that was because He was dispelling the evil thing that was following me. However these months, I've been so waiting and hoping to hear with confidence His voice - part of my spiritual battle is that I've heard nothing and figured He wasn't participating in all of this somehow. Or that He didn't say anything because He had no good news to share with me. Or worse, that He wanted me to be a Saint. I'd say I felt abandonned, but I know that's ridiculous. I felt afraid to hope. I felt like Morgan's Freeman's character. Hope was a dirty word.
But now I know His will is for me to live. Now I know that He has more plans and dreams for me. Now I just have to endure whatever suffering is part of all this treatment, and get through it all. But at least now I know and believe there is a "through it all." I mean, It's okay to hope again, and I don't have to be a Saint to do it. that's what I mean when I say "He let me off th hook."
Sunday, February 27, 2011
Unfathomable love
I can barely say the Sorrowful Mysteries anymore because they make me feel like such a wimp. I've been poked and pricked with more needles in the last four days than I ever want to count. And all the ongoing little sufferings I can't even bear to list - Oh my gosh! If you haven't had cancer or something horrible like it, you can't imagine, and I hope you never do. But when I was saying the Fifth Sorrowful Mystery, The Crucifixion, I thought of how horrible all those needle pricks have been to me, but then. . . they were just needles, little tiny-itty bitty needles. . . and not big blunt nails. Jesus I'm so sorry I'm such a wimp. How did You do it?? Your Love must be something of the splendor of the universe to have born that. This is why I'm so devoted to the Sacred Heart, because it represents His unfathomable love. Unfathomable.
Saturday, February 26, 2011
Colorado is beautiful again
My hospital room has a spectacular view of Pikes Peak. I mean spectacular. Breathtaking when you walk in and first see it. But I was so sick for my first four days here I hardly noticed. I probably should have been moved to a room with a view of the parking lot, so that someone who could appreciate the vista could have it. But I know I am really feeling better today because when I woke up this morning I saw the rising sun shine and the blue Colorado sky over the mountain range and I instinctively thought "Magnificent are Your works oh Lord, I will praise Your name forever."
So I'll give the story of this week but be brief. Second chemo ten days ago didn't ever subside. I never started feeling better or recovering really. First five days my husband had to do everything for the baby, and me really. Day six he was supposed to go back to work. The day started well enough, I was a little tired, but managed to get up and take care of baby, start some laundry and make a few calls, but suddenly as he was about to leave, I said "Honey I don't think you should go." I asked him if I could take a half hour nap before he left, but the nap didn't make me feel any better, and in fact I started getting chills. After an hour in the tub I was still shaking, and we called the Doc., who told us to come in. I've been "in" ever since.
Apparently I got some kind of infection. They have never been able to exactly locate the cause of the infection, but the strongest antibiotics they were giving me hadn't touched it after 24 hours so there was deep concern. During this time I was spiking fevers of 103 to 104. They decided to have a minor surgery to remove my "port" because as often happens with infections, the bacteria can latch onto the port and stick in the body. Also, as is par for the course, my white blood cell count was plummeting because I was approaching day 9 after chemo, which is it's lowest ebb.
Watching one's fever, for some reason made me feel like I was on some kind of numbers game at a casino. Every time a nurse would stick a thermometer in my ear I'd chant "low numbahs- come on low numbahs!" Then when I finally got the numbers I wanted I cheered like I'd won the lotto. The night after the port was removed the fevers went to 101-102. The next day and night 99-100, and early early this morning, I heard those happy four little words every cancer patient loves to hear. "Ninety-eight-point-six."
They are very hopeful I can go home tomorrow, Sunday. I am so eager to go to sleep in my own bed with husband nearby and my baby in the next room. I miss them both so much. I only got to have her for an hour yesterday. But even after that I was exhausted. I can't wait to be her mommy again. I can't wait to be her mommy again.
There are many things I can, and hopefully will write about this experience, but this is enough for now. Temp is back down, white cell count is slowly ascending, and Colorado is beautiful again. Thank you all for the prayers and ongoing love. Just reading this blog is a gift to me. Now I have to think of a brilliant way to make this all sound positive for the Caring Bridge site. Hey - was that brief? lol!
So I'll give the story of this week but be brief. Second chemo ten days ago didn't ever subside. I never started feeling better or recovering really. First five days my husband had to do everything for the baby, and me really. Day six he was supposed to go back to work. The day started well enough, I was a little tired, but managed to get up and take care of baby, start some laundry and make a few calls, but suddenly as he was about to leave, I said "Honey I don't think you should go." I asked him if I could take a half hour nap before he left, but the nap didn't make me feel any better, and in fact I started getting chills. After an hour in the tub I was still shaking, and we called the Doc., who told us to come in. I've been "in" ever since.
Apparently I got some kind of infection. They have never been able to exactly locate the cause of the infection, but the strongest antibiotics they were giving me hadn't touched it after 24 hours so there was deep concern. During this time I was spiking fevers of 103 to 104. They decided to have a minor surgery to remove my "port" because as often happens with infections, the bacteria can latch onto the port and stick in the body. Also, as is par for the course, my white blood cell count was plummeting because I was approaching day 9 after chemo, which is it's lowest ebb.
Watching one's fever, for some reason made me feel like I was on some kind of numbers game at a casino. Every time a nurse would stick a thermometer in my ear I'd chant "low numbahs- come on low numbahs!" Then when I finally got the numbers I wanted I cheered like I'd won the lotto. The night after the port was removed the fevers went to 101-102. The next day and night 99-100, and early early this morning, I heard those happy four little words every cancer patient loves to hear. "Ninety-eight-point-six."
They are very hopeful I can go home tomorrow, Sunday. I am so eager to go to sleep in my own bed with husband nearby and my baby in the next room. I miss them both so much. I only got to have her for an hour yesterday. But even after that I was exhausted. I can't wait to be her mommy again. I can't wait to be her mommy again.
There are many things I can, and hopefully will write about this experience, but this is enough for now. Temp is back down, white cell count is slowly ascending, and Colorado is beautiful again. Thank you all for the prayers and ongoing love. Just reading this blog is a gift to me. Now I have to think of a brilliant way to make this all sound positive for the Caring Bridge site. Hey - was that brief? lol!
Thursday, February 24, 2011
update
Okay so the last post was written several days ago, right before going into the hospital and I just got onto a computer tonight. I'm in the hospital and will come out with a description of the last four days in an upcoming post. Suffice for now to say that' I've been pretty miserable, but tonight for the first time I feel a little better. Thank you for the prayers. Will give details later.
V
V
The Short List
There is a whole long list of people I'm not allowed to talk to. Or at least I'm supposed to try something between running away from them in the parking lot, or just courteously kicking them out of my house. My husband has made this list, and it grows every day.
There are some cold hard rules to the list. For example anytime he walks in the house and I'm crying, the person sitting across from me automatically gets the blame. They go on the long list. We've had arguments about this rule. This standard almost got me into deep trouble once when he walked in right after a bad news phone call from a doctor, and I happened to be sitting across from my cousin. After much hard work, I convinced him that she was not to blame for my crying and she was allowed back onto the short list. Phew.
However, the long list certainly has its merits. Other members of the long list include a student and good friend of mine who can't seem to come into the house without three "cancer nightmare stories." First time she came, she told me my "hair would grow back but it would be white and thin." On the same visit she told me I'd have to "wash all my veggies in bleach," and that yes, "something did cause the cancer, something I did, it was somehow my fault. . . but I'd never know what it was." She knew so much, as she told me, because her best friend died of breast cancer after an eighteen year battle. . . . The second time she came into the house she told me a charming story about how I was going to lose all sense of taste and then insisted that I "suck it up" and go watch other singers perform and be stinking happy for them. Both visits left me in tears for hours. She's now only allowed into the house for her lesson and to talk strictly music.
Surprisingly the worst offenders on the long list are the breast cancer survivors. They can't help themselves but come up to me after Mass and say the, honestly, the STUPIDEST things. Things like "I mean I finished radiation six months ago, but it still burns me all over my body!" and my favorite " I just hope and pray for your sake that it's estrogen negative cancer. That is my prayer for you - estrogen negative." It was estrogen positive. Or the all-time fav "The weirdest part was when they had to graft my nipple to my butt for six months." . . . .AGHAGHAGHAGHAGHAGH!!!!!!!!
Finally there is the student I had to literally throw out of my house one day because his brother was "cured" of an incurable cancer using alternative methods by an institute in California. He can't seem to get past an hour in my presence without bringing this up and how chemo will burn up my body and radiation will ruin my life. . . . This guy is almost on my husband's hit list. . . which is one step below the long list. I've explained to him multiple times that I have a very aggressive cancer and we don't have time to waste, and that it generally kills younger women faster than older ones. . . but he doesn't seem to care. . .
Other people on the long list include the pladituders. "Oh God must really love you to be sending you this suffering." "Oh you're going to be a better stronger person when this is over." "God has a plan and we have to trust that He knows best." "You should be happy that He has sent you this suffering. I am so happy for you." Dear readers, please PLEASE never tell someone what they SHOULD be experiencing spiritually at a time of trial. Here's what you should say "I'm so sorry - I'm praying for you. Here's what I can do for you. . . ." Leave the platitudes for the Hallmark Cards.
The short list on the other hand is the VERY short list of people who seem to know and understand what to do and what I need to hear. They generally never make me cry. They always talk in positive terms and make me hear things I don't even want to believe. "You can do it. You can get through this. . . " That sort of stuff. At the all time top of the short list is my friend in New York who is also going through chemo right now. She says exactly what I want to hear even if it's a lie (But if you asked her she'd never say it was a lie). "You - I just know you're going to get through chemo and they aren't going to find any trace of cancer in your body. I know it. And you're going to have another baby. I can see the baby, I can literally see it."
Other people on the short list include my mentor and friend Priscilla who I call whenever I'm really scared because I know no matter what she'll say "You're not going to die - now stop that!" and make me feel ridiculous for having thought it in the first place. Also on the short list are my best friend from back home Carrie, who always talks in hopeful terms and can always make me laugh, and my friend Silvia who tells me I'm wonderful and she admires me and I can get through this whenever I need it. Terry and Heather, and well, lolol anyone who knows this blog exists. These people love me, and I can feel their love, and in the end that's what I need.
Finally - anyone goes on the short list if they ask about the blog, I had one dear friend in CT who was limited to the Caring Bridge updates, which I'm trying to keep positive. She emailed me and basically said "Cut the @#%$. I want to know what's really going on." . . .short list.
There are some cold hard rules to the list. For example anytime he walks in the house and I'm crying, the person sitting across from me automatically gets the blame. They go on the long list. We've had arguments about this rule. This standard almost got me into deep trouble once when he walked in right after a bad news phone call from a doctor, and I happened to be sitting across from my cousin. After much hard work, I convinced him that she was not to blame for my crying and she was allowed back onto the short list. Phew.
However, the long list certainly has its merits. Other members of the long list include a student and good friend of mine who can't seem to come into the house without three "cancer nightmare stories." First time she came, she told me my "hair would grow back but it would be white and thin." On the same visit she told me I'd have to "wash all my veggies in bleach," and that yes, "something did cause the cancer, something I did, it was somehow my fault. . . but I'd never know what it was." She knew so much, as she told me, because her best friend died of breast cancer after an eighteen year battle. . . . The second time she came into the house she told me a charming story about how I was going to lose all sense of taste and then insisted that I "suck it up" and go watch other singers perform and be stinking happy for them. Both visits left me in tears for hours. She's now only allowed into the house for her lesson and to talk strictly music.
Surprisingly the worst offenders on the long list are the breast cancer survivors. They can't help themselves but come up to me after Mass and say the, honestly, the STUPIDEST things. Things like "I mean I finished radiation six months ago, but it still burns me all over my body!" and my favorite " I just hope and pray for your sake that it's estrogen negative cancer. That is my prayer for you - estrogen negative." It was estrogen positive. Or the all-time fav "The weirdest part was when they had to graft my nipple to my butt for six months." . . . .AGHAGHAGHAGHAGHAGH!!!!!!!!
Finally there is the student I had to literally throw out of my house one day because his brother was "cured" of an incurable cancer using alternative methods by an institute in California. He can't seem to get past an hour in my presence without bringing this up and how chemo will burn up my body and radiation will ruin my life. . . . This guy is almost on my husband's hit list. . . which is one step below the long list. I've explained to him multiple times that I have a very aggressive cancer and we don't have time to waste, and that it generally kills younger women faster than older ones. . . but he doesn't seem to care. . .
Other people on the long list include the pladituders. "Oh God must really love you to be sending you this suffering." "Oh you're going to be a better stronger person when this is over." "God has a plan and we have to trust that He knows best." "You should be happy that He has sent you this suffering. I am so happy for you." Dear readers, please PLEASE never tell someone what they SHOULD be experiencing spiritually at a time of trial. Here's what you should say "I'm so sorry - I'm praying for you. Here's what I can do for you. . . ." Leave the platitudes for the Hallmark Cards.
The short list on the other hand is the VERY short list of people who seem to know and understand what to do and what I need to hear. They generally never make me cry. They always talk in positive terms and make me hear things I don't even want to believe. "You can do it. You can get through this. . . " That sort of stuff. At the all time top of the short list is my friend in New York who is also going through chemo right now. She says exactly what I want to hear even if it's a lie (But if you asked her she'd never say it was a lie). "You - I just know you're going to get through chemo and they aren't going to find any trace of cancer in your body. I know it. And you're going to have another baby. I can see the baby, I can literally see it."
Other people on the short list include my mentor and friend Priscilla who I call whenever I'm really scared because I know no matter what she'll say "You're not going to die - now stop that!" and make me feel ridiculous for having thought it in the first place. Also on the short list are my best friend from back home Carrie, who always talks in hopeful terms and can always make me laugh, and my friend Silvia who tells me I'm wonderful and she admires me and I can get through this whenever I need it. Terry and Heather, and well, lolol anyone who knows this blog exists. These people love me, and I can feel their love, and in the end that's what I need.
Finally - anyone goes on the short list if they ask about the blog, I had one dear friend in CT who was limited to the Caring Bridge updates, which I'm trying to keep positive. She emailed me and basically said "Cut the @#%$. I want to know what's really going on." . . .short list.
Tuesday, February 8, 2011
The idiots and the prodigies
I've always had a theory that we all have a calling by God. A unique and individual calling. And if we somehow in life find that calling, we will be fulfilling our potential to the maximum and bringing some kind of glory to the universe. Haven't you ever met someone who just sort of "glowed" when they did what they did best? Not sure if that explains it right, but let's see if this does.
First there are the idiots. Before my second biopsy I sat down with the technician to look at the most recent mammograms. She was a middle aged woman about forty-five with too-early wrinkled skin, I suspected from smoking. She sat in a rather slouched over manner and always seemed to have a look of annoyance on her face. Her voice was dead-pan and completely lifeless. In the theater business we would say she was "phoning it in."
She pointed out the new calcification they would be testing that morning on the right side. Then on a whim she took out the pictures of the left side, the one we already knew held cancer. She turned the computer screen so I could see and she pointed to a dense area of white specks and said "That's your tumor." Then I noticed that the white specks stretched beyond what looked like the most dense area. I also noticed that at the bottom of the screen was a little ruler with the letters "cm" at the end of it.
"They told me it was 1.4 cm." I said looking for assurance.
"Yeah?" She replied. "huh. Well it looks like your calcification stretches all the way over here."
"Well is that ruler on the bottom right? That would mean the tumor is over 5cm."
"Yeah. You're right. I don't know why they told you 1.4. From what I can see it measures about. . . 5.5cm"
"What?!?"
I had been holding on to the hope that I was reading the darn thing wrong, because I didn't understand it, but here she was confirming my worst fears. The difference between 1.4 and 5.5 was the difference between Stage 1 and Stage 4. It was the difference between lumpectomy and mastectomy.
"But - that's a huge difference!"
"Yeah I know" she said nonchalantly.
My eyes began to swell up.
"But that's the difference between Stage 1 and Stage 4!"
"Oh is it?" She sipped on her coffee.
I began to sob convulsively. But still she persisted.
"Well I'm sorry but I don't know why they told you that. All I can tell you is what I see here and it's clearly bigger than 5cm."
I started shaking between sobs. But still she persisted.
"I mean did they tell you that on the pathology report?"
I looked confused. "What's a pathology report?"
She rolled her eyes.
"You didn't get a pathology report?"
"I don't know! I don't know what you're talking about!"
Sobbing, massive sobbing, shaking, tears pouring down. I reached for the box of Kleenex on her desk. Apparently a lot of people cry in here. . . .why else would there be Kleenex? Still she persisted.
"Well look, how did you find out it was cancer?"
"They sent a sheet of paper to my OB. Here-" I reached trembling into what I have come to call my "cancer bag" and grabbed the binder with all the various paperwork. Frantically I flipped through the mass of receipts, letters, and information sheets to find that original scrap of paper. That original "You have breast cancer." Maybe if I could just see it in writing, it still wouldn't be as bad as all that. If I could just find that stupid piece of paper. What was all this stuff? Where IS IT?!?!?
Finally I found it. "Here!" I basically threw it across the desk at the woman who was looking at me as though sedated over the rim of her cup.
"Well this is the report. I guess you should trust what they tell you."
"What do you mean?!" What DID she mean? Should we ever NOT trust a report? Do they make huge 4cm mistakes all the time???
"Look I'm sorry but all I can tell you is what I see here, and that is that the tumor is, well over 5cm. See - look at it yourself."
"I don't need to look at it myself!" More tears, another Kleenex. Another sip of coffee and a lean back in her swivel chair. Then finally a moment of revelation. Maybe, just maybe she should shut up because she didn't know what she was talking about.
"Well, you know, you should really trust the pathology report. I mean, they understand these things better than me. I think you can just trust your pathology report."
Then the doctor, by the Grace of God, finally walked in. He took a look at the situation, saw his frantic patient convulsively sobbing minutes before surgery and asked what was going on. In less than a minute he confirmed the "pathology report" and reassured me that just because we see calcification elsewhere in the breast doesn't mean they are cancer or a part of the tumor.
Idiot.
Then there are the prodigies.
The day I went in for my PET scan I was greeted at the door by the smiling face of a man I like to call Wayne. That wasn't his name, but he reminded me of Wayne Brady from the TV show "Whose Line is it Anyway:" African American, semi-short, good shape, bouncy full of energy and very chipper. Right away I knew, even if subconsciously amidst the thick cloud of fear that enveloped me, that around this man there was a "glow." I tried to ignore it and proceed with my horror.
Now a PET scan is not a fun thing for a number of reasons. First of all they put you in a tube that's rather enclosed. My doctor had given me a pill to take to calm me down for the scan since I am claustrophobic, but I stupidly looked at the scanner from the outside and said "I don't need the pill." Later when they started rolling me into the tube my whole body started screaming, "I should've taken the %$*# pill!!"
Another reason a PET scan isn't fun is they inject you with something they like to call "radioactive material." Yummy. For someone who has always been such a health-freak she wouldn't drink soda, the thought of this glowing green smoothie going into my veins was just a joy-ride.
Lastly, the PET scan results can save or condemn you. It basically tells you if the cancer has spread to other organs in your body. A clear PET scan is a whoo-hoo! A positive PET scan is a call to the funeral home. Basically a PET scan is a scary scary thing.
"Hey how you doing to day?" He chirped as he bounced up to me in the waiting room. I had been told to strip down and put on a hospital johnny. "Don't you just love those johnny gowns? " Sarcastically with a grin.
"I'm cold."
"Alright well I'll take care of that for you - you just come back here and follow me, it's much warmer where you'll be waiting, and I'll get you a nice warm blanket too."
Wayne almost skipped down the hall. I was at first annoyed by it. Didn't he know this was a serious place? Didn't he know that the results of today could determine the rest of my life? Shouldn't he be more subdued?
As he prepped me for my procedure he talked gaily about things like they were nothing. Everything I was doing today was no big deal, piece of cake. He asked me about myself and got me talking to him. I caught myself laughing a couple times reluctantly. He found out I'd met my husband on EHarmony and expressed with enthusiasm a desire to know all the details of our matching experience. Of course everyone loves to tell their love story. We shared our philosophies about romantic love and expressed our mutual life-contentedness at having a partner with whom we were so in love. He told me his love story.
At some point during all this sharing and talking he had put the IV into my arm. There was no fidgeting or searching around for a vein like their usually is. No plucking or pricking or tapping my arms and looking at my veins with a deep concern that "there might be a problem." The darn thing just went in and that was it. Less than a second. It was so easy and smooth and he hadn't even stopped talking that I was surprised that it had happened. I looked at my arm and realized there was an IV in it and I said "How'd you do that?"
"What that?" He pointed at it and laughed. "The -uh- IV?" More laughter. He actually buckled over.
"No I'm serious - everybody always tells me I've got small veins - it's usually such a torment."
"Nothin' wrong with your veins. You've got a good vein right there. Whoever told you that's a bunch of idiots." (Interesting choice of word).
"Huh- you just like, put it in."
He laughed again. "Well what'd you expect me to do?"
"Well a lot of people like to go fishing in there." More laughter.
"Yeah well - you flinched a little when I put it in, I could tell you must've had some bad experience or something."
I had flinched?? I had flinched??? Surely I know when I flinch. I haven't lost all sense of body awareness yet. And besides, I'm the one who's flinching here- shouldn't I notice it before he does? And did he even stop for a second when I did? I didn't notice him noticing me flinching. I didn't notice squat.
I flinched??
He gave me some magazines told me they were all terrible and left me to absorb the radioactive material into my bloodstream. He checked on me every couple minutes. How was was I doin? Dd I want another blanket? Was I warm enough? Would I like some juice or a snack or something? Did I need him to just come in an sit and chat - cause he could do that if I wanted him too. . .
Then the scan and that terrible moment of panic as they rolled me in. Wayne kept talking to me from the outside for the first couple minutes.
"Are you alright? You sure? I can wheel you out now if you need it."
My whole body was screaming in terror, I forced myself to keep my eyes closed the whole time and prayed and tried to visualize myself somewhere else.
"I can stay right here and talk to you if you need me to. I'm fine with that."
I let him go. Somehow I thought I needed to put all my focus on keeping myself calm.
Regardless he came in a couple times to "check on me."
"Do you like music - I've got music I can turn on if you think that will help."
"uh- yeah I guess that would help."
"What kind you like?" I've got Satellite Radio - I can get you anything you want."
"Uh I guess, Classical?"
"Okay you got it."
I couldn't see him but I swear I heard him bounce over to the far side of the room and then suddenly there was music (which in a cruel sick twisted sense of fate happened to be John Williams theme music from the movie Superman. Talk about surreal.)
At the end of my test Wayne guided me to the exit and finished our conversations. I actually felt like my day was better for having come here that day. I felt like MY DAY WAS BETTER FOR HAVING HAD A PET SCAN.
Prodigy.
I think everyone should try to find their gift. That job that they were meant to do - and never settle for the one you know - or that's convenient, or safe, or just a paycheck. Everyone should keep looking - their whole lives even. Because even if Wayne became a PET scan technician two days before he died. . . they would have been a great two days, and made somebody's tip through cancer a lot better.
First there are the idiots. Before my second biopsy I sat down with the technician to look at the most recent mammograms. She was a middle aged woman about forty-five with too-early wrinkled skin, I suspected from smoking. She sat in a rather slouched over manner and always seemed to have a look of annoyance on her face. Her voice was dead-pan and completely lifeless. In the theater business we would say she was "phoning it in."
She pointed out the new calcification they would be testing that morning on the right side. Then on a whim she took out the pictures of the left side, the one we already knew held cancer. She turned the computer screen so I could see and she pointed to a dense area of white specks and said "That's your tumor." Then I noticed that the white specks stretched beyond what looked like the most dense area. I also noticed that at the bottom of the screen was a little ruler with the letters "cm" at the end of it.
"They told me it was 1.4 cm." I said looking for assurance.
"Yeah?" She replied. "huh. Well it looks like your calcification stretches all the way over here."
"Well is that ruler on the bottom right? That would mean the tumor is over 5cm."
"Yeah. You're right. I don't know why they told you 1.4. From what I can see it measures about. . . 5.5cm"
"What?!?"
I had been holding on to the hope that I was reading the darn thing wrong, because I didn't understand it, but here she was confirming my worst fears. The difference between 1.4 and 5.5 was the difference between Stage 1 and Stage 4. It was the difference between lumpectomy and mastectomy.
"But - that's a huge difference!"
"Yeah I know" she said nonchalantly.
My eyes began to swell up.
"But that's the difference between Stage 1 and Stage 4!"
"Oh is it?" She sipped on her coffee.
I began to sob convulsively. But still she persisted.
"Well I'm sorry but I don't know why they told you that. All I can tell you is what I see here and it's clearly bigger than 5cm."
I started shaking between sobs. But still she persisted.
"I mean did they tell you that on the pathology report?"
I looked confused. "What's a pathology report?"
She rolled her eyes.
"You didn't get a pathology report?"
"I don't know! I don't know what you're talking about!"
Sobbing, massive sobbing, shaking, tears pouring down. I reached for the box of Kleenex on her desk. Apparently a lot of people cry in here. . . .why else would there be Kleenex? Still she persisted.
"Well look, how did you find out it was cancer?"
"They sent a sheet of paper to my OB. Here-" I reached trembling into what I have come to call my "cancer bag" and grabbed the binder with all the various paperwork. Frantically I flipped through the mass of receipts, letters, and information sheets to find that original scrap of paper. That original "You have breast cancer." Maybe if I could just see it in writing, it still wouldn't be as bad as all that. If I could just find that stupid piece of paper. What was all this stuff? Where IS IT?!?!?
Finally I found it. "Here!" I basically threw it across the desk at the woman who was looking at me as though sedated over the rim of her cup.
"Well this is the report. I guess you should trust what they tell you."
"What do you mean?!" What DID she mean? Should we ever NOT trust a report? Do they make huge 4cm mistakes all the time???
"Look I'm sorry but all I can tell you is what I see here, and that is that the tumor is, well over 5cm. See - look at it yourself."
"I don't need to look at it myself!" More tears, another Kleenex. Another sip of coffee and a lean back in her swivel chair. Then finally a moment of revelation. Maybe, just maybe she should shut up because she didn't know what she was talking about.
"Well, you know, you should really trust the pathology report. I mean, they understand these things better than me. I think you can just trust your pathology report."
Then the doctor, by the Grace of God, finally walked in. He took a look at the situation, saw his frantic patient convulsively sobbing minutes before surgery and asked what was going on. In less than a minute he confirmed the "pathology report" and reassured me that just because we see calcification elsewhere in the breast doesn't mean they are cancer or a part of the tumor.
Idiot.
Then there are the prodigies.
The day I went in for my PET scan I was greeted at the door by the smiling face of a man I like to call Wayne. That wasn't his name, but he reminded me of Wayne Brady from the TV show "Whose Line is it Anyway:" African American, semi-short, good shape, bouncy full of energy and very chipper. Right away I knew, even if subconsciously amidst the thick cloud of fear that enveloped me, that around this man there was a "glow." I tried to ignore it and proceed with my horror.
Now a PET scan is not a fun thing for a number of reasons. First of all they put you in a tube that's rather enclosed. My doctor had given me a pill to take to calm me down for the scan since I am claustrophobic, but I stupidly looked at the scanner from the outside and said "I don't need the pill." Later when they started rolling me into the tube my whole body started screaming, "I should've taken the %$*# pill!!"
Another reason a PET scan isn't fun is they inject you with something they like to call "radioactive material." Yummy. For someone who has always been such a health-freak she wouldn't drink soda, the thought of this glowing green smoothie going into my veins was just a joy-ride.
Lastly, the PET scan results can save or condemn you. It basically tells you if the cancer has spread to other organs in your body. A clear PET scan is a whoo-hoo! A positive PET scan is a call to the funeral home. Basically a PET scan is a scary scary thing.
"Hey how you doing to day?" He chirped as he bounced up to me in the waiting room. I had been told to strip down and put on a hospital johnny. "Don't you just love those johnny gowns? " Sarcastically with a grin.
"I'm cold."
"Alright well I'll take care of that for you - you just come back here and follow me, it's much warmer where you'll be waiting, and I'll get you a nice warm blanket too."
Wayne almost skipped down the hall. I was at first annoyed by it. Didn't he know this was a serious place? Didn't he know that the results of today could determine the rest of my life? Shouldn't he be more subdued?
As he prepped me for my procedure he talked gaily about things like they were nothing. Everything I was doing today was no big deal, piece of cake. He asked me about myself and got me talking to him. I caught myself laughing a couple times reluctantly. He found out I'd met my husband on EHarmony and expressed with enthusiasm a desire to know all the details of our matching experience. Of course everyone loves to tell their love story. We shared our philosophies about romantic love and expressed our mutual life-contentedness at having a partner with whom we were so in love. He told me his love story.
At some point during all this sharing and talking he had put the IV into my arm. There was no fidgeting or searching around for a vein like their usually is. No plucking or pricking or tapping my arms and looking at my veins with a deep concern that "there might be a problem." The darn thing just went in and that was it. Less than a second. It was so easy and smooth and he hadn't even stopped talking that I was surprised that it had happened. I looked at my arm and realized there was an IV in it and I said "How'd you do that?"
"What that?" He pointed at it and laughed. "The -uh- IV?" More laughter. He actually buckled over.
"No I'm serious - everybody always tells me I've got small veins - it's usually such a torment."
"Nothin' wrong with your veins. You've got a good vein right there. Whoever told you that's a bunch of idiots." (Interesting choice of word).
"Huh- you just like, put it in."
He laughed again. "Well what'd you expect me to do?"
"Well a lot of people like to go fishing in there." More laughter.
"Yeah well - you flinched a little when I put it in, I could tell you must've had some bad experience or something."
I had flinched?? I had flinched??? Surely I know when I flinch. I haven't lost all sense of body awareness yet. And besides, I'm the one who's flinching here- shouldn't I notice it before he does? And did he even stop for a second when I did? I didn't notice him noticing me flinching. I didn't notice squat.
I flinched??
He gave me some magazines told me they were all terrible and left me to absorb the radioactive material into my bloodstream. He checked on me every couple minutes. How was was I doin? Dd I want another blanket? Was I warm enough? Would I like some juice or a snack or something? Did I need him to just come in an sit and chat - cause he could do that if I wanted him too. . .
Then the scan and that terrible moment of panic as they rolled me in. Wayne kept talking to me from the outside for the first couple minutes.
"Are you alright? You sure? I can wheel you out now if you need it."
My whole body was screaming in terror, I forced myself to keep my eyes closed the whole time and prayed and tried to visualize myself somewhere else.
"I can stay right here and talk to you if you need me to. I'm fine with that."
I let him go. Somehow I thought I needed to put all my focus on keeping myself calm.
Regardless he came in a couple times to "check on me."
"Do you like music - I've got music I can turn on if you think that will help."
"uh- yeah I guess that would help."
"What kind you like?" I've got Satellite Radio - I can get you anything you want."
"Uh I guess, Classical?"
"Okay you got it."
I couldn't see him but I swear I heard him bounce over to the far side of the room and then suddenly there was music (which in a cruel sick twisted sense of fate happened to be John Williams theme music from the movie Superman. Talk about surreal.)
At the end of my test Wayne guided me to the exit and finished our conversations. I actually felt like my day was better for having come here that day. I felt like MY DAY WAS BETTER FOR HAVING HAD A PET SCAN.
Prodigy.
I think everyone should try to find their gift. That job that they were meant to do - and never settle for the one you know - or that's convenient, or safe, or just a paycheck. Everyone should keep looking - their whole lives even. Because even if Wayne became a PET scan technician two days before he died. . . they would have been a great two days, and made somebody's tip through cancer a lot better.
Thursday, February 3, 2011
My little girl
She is so beautiful. Every part of the experience of her is wonderful. Even changing poopy diapers is a form of love-joy. My favorite time is in the morning when she calls to us from her little crib and I lean over and she recognizes me. Then she lets loose a big smile and her whole body curls up in pleasure. I don't pick her up right away. I just try to enjoy that moment for a while and we chat a bit before starting the day. It doesn't last long though. The discomfort of a dirty diaper eventually inches in on our conversation. I also love putting her to sleep at night. We have a ritual where I rock her in my arms and say the Rosary while giving her a bottle. She loves it. Knows when it's coming. And almost never puts up a fuss.
Now Gary, or a sitter has to do all baby lifting. The first day of chemo was really bad. I came home and threw up all day and sat on the sofa dizzy, tired and experiencing more nausea that I thought was possible. They had prescribed me a ton of nausea meds, but I just kept throwing them up. So finally at about 9pm my husband called the 24hour clinic and the doctor told him to get to a 24 hour pharmacy (a half hour drive each way!) to pick up a much stronger med that would at least put me out.
Everyone told me to drink lots of water the day of chemo - but I literally threw it all up. Morning of Day 2 we went immediately to the clinic to sit on a saline IV bag for a couple hours. They also inserted a permanent pump into my port which will distribute very powerful anti nausea meds at regular intervals - or if I get really bad I can push a button and get a jolt of meds. This definitely helps the nausea. I am nauseous, but am able to eat a little here and there. However these drugs make me very dizzy and tired so I feel very nervous about picking up baby. I find I literally wobble into walls. Luckily daddy has been home for the last three days, but I suspect he is beginning to realize what a challenge being the full-time care giver can be. I have no desire for him to learn that lesson. I want to pick up my baby, feed her and carry her and swing her. I want to play with her and entertain her and sing songs to her. I haven't sung to her in two days now. Will I ever sing again? Maybe after a couple more days? We hope to get the pump removed on Saturday morning.
Gary is struggling too. It's a lot for him - it would be for anyone. I remember the first three months alone with baby. Had to be the hardest most stressful months of my life. I used to love conducting the children's choir once a week because I finally felt like I was doing something I knew how to do. Now Gary's really on his own, and I understand the frustration he must be feeling. In the end though - he is a really good man, and the luckiest part of this whole process for me.
Still, whenever he gets tired of her, I am dying to hold her, but I feel so weak and dizzy. . . he can make her laugh quite often. I love to hear her laughter - her daddy does it best.
Before treatments began I used to think "I have to get through this for her." Then as the tests and pokes began I thought "she will get me through this." Now that I'm experiencing the chemo. "I have to get through this for her." I want to be her mommy again.
Not sure what the right thing to do here is. I really wanted to be the best case scenario patient. So many women just keep right on going to work during chemo. But I feel so tired and dizzy and nauseous. Am I doing something wrong? I want to do all the things I planned, like exercising and teaching some voice lessons. But will I be able to? What's the best thing to do here for the long term results? Sit it out and watch stupid TV or force myself to do activities I don't feel up to doing?
They are giving me some hormone shots that should help to alleviate the effect of the chemo on my fertility. It is not a guarantee fix and for many women doesn't work at all. But I have been told by several doctors that I will also gain a significant amount of weight from them. . . great.
Every time I see her I thank Jesus for my little girl. Sometimes in the quiet of my heart. Sometimes so others can hear me. Then Gary replies "I told you, you don't have to call me Jesus." :) Daddy can almost always make me laugh. There is a good possibility that we won't be able to have any more children after this. This makes me so sad, but double grateful for our little girl. Perhaps God will send an adoptive child our way? I can' look at the future anymore... All my life I was told to have goals. Long term goals, short term goals. What a bunch of cocky poop. Cancer changes everything. EVERYTHING. No more goals. Only living in the present - today and making the best of that.
At least that's my philosophy for today.
Now Gary, or a sitter has to do all baby lifting. The first day of chemo was really bad. I came home and threw up all day and sat on the sofa dizzy, tired and experiencing more nausea that I thought was possible. They had prescribed me a ton of nausea meds, but I just kept throwing them up. So finally at about 9pm my husband called the 24hour clinic and the doctor told him to get to a 24 hour pharmacy (a half hour drive each way!) to pick up a much stronger med that would at least put me out.
Everyone told me to drink lots of water the day of chemo - but I literally threw it all up. Morning of Day 2 we went immediately to the clinic to sit on a saline IV bag for a couple hours. They also inserted a permanent pump into my port which will distribute very powerful anti nausea meds at regular intervals - or if I get really bad I can push a button and get a jolt of meds. This definitely helps the nausea. I am nauseous, but am able to eat a little here and there. However these drugs make me very dizzy and tired so I feel very nervous about picking up baby. I find I literally wobble into walls. Luckily daddy has been home for the last three days, but I suspect he is beginning to realize what a challenge being the full-time care giver can be. I have no desire for him to learn that lesson. I want to pick up my baby, feed her and carry her and swing her. I want to play with her and entertain her and sing songs to her. I haven't sung to her in two days now. Will I ever sing again? Maybe after a couple more days? We hope to get the pump removed on Saturday morning.
Gary is struggling too. It's a lot for him - it would be for anyone. I remember the first three months alone with baby. Had to be the hardest most stressful months of my life. I used to love conducting the children's choir once a week because I finally felt like I was doing something I knew how to do. Now Gary's really on his own, and I understand the frustration he must be feeling. In the end though - he is a really good man, and the luckiest part of this whole process for me.
Still, whenever he gets tired of her, I am dying to hold her, but I feel so weak and dizzy. . . he can make her laugh quite often. I love to hear her laughter - her daddy does it best.
Before treatments began I used to think "I have to get through this for her." Then as the tests and pokes began I thought "she will get me through this." Now that I'm experiencing the chemo. "I have to get through this for her." I want to be her mommy again.
Not sure what the right thing to do here is. I really wanted to be the best case scenario patient. So many women just keep right on going to work during chemo. But I feel so tired and dizzy and nauseous. Am I doing something wrong? I want to do all the things I planned, like exercising and teaching some voice lessons. But will I be able to? What's the best thing to do here for the long term results? Sit it out and watch stupid TV or force myself to do activities I don't feel up to doing?
They are giving me some hormone shots that should help to alleviate the effect of the chemo on my fertility. It is not a guarantee fix and for many women doesn't work at all. But I have been told by several doctors that I will also gain a significant amount of weight from them. . . great.
Every time I see her I thank Jesus for my little girl. Sometimes in the quiet of my heart. Sometimes so others can hear me. Then Gary replies "I told you, you don't have to call me Jesus." :) Daddy can almost always make me laugh. There is a good possibility that we won't be able to have any more children after this. This makes me so sad, but double grateful for our little girl. Perhaps God will send an adoptive child our way? I can' look at the future anymore... All my life I was told to have goals. Long term goals, short term goals. What a bunch of cocky poop. Cancer changes everything. EVERYTHING. No more goals. Only living in the present - today and making the best of that.
At least that's my philosophy for today.
Thursday, January 27, 2011
My Agony in the Garden
It's ridiculous to compare the two really. I'm not sweating drops of blood, and my torture is minuscule at it's worst compared to His of course, but still, this is my Agony in the Garden. Waiting, always waiting and living in constant dread and fear. Hating the sound of the phone ringing, knowing it could be another doctor with more bad news. I finally understand this Mystery of the Rosary. Waiting for the impending suffering, the human mind plays terrible tricks on you and the worst part is that they may even be based in reality. Waiting. Waiting for the results of tests and surgeries and biopsies. Not knowing if it's stage 2 or stage 4, not knowing if the chemo will kill it, not knowing if you'll survive the chemo, not knowing if you can afford the time off, not knowing how you will take care of your little girl, not knowing what caused this in the first place, not knowing if you've just started the slow unstoppable descent into your death.
I keep thinking the waiting has got to be the worst part. . . but then it is only the first of five Mysteries about suffering, and death is only at the very end of them. I keep thinking once I REALLY know what I'm fighting, well then I can dig my heels in the sand and fight it with all I've got. But first of all you NEVER know what you're fighting. All I seem to encounter are Dr. Vague's who can only, at best, give you an idea of what you're facing but not the precise parcel. They thought it was in one breast - now it may be in two. They thought it was only 1cm, now it may be 5cm, they thought it was confined to the breast, now it may have spread to other organs. . . . All these tests and nobody knows anything. .
But in the end knowing is not better. Yesterday we had our "Chemo teaching" session at the oncologist office. Basically they sit you down and list everything you're about to go through. "You're going to lose your hair" is just the beginning. By the time I left the office I was in tears because I was hunched over with brittle bones and no signs of youth or fertility anywhere. My mouth was full of sores and my chest and other cavities were covered in rashes and boils, I was either constipated or diarreah or throwing up all the time. I was lethargic and my heart was palpitating and unstable. My fingertips and toes were numb and tingling, and I couldn't sleep. Oh and I was bald. Knowing is not better. Waiting is better than knowing.
They inserted something called a "port" into my chest to save me feeling pricks every time I go in for treatments and tests. Well. . . they used the port for the first time this week and I was literally screaming in the treatment area while three technicians held my hand and pushed this searing-pain needle into my chest over and over and OVER. "I don't know why it isn't working" they'd say to each other, then they would go get someone else who would start jamming and pushing and poking all over again. Thanks for the port. . . next time I'll just take the stinking IV!
Still, even though horror is horror, something in me has changed and accepted the cancer now. I'm still crying three or four times a day, and certainly every time I talk to a doctor or technician, but something has accepted it in my mind. This is my suffering, my horror, it's my turn. And even though I hate to admit it, somewhere in the back of my mind there is a tiny voice that can be discerned no matter how I try to squelch it. It both terrifies and delights me. It keeps saying "One day you will thank Me for this."
Impossible.
I keep thinking the waiting has got to be the worst part. . . but then it is only the first of five Mysteries about suffering, and death is only at the very end of them. I keep thinking once I REALLY know what I'm fighting, well then I can dig my heels in the sand and fight it with all I've got. But first of all you NEVER know what you're fighting. All I seem to encounter are Dr. Vague's who can only, at best, give you an idea of what you're facing but not the precise parcel. They thought it was in one breast - now it may be in two. They thought it was only 1cm, now it may be 5cm, they thought it was confined to the breast, now it may have spread to other organs. . . . All these tests and nobody knows anything. .
But in the end knowing is not better. Yesterday we had our "Chemo teaching" session at the oncologist office. Basically they sit you down and list everything you're about to go through. "You're going to lose your hair" is just the beginning. By the time I left the office I was in tears because I was hunched over with brittle bones and no signs of youth or fertility anywhere. My mouth was full of sores and my chest and other cavities were covered in rashes and boils, I was either constipated or diarreah or throwing up all the time. I was lethargic and my heart was palpitating and unstable. My fingertips and toes were numb and tingling, and I couldn't sleep. Oh and I was bald. Knowing is not better. Waiting is better than knowing.
They inserted something called a "port" into my chest to save me feeling pricks every time I go in for treatments and tests. Well. . . they used the port for the first time this week and I was literally screaming in the treatment area while three technicians held my hand and pushed this searing-pain needle into my chest over and over and OVER. "I don't know why it isn't working" they'd say to each other, then they would go get someone else who would start jamming and pushing and poking all over again. Thanks for the port. . . next time I'll just take the stinking IV!
Still, even though horror is horror, something in me has changed and accepted the cancer now. I'm still crying three or four times a day, and certainly every time I talk to a doctor or technician, but something has accepted it in my mind. This is my suffering, my horror, it's my turn. And even though I hate to admit it, somewhere in the back of my mind there is a tiny voice that can be discerned no matter how I try to squelch it. It both terrifies and delights me. It keeps saying "One day you will thank Me for this."
Impossible.
Sunday, January 23, 2011
Forgetting horror
Occasionally I forget I'm supposed to be terrified. I'll be just enjoying some time with my husband and little girl laughing and having fun like we did before "You have breast cancer" and suddenly I'll get that weird feeling like I'm forgetting something. Then I remember. Oh yeah - I forgot the horror. And in one sickening wave it all comes back to me violently - so much so that I think for a second I think I'm going to throw up.
Got more bad news. I'm not posting it on my Carebridge website. What's the point of depressing everybody further? I know they are trying to help me, but I hate my doctors because none of the can give me a shred of good news or even hope. Every time I talk to one of them the news gets worse. First it was this itty-bitty teeny weeny thing they saw on the mammogram. Then it was breast cancer. Then it was just a tiny 1cm tumor. Then it had spread to the lymph nodes. Now another doctor thinks it has spread throughout both breasts and is not confined to the parameters of a tumor. They don't even tell you what that means. They just say things like "It will strongly affect your surgical options." Which translated into civilian speak means "You're going to need to lob off both of your breasts." At age 38. With a new husband and baby.
I cut my hair. I didn't want my baby to be scared when mommy showed up bald. So I went to a salon and told them to cut it all off. It's about an inch long now all around. I look like a man. I hate it, but it was definitely quicker in the shower this morning. My husband is so sweet. He says I look cute and he likes it. I know he's being sincere. And it's funny I still feel like me. Nothing has changed, except now when I look in the mirror I don't know who that person is. I've spent so many years with long thick black curly hair that I see a stranger looking back at me. I wonder if I will see a monster in a couple months when all the hair has fallen out and the other effects of chemo have set in.
I definitely turned a corner the other day when they told me about the double mastectomy. I've gotten so in the habit of getting bad news that I'm convinced they will lob off both my breasts and when I wake up flat chested with two big scars on my chest, I'll see that disappointed look on my husband's face again and the surgeon will tell me they "found more cancer." So I'm not dreading chemo anymore. In fact I can't wait to start. I want the stuff to go in and burn out the cancer and save my life for my little girl. Probably won't be able to have any more children, but I've come to terms with that I think - at least for today. I want to live - for my husband, for myself, and for my daughter. I don't want to die.
Got more bad news. I'm not posting it on my Carebridge website. What's the point of depressing everybody further? I know they are trying to help me, but I hate my doctors because none of the can give me a shred of good news or even hope. Every time I talk to one of them the news gets worse. First it was this itty-bitty teeny weeny thing they saw on the mammogram. Then it was breast cancer. Then it was just a tiny 1cm tumor. Then it had spread to the lymph nodes. Now another doctor thinks it has spread throughout both breasts and is not confined to the parameters of a tumor. They don't even tell you what that means. They just say things like "It will strongly affect your surgical options." Which translated into civilian speak means "You're going to need to lob off both of your breasts." At age 38. With a new husband and baby.
I cut my hair. I didn't want my baby to be scared when mommy showed up bald. So I went to a salon and told them to cut it all off. It's about an inch long now all around. I look like a man. I hate it, but it was definitely quicker in the shower this morning. My husband is so sweet. He says I look cute and he likes it. I know he's being sincere. And it's funny I still feel like me. Nothing has changed, except now when I look in the mirror I don't know who that person is. I've spent so many years with long thick black curly hair that I see a stranger looking back at me. I wonder if I will see a monster in a couple months when all the hair has fallen out and the other effects of chemo have set in.
I definitely turned a corner the other day when they told me about the double mastectomy. I've gotten so in the habit of getting bad news that I'm convinced they will lob off both my breasts and when I wake up flat chested with two big scars on my chest, I'll see that disappointed look on my husband's face again and the surgeon will tell me they "found more cancer." So I'm not dreading chemo anymore. In fact I can't wait to start. I want the stuff to go in and burn out the cancer and save my life for my little girl. Probably won't be able to have any more children, but I've come to terms with that I think - at least for today. I want to live - for my husband, for myself, and for my daughter. I don't want to die.
Thursday, January 20, 2011
Mad at God
Everyone says it's okay to be mad at God. But I admit it feels a little ridiculous. Sometimes my baby girl will get put down in a seat when she wants to be held, and this low pitched cross between a squeal and a growl will come out of her. It's her "I'm angry" sound. And I admit. I laugh when she does it. Her little tiny body gets all red and her fists clench and her mouth and eyes clamp shut and she just shakes around growling. It's the utmost extent of her anger - and it's ridiculous. Sometimes I wonder if that's what we look like to God.
I also have the brains to know I have no right to be angry. Nobody gets through life without a little bodily damage, and I am well over due. Suffering is a part of the package and I know that. I guess I was hoping I could float by with relationship and other life lessons sufferings. . .But we all have to suffer right. I mean does anybody out there know anyone who gets through unscathed? And I asked for a happy marriage and I've got one. So it's gotta be something else.
As a Christian there is always the indisputable sign of the Cross. Suffering: Jesus did it. I've always nobly said that Jesus was so pure He could have redeemed humanity with a pin-prick. Now I know that He had to die a horrible death because we never would have believed in His Love if He hadn't.
I feel like there is a big heavy boulder hanging over my head. Yesterday was terrible. Not only did I have to be away from my little girl all day, but I had to go into surgery - something I've never done before. I was terrified the whole time and I think I started bawling like five times, including when they put me on the table. When I woke up I knew we had bad news because of the look on my husband's face. He tried to put a positive spin on it, but I know him. He was disappointed. Then the surgeon came around the corner and said "Bummer."
I wish someone would say "Hey it could be a lot worse!" But the doctors don't say that. They just keep saying "We don't know everything and we'll have more information later." Big heavy boulder swinging over my head.
I keep getting emails from people telling me to have a positive attitude. But I really think that's unfair. I HAD a positive attitude about the results of the biopsy. I was convinced it was not cancer. I was totally wrong about that and hence didn't prepare myself for the worst. At least now I know better - I should be a little negative so when the surgeons say "bummer" I'm not so completely devastated. Again. If this survival thing is a lottery - I'm a dead woman. . .
And as for positive attitudes and being "chipper all the time" I find it immensely hard to believe that Christ carried that cross with a smile on His face. No way. All the artwork agrees with me. He and everybody who loved Him look pretty miserable. If He was allowed to be miserable so am I.
We don't know the extent of the horrible yet - but the cancer is not confined to my breasts. They found a spot on my lymph nodes. Great. Can't I get SOME good news here? Isn't it enough that I can't have any more children? Does EVERYTHING have to be so stinking bleak? Will Annamarie be deprived of a mother?
Whenever I have that thought I hear all the voices in my head that say "God knows best" and "One day we'll understand how His plan was for the best." That means that if I am slotted to die, I must have been a terrible mother who would have messed her life up something awful. So I don't find that consoling at all.
So I'm not mad at God. But I'm not happy with Him either. I don't want any of this. And the worst part is I still have no idea the extent of the horrors that are about to befall me. That boulder above my head remains horrifyingly anonymous.
I also have the brains to know I have no right to be angry. Nobody gets through life without a little bodily damage, and I am well over due. Suffering is a part of the package and I know that. I guess I was hoping I could float by with relationship and other life lessons sufferings. . .But we all have to suffer right. I mean does anybody out there know anyone who gets through unscathed? And I asked for a happy marriage and I've got one. So it's gotta be something else.
As a Christian there is always the indisputable sign of the Cross. Suffering: Jesus did it. I've always nobly said that Jesus was so pure He could have redeemed humanity with a pin-prick. Now I know that He had to die a horrible death because we never would have believed in His Love if He hadn't.
I feel like there is a big heavy boulder hanging over my head. Yesterday was terrible. Not only did I have to be away from my little girl all day, but I had to go into surgery - something I've never done before. I was terrified the whole time and I think I started bawling like five times, including when they put me on the table. When I woke up I knew we had bad news because of the look on my husband's face. He tried to put a positive spin on it, but I know him. He was disappointed. Then the surgeon came around the corner and said "Bummer."
I wish someone would say "Hey it could be a lot worse!" But the doctors don't say that. They just keep saying "We don't know everything and we'll have more information later." Big heavy boulder swinging over my head.
I keep getting emails from people telling me to have a positive attitude. But I really think that's unfair. I HAD a positive attitude about the results of the biopsy. I was convinced it was not cancer. I was totally wrong about that and hence didn't prepare myself for the worst. At least now I know better - I should be a little negative so when the surgeons say "bummer" I'm not so completely devastated. Again. If this survival thing is a lottery - I'm a dead woman. . .
And as for positive attitudes and being "chipper all the time" I find it immensely hard to believe that Christ carried that cross with a smile on His face. No way. All the artwork agrees with me. He and everybody who loved Him look pretty miserable. If He was allowed to be miserable so am I.
We don't know the extent of the horrible yet - but the cancer is not confined to my breasts. They found a spot on my lymph nodes. Great. Can't I get SOME good news here? Isn't it enough that I can't have any more children? Does EVERYTHING have to be so stinking bleak? Will Annamarie be deprived of a mother?
Whenever I have that thought I hear all the voices in my head that say "God knows best" and "One day we'll understand how His plan was for the best." That means that if I am slotted to die, I must have been a terrible mother who would have messed her life up something awful. So I don't find that consoling at all.
So I'm not mad at God. But I'm not happy with Him either. I don't want any of this. And the worst part is I still have no idea the extent of the horrors that are about to befall me. That boulder above my head remains horrifyingly anonymous.
Wednesday, January 19, 2011
Leaving Baby
Going into minor surgery today. Had to leave baby with a sitter. First time for everything. Had such a hard time putting her down. Will I be back? Will she cry and feel abandoned when she wakes and I am not there? Will she be scared? I miss her already. I hate cancer.
Tuesday, January 18, 2011
Super Preferred
A little over a year ago my husband and I bought our first life insurance. Our Statefarm rep told us someone would come out to the house to test our blood and ask us questions about our family history. Our rates would be based on these results. "The cheapest rate you could possibly get" we were told "is 'Super Preferred.' But nobody gets that one. It's pretty much Olympic athlete rate."
I got Super Preferred.
I also got breast cancer.
My husband got 'High Risk.' I've spent the last year making fun of him and telling "Super Preferred" jokes. . . needless to say I feel quite confident my life insurance rates will be going up soon.
Super preferred might be a frame of mind that was indoctrinated into me at a young age. "We don't get cancer in our family" are infamous words my mother spouted hundreds of times while we were growing up. She had a case. My grandmother had over 150 direct descendants when she died and not one of them had cancer (except for an aunt and her daughter who both smoked two packs a day for 20 years- no surprise they died of lung cancer. . . go figure).
Sorry nana, I got breast cancer.
You may not know this - and will be horrified to hear it, but there are a whole bunch of people out there claiming that people get breast cancer because they took the "pill," took estrogen or had an abortion. . . I was a virgin when I married two years ago, and the strongest medication I've ever taken is Aleve. . . In fact "Super preferred" is not too far off the mark. The first time I ever darkened the door of a hospital was to have a baby four months ago.
And I got breast cancer.
My whole life I've been a clean eater. Never smoked, never did any kinds of drugs. I won't drink soda, have alcohol maybe once a month. For years I've cooked with whole grains and hormone free meats. I was a juicer, a smoothie freak, and a fan of vitamins and exercise. I mean I earned "Super Preferred." My husband eats candy bars, soda and Taco Bell like it's going out of style. My sister smoked for ten years. And on the new reality show called "My Strange Addiction," there are people out there eating laundry detergent.
And I got breast cancer.
What the heck?!? Where did this come from? What did I possibly do that caused this? One of my friends says "You did something- but you'll never know what it is. . . " What?? That's insane! You mean I could still be doing it now and it will only bring this back down on me again in a couple years? Where does this stuff come from and why did it pick me - the one who ISN'T EATING LAUNDRY DETERGENT?!?
I have been so baffled by this diagnosis I swear I am still walking around hoping that someone will call me up and say "Sorry we made a mistake." They can't mean ME! Not ME!!! We don't get cancer in our family! I'm super blooming preferred! How did this happen?
I have breast cancer.
When I asked my doctor what could have caused this, she said "it's just bad luck." Well, I've never been lucky. The few times I went to the casinos I lost my meager bets almost immediately without a single win. I've never won at contests or raffles or drawings. . . but I sure beat the 1 out of five odds didn't I? (That's what they told me before the biopsy: 80% of the time it's not cancer. Bad odds for someone so unlucky).
Man. I almost wish I could go back and spend the last 38 years eating Twinkies and burnt popcorn. Heck mabey I'll even try some laundry detergent. What a waste! I'm going to Taco Bell this weekend and ordering a chalupa. Obviously they don't cause cancer, because I never eat that stuff and I HAVE BREAST CANCER!!!
I got Super Preferred.
I also got breast cancer.
My husband got 'High Risk.' I've spent the last year making fun of him and telling "Super Preferred" jokes. . . needless to say I feel quite confident my life insurance rates will be going up soon.
Super preferred might be a frame of mind that was indoctrinated into me at a young age. "We don't get cancer in our family" are infamous words my mother spouted hundreds of times while we were growing up. She had a case. My grandmother had over 150 direct descendants when she died and not one of them had cancer (except for an aunt and her daughter who both smoked two packs a day for 20 years- no surprise they died of lung cancer. . . go figure).
Sorry nana, I got breast cancer.
You may not know this - and will be horrified to hear it, but there are a whole bunch of people out there claiming that people get breast cancer because they took the "pill," took estrogen or had an abortion. . . I was a virgin when I married two years ago, and the strongest medication I've ever taken is Aleve. . . In fact "Super preferred" is not too far off the mark. The first time I ever darkened the door of a hospital was to have a baby four months ago.
And I got breast cancer.
My whole life I've been a clean eater. Never smoked, never did any kinds of drugs. I won't drink soda, have alcohol maybe once a month. For years I've cooked with whole grains and hormone free meats. I was a juicer, a smoothie freak, and a fan of vitamins and exercise. I mean I earned "Super Preferred." My husband eats candy bars, soda and Taco Bell like it's going out of style. My sister smoked for ten years. And on the new reality show called "My Strange Addiction," there are people out there eating laundry detergent.
And I got breast cancer.
What the heck?!? Where did this come from? What did I possibly do that caused this? One of my friends says "You did something- but you'll never know what it is. . . " What?? That's insane! You mean I could still be doing it now and it will only bring this back down on me again in a couple years? Where does this stuff come from and why did it pick me - the one who ISN'T EATING LAUNDRY DETERGENT?!?
I have been so baffled by this diagnosis I swear I am still walking around hoping that someone will call me up and say "Sorry we made a mistake." They can't mean ME! Not ME!!! We don't get cancer in our family! I'm super blooming preferred! How did this happen?
I have breast cancer.
When I asked my doctor what could have caused this, she said "it's just bad luck." Well, I've never been lucky. The few times I went to the casinos I lost my meager bets almost immediately without a single win. I've never won at contests or raffles or drawings. . . but I sure beat the 1 out of five odds didn't I? (That's what they told me before the biopsy: 80% of the time it's not cancer. Bad odds for someone so unlucky).
Man. I almost wish I could go back and spend the last 38 years eating Twinkies and burnt popcorn. Heck mabey I'll even try some laundry detergent. What a waste! I'm going to Taco Bell this weekend and ordering a chalupa. Obviously they don't cause cancer, because I never eat that stuff and I HAVE BREAST CANCER!!!
Sunday, January 16, 2011
Barlines
In music when you come to the end you hit something called a double bar line. It's a thick double black line that the music seems to crash right into. When you get there you have to go on. The song or piece is over. Sometimes it's just the movement that is over. Sometimes. . . it's time to applaud and go home.
What most people don't know is that before that barline is something called a cadence. It's a resolution - a series of sounds that combine to tell your ear, "its about to end." Some music theorists would argue that the entire piece of music from beginning to bar line is all about setting up that cadence. In general they have a point. The cadence, or the "closing sounds" let's call them, don't just happen. They are built up and built up and when the barline finally comes, you're all ready for it.
Sometimes life is like music. A wedding for example is a big old cadence; months of courtship and engagement and then a ceremony tell everyone that one stage of life is now over, and another is about to begin.
Sometimes life is not like music. Sometimes, you're going along happy as a clam, three month old beautiful baby girl, happily married and dreams for the future when someone sits you down and says four little words like "You have breast cancer" and you realize you've just slammed into the double bar line with the velocity of a 747 hitting a brick wall.
And there is no going back. The last movement, the one I knew so well, the one I was so comfortable and happy in, is over. There is no repeat sign or stop and rewind button. No matter how hard I try I can't undo those stupid four little words that seem to have cast a dark shadow over every aspect of my life. Everything is changed now.
At first when I heard the news I thought "okay no big deal - I can beat this." Then, as the week progressed and all the doctors appointments and needle prickings began I got news after news. The words "You have breast cancer" are really just a summary it seems of the horror you're about to endure.
Pricks, pokes and probes.
Lots of meds.
They're going to put you in that tube.
Surgery is coming
Radiation is coming
Chemo is coming.
You're going to have to be on drugs - best case scenario for the next five years.
Stop nursing your baby right away.
You're going to get very very sick.
You probably won't be able to care for your baby.
Your hair is going to fall out.
You will never be completely free from cancer.
You will be testing and checking and worrying for the rest of your life.
And then the hardest one of them all-
Chemo burns up your eggs - you will probably never have another child.
Oh - and you might die. . .
I don't know exactly what the future holds for me and cancer. But I know that I'm not in the same place I was a week ago. What I wouldn't give to go back! To make that doctor take back those four stupid words so I could go back to learning how to be a mommy, taking care of my house and teaching my students. But I can't go back. The barline has come and gone, and I am already reluctantly immersed in a new movement, the opening bars of which seem to be horror, terror, fear and doubt.
I know no one wants to read that. And believe me I wish I could put a better spin on it than that, but I intended this blog for an honest expression of my experiences and that is where cancer has begun. Otherwise would just be to lie so everyone feels better. I don't know if there are even more movements in this piece of music I call my life, or perhaps this is the last one and it will be time to go home at the end. But for now, the ensuing darkenss has forced me to ask if there is a home to go to and question every dot and line I have lived in this symphony for the last 38 years. I would say I hope, but perhaps that comes later. . .
What most people don't know is that before that barline is something called a cadence. It's a resolution - a series of sounds that combine to tell your ear, "its about to end." Some music theorists would argue that the entire piece of music from beginning to bar line is all about setting up that cadence. In general they have a point. The cadence, or the "closing sounds" let's call them, don't just happen. They are built up and built up and when the barline finally comes, you're all ready for it.
Sometimes life is like music. A wedding for example is a big old cadence; months of courtship and engagement and then a ceremony tell everyone that one stage of life is now over, and another is about to begin.
Sometimes life is not like music. Sometimes, you're going along happy as a clam, three month old beautiful baby girl, happily married and dreams for the future when someone sits you down and says four little words like "You have breast cancer" and you realize you've just slammed into the double bar line with the velocity of a 747 hitting a brick wall.
And there is no going back. The last movement, the one I knew so well, the one I was so comfortable and happy in, is over. There is no repeat sign or stop and rewind button. No matter how hard I try I can't undo those stupid four little words that seem to have cast a dark shadow over every aspect of my life. Everything is changed now.
At first when I heard the news I thought "okay no big deal - I can beat this." Then, as the week progressed and all the doctors appointments and needle prickings began I got news after news. The words "You have breast cancer" are really just a summary it seems of the horror you're about to endure.
Pricks, pokes and probes.
Lots of meds.
They're going to put you in that tube.
Surgery is coming
Radiation is coming
Chemo is coming.
You're going to have to be on drugs - best case scenario for the next five years.
Stop nursing your baby right away.
You're going to get very very sick.
You probably won't be able to care for your baby.
Your hair is going to fall out.
You will never be completely free from cancer.
You will be testing and checking and worrying for the rest of your life.
And then the hardest one of them all-
Chemo burns up your eggs - you will probably never have another child.
Oh - and you might die. . .
I don't know exactly what the future holds for me and cancer. But I know that I'm not in the same place I was a week ago. What I wouldn't give to go back! To make that doctor take back those four stupid words so I could go back to learning how to be a mommy, taking care of my house and teaching my students. But I can't go back. The barline has come and gone, and I am already reluctantly immersed in a new movement, the opening bars of which seem to be horror, terror, fear and doubt.
I know no one wants to read that. And believe me I wish I could put a better spin on it than that, but I intended this blog for an honest expression of my experiences and that is where cancer has begun. Otherwise would just be to lie so everyone feels better. I don't know if there are even more movements in this piece of music I call my life, or perhaps this is the last one and it will be time to go home at the end. But for now, the ensuing darkenss has forced me to ask if there is a home to go to and question every dot and line I have lived in this symphony for the last 38 years. I would say I hope, but perhaps that comes later. . .
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